the Upside of Down (syndrome, that is)

The Party

2010-05-30T22:52:00.012-04:00

Not long ago I faced my future and my past, face-to-face, in the life of another woman. It was at a 1st birthday party. A birthday party for a little girl with Ds who had been adopted. A girl who had been adopted by a family that had hoped to adopt MY little one with Down syndrome. The birth-mom, birth-grandma and birth-sister were all at the party, as were Lauren, Ada, Adrienne (our respite provider for Ada) and me. There was talk that the birth mom "Amy", may not come to the party as she didn't like crowds or being around people she didn't now well. But she was there and when we sang "Happy Birthday" to her/their baby, she was overcome with emotion and left to go sit in her car. That simple shift in Amy's demeanor while anticipating the singing of the song and then hearing "Happy Birthday dear Baby" took her by surprise and took me right back to a place I once envisioned myself. I went out to her car to talk to her, knowing that I may never be in that situation again-one in which I was watching another person (very different than me, yet the same) show me my feelings. It was both surreal and life-affirming.

Could that really have been me? Did I really come "this" close to writing an adoption plan for Lauren a.k.a. Anna a.k.a. Emerson?? Yes, I did and frankly I am okay with that. We don't always get to choose what we take on in life or what we want. But, I chose Lauren. When Amy left the party to collect herself in her car, I knew that a piece of me went out to the car with her. That shadow of emotion spoke so directly to me because i've thought about it a hundred-million times. How could I maintain a relationship with a family that was raising my daughter? Would I look forward to the photos and updates or would they break my heart over and over again? How would I feel if she got hurt or, for that matter, got picked to be in a calendar?

After leaving the hospital with Lauren we were able to stay at a friend's home while we sorted out the details of the adoption plan. So much was up in the air as the 2nd family we had chosen was out of state on vacation and we were not well-informed about inter-state adoption policy. We did not plan on taking Lauren to our home as we didn't want to confuse our other children about what we were doing.

We left the hospital on Friday and knew that on Sunday, the social worker would come pick up my baby to take her away, to, eventually, meet up with her new family. My baby would be taken away in a strange carseat and I didn't know when I would see her again.

It was truly more than I could bear. Having gotten to just that point, I don't know how some mothers have the strength to go forward. There is nothing selfish about adoption on either side of it. I sat in that friends home holding Lauren and howling with tears of pain at the thought of sharing her with another family. My heart was literally melting away in little piles at my feet.

My love for this little person was so real, so intense, so life-altering. I found Lauren to be the most precious little person I had laid eyes on in a very long time. Holding her and gazing into her sweet face erased all of the fears I had about Down syndrome. She was here and perfectly formed and meant to live. And I did not want her to leave me. I did not want to get pictures of her with another Mommy and Daddy, with toys that we didn't own or wearing clothes that we hadn't seen before. I didn't want someone else telling me what she was doing or what she was working on. I wanted that all for myself.

While Amy seemed mostly at peace with her decision, I know in my heart that I would not have been; it would have haunted me and hounded me for...ever. I needed to chose Lauren so that I could become a better version of myself and open myself up to a world where the possibilities were unknown, yet, endless. I truly admire Amy for giving this family a most treasured gift and my heart goes out to what might be a daily struggle for her to reconcile her decision. Her-their baby is beautiful though, loved by many and given the choice of life. That is perfect.

their story is not yet written.

2010-04-04T21:57:00.005-04:00

Today is Easter which has nothing to do with what's on my mind except in a very roundabout way regarding God and Jesus and how God must have incredible faith in us. All of us. Including kids like Ada and Lauren who have many challenges but much hope.

Hope is the best isn't it? I run out of hope sometimes because I get bogged down and worn out and sad that it is so hard to have the life I want and deserve. Why can't I have lush green grass in my back yard instead of a patchy dirt lawn that the kids enjoy but don't get to enjoy the way I want them to? Why can't my house be clean and free of clutter and peaceful? Why?

Some people believe that children like Lauren will never grow up to have babies. There are a few reported stories of women with Ds growing up to become Mommies. I don't know yet if that is what would be best for Lauren. For Ada, it was apparent years ago that she wouldn't and really shouldn't become a mommy. Yes, she is an incredibly loving and patient person but she tires quickly of responsibilities and doesn't have the common sense to know that a child needs to be fed and played with and bathed and cuddled - every day.

Lauren's story is not yet written.

Having Down syndrome is part of who she is but not all. I can't see into her ovaries to see if it is rich with perfect little eggs ready, someday in the far future, to be united with a life-equaling match.

Perhaps Lauren won't want children because she's so busy with her law career or writing a book.

Her favorite past-times right now are throwing anything and everything with a mighty side-arm, saying NO and cruelly smashing her baby doll into her little stroller.

When I look back at my own childhood, I never imagined that I would be the mother of 5 challenging children, living in Michigan, working as a counselor, still trying to find my way. Our past is a big part of our future, like it or not. As much as we try to accept and work through our issues, they rear their ugly little heads when we let down our guard, and/or find ourselves in moments of doubt. Sometimes I just want to throw in the towel and say..."OK, you win" (whoever you are). I get it...life is hard and unexpected and not much fun at times. I get that.

But, what are we here for, if not to find what our limits are and then exceed them? We didn't "come with a manual" Dr. Spock, much to the chagrin of Moms and Dads everywhere. We are all stories to be told, myths to be busted and labels to be either represented or mis-proved. We don't have to do anything or everything. We don't have to fulfill anyone else's expectations other than our own...we are both paradox and cliche. We are human--- we are sublime-- we are spiritual and ethereal.

We are all Lauren....a little girl full of promise and surprise...hoping beyond hope, that we will reach our full potential, whatever that may be.

Having Lauren

2010-03-16T22:03:00.006-04:00

Having Lauren is like sitting on the shore of the ocean and the waves just keep washing over you...over and over...surrounding you, drowning you, smoothing out the rough edges and sometimes scaring you. Waves of joy and peace and sorrow and hope.

Having Lauren is like taking the piece of the pie that is a little lopsided, oozing out the side and perhaps mishappen and putting it to your mouth ..to taste absolute perfection.

It's being surprised and expecting the unexpected.

Having Lauren means taking walks around the block with a girl in Red Cowboy boots who sometimes just wants to sit or crouch down and look at you for awhile.

Sometimes Having Lauren means being ready to die because you have seen the perfect picture of your child .(dressed as a Cowhand with her perfect little fingers delicately holding the lasso).

Having Lauren means walking into a new school and looking forward to the new people she will bring into your life because of her infectious smile, outgoing personality and incessant need to give everyone "the rock" and a high-5.

Having Lauren means nicknames like LoLo, Bitz, Bacon Bitz, Bisser, Wisser and Stinker.

She is all that I could want in a child and more...she stretches me in uncomfortable ways and she also gives me that deep satisfaction of knowing I'm doing the best I can.

Having Lauren means rethinking what perfection looks like and seeing other kids as missing something when they DON"T have the remarkable features created so lovingly by the extra 21st Chromosome.

Having Lauren means eating my words because I made such a stink in class one day because a textbook described kids with Ds as Stubborn..and, well, that is a word I would use to describe Lauren (sometimes).

But, it is also a word I would use to describe any 2 year old.

Having Lauren means that when therapists who have become jaded and impatient due to too many years in their chosen profession say things like "she is being Downsy", I can turn the other cheek and imagine Lauren graduating from High school, dancing at her Prom and having friends over for a sleep-over.

I can also see very clearly the fact that her entire family absolutely adores her and delights in her...not to a fault...believe me, my 7 year old tires of her just as he would anyone who takes him away from him Mom and messes with his stuff.

But they are also better because of her. Because....

Having Lauren means that each day will have an additional layer of interest and taste. Each day will bring out something different in us and each day will prove to be worth living...because of a very exceptional little girl who walks around the block in red cowboy boots.

some kids take a whole lifetime to raise aka. i'm still learning how to be a mom....

2010-02-08T21:27:00.007-05:00

this has been rattling around in my head for awhile especially in relation to my son, Nolan. Nolan is newly 22 and one of the most unique young men you will ever meet. He wears his hair in a very unkempt Jimi-Hendrix-meets-Jimmy-Neutron way. He's white, he's black; he's cool, he's nerdy.

He's my son and, yet, he's a stranger.

Nolan was a gift given out of very unnatural and unnerving circumstances. Despite the situation, I kept Nolan. I said Yes to him and knew with all of my heart that I would love him always. He was born at home on a snowbound Illinois night; only a neighbor was able to reach our home before his first lusty squall. He was calm, alert and absolutely gorgeous. That was then: back when I thought that love alone was enough.

Raising a bi-racial child is something i entered into blindly and I don't know that i've done that great a job of it. I've been stupid, i've been naive and i've fallen short of the mark. Still, Nolan remains my son: he loves me, stays with me and assures me that i've done nothing wrong. He blames no-one for his faults, his tendencies, his insecurities or his interests.

I wish I would have know then what I know now - that it takes more than two loving parents to help a child become a man: it also takes guts and risks and knowledge. It takes perspective and patience and strength. I see now that I didn't risk enough in the way of helping Nolan get to know what it's like for other black or bi-racial children. I really thought that if I accepted him enough, he wouldn't need to know anything else.

All children are a mystery to be solved, but none moreso for me than Nolan. Not only is he my first son but he has the IQ of a gifted person, mad skills in music and math, huge hair that I call the 8th wonder of the world, a snowboarder (who passionately despises Sean White), a gamer (Hello? World of Warcraft? can I have my son back?). He isn't into HipHop or Roca Wear - more like Urban Outfitters and Express.

He is comfortable in his own skin and ever since his birth I've had to ask my self if I am? Am I comfortable with who Nolan is? It's not an easy question or a simple answer. I love him, I pray for him and I want him to know that Love and Acceptance...but I don't know if he ever will because...because perhaps, I don't know how.

Nolan got in some trouble recently at school for having marijuana in his apartment. It shook him up a bit and as he explained what happened I went right back to that place where I just want him to know that I love him and want him to be his best. It reminded me of how much I just need to show him my acceptance of him but I feel like I need to go back 22 years and start over again. He's home now and I am happy that he's here. I know how to love him. He is my first son, the one I got to learn with and I will continue to do so...forever perhaps.

School is in session...

2010-01-26T21:28:00.010-05:00

and I have pictures to prove it! Lauren is now (almost) exaclty 2 1/2, old enough to begin attending Ida's preschool for the hearing impaired. Some of our favorite people are from Ida so we have been looking forward to this for awhile.

Here is a quick snap shot of her first day. she even rode the bus home but my camera was in her Elmo bookbag so I didn't get any pictures yet.

Outside her locker agreeing to a quick pic with Mom.

Eating her snack all gone - she already has earned a Masters degree in eating, this is just a refresher course. Notice the little pilot cap for keeping her hearing aids in place. In theory, at least.

Block time with her new friend, Chloe

Music and Movement time - just look how tiny she is! But, she holds her own and has a lot of presence :)~~~~~

Calendar and story time - dont' let the picture fool you - she was up plenty according to her teacher, Joy.

So far, so good. No tears from LoLo or me.

a video worth watching

2010-01-19T21:50:00.004-05:00

Please watch this video montage put together by a Mom from my online Down syndrome support board. She is the mother to a little girl named Gabby who was loved and wanted, just as her other children are. The fact that Gabby would have Down syndrome did not sway her love, commitment or longing for her.

She already had 2 beautiful daughters and Gabby brought the count of beauties up to 3. As you will see, Gabby was absolutely precious, vibrant and very loved. As planned, Gabby had open-heart surgery, something quite common for babies born with Ds. The surgery went well but the recovery did not and Gabby did not make it.
The commentary on the video reminds us of how even the difficult parts of life: the parts we don't choose, become the most important, impactful and amazing...anyway...the video (and yes, Lauren is in there, too!):

Motherhood: it's like Deja Vu, all over again....

2009-11-30T21:20:00.003-05:00

So, a couple of weeks ago I was with Chaz and Lauren at the children's hospital at University of Michigan waiting for Lauren to get her hearing tested. This had been a much longer than necessary amount of time spent at the hospital - who knew that a 2 year old could go 9 hours during the day without eating?? We're in the parent's waiting room waiting for the nurse to come get us and tell us that Lauren was absolutely fine.

While there, I began chatting with a couple who also had a daughter they were waiting for. Her procedures were much more intensive, serious and long than Lauren's mere ABR. This Mom, like me, had been blessed with a child, years ago, who has required much of her and proven time and time again, that she (the daughter) was up for the task and given Mom the opportunity to dig deep into herself, over and over again, to find the strength, patience, nerves and grace to face the next day with the same, un-bewildered face that the rest of us are used to living with.

(If you haven't read this blog before then you don't know that my oldest daughter, Ada, 24 years, has Russell-Silver syndrome and autism: a charming & puzzling combination of smallness and drive.)

While waiting and talking, Chaz commented that I'd been "doing this for a long time" and it is so true. When my first born was given to me, 24 years ago, I was catapulted into an unknown world: one of diagnoses, uncertainties, angst, dr's visits and waiting.

Fast forward many years and here I am, again: raising a child who is different than most, raising a child with an uncertain future and lots of unknown quantities.

But, you know what?It feels good. It is familiar, it is uncertain and it is hopeful. Ada taught me more than I can ever say. I wish I hadn't burned so many tears worrying about her but at least I don't have to do that for her little sister, Lauren. While Lauren may not always get the best of me: 45 years old, arthritic, fibromyalgic, tired, worn-down and weary--- at least she gets a mother who isn't worried about every little thing: one who knows that her potential is every bit as important as her diagnosis and that no amount of worry ever adds up to the outcome.
I have a perspective that cannot be bought or paid for. People describe me as calm, accepting and peaceful. Hard to believe but it's true. My children have defined much more than any thing else in my life.
So, as I sit and stack blocks for the 1 gazillionith time, I remember that this is important: this is what my child needs right now and I know that because I learned it from my firstborn child.

Thank God we get do overs.

When reality hits you in the face.

2009-09-17T21:42:00.013-04:00

One of my callings in life is that of "grief counselor". Ever since the loss of my precious and beautiful son, Gaven (pictured here), in 2002, I've gravitated towards others who live with grief. In the time following this loss, I joined and then began facilitating an infant-loss support group.

Then, in February 2007, the same day that I had by first OB appointment for my pregnancy with Lauren, I began a course of study that would lead me to a masters degree in counseling.

In the past few months, the grief agency for whom I was leading the infant-loss group,Gabby's Ladder, wanted to employ me as one of their professional grief counselors. I was both thrilled and nervous to take on such an endeavor.

Today brought me face to face with a dilemma that I could not have predicted or asked for. I was asked to call a mom who had lost a baby last month. We made an appointment for today.

After she filled out her initial intake I asked her to tell me about her baby and her loss. It is then that she told me that she had terminated her pregnancy because an AFP revealed that her baby might have Down syndrome.

It took me a moment to process this information. Did she really just say that after she found out she was pregnant with someone like Lauren she decided it wasn't worth it? It's hard not to take this personally, though I know that it wasn't and that as a professional, I need to stay on task; she is a grieving Mom who came to me for support.

As our hour and a half session progressed we explored her feelings and how she has dealt with this very difficult decision. I understand that this was hard for her. She delivered a tiny 20-week gestation baby and held her lifeless body for 7 hours. She has pictures, foot & hand prints, clothes and other mementos of her pregnancy and her preparation for this baby. But, she does not have her daughter.

I am not angry at her but I am angry at a World that diminishes a precious human life because it is not the thing that was expected. And, I'm angry that doctors still don't know how to tell an expectant Mom and Dad that having a baby with Ds is going to be a good thing. I'm also angry that this woman was tested for "abnormalities" like Ds and that in the name of making an "informed choice" she/we/everyone has to decide who is worth having and who is not.

What makes this issue even more compelling is the debate as to whether or not children with Ds are in fact a blessing or a "burden". An OB, who shall remain unnamed because I think she's stirred up enough bad will for herself to last a lifetime, posted something recently that due to the 'advances' in prenatal testing, there is the possibility of Ds being eliminated, or at least reduced. Alot of people think that would be okay.

Alot of the moms on my Ds board went toe to toe with this woman and asked her to justify her stance and her attitude that doctors don't need to tell expectant parents that having a baby with Ds can be a blessing. Instead, she believes it is only necessary to tell them what a struggle it will be.

When parents wrote in to tell her that "hey, we're doing this and it's great so please tell parents both sides of the story" she argued that we can only speak for ourselves and that we were biased and were basically fooling ourselves.

Am I fooling myself that continuing my pregnancy with Lauren was the best choice for her and my family?
Do I ever wonder what my life would have been like, never knowing Lauren?
Have we really been rewarded for choosing Lauren?
Was this a pro-life issue or was this just a matter of avoiding guilt and heartache?
Is the absence of guilt and heartache associated with a termination balanced by a feeling of peace and happiness?

All I can say is this: Lauren has blessed us in a way that I cannot really explain. She has brought new and wonderful people into our lives, she has forced me to reexamine my values and opinions, she has shown me how a simple gesture such as a smile or kiss can transform my mood and give me hope. She has a 'can do' attitude that I wish my other children would adopt and a determination that makes me want to fight so hard for her happiness.

Yes, Lauren is different than most children but that is such a good thing. I thank her for the joy she has brought to my other children and don't want to imagine their lives without her in it. They get such pleasure from being around her.

I realize that not everyone will get it: not everyone is cut out to say "yes" to a baby with Down syndrome. But, we did and I am oh, so happy about it.

Through their eyes....

2009-08-31T22:07:00.009-04:00

Ada at Special Olympics, 2008

Ever since my first child, Ada, was a little girl I've wondered what the world looks like through her eyes. We are all unique and have our own vantage point, but some people 'stand out' a bit more because of their differences.

Ada has a small pixie-face, an open, trusting smile and long, beautiful fingers, all wrapped up in a body the size of a 10 year old child. She is 24 years old and has been this size since she was about 10! She has a rare from of dwarfism called Russell-silver syndrome, as well as autism. She is truly unique!

It took me a long time to forget how different she looked from other people because people just love to stare at her. She smiles, I try to.

My mantra was always this:
she is just as different from you as you are from her.

And, I believed it..and still do. Not everyone comes in the same, general size or shape and as human-beings, we have to accept this.

But, it's not easy for others to accept that my child doesn't fit their image of what a child should look like. Oh well.

I have spent countless hours worrying about Ada, crying about her challenges and trying not to take all of the comments and stares so personally.

Now, I have another little girl, Lauren, and again I wonder what information she is receiving from the world. In her mind she is charming, charismatic, cute as all get out, funny, interesting, curious, intelligent and loving. She can climb mountains, knock down mountains and conquer the world.

I know that not everyone is going to see that in her, just as not everyone recognizes Ada for the peaceful, accepting and fun-loving young woman she is.

When people see Lauren, some see the traits of Down syndrome...the almond eyes, the awkward walking style, the signing in place of speaking....and, they think about it what they will, based on their individual makeup.

I imagine that they place some sort of value on what they perceive as her most obvious attributes: Is she as cute as a typical child? How well is she doing for a child with Ds? How much time does her tongue spend outside of her mouth? How hard must it be for her Mom to raise her? Is it worth all of the trouble?

the answers:
Certainly!
Well!
Not much!
As hard as it is raising any child.
So much.

I have spent almost half of my life working as a mother and trying to get inside the heads of my children, especially my two daughters with special needs. I want to know what they know and see what they see. And, I want others to see in them what I see, though I know that will only happen occasionally and with people who make an effort.

I don't know how I got so lucky to be blessed with these amazing children; I just hope that I can someday be worthy of their praise.

Now, Lauren and Ada have one another to love and accept. They get this love and acceptance from others, but it seems right that they can enjoy it from their own unique perspective, without the weight and judgment that the world puts on them.

Zoo Trip - LoLo style

2009-07-29T21:06:00.012-04:00

Today, I went to the Toledo Zoo with Gabe, Lauren and Ada - it was a spur of the moment excursion; you know, those outings that usually turn out the best because the lack of planning means that nothing could go wrong.

Gabe was in charge of the camera for most of the day - so the pictures, if they didn't include him
were probably taken by him...my budding Conny Wenk!

Close up at the polar bear exhibit....
but Lauren does not want to be a part of
my Nanuck of the North photo shoot.

Gabe modeling one of the many animal masks at Nature's Neighborhood ( a very fun, and interactive Zoo-playground)

Getting some pointers from professional Carousel rider-Gabe.

Sweet as honey, straight from a bee.

Definitely a good egg...

Chilaxxin in the tree house...

and getting ready to roll on out....

Smug

2009-06-26T21:30:00.011-04:00

Growing up in the beautiful Park Hill neighborhood of Denver, I often felt and was viewed by neighbors as practically on orphan. At 6, my mother left me and my 3 siblings to pursue a life that did not include young, demanding children. I often came home to an empty house and all 4 of us young Gould's, more often than not, had to fend for ourselves between the hours of 3 and about 6:30 when my father returned from work. If it weren't for some amazing and watchful neighbors, I know that at least one of us would have gotten into some serious trouble.

When daddy Hal did come home, the day's punishments were doled out as he surmised the damage done on our ramshackle 5-bedroom home. Eventually, the wooden slats that made up the balcony porch were exhausted, either on our behinds or because we slid them into a hole that was created when a beam was removed in the space between the living and dining rooms. What was once a peaceful setting for reading Judy Blume eventually became a death-defying foray out of the back bedroom door.

But, then we (or most likely, I,) would go to the King Soopers' store with my dad. This was a welcome retreat as the store held 1: Food! 2: Time alone with my papa. My dad was and is an incredible cook. He learned to cook after my Mom left by studying books by James Beard and Julia Child. No ordinary slop would do for his children. Pizza ?- uh uh. Macaroni and cheese ? Hell to the Nah.

My father's journey through kid-friendly food was almost non existent. Instead we enjoyed meals that would make most modern-day parents balk. The food was both interesting and scary and while it was great to have a home-cooked meal every night (as in we almost never ate out), those meals often came at 9:00 p.m.- after hours of chopping, sauteing, carmelizing and waiting.

Some of my Dad's great recipes were: Green Chile (for which I can now admit to skimming from the crock pot from the time I got home from school until my dad returned from work - it was incredibly good), Chicken Cacciatore, Pasta Carbonara, Beef Stroganoff, these special eggs on toast, beef stew and cherry coffee-cake which would bake while he developed film in our basement darkroom . Really there were so many wonderful, delicious and incredibly time consuming dishes.

One of my dad's proudest moments which turned into one of his sourest (which surely makes for good stories later on) is the Great Salmon Aspic Debacle of '79. Aspic, in case you don't know is a food that is congealed in gelatin. This took days to make, preserve, set, whatever. My dad had us all sit at the table for the grand unveiling of this dish. We usually were pretty okay with what he made (despite my vegetarian leanings and my brother's vegetable-hating ways. So, he brings this dish to the table - a large 18" x 24" inch pan of indescribable gourmetness. As he mindfully cut fair-sized servings for each of his hungry children, we held our forks: ready but reluctant. I don't remember which of us started the lament on this particular dinner but it soon became a cacophony of anguish and complaint. Not a one of us could quite swallow this particular delicacy and I understand now that it was just "too good for children". Still, it upset my dad....

Anyway, back to the title of this blog post. I am a Mom to 5 children and sometimes I think I do a pretty good job of it. My kids know I love them and I can feel it in my gut when I need to spend more time with them or listen to them or comfort them. Not so, the little guy next door: one of Gabe's best friends. This little dude, whom I will call Isaac is a dear, intelligent boy who does not know what it means to have someone looking out for him at all times. His mother has a lot on her plate but she also leaves an awful lot up to chance. It is not unusual for Isaac to spend 8-9 hours a day at our house with nary an inquiry from Mom.

So, tonight, while Gabe and Isaac splashed and laughed in our little backyard pool, I talked to him about his life and he (at 6 years of age) confessed that his mom is gone alot and he doesn't understand why. Gabe mentioned that it's "a good thing he was us". Gabe is a very secure kid, sometimes extremely cocky, but with a soft-heart. He loves to welcome you into his world and surround you with his inclusivness (even if it is on his terms).

I know what it's like to be that child and I know that as that child you don't always know what is missing, or how to ask for what you want or what it felt like to be completly loved. Life is uncertain and you become accumstomed to that uncertainty. I don't do that to my kids and hope that I never will. Sometimes I resent the fact that I spend so much time with Isaac but on the other hand I know that it's important and not that more effort to have one more to feed, listen to or play with. I hope that someday he will return the favor to another child who may be slightly lost and alone.

As Isaac finally returns home and I finally get my own children into bed, I feel less smug and more relieved: both that we have made it through another day and that we showed others that we cared.

Sometimes, it's confusing.

2009-06-18T22:07:00.005-04:00

At times, having a child like Lauren - one with Down syndrome - is confusing. There is so much information 'out there' and I usually don't feel alone on this journey, but still, there is so much to consider, sort through and try to understand.

As with so many other things, there is such a wide range of developmental ability when it comes to a child with Down syndrome (or any child, for that matter). But, i'm asked on a regular basis questions to the effect of "how smart is she going to be"?

No one actually asks that but that is what they want to know - as if I know. I don't know how smart Lauren is going to be any more than I know how tall she is going to be, what her favorite song is going to be 6 months from now or whether she'll prefer flip-flops over closed-toe shoes.

I do kind of wish i knew though...I find myself torn between this feeling of believing that the more we work with her, the more therapy she receives, the more we challenge her, the more capable she will become and another train of thought that tells me that she is going to become who she is meant to be just by being with us.

I read about other kids with Ds who seem to be doing so well and I am both ecstatic and jealous. There are many people with Ds out there doing exciting and remarkable things and I could not be happier about that. Sometimes, Lauren is that child doing so well and other times she isn't. I know that she is not going to be the brightest child with Ds that there ever was, and I also know that she is not going to fail. I wish I could just be all right with whatever is to be..perhaps the fact that it is such an unknown is what confuses me.

What do I want for Lauren? I want her to know that she is accepted by her family and friends and that she does not have a bunch of limitations placed on her by others. I also want her to know that she is okay just the way she is: she doesn't have to have the biggest vocabularly or the fastest backstroke....she just has to be the best that she can be.

Tonight at Wendy's we met a father raising a teen with Ds and he told me "don't let others decide how well she will do". That's good advice...I hope I can follow it!

Pictures

2009-05-31T22:35:00.007-04:00

school visit...

2009-05-20T21:34:00.003-04:00

Our wonderful teacher-consultant Marge set up a visit for us today at the Ida hearing impaired program. Because Lauren has a mild-moderate hearing loss she qualifies for this program and it was wonderful. The teacher is very outgoing, social and sweet and all of the kids (all 4 of them) are very social, speak very clearly and are very close to one another. They do all sorts of typical preschool activities with a special emphasis on language development. They do not use any sign-language (thanks for the memories, Alex and Leah) but rely completely on the spoken language.

Lauren can start as soon as she is 2 1/2 years old....aka... in January 2010. That is probably the hardest part for me to swallow. I talked to many people there, including the program director and they recommended that Lauren start at 2 1/2 in order to get the most out of the program.

LoLo isn't even walking yet but I know that she will be relatively soon. I want her to be able to keep up with the kids in as many ways as possible. It's hard to not be afraid of her being left behind developmentally though i know that she will shine in her own way.

Gosh, Why does everything happen so suddenly, no matter how long it takes?

Lauren Love

2009-04-29T22:06:00.006-04:00

After yesterday's blog entry, I knew that I needed something more positive. And, I have it. Gabe, Lauren and Davrin. Lauren is such a big love muffin and really brings out the best in the boys - they love making her smile and totally get into her accomplishments and antics.

Today I had to drop snack off at Gabe's school and had Lauren with me. I set her down so that I could go back to the car to get the watermelon I had included. (FYI I was supposed to bring snacks for the whole week but was in a fog the first part of the week so didn't send anything in. Today, I made up for it and allayed my guilt by spending about $30 bucks on snacks for Gabe's classmates)
Anyway...when I went back in, Lauren was in performance mode, shaking her head and moving about. The kids were asking her questions and then waiting for either a yay or a nay. It was so funny!

Gabe loves making Lauren laugh and if you could hear the sweet sound of her you would know why. It's so unique, so pure and so wonderful. Gabe goes to the greatest lengths to get her to giggle but it fits him as he is so active, energetic and persistent. If Lauren picks up anything from Gabe, let's up it's the persistence!

here are some pictures of my sweet boy, Gabe and LoLo
Gabe is one of the greatest people I know. He has so much energy and enthusiasm and emotion. He's also incredibly smart and self-assured. I admire him in many ways and he has taught me so much as a parent. He tries me to my very last nerve but it's always worth it.

Life as I know it...

2009-04-28T21:30:00.003-04:00

it's been one of those days, I suppose. Not enough sleep, too much stress and some surprises thrown in for good measure. Lauren was sick the past week or so but is doing much better, so much better that sleeping has become her least favorite past time. I like sleep and I seem to need lots of it. Lauren...not so much. Kids seem to find sleep pretty pointless most of the time. Just last night I talked to Gabe about it. He swears that he is never tired and that he never actually falls asleep. I told him what sleeping does for us and he didn't seem very sold on it, even so.

So, what else? The house is pretty much a mess most of the time. The dishwasher is broken in that it leaks water because there is a clog somewhere in the drainage system. The thought of hand washing dishes isn't over whelming to me; nor is it something I can see doing from this point forward. But, on the big scale of things not a big deal.

These things are harder to take:
A friend of mine emailed me a couple of days ago to let us know that her daughter, who we thought had beat breast cancer a few months ago, is now at U of M because the cancer has spread to her brain and there is a very poor prognosis. She is basically at U of M to receive treatment that will alleviate her discomfort.

and this:
a family from our church lost there little boy to Zelwegger's syndrome last year and gave birth to a beautiful baby girl this past December. I just found out that this baby has the same congenital syndrome - with a better prognosis - but it's rare to live past 2 years.

Everywhere I turn there are issues and challenges...and yes, blessings and amazing things, too. But, it is truly hard to feel grateful at times. I know how lucky I am to have a home, healthy and happy children, an education and a future. But, geeze,,,my husband and I really don't get along much at all and we don't see eye to eye on much of anything. Home feels like a battle field at times. There are lots of reasons why and I do plan on getting help for it: help in understanding what is going on, what I do to contribute to the problems and what we can do to make things work.

That's it for now...I needed to get that off of my chest.

(almost) Wordless Wednesday

2009-04-21T21:03:00.014-04:00

Lauren and Marge - we "heart" her. She works with LoLo on hearing skills. Lauren absolutely adores her and if you met Marge, you would know why!

Lauren wearing her beautiful hand-me-down dress from Naomi; her friend with Ds from Dundee.

Happy, Happy Lauren! She LOVES the camera! check out the bangs! Who would do that to their child?

Have you even seen anyone this happy with a bottle?

Just my cute girl~

not too much to say but wanted to let you in on the fact that 1. I'm trying to get rid of those ridiculous ads that show up on my blog. It's not as easy as you think to undo them.

Favorite things - LoLo style

2009-04-18T22:20:00.002-04:00

Lauren has been up to lots lately but I'm mostly interested in sharing with you some of her favorite things as I think they may give you a window into her soul.

Puffins cereal
throwing things
chewing on my toothbrush
watching us play frisbee (this cracks her up)
bubbles
pulling the cat's tail
food, glorious food
her sister, Ada
stacking blocks (she's up to 7)
flipping through books
wagging her finger at us, mocking our " No, No Lauren"

Lauren is a bundle of energy and emotions. Don't mess with her unless you are prepared to deal with the consequences. Lauren has feelings and expressions and needs and wants and desires. She is tiny and mightly and can hold her own. She gets the attention of all around her (picture her giving high 5's to my son's entire soccer team today). There is no stopping this little lady.
And that is just the way we like it....

Toddlers and Tiaras

2009-04-08T21:43:00.004-04:00

A.K.A. Crazy Mothers on Parade A.K.A.See you on Springer in 20 years
I am Assuming that anyone reading my blog would not also be a fan of this brand of child rearing (or abuse)... I was flipping between Chopped and this show last night and could barely watch it without wanting to hurl something, perhaps my dinner, at the T.V. It was like a train wreck - you know it's bad and painful and horrible, but you still want to see the end result.

On Toddlers and Tiara's, perfectly typical little kids are made into Star-Lettes and Boy-Toys. They primp, pose and parade around the stage, at the command of their parents. Do they want to please their parents? Of course they do? Do they do what their parent's tell them to do? Mostly, yes, but not all of the time. And when they don't, oh boy, look out!

It's natural for some little girls to play dress up, put sparkly powder on their faces and act out little dance routines. Signing them up to do it for a prize is ...well, kinda wacky. It's like signing up your 2-year old for a pie eating contest. Sure, they'll love the pie, but is it necessary to find out how much pie they can eat?

On last night's episode were 2 brothers (aged 2 and 3) and the mother who was very passive-aggressively 'encouraging' them to perform. She actually went onto stage with them and told them each thing they had to do. These poor kids didn't know the stage from their bedroom floor but Mom was there acting like this was important for their development and success as a human being. They tried so hard to please their Mommy - and that seemed to be the point; to give these parents, through their children, something they never had themselves: unconditional love and regard.

As a school counselor-in-training, I find this so disturbing. Every day, I see kids who have lost their parents, have a parent in prison, are dealing with neglect and abuse and have to experience things that would stop some adults in their tracks. I live in a typical, medium-sized community and yet, even here, there is so much pain and sadness caused by the randomness and uncertainty and unpredictability of life.

These pageant parents much believe that what their doing is okay, and maybe even great. I just think it's a shame that they don't see their children as beautiful enough, smart enough, talented enough or charming enough just as they are....without spray-on tanning, pancake makeup and revealing clothing.

anyway, those are my thoughts....

the Talking Hands

2009-03-30T22:26:00.004-04:00

Lauren is 'verbal'! It is so exciting and fun. She may not have a great grasp on the English language but she has 10 good, solid baby signs that she is using. This is huge to us because Lauren has a hearing impairment.

She is at an age where she is quickly and proficiently picking up new signs. I think I just need to learn some new ones so that I can teach them to her. There are lots of kids, with and without Ds who know a ton more signs than she does, but LoLo is doing great!

Right now, at 20 months, she can sign

Mama
Dada
Milk
Sleep
More
Eat
Baby
Ada
Bye-Bye
Duck

She also says Dada, Ada and Duck. I'm so proud of her. I cannot tell you how worried i've been about her speech development - the Down syndrome coupled with a hearing loss does not equal a great prognosis. But, she is showing so much progress, enthusiasm and aptitude that I just had to write about it.

Advocacy anyone? Everyone?

2009-03-27T14:32:00.006-04:00

"Advocacy: The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support."

Everyone is an advocate for something, right? Either you are your own advocate or you advocate on behalf of someone else. You want your child to sit out of gym when they are nursing a sprained wrist, you want your boss to let you work through lunch so that you can leave work early, you ask that your employee be given a chance at a new position, you want your grocery store to start carrying organic Cheetohs.

Being an advocate comes with the role of being a human being with needs. When one is a parent, we advocate for our children in one way or another --- and some need it more than others.

Right now i'm in the middle of advocating for my oldest daughter, Ada. She is 23 years old and ready for a change. She's always lived at home but I knew that someday she would want to move out or we would realize that it would be better for her to live some where else.

We found a somewhere else: it was dangled before us like a dazzling, beautiful carrot. Then, just as quickly it was snatched away.

Ada has autism and depression (possibly bi-polar disorder; I'm not completely sold on that diagnosis anymore). She is incredibly sweet, gentle and fun (except for when she's not) and can be quite close- minded (!) about trying new things.

We broached the subject of a Group Home for Ada with her case manager and were told of one with an opening. We visited the home, loved it, loved the staff and were told how much they would love to have Ada join them. But, er, no: "sorry we shouldn't have told you about this".

According to the powers that be, we should never have been considered for this placement because Ada isn't 'medically fragile'. Have they given me a satisfactory definition of this yet? No, they haven't.

Mind you, I'm not ready to go to the mattresses for this yet, but i am in the process of getting to the bottom of it. I've had one very long conversation with a mental health supervisor and two lesser conversations with Ada's case manager. They say it's not off the table yet.

It's a learning process and I know that something good will come out of this experience; perhaps that that truly isn't the right place for my daughter. But, if it is, I'm going to do whatever it takes to get her there. Ada does not keep windows of opportunity open for very long.

For now, we're enjoying her good mood and happy temperament and hope that it lasts long enough to find the right fit for her. In the meantime, the advocacy continues and if we can get Organic Velveeta why not a great place for my adult daughter to live?

Christmas everyday....why not?

2009-03-15T22:21:00.004-04:00

Why can't it be Christmas everyday? Why can't our kids go to bed with so much excited giddiness that the only thing that helps them fall asleep is pure exhaustion from the wonder of it all? Why can't we decorate the house and create special memories and give gifts just because?

this past Christmas was especially special as Gabe really grabbed onto the spirit of the holidays: he loves the excitement, the surprise, the spontaneity and the hope. But, Christmas ends and what happens? Suddenly, the snow is a bummer and an obstacle, the crowded stores seem annoying and money is way too tight to find any wiggle room for that one last gift.

Why can't we enjoy the spirit of Christmas year round? Why can't we take the same delight in our children as we do when they are anticipating Santa? I don't know.

I know that my children love attention and never seem to get enough of it and that tomorrow, as in every other day, i'm going to do my best to give them what they need. It's never about the money or the expense, it's always about the love.

Don't ever forget to love your child.

Lauren - at daycare

2009-03-09T21:18:00.004-04:00

I'll start with the pictures first because I love them.
A photographer brought his chest of dress-up clothes and "old-timey" props for the photo shop.

As you can see, Lauren enjoyed it.

Did I fall for the already mounted and framed 10X13 of Lauren that was displayed at the daycare center.
Well, yah. As if.

Lauren goes to a daycare 15-20 hours a week while I complete my internship in school counseling. I was a little unsure about sending her to any daycare, particularly a commercial one, but Little House of Hugs came highly recommended.
And, I can see why.

The care providers are so professional, caring and flexible. I think that they treat Lauren like they would treat their own. She has bonded with them and they with her. They always make a fuss over her and put up with my ever-changing schedule. Heck, they don't even mind using the cotton diapers we prefer!

They keep the kids busy and active (they have an indoor gym with lots of thing to climb on) and keep them to a good, strict schedule. I feel so fortunate to have a place like this. It's not always easy saying goodbye to her for a few hours but I sure do appreciate knowing that she is safe, well-cared for, stimulated and happy.

Ada

2009-03-05T21:56:00.005-05:00

Ada is....
my 23 year old daughter. She is very unique, extremely challenging and sometimes frustrating. When Ada was born something special, some incalculable shifting of the moon and the stars and planets occurred that resulted in a being that would bring something to the world that noone else ever could. Something happened to make her into the interesting, amazing little person she was, is and I hope she will be again.

When Ada was 7 months old we discovered after much trial and error that she had a rare growth disorder known as Russell-Silver syndrome. It is a form of dwarfism that gives its few members unique facial features, short stature, a petite build and a whole array of medical issues, though Ada does not have hardly any of them. This was a difficult thing to hear but I had already accepted her and loved her so fiercely that there was no way I would let anything or any one stand in her way.

To fast forward this whole story so that I can get to my point, Ada was later diagnosed with Autism and most recently with Bipolar Disorder (along with 84% of the rest of the world...ha ha).

So what does this = ?

Well, take a person who has anxiety, very little insight into her own emotions and very little skill at communicating her feelings and add a dose of mental illness that is caused by a bio-chemical imbalance in the part of her brain that regulates emotions. What do you get???????

A ridiculous amount of stress....that is what. Seriously. God has a great sense of humor.

I don't know if I should laugh or cry. Lately it's been a lot of the later. I'm so sad about Ada. I have so little hope right now. She says she wants to try new things so I get her signed up...things like Special Olympics gymnastics and a girls weekend with some of her school mates and respite provider. She says she'll do these things but when the time come to do them...she withdraws, digs in her heels and refuses. And, once again, my hopes are dashed. I want her to try new things: I want her to find her niche in life and to find something that makes her happy.

Tonight I attended the first of 10 weekly NAMI meetings and cried through the whole thing. I need help and I need support and I know that this will help me understand my wonderful, unique and challenging daughter better.

Tomorrow's a new day and perhaps Ada will decide that going to a hotel, away from her siblings and the daily routine of our home life will be appealing. Perhaps she willl...but if she doesn't we'll push on. It helps to write it out - it doesn't seem as overwhelming.

"Just a Mom"

2009-03-03T22:11:00.005-05:00

Just tonight I was reminded that being a Mom wasn't really a job, wasn't really important, wasn't a good enough reason to complain about stress or lack of time or the inability to complete things.

Who implied these things? Why, a single, childless woman of course! I won't go into the details of the discourse: let me just say that I was disappointed at her ignorance. Sure she works FT and is in school...but when she leaves school or work, her time is HER OWN - something that I haven't experienced for pretty much 23 years now.

I don't blame my lack of time on anyone but myself. I chose to become a mother and a graduate student and a wife. I also do grief counseling, coach a soccer team and get 4 kids to 4 different places while I complete my internship at the High school. But why is it that I can empathize with her but she cannot empathize with me and instead, throws out comments like...'but you don't work"?

Anyway, I think that the world has come a long way in accepting that Parenting is Hard Work. Being a good parent takes a lot of energy. Heck, being a mediocre parent takes some energy. The only thing I don't have to show for it at the end of the week is a paycheck. I think that it is accepted that a lot of Mothers have to go to work and cannot afford to stay at home all day with their children and that those who do are extremely fortunate and blessed....but that does not mean that we are paving the road to easy street. Ever spend a day with an 18 month old and a 6 year old? It's not always pretty.

Anyway, again. I really wish that people who are not parents would stop assuming that they are working so much harder than those of us that are or that their parenting advice would be so much better than ours or that they would have perfectly behaved kids...if they actually had any.

that's all.

On being an older Mom..

2009-02-14T21:47:00.005-05:00

I have to admit that after I found out Lauren would have Down syndrome, I felt like such a cliche'. There I was, the woman of 'advanced maternal age' pressing the envelope of natural events by becoming pregnant. If I had just stopped with Gabe, everything would have been okay.

Oh, and it is even worse because I was not trying to get pregnant. It was this kind of 'see, you should not have gone there and now look at the mess you have made.

--You will pay for this the rest of your life.

--You will be that same 87 year old Mother you saw at the hospital taking her 44 year old son to see his doctor. The one you smiled at but inwardly sighed with great relief because, really, that is depressing & just unnatural for a Mother to still be responsible for her son's checkups when she is 87 years old!!

It took a while for me to stop seeing that in a negative light, yet I can smile about it now, knowing/hoping that I will be around long enough to accompany Lauren to the doctor when she is 44 years old.

Because so many children with Ds are born to mothers under 30, I do not actually get the chance to talk about this with that many other moms. The younger moms, though, have the perspective of "I am so young, how could this have happened?" For them there is no cliche', just wonderment.

The statistics say this about the occurrence of Down syndrome:

About 1-in-800 risk overall for all births
Less than 1-in-1,000 for women under 30
About 1-in-25 risk for a 45-year-old mother

I was 42 when I conceived Lauren and 43 when she was born. I used to wish that she had been my firstborn child because I figured I would have more energy, openness and naivete' about the horrors of raising a child with special needs. But, being of "advance maternal age" does have so many advantages!

Here are just a few:

I've lived long enough to see that children with Ds are really, really wonderful and can do many wonderful things

I've lived long enough to have put another daughter with special needs all the way through high-school. IEP's, OT, PT, etc. etc. are not new terms to me.

I've lived long enough to know that children pretty much choose their parents and not the other way around. Lauren was born to Chaz and me because she needed to be in our family.

I've lived long enough to know when I need to worry and when I don't. I know that Lauren will walk one day and when she does, she does. (I don't need to be chasing her around the church, mall, playgroung, school. That day will come and perhaps by then I will be ready for it).

I've lived long enough to know that it is sometimes hard to raise a child that is different but it is always, always, always a gift.

I've lived long enough to know that I still have much to learn and that Lauren will be there to tell me what she needs.

And now, some pictures, because what good is a blog post without them?:

a little outing

2009-02-08T21:17:00.007-05:00

Today I was able to take Lauren with me to attend a 'meeting' with other parents raising children with Down syndrome. The group is fairly large and offers things such as Music Together classes (which are wonderful), signing classes (which I've yet to go to), play dates, Mom's Night out, Buddy Walk planning and even a dance class for when Lauren is a bit older. I can already envision her in a clingy pink bodysuit, tousled hair and those glittery butterfly wings you can strap on to your back - all the while flitting and jumping about.

Many of the kids there were over 5, some were close in age to Lauren (18 months) and there were several under 1 including 2 that were just a couple of months old. As I listened to what the newest Mom's expressed, it reminded me of how far away that 'dreaded news of Down syndrome' has become.

I picked up some sadness in the words of some of the moms, some doubt and some fear. I know what that is like all too well and I can relate to it wholeheartedly. But, happily, I don't feel like that anymore. Lauren is Lauren - she's determined, spunky, fun-loving, happy, sweet, smart and lovely.

Every now and again I think about "what if Lauren didn't have Down syndrome?"...but I quickly realize ...doh! then, she wouldn't be Lauren. It's not perfect or a breeze or anything like that, but it is really good.

A friend of mine from the group, Jordan, (Mom to the amazing Callan)and I were talking about the new babies being born to people we know and expressing our mock (or was it?) sympathy for families bringing babies into the world who do not have Down syndrome... Our "we're so sorry your child does not have Ds" was only halfway facetious.

I guess you just have to know it to, well, know it.

She fights naptime....

2009-02-02T21:34:00.009-05:00

But...........................

she

wakes up happy!

Treadmill training - getting a leg up on the competition!!

2009-01-25T18:23:00.010-05:00

Here is the link to a story being picked up by the media. It is about the use of treadmills for infants/toddlers with Down syndrome. Dr. Ulrich of the University of Michigan's Department of Kinesiology is the brainchild behind this concept and he asked me and Lauren to come up for the taping of the information segment:

Lauren on the treadmill (the video segment is on the right).

Dr. Ulrich, aside from being a really nice & caring person, is deeply interested in kids with Ds, like Lauren, as well as kids with other motor planning issues and physical disabilities. His interest goes way back to his undergraduate studies in physical education and he has devoted his career and research to uncovering what will help our children develop greater physical skills.

While we aren't officially enrolled in the study (which recommends that you have your baby walk on the treadmill for 8 minutes per day), Dr. Ulrich is gracious enough to bring a treadmill to your home if you live within a 100 mile radius of Ann Arbor.

I can say without hesitation that it has made Lauren stronger and more capable. We don't use it as much as the research recommends but I can definitely see how it had helped Lauren's little body develop the motor pattern for walking, something that children with Down syndrome don't come by as naturally as other children.

18 months

2009-01-21T14:09:00.007-05:00

Exactly 18 months ago, Lauren was born and began her role as teacher. She was tiny and still and had skin that hung a little bit loosely on her body. She couldn't stay awake very long and she never could finish more than about 2 ounces of milk at a time.

But, oh boy, what a story she had to tell. Let me share a little bit of it with you.

Lauren came into this world, full of expectations, hope and a need for love. She wasn't damaged or broken or in need of genetic counseling. She knew that her parents had their doubts and that she just needed to hang in there long enough for them to come around.

In the meantime she gushed sweetness, innocence and a sense of purpose - all traits that she now possesses in triplicate.

As a teacher, Lauren has guided us through the principles of acceptance: don't judge a book by its cover, don't be afraid of the unknown and never underestimate the power that your heart has over your mindset.

When Lauren was born, I knew that I couldn't (as planned) write an adoption plan for her. I was meant for her and her for me and anything less than that would break my heart. She taught me to trust my instincts.

In the past 18 months, (which have passed by so quickly), Lauren has re-grounded us, taught us to slow down and appreciate each small thing and to join the joyous world of Down syndrome. Everything I read in the book, Gifts is true! We aren't pretending to be happy or in some mad whirlwind of denial/grief/acceptance. I've learned that Lauren isn't the one with the problem - I am! She couldn't be better, happier, more determined, or cuter! Who am I to limit her potential by buying into the stereotypes and negativity surrounding Down syndrome??
She is a joy!

The past 18 months have been incredible - not only in what has happened with Lauren but also with all that she has brought to my world: new friends, new experiences, new emotions and a renewed sense of God's grace.

Lauren, like so many children, is here to teach me that the world may not be perfect, but it is okay the way it is. We roll with the punches, get back up after we get knocked down and find the joy in small things.

No, it's not always rainbows and sunshine. My life is very stressful, tiring and challenging. But honestly, Lauren is the bright spot in it, most of the time.

Thanks for being a part of this, but mostly, thank you LoLo for being born - 18 months ago~

Early Intervention

2009-01-14T22:07:00.006-05:00

Now that Lauren has reached the ripe old age of 17 months, she is old enough to attend "school". It's actually Early Intervention (EI for short), which if you don't know, is a chance for little tiny kids to get together with other tiny little kids and their parents and play, sing, eat snacks and chat while therapists roll you through a series of 'therapeutic' activities.

Here in Michigan we are pretty lucky - we have options. These options include taking Lauren to an EI group that is just other kids who are developmentally delayed. This runs the gamut from Down syndrome to cerebral palsy to prematurity to syndromes and disorders that are so rare that the child you are looking at may be 1 of only 250 in the United States. The advantage here is that all of the kids are behind, and therefore, somehow, equal. The parents can compare notes, cheer one another on and appreciate the uncommon joy of celebrating a child of 2 taking her first steps!

The other option is a playgroup that would be a combination of kids who are "typically" developing = no significant or global delays along side kids with diagnosed conditions, delays, syndromes etc. We would do the same things in this group as the other - so no difference there.

The appeal of this is that Lauren would be with kids who are modeling skills that we want her to learn eventually -walking, talking, grabbing toys from other children, throwing tantrums, biting, ignoring their parent, etc...

It's a tough decision for me because I really like both of the teachers and the therapists. I love the idea of Lauren being with typical peers as that is where I want her to spend most of her life. But, at 17 months, she has nothing to prove and I mostly just want her to be comfortable. Truth is, she's almost always comfortable when she is with me.

Today I took her to meet the counselors I work with at Monroe High school. One of them commented on her sweet nature. Yes, that is true. Another made a comment that irritated me for awhile. She looked at another counselor and said "she seems pretty normal to me".

Hello, she is normal!!

Bedtime Stories

2009-01-04T21:31:00.002-05:00

For the past few months, my son Gabe has insisted on having me close by as he fell asleep. He has, in his own words, "bad thoughts" that keep him from sleeping. After some tears and gentle pleading, I was finally able to find out what his bad thoughts are.

Gabe is afraid of something terrible happening to his family and of us all dying. This, of course, breaks my heart. I know for a fact that he is really confused by his brother Gaven's death and by Gaven's place in our family. We talk about him often and we have pictures of him throughout the house. When we talk about our sizes, our ages, our interests, Gaven is included. Gabe is always the first person to include this brother he never met, in all activities that include the whole family. Gabe wants to figure out where Gaven fits in as much as he wants to understand the mystery of death.

I'm sad that Gabe has such a heavy heart at times and that he has any cause to worry about anything other than his next soccer game or getting to go outside for recess. But, he does. When a family loses a child, it does indeed affect us all.

Our bedtime ritual includes talking about his bad thoughts, asking God to take them away, praying for the entire family and, if we're lucky, a good chuckle over something silly like Barney's fake playground set and things that Gabe used to like....back in the day when he was 5.

I try not to get too caught up in the sadness and drama of my newly-6 son's world, but I also don't ever want to leave him hanging. It takes alot of energy to face his fears with him, night after night, but I know, like so many other things, he will put this behind him someday. If I can be there for him, in some small way, now, and all along the way, perhaps we will have the type of relationship I hope to have with him when he's a preteen, a teen and an adult: open, trusting, fun, emotional and honest.

On this note, I wish my sweet boy a good night and to all of the little ones out there who have fears, doubts and 'bad thoughts', I ask that your spend that extra 10 minutes with your child now so that they know they are loved.

the gift in the back seat

2008-12-27T20:16:00.005-05:00

Today as we were driving with some of our kids to the Toledo Zoo, I glanced back into the van to see Lauren. There she was tightly secured in her car seat: her sweet face and bright eyes were shining back at me through her nubby, pink sweater and her ever-moving feet were kicking and bouncing in anticipation of the adventure we were on. To her right was her big sister, Ada, whose name very well could mean "she who adores Lauren". Those two have a simple yet complete love for one another.

Every now and then I can't get over how this feeling of pure "wow, I am so lucky to have her" flashes through me. I never asked for or wanted a child with Down syndrome and was so not happy about the 'diagnosis' when I first found out. I think it was very much okay to have the feelings and fears I had and felt and I'm glad that I could process them as much as I did before meeting Miss Lauren face to face.

That is so much water under the bridge now, thankfully. Because if I were still so busy trying to convince myself that either Lauren was some sort of insurmountable obstacle & challenge or consolation prize i.e. not really like having another daughter or some other thing, I wouldn't be able to enjoy her that much. I think I'd be too busy feeling sorry for her, my family or myself. I'd be too busy wondering what others think about Lauren. Truthfully, I want everyone to see and know Lauren and to become acquainted with her special brand of sweetness.

The gift in the back seat brings me joy unlike anything else in my life. I really mean that. And every time that I look at her face beaming at me, I hope that I feel as blessed as I did today.

Pictures, Pictures, Pictures

2008-12-25T20:23:00.007-05:00

It's been awhile since I posted new pictures. I'm too tired and worn out to write but wanted to do something new. So, without further ado....here are some pictures of the family and friends:

LoLo in her new hat, crocheted by Jacqui (thanks, Jacqui!)

my busy, busy boy Gabe having some hot-cocoa with his whipped cream.

my friend,Tracy's kids in our church's Christmas play

Miss Lauren at Gabe's school concert performance - hammin' it up!

Gabe, Curtis (friend) and Davrin having some outdoor time together.

kind of a non-post, post.

2008-12-15T20:42:00.003-05:00

Things have been difficult lately. I'm tired, stressed-out, run-down and can't stop coughing my guts out long enough to complete a thought or a sentence. But, that doesn't mean it's all bad. Here are some of the things going well in my life (lest I forget)

1. Gabe, Davrin and Nolan are all doing really well in school and having no real adjustment problems at the moment.

2. I've had time to read lately and just finished a wonderfully well-written and interesting book by Darin Strauss : "More than it hurts you", and another called "Deaf sentence" about a man who realizes how marginalized he has become since becoming hard of hearing. My dad is very hard of hearing so I know this is true and it's interesting to read things from that point of view.

3. We both lost and found Lauren's hearing aids twice. The first one we thought was lost at the coffee shop downtown but turned out was sitting in the dish drainer of our kitchen sink all night. Surprisingly, it still works! Apparently these things are somewhat water resistant.

4. Lauren is strong, determined and healthy. (Ornery and crabby, too, but that goes in the other list).

5. My internship at the high school is going really well and I really like being there. My supervisor is really great to work with and I'm learning lots from everyone.

6. We have a home, transportation, food, clothing, education, faith, family and friends.

On that note, I will close - since this is only a non-post, post!

My 6 year old.,,,A Gabe Story

2008-12-06T22:14:00.005-05:00

Wow, it's been 6 years since Gabe came into our lives. He was born at our local hospital after a short labor and very long pregnancy. Gabe was conceived, most likely, the morning of our son, Gaven's funeral. After losing Gaven, we wanted so badly to have another little baby boy in our lives. My wish was for a baby that looked just like Gaven. My arms were empty, my heart broken, my spirit unsure. I needed some way to reinvest all of that love I had for my lost boy.

Gabe came to us in a rush of emotions. His initial cries were a bit weak due to a vocal chord strain that occurred during birth. It was short lived! Gabe was a very sleepy baby and appeared unusually tiny at birth (he was @ 7lbs. 11 oz.). Truly, I think that Chaz and I were just so worried about everything that it was hard to find anything that seemed perfect. He didn't want to nurse at first; he just wanted to sleep. I had nothing to worry about.

But, he did look just like Gaven!

At 6, Gabe is a strapping young man - 62 lbs and almost 4 feet tall. He's beautiful, spirited, difficult, demanding, fun, loving, emotional, fragile, strong-willed and so, so bright.

The fact that Gabe was born almost exactly 9 months after Gaven passed will always leave me in awe. How could this be? What does this mean? What does this say about Gaven's life/death and what does it mean for Gabe? After all, I was breastfeeding then pumping every 2-3 hours. It only took one try to make Gabe.

Gabe's life has been extraordinary. Our love for him surpasses our patience and energy. Gabe wants so much from life: he wants it all!

Whereas Ada was high-strung but obsessively predictable and whereas Nolan was also incredibly bright but very even-tempered, mellow and earnest and whereas Davrin was sweet and eager to please, Gabe was/is a force of nature I had not yet experienced.

What do you do with a boy like this?
You love him, you pay attention, you take breaks, you have meetings with teachers, you find it hard to complain, you find it hard to find people who understand your frustration, you stand in awe, you fear for his life and for your heart.
I don't know that I would survive something happening to Gabe. He has my heart. I love all of my kids and they all occupy special places within my mind, memory, dreams and goals. But, Gabe...Gabe gave me hope, proof of God's presence and something that no one and nothing else could: simply, a baby to love.

Gabe had a party last night at the bowling alley with 16 of his friends and classmates. He is well-liked though probably misunderstood at times. He's physical, demanding, impulsive and fun-loving. He had a really good time and repeatedly told me that he "couldn't believe he was 6"!!

Gabe, who could easily read this blog: I love you! You have inspired me to go on, to live again, to pursue healing and tenderness instead of bitterness and sorrow. You are only 6 but you are so powerful.

The gift of choice

2008-11-30T22:22:00.012-05:00

Tonight, Brothers and Sisters, one of my favorite TV shows, revisited the topic of adoption. In the series, Kitty, (Calista Flockhart) and her husband Robert, (Rob Lowe) are given a second chance by a birth mother with whom they would like to write an adoption plan. Kitty and Robert are unable to conceive on their own and were selected by this woman, a very ambitious and hard-working woman of color to parent her child.

Brothers and Sisters always does a good job of invoking common human experiences with a full, rich smorgasbord of feelings. The show gives you the meat as well as the potatoes, the gravy, the cranberry sauce and the pecan pie.

Tonight's show got me choked up for a variety of reasons: the most obvious being that Chaz and I thought that Lauren would be adopted by another family after she was born. This is such a complex, painful, and yet, somehow happy thing for me to talk about it. Complex because the decision of adoption was not entered into lightly, nor did its conversation ever come without anxiety, tears, fears, relief and amazement. Complex because there is a lot to learn and do before a baby can be adopted, either into or away from your family. Happy, because we exercised our choice on so many levels. How many times, in ones life, do you get to really choose something that has already been given to you?

That is what we did with Lauren. When I found out at 15 weeks gestation that Lauren had that extra 21st chromosome, aka, Down syndrome, I could not believe my fortune. How could this be? I already had a daughter with special needs, I already had suffered through the loss of a son, I already had a very demanding & spirited young son, I already had made room in my home/life for a child against my wishes (my step son who is now a very welcome part of the family).

Part of the adoption process is reviewing the profiles of adoptive families. There is a woman in Cincinnati who helps facilitate the adoption of babies with Down syndrome and the families eager to raise them. I contacted her once we had decided to pursue adoption. She sent us the names and pertinent information of about 5 families.

One of these families described was a man and woman who embodied so much of what I hoped for: the mother was trained in the "Montessori Method" i.e. she had taught in a Montessori school, something I really like and have since enrolled our 5 year old son in for Kindy and 1st grade, and the dad was a very logical, reasonable person who brought a true sweetness to the relationship. I was immediately attracted to this couple as I saw in them, part of what I saw in my self and wanted for this baby.

"Susan" and "Aiden" were everything I wanted in an adoptive couple: close, kind, caring, open-minded, professional, intelligent, informed and willing. They did not have any children of their own but demonstrated a real love for the children in their family as well as a deep appreciation for people with Down syndrome.

This was both a very open and very complicated relationship for us all. I wanted them to know everything about me: how i loved my kids, loved being a mom, never thought that I'd be in this situation and wanted what was best for everyone involved. Not that I know what is best for everyone - I really don't. I wish I did.

And, "Susan" and "Aiden", were very open with me: we had many, many long and loving email exchanges. They got to know me, I got to know them. At one point, Mother's Day 2007, we packed up the van and drove to their home town, about 3 hours away. We stayed at a hotel and made arrangements to share a meal and have some time together.

It was an interesting visit and not without its share of questions. In this situation of adoptive mother:birth mother, there is this almost tangible emotional dialogue of proving oneself and seeking proof. Not only did I want to feel completely liked by them, I also wanted to feel, without a doubt that I had chosen the right family for my baby.

It's an almost impossible situation. I wasn't 16 years old, I wasn't naive about the pain this would cause, I wasn't new to the concept of loss and I wasn't really sure how one goes about picking a family for a baby that is growing rapidly within one's own belly.

What was I afraid of? That is one of the questions I can now ask and answer. So, what is it? What made me think that 1. I couldn't handle having a baby with Down syndrome, 2. That I could survive the experience of handing over my child to another couple and 3. How would this fit in with the rest of my difficult and challenging life?

I thought that having a baby with Down syndrome was going to be horrible. I envisioned a cute-ish baby with her tongue hanging out of her month, a lifetime of doctor visits; being 89 and still being the parent responsible for taking my daughter to the dentist. I thought of the long days of therapies, the endless need for patience, acceptance and some brand of deception that told me that it would be "okay" when, really, what I really thought way "God, no".

And, you know what? It is a lot of work and a lot of appointments for therapy and evaluations. I now pray that I will make it to 89 so that I can accompany Lauren to her dentist appointment, if she needs me to be there.

I have been working on this post since Sunday evening. It is not done: I have not yet explained what happened with me, the adoptive parents, our plans, our relationship (it's good!) or anything else brought up in this post. but, I feel like if I don't get this online, this will be a forever post and I really wanted to share this.
so, thanks for reading this.. Bless you all for being in my life - in one way or another.

Do people with Down syndrome suffer?

2008-11-28T21:22:00.004-05:00

this was written by someone else -- Kristy Colvin, but I really like it. Please read it and leave your comments:

Yesterday I received an email alert that brought up a discussion of Down
syndrome. AskMen.com poses the question, "Would you keep a baby with Down syndrome? Does a person with Down syndrome really suffer in today's society? Should a test for this disorder even be an option for pregnant women?"

The responders of this debate come from all sides. The one question that
struck me hard was "Does a person with Down syndrome really suffer in
today's society?"

My answer is 'yes', but not the way most people who do not have a child with
Down syndrome or mosaic Down syndrome think.

A person with Down syndrome or mosaic Down syndrome does suffer.

They suffer from ignorance.
Not their own-But the world's.

They suffer from discrimination.
Not because they can not discriminate the differences between others-But
because the world discriminates against them.

They suffer from communication problems.
Not because they can not communicate- But because the world will not listen
and communicate with them.

They suffer from misunderstanding.
Not because they don't understand-But because the world refuses to
understand them.

They suffer from learning problems.
Not because they can not learn-But because the world believes they are not
teachable.

They suffer from the inability to make friendships.
Not because they are unable to be a friend-But because the world teaches
their children to not associate with them.

Do people with Down syndrome suffer? Yes, unfortunately they do. But only
because the world sees them as so incredibly different from themselves.

If the world would stop and get to know-really know-someone with Down
syndrome, they they would realize that they are no different than anyone
else!

Some may talk a little different, but that doesn't mean they don't know what
they are saying! It just means they have trouble forming the words.

Some may learn a little different, but that doesn't mean they can not learn!
It means that like every single other person in the world, they learn at
their own pace.

Some may look a little different, but that doesn't mean something is "wrong"
with them. Even identical twins look a little different from one another.

My son has mosaic Down syndrome.

He is 22 years old.

He likes RPG video games.

He likes YouTube.

He likes horror movies.

He LOVES girls.

He plans to have a family.

He plans to have a career in computer graphics.

He is a great writer and hopes to be published one day.

He wants to travel.

He would love to go to Japan.

He likes hanging out with his friends.

How different is he really to any other 22 year old?

This goes back to my statement years ago that became my Trademark:

The Only Handicap A Person Has Are The People Around Them!

The only thing people with Down syndrome or mosaic Down syndrome suffer from
are the people in the world who do not believe they should be here in the
first place.

My trip to the "C" lab

2008-11-25T22:39:00.004-05:00

Okay, I just need to get some stuff off of my chest, out of my head and away from my nose. I'm not sure how this is going to come across or sound and I may need to edit it later...but for now, here goes.

Today I accompanied 30 Monroe high students to a cadaver lab at a teaching hospital in Toledo, Ohio. As a counseling intern, I made myself available to the career counselor at the school. The group was made up of young women interested in a career in the health/medical field.
Oh man, was that a mistake or what?
To say it was horrifying doesn't quite cover it. I'm not weak-stomached and I didn't get queesy. And yet, I can't quite explain how heart-wrenching and unsettling it was to see this room full of bodies.

All of these bodies breathed in oxygen, ate, drank, pooped, loved, made love, ran, climbed, worked, sang, read, wrote, hurt, caused pain, gave birth, comforted, learned, forgot, prayed, ignored and experienced a hundred million other things.

But, in death, in physical death at least, you are nothing more than a set of organs-- sometimes prized by med students eager to disect your guts and find your orbital lobe and ductus differens. Granted, most bodies do not get 'donated to science' but instead are either buried immediately or cremated.

In no way, shape or form was I inspired by this experience. Did seeing a badly deteriorated lung want me to take up running again or did the sagging stomach make me glad I make sit-ups a regular part of my life? No, not really.

What it did say to me is that we spend so much time taking care of our bodies, our exteriors that sometimes we think that that is all that matters or all that people see. But in the end, we aren't any different than any other 'body'. We have the same parts; some bigger some smaller than others. We aren't going to be prized for having a perfect spleen at the time of death.

All of these 'bodies' left behind a memory, a story, a family, friends, traditions, beliefs and hopes. That is so much more than a 2nd year med student could ever uncover. What they do is valuable and meaningful, for sure, but it isn't what gives life meaning or value.

It felt good to get some of this off of my formaldahyde-infused clothes and into the cyber world. I hope that I have good dreams.
I hope that you do, too.

we have no bananas today; but can we talk about teen pregnancy?

2008-11-19T21:41:00.004-05:00

Today was interesting. I started my internship at Monroe High school on Monday. Talk about going from the frying pan into the fryer. Kids are unpredictable, difficult and completely and utterly perplexing.

Who would predict, as a new mother, that in, say, 15 years, your daughter would be expecting a baby of her own? And acting like it was totally natural?

For each day I live, I learn that people are unique, oblivious and unstoppable!!

Good thing, sometimes. Other times, not so much. Today, for instance, my supervisor was visited by one her students for a schedule change. This young woman was hoping to change her schedule because she is pregnant. Six months pregnant and isn't sure she can handle a PE class first hour. She thought it would be easier to have math first hour.

What does it mean to be a new mom at 7:30 in the morning? For me, that was halfway through the night. In a decadent, and never duplicated manner, I would sleep in every morning (that I could) after having babies. They would be up alot between the hours of 12 and 4 but after 5 we would settle in for a good sleep, even if it was broken by the need to nurse - baby's and mine.

But, this 15 year old girl at the High school is thinking that getting to school at 7:30 is doable, reasonable and practical and that the thing to worry about is what class she is taking first hour.

If only I were 15 and didn't have a lifetime of doubt, uncertainty and fatigue in front of me.

Part of me wanted to shake this young woman and part of me wanted to follow her home and bask in the glow of her naivete.

Alas, i could do neither. Instead, I picked up LoLo from daycare, shopped for dinner groceries, came home, fed a child, made some phone calls, started cookies for Boy scouts, therapied with Lauren, packed up cookies, went to Boy scouts, attempted to help Gabe make Dream Catcher, cleaned school, came home, helped layout design for cub scout boat, make Lauren giggle, got snack, bottle, put kids to bed.\\\

that's it. It doesn't matter how much i did, today. What matters is how much it all mattered to me.

alot, a real, whole lot.

Bananas and medical bills..

2008-11-17T20:06:00.004-05:00

today, in the mail, my 15 month old daughter, Lauren, received a survey to fill out. Since she was recently in the ER at our local hospital and clearly proved to them how very capable she is, they are following up on the services they provided to her and, because I just happened to be there, me.

Was the receptionist courteous, was the wait time reasonable, how comfortable was the waiting area???

Lauren seemed very irritated by these questions and decided to take the 5th. In response she stuffed a veggie stick in her mouth and feign indifference.

But, what is it with hospitals and doctor's offices and the billing departments?

How many people do you know who have been hit with extraordinary costs associated with a hospital 'visit'? Thank God for insurance right? Not always.

For reasons I cannot explain, I have held onto a statement we received from Toledo Hospital. This is where our son, Gaven, was taken after he stopped breathing at daycare. Months and months and months after I bathed and dressed his little body one last time and we had buried him, a bill came to us in the amount of $161,000. We thought we had moved past this part of things because Thank God, we were able to qualify him for insurance due to not working for the 2 weeks Gaven was on life-support.

But, there it was. I returned home from work, full of that heaviness that came with grief. The mail had long since ceased delivering the sympathy cards that somehow, in some small way, reminded me that people remembered our dear son and were thinking about us, and the many hours and days it had been since he had passed.

Even seeing his name on something stopped my heart just a little bit (it still does) and I eagerly opened the envelope. It listed the various services he had received while in the PICU and the cost of each. The cost was staggering (though very little compared to some).

The next day I called the billing department about the bill. As soon as they had entered the account number, the woman said something like, "oh, yeah, you can disregard that - computer error". Well, bust my buttons Dorothy, but that is a really crappy error.

On to the BANANAS!!!!!!

This is my son Gabe:

he is 5 and a 1st grader at Meadow Montessori school. Today and for the next 4 days he is responsible for snacks for his classroom. There are 16 kids total and last night we picked out bananas and vanilla wafers. Tonight, being Gabe, he thought we better write the name of each classmate on a banana. Sixteen bananas, 16 names. That is just so funny to me.
Much funnier than the hospital bill. Fo Sho.

i'm done, i'm done, i'm done, i'm done

2008-11-14T21:05:00.003-05:00

I can hardly believe it but after 19 months of Tuesday night classes and Wednesday-Monday homework, I am DONE!! I just finished my last paper for a long time!

What a great feeling it is to know that challenges can be met. I know that God blessed me with the patience, vision and perserverance to get through this time.

I will never forget going through the interview process for school. I sat before a tablefull of professors, deans, etc.. they asked question after question about my intentions, my faith, my ambitions, etc.

I was accepted into the graduate program in counseling.

A few months passed and I realized that my body was 'changing'. I attributed everything to early menopause. After all, both of my sisters Juliette and Caroline began menopause early so why not me? I gained weight, I overate, I was incredibly tired.

Upon the advice of one of Ada's doctors I took a pregnancy test: to rule out pregnancy.

No Way! It was positive and I was shocked!

Needless to say, when one is almost 12 weeks along in a pregnancy, one doesn't have to wait the full 3-5 minutes to see that 2nd line appear - the one that says ; YOU'RE PREGNANT.

So, I began graduate school the same day I had my first OB/GYN appt. How surreal it was.

That was 20 months ago.... Alot has happened. A real whole lot.

Lauren, my little ray of sunshine is here. That is such a long story in and of itself.

She is probably the most key ingredient in my finishing school and getting through the past few months; she proved to me that all things are worth fighting for and all things are worth waiting for.

So, tomorrow I give one last presentation. Something about counseling in the elementary school. On Monday I start my internship at Monroe High.

It is a good feeling...a very good feeling!

People are hurting.

2008-11-08T21:43:00.004-05:00

Today in class we listened as our professor read a cool essay written by a Anne Lamont who discovered the presence of God during a very trying time. The name of the book is Traveling Mercies. One of her main points is that sometimes we are given adverse situations and trials to divert our attentions so that something new can be born elsewhere.

We had a chance to discuss the passage and what it 'said' to us. It's a lovely thought to think that while this crap is happening over here, something really wonderful is happening over there - and that we will get to enjoy it someday. I think that it's true. I also think it's true that sometimes we get so caught up in the muck of life that we forget to look for the good stuff. I know that I do. This past week was really challenging - my oldest wouldn't get out of bed and I thought she might need to be hospitalized, I had way too much homework to do, and just the general - too much time, too little energy mode that I spend alot of my time slogging around in.

but, here we are. It's a Saturday night. The kids (and hubby) are asleep. I got my work turned in today (not that I don't have a ton more to do). Had a pleasant day with my fellow classmates and managed to find the silver lining in our rather dismal financial state ...after all, I am one of " Kroger's Best Customers".

Anyway, what I'm getting at, very slowly, is that people are hurting. You, Me, your neighbors, friends, classmates, co-workers, the cashier at Kroger. What are they/we hurting about? Lots of things: broken hearts, bad news, kids in trouble, financial worry, lack of friends, addictions, health problems, marital problems etc....

We could all use some support, sometime. Even though we are all connected via email, MySpace, facebook, bulletin boards, our phones, blackberries etc. we still need human contact. It's amazing how all of the new technology can actually cut us off from the world. Let people know that you care and take some time to listen to their troubles and concerns.

now I can write about anything I want...

2008-11-03T20:42:00.003-05:00

I (barely) made it through October a.k.a 21 for 31, a.k.a. Down syndrome awareness month. that was a toughie for me. I had a couple of weeks there were life took from me a tad bit more than it gave and I felt depleted. Too depleted to blog...oh the shame of it.

But, it's another month and I'm no longer 'restricted' to the confines of commenting about Down syndrome.

So, what should I talk about?

I could talk about how bad of an idea it is to hold off on homework till the end of the day. Gabe is 5 and has homework. He has to read "literature' and then comment about it, write True/False questions, look up words he doesn't understand and other tasks. If he is 'on' he gets right to work and it's fun and fascinating. When it's 7: 20 on day two of Daylight Saving time, it's all he can do to hold a pencil without me grabbing it from him and poking out my own eyes. These are long days, sister - they start early and don't level off till much later.

Or I could talk about my daughter, Ada, and how interesting she has made my life. From day one till today she has been unpredictable. That is 23 years of unpredictability. She's had some good days and some bad ones. This last 6 months has been a bad one.

Let's see...what else? Tomorrow is election day - I'm very excited. My son, Nolan, is coming down from Central Michigan university to cast his vote and i'm planning on taking Gabe with me to the polls at some point. We're also going up to Ann Arbor tomorrow so that Lauren can be videotaped while walking on her baby treadmill. A Dr. at U of M did a study on babies with Down syndrome using one of these specially made treadmills. Lauren has used her's off and on since March.
I tried to get out of this since she isn't really walking and I tend to do alot of the work when she is on it, but the kind dr. said it would be fine. After that, we'll hit Trader Joe's, stop on the way home to visit my bud, Monica and her lovely family, and then head home for a nap.

that's as far as I can plan at this point.... Let's hope that everyone who can vote, will get out there and do so!

my thoughts on the word retarded (and lame and gay)

2008-10-30T21:47:00.003-04:00

So, I have never liked to hear people call other people retarded. It is an unkind word almost never used in context. Yet, people from all walks of life use it to describe people or situations that they think are anything from unfair to ridiculous.

Among those in the special needs community, there are very strong feelings about this word. Because Down syndrome and other syndromes are associated with mental impairment, parents get pretty upset and outraged when people throw around the world retarded. No one wants their kid to be called names and certainly not 'retarded'.

But, I don't necessarily assume that people hear the word retarded and think of Lauren or anyone else like Lauren. And I, for one, don't want them to. I would never want anyone to hear the word retarded and automatically think of Down syndrome. But honestly, i don't think that people do. Most people don't really know what the word means anyway, so I can't expect them to to know that much about DS or mental impairment.

Yes, the word gets used inappropriately and I think people should be more careful about what they say.

But what about the word lame?Or Gay? If we are to get on our high-horse about people using the word retarded, shouldn't we also be careful not you use the words, lame and gay? Do people with unusable limbs or homosexuals deserve for words describing their 'condition' to be used inappropriately. Of course not.

All I am trying to say is that if we are going to be so careful about language, then let's expand it to other words, too. Not just the ones that personally affect us.

2008-10-25T20:48:00.002-04:00

Not much time to post today.

It was a full, busy Saturday. I had class today from 9-2:30 (was supposed to go until 5, so getting out early was a great surprise) because the kids had parties to attend.

The first was Miss Mary's Halloween extravaganza! Mary is a friend of ours and Gabe's former preschool teacher. She has an amazing home and pole barn and hosts the parties there every year. She provides moon walks, hay rides, drinks, food and asks that everyone who comes to bring a dish to pass and candy to hand out. We sit on hay stacks which have been placed to form a path through the pole barn and all of the little one's Trick or Treat.

Gabe was a Tiger
Lauren was a Princess
(pictures will be forth coming)

On the way home from that party, Gabe had a party to attend for out next door neighbor. This one was held at McDonalds and Gabe asked me to stay as well. So, i hung out with the grownups and watched Gabe run around for awhile. Snuck in a few fries, too.

After getting home from that we had to hide Gabe's Halloween candy stash from Dad (Chaz doesn't read my blog but don't tell him that the candy is in the drawer of Gabe's bed) and get the youngest kids ready for bed.

And that is where they now are. I feel like I got alot done today but the house is a mess so I already know what i'll be doing tomorrow after church tomorrow.

ta ta for now!

the love that is Lauren

2008-10-22T19:02:00.003-04:00

It seems like ever since Lauren was born, people have really wanted to see her and be around her. Friends delight in her, strangers notice her and say sweet things and acquaintances just want to get a glimpse of her from time to time. They all want their "Lauren fix".

That's just how it is with her. What are ya gonna do?

Lauren seems extra special to me, too. It may or may not have anything to do with that extra chromosome. Maybe it has something to do with the anxiety I went through while pregnant with her which was so entirely preempted by the joy of her birth. Her happy smiles which make her eyes shine have something to do with it. Her gentle nature...that is becoming less gentle and more demanding, is just nice to be around.

Yes, people with Down syndrome have been stereotyped as so sweet and gentle. There are worse things to be. Sure, she's moody and demanding and fussy at times (yes, really) but man, that almost seems like an aside when compared to what joy she brings. I call her my little ray of sunshine.

She's asleep right now and the boys are on the top bunk doing an animal search book. I'd like to find the person who started that trend and pop em in the face. Why oh why must I be subjected to these books? They are so dear to Gabe and he likes nothing more than to have someone sit with him while he finds the 45 emperor penguins which are cleverly intermixed with the 71 king penguins and 112 seagulls. What a cruel world it can be :) I will have to be sure to tell Davrin how much I appreciate him taking the time to do this book with him.

Goodbye for now!

Long time no see

2008-10-20T20:58:00.004-04:00

I've failed the 21 for 31 challenge, miserably. I've logged on and wondered what I had to say that wasn't depressing or negative and couldn't find anything so just moved on to other sites that were more interesting and uplifting.

The past couple of weeks have been a bit more trying than usual. I have 5 children and i've yet to have a day or week when 1 of them isn't going through something - an illness, or a hissy-fit or some other intrapersonal experience that is not compatible with my life.

Take for instance, THIS MORNING. After rousing from a nice codeine-induced sleep, I woke up to Lauren's jibber jabber and the alarm clock. It was time to get moving and get things going. After grabbing some clean clothes for Gabe, I bring LoLo downstairs and see if Gabe would like some cereal for breakfast. Yes....okay, we're off to a good start.

Gabe is 5 and much more strong-willed than I. Fast forward to the crucial drop-off at Meadow Montessori. By 7:40 I have 6 children in my van - 2 of my own (Gabe and Lauren) and 4 that I drive. Gabe's desire was to get out of the van first...or at least not last. But this didn't happen so he was grumpy. Then, he didn't want to take his coat. Then the 'headmistress' of the school cam to try and help me get him going but gave up and told me I was holding up traffic and needed to pull up. I did get Gabe out of the van,,,,but that is as far as we got. After 20 long minutes of arguing and threats of punishement, Gabe, Lauren and I headed back home.

So, Gabe didn't go to school today...and he's grounded from "media" for a week.

Following this was the experience of rousing and delivergin Ada to her school. She was teary-eyed when I dropped her off but she went. Success, of sorts. ( I did call later and found out that she was fine...taking part in stuff at school.)

Next was the issue of taking Lauren to Baby Hugs. I have (had) a paper due for my consulting class and knew that I had to get it done today!

She cried when I left her but I let them know that I would call at 11:30 and that if she wasn't doing well, I would come get her before nap time.

Anyway,,, I know this is all pretty boring stuff. But, it's my life. My friend Pam called around noon and I was so upset that I couldn't talk to her or tell her how badly I felt about...about everything in my life. I worked on my paper and sniffled for the next hour. Gosh, it was great; you should have been there!

The day ended okay and now, finally, i'm fulfilling my desire to post on my blog.

that's it for now

alone yet united

2008-10-11T21:07:00.003-04:00

Sometimes, really, I feel so very alone in my journey with Lauren which is odd because I know that i'm not and I know that there are thousands of other parents 'out there' just like me. Or at least, sort of like me.

I read alot, I spend alot of time online and I try to interact with lots of "real" people, too. I reach out to others and sometimes, they reach back to me.

Raising Lauren is not a difficult task. Yes, she has Down syndrome but that is not that hard, at least not anymore. The first year was pretty exhausting but we got things figured out and she has been in really good health for the past 9 months. There are appointments for therapy and the missing hearing aid and my own incessant need to constantly stimulate her. But, in reality, her easy going nature, smooth disposition and adorable smile make her quite delightful. She does not make the demands on me that her 5 year old brother does...not even close!

Back to the loneliness thing. It may just be me, but I find it hard to feel part of the big picture of "the world" or even of the "Down syndrome world" in the way I would like to. I'm either too tired, too broke, too busy or too unconnected. I'm out alot but not really doing things other than driving kids to school, running errands or going to appointments for anyone of my 5 children.

I used to be part of group of mothers who all met at La Leche league. We planned weekly get togethers and outings and it really helped the first years with Gabe feel full, interesting and fulfilling. And, while I've met lots of great people since Lauren was born, I don't have that type of group anymore. And, I wonder if I ever will. Will we be (or have we been ) left out or not invited because of Lo Lo's DS, because of her slower development?

When I go online or read books, such as Road Map to Holland (by Jennifer Graf Groneberg), I get the chance to get plugged in again for awhile. I've learned so much from my online community of friends - we share the trials and joys of our experiences and have a bond forged from common fears, discoveries and chromosomes.

I guess I just wish things were different for awhile. I wish that it wouldn't be that hard to make new friends and I wish that that feeling I get sometimes, that we really are all connected would last and would mean something. And, I wish that I could shake away these lonely feelings that I get sometimes, because I know that my life is meant to be full, interesting and fulfilling. Maybe even happy...not despite what i've been through but because of it.

Daycare dilemna - solved!

2008-10-09T14:08:00.002-04:00

Today, Lauren spent 2 hours at the new daycare center, Baby Hugs. All in all she did really well. She did cry but was able to calm down and be soothed by the caregivers. When I picked her up she was outside swinging with some of the other children and was quite happy. They said she did great and she was really happy when i got her home. Such a relief!

I don't need her to be in care much until I start my internship at Monroe High in November. I'm getting my master's in school counseling and will have to complete 600 hours over the course of the next year. So, Lauren will not ever be in daycare more than about 20 hours a week (this last paragraph is meant to relieve any Mommy guilt I always have about having other people care for my child).

During the two hours she was away, I eased the knot in my stomach by vacuuming and shampooing the inside of my car. One of our local car-washes, Mack's, has the best equipment in town. I had a pleasant exchange with Mack after the machine got jammed with quarters (mine) and wouldn't work. He appeared at first, to be a crusty ol' man but was such a sweetheart. He got the machine working, loaded me up with quarters and thanked me for letting him know that the machine wasn't working - rather than going away mad and not returning.

It's been a good day - got lots done at home, too and can't wait for LoLo to wake up so that we can spend some more time together.

One of those days.......

2008-10-08T20:56:00.003-04:00

Today I had the chance to visit the building that houses some of Monroe county's special needs children. The kids here are anywhere from 3 - 26 and have a whole multitude of disabilities and challenges. I believe that the kids here are dealing with pretty severe developmental delays which prohibit them from attending regular or school-based special ed classrooms.

I had dropped Ada off at her school which is called the Transition Center and it located right next door to the Ed Center. She had had an appointment with Community Mental Health and after I dropped her off I decided to go visit a couple of people I know who work at the Ed Center.

Anyway, with Lo Lo in hand I walked through the halls of the Ed Center and neither saw nor heard anything reassuring. It wasn't that the teachers weren't doing their jobs or aren't truly good at what they do...they really are. They are so committed and wonderful. There was just such an emphasis on managing behavior and not so much on education.

(I'm realizing as I write this how hard it is to not sound critical of this program -i'm really not. It's just not what I want for Lauren, though I'm sure I'd be grateful for it if this is where she needed to be.)

It just hit me as really sad that kids like Lauren come to a school like this. I don't really even like saying this because I know that all of these children are loved and probably make progress and surprise those who know them.

But still, I don't want Lauren to need a school like this. I want her to attend her neighborhood school and to be a pretty much regular kid. I know that it will take her longer to learn to read, write and do arithmetic but I don't want that to ever stop her from being just a regular student in the classroom.

Sometimes I walk the fine-line of 'realism' VS 'high expectations'. I'm chastised for not having high expectations but also warned not to expect too much. This is not new ground for me, at all. I went through all of this with my first daughter and am very familiar with the concepts of:

second-guessing myself
not wanting to get too excited about progress in case it's just a fluke
not setting my standards too high in case they weren't reachable

etc etc.

I know that Lauren is different; she will progress in different ways and have different abilities than my other children, but I do know that I will always want more for her.
It's just too hard not to:

You too can be the parent of a child with Down Syndrome

2008-10-07T22:30:00.002-04:00

I'm letting myself off the hook tonight by posting a link to an agency that specializes in adoption of children with DS. They come from all around the world but all share something in common - that extra 21st chromosome. In some countries that makes them instant orphans and often that means that their physical, emotional and educational needs go unmet.

Until someone gives them a home! I think they are just gorgeous:

http://www.reecesrainbow.com/

TA TA FOR NOW!

Just another day

2008-10-06T21:41:00.002-04:00

Today started early and is going to end late. I woke Gabe (5) up at 7:00 so that he could eat and have a few minutes to play before driving him to school. He is a 1st grader at Meadow Montessori school and the school day runs from 8:00-3:30. It's a long day.

After getting him off, I came home to get Lauren and me ready to visit a daycare I'm considering for her.
The visit went really well. The owner is fantastic - really dynamic and loving - a real dynamo really. And, as an added bonus, one of the caregivers for Lauren is a mother who has a little boy with Down Syndrome. That gives me a level of comfort, naturally, for many reasons. She understands the slower pace of Lauren's development and how to celebrate every milestone. It was nice to talk with her and to hear how well her son is doing in his own 1st grade classroom.

Lauren was hurt at another daycare about 2 weeks ago and it was really unsettling. She is okay but it reminded me of how vulnerable little ones are and how upset I get when someone is reckless with one of my kids.

We'll be taking a slow route in getting Lauren adjusted to daycare - I won't need it much until next month when I start my internship at Monroe High school - about 20 hours a week. I think that parts of it will be really good for her (she loves to play and they have a ton of toys), the variety of other children, etc...and I know that it will be hard for her as well. She doesn't like being away from me and it will be a huge adjustment for her. I worry about her and pray that she will not get hurt again, that she will have lots of fun and that she will be a positive influence on everyone she meets. A tall order for a 14-month old, but I have high hopes for Miss LoLo!

Trip to the Zoo

2008-10-05T20:37:00.001-04:00

Today we (Chaz, Davrin, Gabe, Lauren and I) traveled to Lansing, Michigan's Potter Park Zoo. Every year at this time, Tomorrow's Child/Michigan SIDS puts on a Memorial Service in honor of the babies lost during pregnancy or infancy. Our son, Gaven, passed away 6 1/2 years ago at the age of 3 months due to SIDS. I like going to this event as it is dedicated just to babies like him and the families who have been through a similar loss. They always show a slide show of the babies, have music, a speaker and then a walk out to the Baby Garden where we have purchased a stone in Gaven's honor.
Here is a shot of Lauren sitting near her "Big" Brother's stone.

It's also so hard to be reminded of what we've lost and what so many other's have also lost. It just doesn't get any easier, either. I don't feel the same raw pain as i once did, but it still hurts and it still surprises me that such a lovely, beautiful member of our family is now gone.

This picture of Gaven was taken just a couple of weeks before he died.

While the boys just want to go to the zoo to have fun and explore, to me it's an important reminder of what our family has endured.

The speaker, Dr. Canine, talked about the 4 R's in grief. I admit that I can't remember but three,
Remembering, Reconciling and Reinvesting

The last, Reinvesting, really resonated with me today. After Gaven passed away, I had so much love and energy leftover; I didn't know what to do with all of the feelings I had for him. I had planned on giving it to him over the course of the next 50 years or so.

Dr. Canine encouraged us to 'reinvest' that love - into our other children, organizations, and helping others. So, that is what I do...I reinvest that love, into Ada, Nolan, Davrin, Gabe, Lauren and to Gaven. I will always love and miss that little boy but without him here, I know that my love is still needed by so many others.

On the way home from Lansing, we stopped at Trader Joe's in Ann Arbor to stock up on snacks and stuff for lunches. My oldest son, Nolan, met us there as he was done visiting his girlfriend, Alex who attends U of M. (Nolan attends college at Central Michigan University - majoring in photography...holla!)
How fun it was to see him amongst the nuts and chips and for his two little brothers and little sister to be so happy to see him. I was so glad he could meet with us - just to reconnect and to remind him that I love him.

That's what it's about - realizing that your love will never run out, no matter how much we give.

Acceptance:

2008-10-04T19:58:00.000-04:00

Is acceptance a slippery slope, constantly changing and challenging us or is it a one shot deal? I think it comes in stages - sometimes easier than others.
I'm not happy that Lauren has Down Syndrome but I do accept it in the same way that I accept that Gabe is strong-willed and Ada has bi-polar disorder.

I love Lauren's little peculiarities and the fact that she is unbelievable sweet and good-natured (most of the time). I love it that my radar is now tuned into other kids with Down syndrome; I look for it in all of the faces of the children I meet and am disappointed when all I see is a 'typical' child.

When I was 15 weeks pregnant, I had an amnio done to find out more about this baby I was carrying. When the news came, 2 weeks later, that Lauren had DS, I was more than sad. I was angry, dissappointed and filled with disbelief. How could this be? Why? Matching my feelings were my husband, my family members and the medical community in general. "You can terminate" was the most common reaction and for awhile I thought that that would be for the best.

Fortunately, we saw beyond that and realized that there would be no long term peace with that decision. It still frustrates me that that is even presented as an option, so readily and so openly.

The remainder of my pregnancy was filled with great anxiety and angst. While I knew that Lauren would be brought into the world, I wasn't sure that Chaz and I would be the ones raising her. We decided on adoption and found that there were hundreds of families eagerly awaiting the arrival of a child with Down Syndrome into their lives. What a wonderful and amazing thing. We met some loving people who would have given Lauren an amazing life.

Well, it's a long story and obviously we kept Lauren in our family. I have never looked back or regretted that decision in the least.

but, I'll admit that i've spent alot of time since then convincing myself that things were going to be okay. And, Lauren, in her own unique way has spent more time convincing me that she deserves to be here and that things were going to be more than okay. She is a true delight and a great addition to our unique family.

Developmental Milestones

2008-10-03T20:28:00.000-04:00

This is a toughie for alot of people, including me. When our children are born we immediately begin taking care of them and thinking about the days to come. After spending so many hours keeping them safe, fed, dry, warm, content it's natural to begin wondering what is next. Heck, we begin hoping things for them before they are even born; will she be tall and slim? will he be great at math? will she learn to talk early? will they be truly happy?

As days turn into weeks and weeks turn into months, our expectations for them come from all sides. As early as 1 month old, we are looking to see if they've met the few developmental milestones for that age. People constantly ask what they are doing. If we've subscribed, we get a weekly newsletter from babycenter.com, telling us what our baby may be doing this week.

It turns alot of us into milestone maniacs. We want our kids to do things ahead of the curve or at least right on time. If not, there is a sense of letdown - after all, we want our kids to be the best they can be.
When your child has Down Syndrome or any other of the many possible syndromes & conditions that affect development, those milestones take on even more meaning and angst.

I don't think that Lauren will walk by 18 months (the very edge of "normal" development) maybe not until 24 months or later. And yes, that kind of bothers me. Some of my kids have met milestones very early and that is pretty exciting. I guess there is a false sense of pride when our kids do this -- because even though I take my job as mother very seriously and have always provided the proper stimulation for their development, they are still going to do things when they are ready to do them. But still, one of my kids began reading books at 3 at that was very cool and very exciting.

What i'm getting at, in a very round-a-bout way is that my expectations for Lauren are still very high - but they are different than what I have for my other children and what you may have for your 'typically developing' child. I have had to readjust my expectations a bit based on what is typical of kids with DS. The great thing is that she will most likely learn to do everything that is necessary to succeed in life.

Besides, she's always been off the charts in sweetness.

Do you know anyone with Down Syndrome?

2008-10-02T21:24:00.000-04:00

Rather than do all of the writing, i'd love it if you would take the time to share your experience with someone with Down Syndrome. Did you grow up with someone with DS? Go to school? Have a neighbor? Teach or coach?
Whatever your story is, please share it here.
Thanks!

How Much is Enough?

2008-10-02T20:34:00.000-04:00

When your child has 'special needs' there is an almost constant, lingering worry that you are not doing enough. Granted, all parents worry about this at times, but I find it different with Lauren and Ada. Today I met with a parent from the hearing impaired program and we agreed that, at times, we've both felt like we need to always be working with our children.

Does Lauren get enough time on the floor? Do I sing, talk, read, sign to her enough?Do I give her enough opportunities to feed herself? Is she drinking out of a cup enough? How many times did she walk on the treadmill?

and that is just the beginning.

At the end of the day, as I take stock of what we've accomplished and how that differs from what we hoped to accomplish, all I can do is say "we did okay" and that is enough.
Tomorrow will bring a fresh start on all of these tasks and more.

Ultimately, I believe, Lauren will reach her full potential, not only because of what I do with her but, also, in spite of what I do. As with any child, it will take time and work to bring her abilities to the surface. As long as I spend more time nurturing them than squelching them, she'll probably be okay.

Well, it's been a very long day and I need to rest up for tomorrow!

People First Language

2008-10-01T19:19:00.000-04:00

The first order of business is to get us all on the same page linguistically speaking.

People First language is a movement to help improve the representation and acceptance of babies, children and adults with physical, mental or emotional challenges. By stating who they are first and what condition they have, second, it retains their integrity and value.

For Instance: Lauren is a child with Down Syndrome. She is not a "Down Syndrome baby" nor a "Downs Child". She is a CHILD first and she was diagnosed with Down Syndrome.

This may seem petty to you but it bugs the heck out of me (and lots of other people raising children with differences). I know that when people say something like Downs baby that they aren't trying to be insensitive but it would be nice if Lauren and others like her were recognized as children first.

You may be surprised how often you don't use People First language in other areas of your life.

Instead of saying: Did you see the way that ditzy blond cut me off? say instead, "Did you see that woman with blond hair make an irrational choice in switching lanes?

Give it a try - it's easier than you think!

31 for 21 - Down Syndrome Awareness Month

2008-10-01T19:16:00.000-04:00

hello family and friends! As the mother of a child with Down Syndrome, i've decided to participate in this month's Blog Challenge - 31 in 21. The idea is for people like me to raise awareness of Down Syndrome (DS) during the month of October.
Up till now I have not been an active Blogger but I hope to share at least 31 mildly interesting posts with you.
This is also your chance to ask questions about Lauren, specifically or DS in general.
Everything you wanted to know about DS but were afraid to ask.

Sooooooooooo...let's get started!