Thursday, December 24, 2009

Dear Santa...

all I want for Christmas is peace in me…I know this is selfish…but that is what I want…I want to accept that I have a Down Syndrome child…who I adore and secretly want to be “normal”…I want to go to sleep at night knowing that it is ok when I wake up in the morning…and she is still a child with Down Syndrome…I want to sit in silence and be ok with the thoughts racing through my head…I want to not freak out when Maddie throws up or has a routine doctors appointment…I want to be ok that she may live in a residential home or with me forever…I need to accept that she may never be independent…I want to be tolerant that people will say stupid things and roll there eyes at me…I need to be understanding that very few people understand my world…Santa I am not asking for much so please PLEASE let Maddox drive someday!

3 comments:

  1. I understand you completely. I totally identify with most of the stuff that you are feeling. My name is Paloma, and my daughter, Regina, has Down Syndrome and just turned 2 last month. Do you have messenger?

    Also, feel free to add my blog :)

    Merry Christmas! <3

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  2. If I could be so bold to say, Put Maddie first.

    She is a child first, foremost.

    Strip away the label "Down syndrome child" because you'll be fighting that label for the rest of your life once you see your daughter for who she really is...There really isn't a "Down's child" or a "Downsie" or any other label that defines Maddox. She is her own person who happens to have Down syndrome.

    And Maddie deserves to believe that she can drive a car one day. Why can't she have that dream? If you believe in her, she can do anything she wants to do. But YOU have to believe, too.

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  3. Hi Kimberly,

    We all experience things in a different way, which I think it is part of being humans. Our experience of parenting our first child with T21 hasn't changed anything to us. Having a our son has been a learning experience for us. I learned to not feel sorry for my son or for us as parents. It wasn't our faults or the baby's fault. If we felt sorry for ourself, people around us would feel the same for us, which it is not fair for my son if I want him to be included.

    He is my first child and I don't let the syndrome take over my child because it is something he has, it is not what he is. We enjoy our son not matter what. I have learned to not be worried about the future, because we cannot know the future. But I can influence the future if I give him all the skills he needs in the present. I do believe all kids with our without the syndrome have abilities, but our role as parents is to help them to reach their full potential. How we stimulate our son today will help him tomorrow. STIMULATION is the most important for any child.

    I have learned that what it is normal for me it is not normal for others. The word "normal" is a tricky word. Raising my child with T21 is what normal is to me. I don't know other way. It is stressful sometime, but it is rewarding most of the time. My son is 21 month and he is not walking yet, but it doesn't stop him for chasing the ball or going up the stairs to the bathroom every evening because he knows it is bath time. He enjoy the slide as any other toddler after I say: "ready, set, go". As my husband says: The sky is the limit. My son doesn't know limits because we don't limit him, it's the way we are. This is our normal way.

    I have learned Not to stop dreaming about my son's future because he will do everything he wants to. I will be there to support him. He will learn to drive, it may be at his own pace. I learned to drive at my 30s and it took me 2 years to learn, ha, ha ha (I am smart, I was the valedictorian when I graduated from the University, but there are things I do in my way).

    There is a blog a personally like so much http://mylifewithgabriel.blogspot.com/

    This family is a true inspiration, they don't know limits. It is amazing everything their child with T21 is doing.

    Keep the faith and the hope in your daughter because they are the most powerful therapies for our souls. I don't know how is having a child without the syndrome and this is ironically normal to me.

    Kisses and hugs!

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