Friday, February 13, 2015

Baby Steps



           So much I know, that things just don't grow if you don't bless them with your patience.  
                                                                                                                 --First Aid Kit


So if you don't follow me on IG, then you missed this awesomesauce video I posted of Lamp the other day with the following caption:

So much to say about this 11 second video... it has taken almost a year from standing independently to taking these first few steps.  Honestly I didn't worry or think about it too much because what could we do?  @brackdawg (B) on the other hand took matters into his own hands and fashioned a Tiny Time like crutch for her and suddenly she might as well be walking on water for the amazement and miracle it is for us to see. Sometimes I feel like I'm a pretty good mom for her, but I often find myself thinking @brackdawn was born to be her dad. And the icons on the cake is always that infectious giggle and light radiating like an atom bomb of love, ice cream, rainbows, and pixie dust.


To be clear those weren't her very first steps as she had been practicing for a couple of days, but you get a sense of how exciting it all is. Also, she wouldn't be taking these steps if it wasn't for her dad and his amazing crutch making skillz. You may remember he was also the one who invented her spoon (and now we have a fork) for her to eat all by herself with.  She literally went from being spoon fed everything or bending over and eating directly off her tray, to being able to feed herself overnight.  It was life changing.  The crutch could very well end up being a game changer as well, however unlike the spoon it will take a little more time to figure out. And when I said I didn't worry or think about it too much, that doesn't mean she (we) haven't been working to make this happen for a long time. This girl has done therapy every week since she was a few months old, at one point 3 times a week. Patience often sounds so passive, like sit back and wait and as long as you do it calmly, then you're being patient. In reality patience usually requires that you work your butt off to make shiz happen, and these few baby steps are the result of years of that kind of hard work.

My favorite thing about this video is the giggle and laugh at the end when she falls over because that is Lamp to a T. I'm not saying she never gets frustrated or grumpy she does--I don't like it when other people put her on a pedestal and I try not to perpetuate that myself--but she really does have a brightness about her I don't want to downplay either. As we all sat around and watched Zuzu take her first steps the week after her birthday, Lamp was cheering just as loudly as the rest of us. She was genuinely excited to watch her little sister take her first steps while never having done so herself. Minutes after those steps and feeling extra motivated, Lamp said it was her turn and she wanted to try walking as well.  So of course we got the brace on and helped her do her best, which to the untrained eye probably didn't look like much. B and I exchanged half smiley looks that conveyed both gratitude and grief, because you know... life. So yeah the giggle and girlish scream at the end really do say so much about who Lamp is. To clarify, I don't think she is choosing to be happy, I just think she is happy. She was born this way and like other natural gifts and talents it's not about lavishing praise on her for a trait I  believe she was simply blessed with, but rather about feeling gratitude for the gift in the first place. Either way, it is a wonderful energy to be around and part of the reason I don't worry about her too much.  You know, too much.  

You guys, the spotlight has been like crickets for a while now... this is probably the longest I've gone with very few emails and leads so if you know anyone who would make a great spotlight have them email me.  Or if you would like to participate please email me at thislittlemiggy at gmail dot com.  I love the spotlight and have always been so, so grateful for each and every person who has made it possible.  So thank you and lets get this thing back on track!

I hope you have a great weekend!
Hugs,
Miggy

12 comments:

  1. So cute! Have you considered a wider base on her prosthetic just temporarily to help get her going? I used to train people to walk on stilts, and a wider 'foot' used to really help. Go Lamp!

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    1. Anon--I don't think that would work for a few anatomy specific reasons. Rather than giving out full medical detail, I'll just leave it at that. Thanks for the suggestion though! I know it was meant in genuine support and love. :)

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  2. Oh my gosh, she is so cute. Love that giggle. I love her spirit.

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    1. Thanks Debby! It's been a while since I've seen you on here. :)

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  3. This is awesome! She is adorable and I LOVE her excitement at her accomplishment. Go her!!

    I think this little boy on this blog had a similar congenital limb issue, which affected his legs. He was adopted from China. He ended up having surgery to be able to better wear prostethic legs and immediately TOOK OFF. As if he had always had fully functioning legs. Somewhere buried in their blog are the videos of his first time walking on his new legs. http://bringinghomeholland.blogspot.com/

    KIDS ARE AMAZING! They don't worry and limit themselves the way that we do. They just do it and because they just do it, they make the hardest things look so easy!

    There was another little girl on another blog whose family also made the hard choice to remove her congenitally different limb in order to give her best use of a leg and she too TOOK off. Seeing her in action amazes me. http://jacobsjourneyhome.blogspot.com/

    Is that type of surgery being considering to allow Lamp to walk independently? I know its a HARD decision to make. But Im curious. Sorry if I'm overstepping by asking.

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    1. Jue--Like I said to Anon above, I don't see these being great options for reasons specific to her limb anatomy. Like most conditions there is a spectrum and each person is so unique. For limb differences--especially when multiple limbs are involved, most especially with all 4--I find that while some people have similar difference to Lamp, I've never seen anyone really that close or even close to enough to suggest that a treatment/therapy/surgery that worked for this person would or could work for Lamp. She has a lot going on with those limb bones of hers! :) So surgery has been brought up as a possible option in the future, but thankfully we have a Dr. who works specifically with limb different kiddos (the first and only I've ever known) and he understands that while surgery may be the best option if walking was our primary goal, but since Lamp uses her feet as her hands, he doesn't want to do anything surgically that would take away the functionality she has with them now. While I don't think you're overstepping by asking, I hope you understand why I'm not going to go into detail about her medical stuff.

      And yes, I think that kids (those born with congenital issues) definitely seem less encumbered by these thoughts than able bodied adults. They are who they are, and they work with what they have...good lessons for all of us.

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  4. Love, love, love! Love Lamp's awesome giggle, smile, and scream, and love reading what a great mom you are. Don't worry, not putting you on a pedestal, just complimenting you and thanking you for your awesome example of how to respond to our wonderful kids and their wonderful gifts and challenges. :)

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  5. Oh, and I love Lamp's actual walking. Way to go, Lamp!

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  6. I am so so so happy to see this. I have watched the video dozens of times. It brings such joy to my heart to see another avenue opening up for Lamp. What a sweetie, this is so inspirational!

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