Saturday, February 24, 2007

Hope comes in the strangest places

My Favorite Child

Found this video today on youtube, and gosh how my heart broke. In all the beauty of this loving and gentle video, there is so much heartache and so many awful images of what life used to be like, when our kids were sent away as little children "to be with children LIKE them". The portion of the video inside the group home will stop your heart for a minute, watching the boys, many of whom have DS, makes you want to break the door down and bring them home. And yet, those boys are middle aged men now, long lost to the ravages of life away from their families. I see his face as a little boy and I see so many familiar faces, faces of children I know and love today. I can't help but see in them who he might have been. No doubt this family adored their son. It was just how it was done then. Tonight, I am thanking God that this is not how it is done now. And that my child and all the others will have the chance to grow up loved, included, belonging. There is the same spark in the baby and little boy Dwight that there is in my girl, that sweetness and innocense. I am grateful that I live in today, when we no longer send our children away. But I am sad for us too, because now we just make the awful choice not to let them be born at all. Who is roght, and who is wrong? All I know is that I thank God for my daughter, genuinely, deeply, that He entrusted me with someone so precious. Hope you enjoy these videos, I did.

Sunday, February 18, 2007

we are trying something new

I have been reading for a long time now about Ginkgo Biloba and it's effects on the brain. Several studies have been done that encourage its use in people with Down syndrome. It seems to be a GABA inhibitor, which helps the brain tune out extraneous stuff and focus and remember better. I am not one to jump on the "cure DS" bandwagon, and I am pretty firmly opposed to using medications without darn good reason. We never bought into TNI or any of the "miracle drugs" for DS. But this one just seems so right for us, and I hope time will prove it is a good decision for Ciarra.
We put 14 drops in a little bit of orange juice at bedtime, she doesnt even know it is there. It is supposed to take a few weeks to really see a result, but already I can say...SOMETHING is going on thats new. Longer sentences, fuller language, quicker recall...something. I taught her today about adding favorite channels to the remote control of our new tv, and she remembered it immediately and used it, and it is an involved sequence of steps.
I had her teacher gauge her ability to recall numbers, and will have her retested again in a few weeks, we have feb vacation, then we leave for Florida for a week on top of that. By then there should be some effect if there is going to be one. I am not looking for a miracle cure, or to "fix" daughter is not broken. But I would love to give her a tool that can help her remember a string of numbers, and to remember things taught to her a little more easily. Time will tell. I understand that this stuff cannot harm her in any way, and have researched that extensively. Maybe it wont do anything, but maybe it will work...I will let you know.

Ciarra the Stunt Girl

Sunday, February 11, 2007

Insert Evil Laugh

I feel a bit like James Bond this morning, plotting and planning the next step in our day with an eye to the future and a plan to hatch along the way. Ciarra is 8 years old now, and beginning to be a big girl. This last year has been a mixture of goals met, goals adjusted, and new goals made. I have been reminded several times this year that Ciarra has Down syndrome. You'de think I would have that all clear in my mind, funny thing is sometimes I forget. She is such a typical kid, her life is so normal. And yet, as she grows there is this steadily widening gap between her and "typical kids". In many ways, I am grateful for the gap. She, unlike a few of them, is not yet lying or being devious. She has not yet done a bad deed for which she hasnt taken the blame for. She is honest to a fault, kind to an extreme. But the gap brings with it other things, too, things that set her apart in ways that arent as easy to digest for this mom who wants only the best for her daughter. Things like the first cracks in the social scene, that slight lilt in the voice of her friends who sometimes now mother hen her versus talking to her. Or who lovingly smile at her as they walk off with their regular friends to go do BIG kid stuff. Ciarra keeps up nicely, but even so, it seems the sepaeration has begun, and in some ways they are outgrowing her. She still has wonderful friendships, dont get me wrong. She still has her same two best best friends, Jade and Jacob. They still call her all the time, they still call out her name on the bus "Ciarra, sit with ME!" But some of the other kids are moving into the roles they will assume as adults, the leaders, the planners, the followers. Ciarra is not a leader, in most ways. She is not a follower either, thankfully. She lies somewhere squarely in the middle, very sure of herself and opinionated (where'de she get THAT?) and yet desperately bonded to her classmates, all of whom she calls her "friends". Some of them are, for sure, true friends who welcome her with a hug each morning. But to some of them, the morning hug is passe, they are BIG now, with little time for her halting speech and little kid ways. None have ever been unkind to her, and I believe they all genuinely care about her. But like all of us, not everyone is going to be your best friend or think you hung the moon. Kids mature into people who judge, the innocense of total acceptance is teetering, and soon enough, it might not be all that cool to hug anyone, ever. For now, I still smile and thank God when I see her and she hasnt yet seen me, walking down the hall to lunch or delivering notes to the office, and there is a girl on either side of her, holding her hands, skipping down the hall, laughing and smiling. In my mind, I realize that these moments become fleeting, and soon they will all be hurtling into middle school, and she will be lucky to have those moments of friendship. They will be less often, they will be less spontaneous. They will be more thought out, a decision made to include her because it is the right thing to do. I am not fooling myself, childhood is brutal. Having DS will certainly not make it easier in some ways. And so I plot and plan, and try to think ahead and imagine the future. Which brings us back to today.
We live in a very rural community, where there are exactly TWO children with DS in the entire district. The other child is a boy a few months younger. He is a wonderful boy, and I love him. But even Ciarra seems to be frustrated with him at times, he doesnt want to play much, he only wants to watch tv. Other than the DS, there is little they have in common. He has never been to the movies. He cannot handle the noise of the concerts Ciarra loves. Many of the things she loves, he is scared of.
I want her to meet people with DS who enjoy the things she enjoys, who love sports and music, the movies, bowling, roller skating, and all the other things 8 and 9 and 10 year old love. I want her to have a peer who is LIKE her, who lives life exuberantly, happily, joyfully. I want her to not feel so alone, with her DS. I want her to know that there are others out there with DS who are just like her. They have bright futures, parents who make it all possible, and are not scared of their own shadows. I want a reach for the sky kinda kid in our lives. I want other parents who believe there is no limit to what they can do. I want a fellow traveler for her. I want a little boy who is raised to know no barriers, who will never stop believing in himself, or in her, as they grow up.
And so, I am taking my darling daughter 2 towns away this afternoon, to meet a little boy who is so much like her he could be her twin, in an open gym program for kids with disabilities. I have an eye on the future, and I feel a little devious. I am in a way letting go of the belief that she is "just like other kids" and grabbing on to "she is unique" and therefore requires someone just as unique. I hope they hit it off, I hope they become friends. I hope it is not wrong of me to want this. Because I can see him in a little suit in a few years, at the 5th grade school dance, laughing with my daughter and truly being her friend, with no thought, and no worries about what anyone else thinks, and no concerns for anything but living in the moment.

Monday, February 05, 2007

It is better than ok.

you know how you look at your little kid with DS and you have this fear sometimes, what will the future be like? Will he still be cute? Will people still love her? What will life be like?
Let me just tell you. I sat watching Ciarra get ready for the bus this morning and remembered all those worries and wonders I had back then, and I thought about all the new kids coming along. And I felt this sense of peace. Its OKAY. Its really really really ok. She is happy, she is thriving, she is precious and gentle and loving. She is everything a child should be, with some added bonus tracks. Sure, there are things that are different than I would have imagined them to be when I made my wish list. But there are so many things that came extra that I dont dare to even imagine more. Our lives are normal. She waits for the bus by the window in the morning, talking about her day, about vacation coming soon, telling me she would rather go to Florida today (we are going in 3 weeks) and asking about after school.

She slurps down her cereal, kisses the dog, snuggles with the cat, reminds me to kiss her brother (I already did, but she makes sure I do it again for good measure.) She runs her bowl to the sink, then flies back to peek out the window again, and she is caught in a puddle of sunshine, and my heart is just in my throat. She is beautiful, in my eyes, so beautiful she makes my heart stop.

And she is big now, though still little. But plenty big that Im not afraid anymore of her future. [i]She[/i] makes it, and I just guide it along. And she is [i]capable[/i]. And she is funny, and sweet, and endearing. And stubborn, and bright, and undeniably maturing. And I love this child exactly like she is, every detail of her face, especially the ones that come from having DS. They are like a badge of honor to me, those precious Brushfields spots that make her eyes shine, the soft slant of the eyes that once looked so foreign to me now seem so incredibly indelibly a part of her. DS doesnt define her, it just adds to her beauty. And she is going to be ok in this world, because she has this amazing little heart that leads the way, this fight and determination to be everything she can be. And she has taught me that that is more than "enough" it is plenty. It is an embarrasment of riches. I am looking at this half grown little girl and wondering what did I ever fear? Certainly not her. What I feared was change, what I feared was my own inadequacies. What I feared was that I might not be a good enough person to handle this...thing. And this thing has changed me and made me stronger. And it has made me see that she is perfect in every way, exactly as God made her. And lucky me, shes mine.

Sometimes it is painful to watch her grow up and move away from me, in tiny baby steps. But it is part of the journey I think, to be taken from one extreme to another and be ok with it. I just thought maybe some of you new parents might like to know. Our life is good. It really is going to be ok.