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Tuesday, September 13, 2011

Arthrogryposis Multiplex Congenita

Or AMC..... This is the name of the condition Erika was born with.   One of my biggest fears as a mom is when Erika falls.  She is REALLY balanced, but that doesn't mean she doesn't fall now and then.   Today, she was in the hammock and rolled out of it. 
Now, typically, I am off to the rescue.... because it is just HARD to watch your child struggle.  It really is.  I want her to be able to just GET UP and brush herself off, but that isn't the way things are. Not by a long shot. 
YET..... we are so thankful that Erika can WALK!  We are thankful she can knit, and how wonderfully sweet and bright she is. She is our ray of sunshine every morning. :)

Today, instead of going to her rescue, as we have been working on ideas for her to get up alone when she falls..... instead, I armed myself with my camera.  :)  I stood inside and she didn't know I was there cheering her on.  Both Mike and I watched her get up and I am so proud of her!  She gave me permission to post this video of her efforts.  :)
videoAs a mom, to more than one child with physical disabilities, I can honestly say, the hardest part is not rescuing and letting them figure things out for themselves.  Erika has learned to do MUCH by ME stepping out of the way and letting her blossom!
Love you so much my sweet girl!

8 comments:

:)De said...

OH MY! I was holding my breath and raising out of my seat the whole time I was watching! I am so happy that she has figured out how to do that on her own. What a wonderful accomplishment.

It is so hard to watch them struggle, but the gain of knowing that if you are not there, she will be able to get herself up is huge.


Way to go all of you for supporting her as she learned this. I can go back to breathing now. ~Smile~

Julia said...

Wow!! She has more use of her arms than Aaron. His way of getting up is unique because he has NO use of his arms to propel himself up. AMC kids are unbelievably creative!!

Ivy said...

Hooray for Erika! We love you!

Holly said...

Well done Erika! :D

BTW I completely forgot to buy you a postcard yesterday, but I will definitely get one tomorrow when I'm near a decent mall. :)

Hevel said...

Yay, Erika!

Chiara Elena said...

Come on, come on YEEEEEEAAAH. It was like watching baby first steps. I'm sure she was proud of herself and confident to be able to solve things on her own next time. Give her a super ginormous HUG!

Sarah Kovac said...

Hi! I'm so glad I stumbled across your blog. I have a Google alert set up for arthroryposis, and that's how I found you. I wanted to leave you a little note of encouragement. I am 27, and I also have AMC. I don't know how it affects Erica, but I am affected only in my arms, which are nearly useless. I use my feet for almost everything, but my parents were so wise to let me struggle and fall and do all kinds of crazy things. Now that I'm grown up, married, and have a child of my own, I can't imagine how hard it was for my parents to take the training wheels off my bike or let me roller blade for the first time. I can't fathom the pain when my mom rushed me to the hospital over and over with broken arms. My son is only two and he has no disability, but I still want to keep him from all pain. You are wonderful parents for allowing Erika to work through difficulty and struggle on her own. YOU ARE WONDERFUL! My catch phrase these days is, "Struggle is not a four-letter word." Keep letting her struggle. You will raise an independent, confident young woman.
If you are interested, I wrote more about my own mom, and the crazy things she let me do in my Mother's Day blog post this year (my gift to her): http://www.sarahkovac.com/2011/05/some-things-you-should-know-about-my.html#.TnCkf1mx2Sp

Katie - a Blessed Mommy! said...

OH WOW!!! Way to go, Erika! (& Christie for that matter!)
Thanks to both of you for posting this & sharing - so encouraging for moms like me - so hopeful that one day my Ellie girl will be able to independently stand up!
Thank you!
This reminds me of Will - when he so badly wanted to climb up into his fort independently but had not figured out how to do so. One day, he had a friend over & I watched as that child, 6 months younger than him, went repeatedly up and down the fort like it was no big deal. Will, meanwhile, was watching & really struggling to try to climb up. I could see that he nearly had it & every ounce of my being wanted to jump to his rescue & help him up. So I sat on my hands. And my friend sat beside me as I tensely watched... and suddenly, I watched my son with limb differences climb that stupid fort. And I cheered. And I cried.
And we celebrated.
Aren't we blessed to know what a victory these types of things are - others might take them for granted but we cheer and pray and cry and celebrate.
So way to go, Erika! We are celebrating with you!!!

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