Tuesday, April 26, 2011

magic wand...

more alike…this is a great mantra…a great saying…not so great when you are waiting for the piece that makes your child more alike…the piece I see Maddie struggling at …something effortless for one child…but not so for my Maddie she has to practice over and over and then over again…when she was a baby I reveled at the notion that Maddie was not like a typical Ds child…I loved that she was at the “norm”…developmentally and she was keeping up…even in some things she was considered ahead of the “norm”…gradually this was no longer the case…quietly I was not told any longer that Maddie was “typical” that Maddie was doing great…instead I was told that Maddie was doing great for Maddie…that Maddie is finding her own pace…and now we are approaching Maddie’s 2nd birthday…and the delays are in front of us...at our door step...knocking loud and relentlessly challenging my strength…I know in my head she will do it…she will do anything and everything…in my head I get this....but in the process of watching and cheering…I want to just step in and do it for her…I want to snap my fingers and make everything ok…someone told me that Maddie would not know she was behind…but she does...I can see it now...it is glaring…as the little 1 year old boy runs away from her...she is left and unable to catch him…she tries…she stands up and takes a few steps…and falls…she puts her head down…rests…she knows…after a sigh…she gets up and tries again...just like the little train that says I think I can…I think I can…Maddie never gives up…but as her mom I want to fix the delays…they are there…and they can not be fixed or put a band aide on…. she is not more alike…not yet…but when she masters the next milestone...I will feel better and say look she is more alike…its just the watching and waiting that bugs…

10 comments:

  1. I wish I had that magic wand too...I would share it with you! :) I watch Sutter watch Rich and Landon play/rough house and I can see it in his eyes that he wants to do it too and it breaks my heart. He wants to run and play with them but he knows he can't. One day he and Maddie will both be running and keeping up but for now we have to wait - I hate waiting!

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  2. I too have seen Owen frustrated and frankly p!ssed off that he can't get his body to work the way he wants - And they wonder why people with DS can be "stubborn", maybe its learned through the determination and resilience to keep trying over and over again, to rage against it and to finally get there.

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  3. oh and I forgot to post on the butterfly photos they are amazing - I'm a little whooodoo voodoo about butterfly's I think they are little messengers of hope and love and you are very blessed if one comes to rest on you - and look at Mad's - being totally, totally blessed - just beautiful

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  4. Oh, I hear ya loud and clear! Emily still hasn't taken her first steps yet and I know I need to be more patient, she is going through chemo so I understand that may delay her even further. You know what though, I think part of what makes our kids so awesome is that they just keep on trying and they NEVER give up and I think or I hope Emily will be an even better person because of her tenacity. I love the new header, it's adorable!

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  5. I think waiting for that true independent ability to walk like the other kids is tough. I know once Kristen started walking better, I could cope better with life and Down syndrome. Patience is hard, and I too still would love a magic wand to help with the delays. But, what I can say, is Kristen has a determination unlike most and a sense that "I can and will do it myself.". She always does...just as Maddie will as well! Hang in there...she is doing great!

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  6. All I know is I go through this very same thing...I am fine for months with Russell's progress and then I have a down period, where I wish he could do more. And I have seen him get frustrated when he cant do something...he may not know he is behind his peers in development, but he does feel the frustration of not being able to get his body to do what he wants. And that hurts.
    As always I am thankful for your honesty in your posts!

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  7. Right now Eslea is refusing to sit. Refusing. Stubborn thing.

    Good post. We all go through it and feel it. We want them to be independent. So we wait. And it sucks. -erin

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  8. I go through this too. Sometimes the delays just don't bother me. And sometimes they do...I'm not patient so the waiting can be really hard for me!

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  9. I found you on another blog I follow, "our unexpected journey". Your post really got to me. Although my daughter does not have DS she does have a genetic brain disorder, that although she has 5 MRI's that show the damage, and manny other issues, is stil undiagnosed. All aspects of her development are affected, and I am always waiting for another shoe to drop, so common as that been for 9 years. As others have said, I have found ceartin feelings come in waves, depending on how she is doing at the time. I don't think there is a mother out there that doesn't get frustrated or want to cry when they witness their child struggling. Parents of special needs children see it more often, but, I will say 9 years into a very difficult path that although the lows are painful, the highs can make it seem so worth it. I don't take a word my daughter says for granted. Each time she gets dressed all by herself I marvel at the work she has put into it. I do my best to hold on to these accomplishments on the difficult days. We are parents, not saints, we are going to have bad days, weeks maybe even months. A dear freind told me that this journey is not a sprint it is a marathon. Pace yourself and give yourself a break. Your daughter is so lucky to have you and you are so lucky to have her. I belive my daughter and I are really a match made in heaven. My thougts are with you!

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  10. When I started a blog just a few months ago I also started looking at other blogs. I found there are a lot of them to read and yet somehow I happened to read one on which you'd left a thoughtful comment. That made me click on your name to see your blog and I was surprised to see you lived in the same town as me! I know I already told you that but I'm still surprised. I mean, what were the chances?

    I didn't realize it when I accidently found your blog, but I'd actually heard of you a few years before. Recently, when I was telling a friend about your blog, she reminded me that I'd already known about you. She had told me a few years ago about a couple having a baby with Down's. I remembered then that I had prayed for the young couple. I prayed for you to have strength as you welcomed this new life. I prayed for your baby's health. I prayed for your courage. And then I guess I kind of forgot about you and your family.

    As I did a couple of years ago, I am again praying for that young couple with the baby with Down's. I pray for your strength and courage. Now, because of your honest posts, I know to also pray for strength and courage for Maddie.

    I enjoy reading your blog, both for the honest and heart-felt posts about your challenges, but also because your love and fierce protection is inspiring. You are a good mother! I'm rambling a bit but I just wanted you to know you have touched my heart and you are being held up in prayer by a stranger.

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