Saturday, December 27, 2008

the gift in the back seat

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.

Thursday, December 25, 2008

Pictures, Pictures, Pictures

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!)
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my busy, busy boy Gabe having some hot-cocoa with his whipped cream.
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my friend,Tracy's kids in our church's Christmas play
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Miss Lauren at Gabe's school concert performance - hammin' it up!
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Gabe, Curtis (friend) and Davrin having some outdoor time together.

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Monday, December 15, 2008

kind of a non-post, post.

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!

Saturday, December 6, 2008

My 6 year old.,,,A Gabe Story

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.

Sunday, November 30, 2008

The gift of choice

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.

Friday, November 28, 2008

Do people with Down syndrome suffer?

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.

Tuesday, November 25, 2008

My trip to the "C" lab

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.

Wednesday, November 19, 2008

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

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.

Monday, November 17, 2008

Bananas and medical bills..

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:
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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.

Friday, November 14, 2008

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

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!

Saturday, November 8, 2008

People are hurting.

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.

Monday, November 3, 2008

now I can write about anything I want...

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!

Thursday, October 30, 2008

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

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.

Saturday, October 25, 2008

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!

Wednesday, October 22, 2008

the love that is Lauren

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!

Monday, October 20, 2008

Long time no see

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

Saturday, October 11, 2008

alone yet united

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.

Thursday, October 9, 2008

Daycare dilemna - solved!

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.

Wednesday, October 8, 2008

One of those days.......

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:

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Tuesday, October 7, 2008

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

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!

Monday, October 6, 2008

Just another day

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!

Sunday, October 5, 2008

Trip to the Zoo

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.
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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.

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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.


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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.

Saturday, October 4, 2008

Acceptance:

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.

Friday, October 3, 2008

Developmental Milestones

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.

Thursday, October 2, 2008

Do you know anyone with Down Syndrome?

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?

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!

Wednesday, October 1, 2008

People First Language

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

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!

Gabe, Curtis and Dav

Future Drummer?

Future Drummer?

SWEET LAUREN