Monday, November 30, 2009

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

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.

Thursday, September 17, 2009

When reality hits you in the face.


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.


Monday, August 31, 2009

Through their eyes....




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.

Wednesday, July 29, 2009

Zoo Trip - LoLo style

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....

Friday, June 26, 2009

Smug


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.

Thursday, June 18, 2009

Sometimes, it's confusing.

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!

Sunday, May 31, 2009

Wednesday, May 20, 2009

school visit...

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?

Wednesday, April 29, 2009

Lauren Love

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.

Tuesday, April 28, 2009

Life as I know it...

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.

Tuesday, April 21, 2009

(almost) Wordless Wednesday


















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.


Saturday, April 18, 2009

Favorite things - LoLo style

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....

Wednesday, April 8, 2009

Toddlers and Tiaras

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....

Monday, March 30, 2009

the Talking Hands

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.

Friday, March 27, 2009

Advocacy anyone? Everyone?

"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?


Sunday, March 15, 2009

Christmas everyday....why not?

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.

Monday, March 9, 2009

Lauren - at daycare



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.


Thursday, March 5, 2009

Ada




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.

Tuesday, March 3, 2009

"Just a Mom"

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.

Saturday, February 14, 2009

On being an older Mom..

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?:




Sunday, February 8, 2009

a little outing

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.

Monday, February 2, 2009

She fights naptime....

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




she






wakes up happy!

Sunday, January 25, 2009

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

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.

Wednesday, January 21, 2009

18 months




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~

Wednesday, January 14, 2009

Early Intervention

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!!

Sunday, January 4, 2009

Bedtime Stories

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.

Gabe, Curtis and Dav

Future Drummer?

Future Drummer?

SWEET LAUREN