Tuesday, April 16, 2013

Baby Steps


He pauses, carefully considering the uneven earth beneath his feet. He steadies himself then slowly, carefully, deliberately lifts one foot and takes that first step. A grin spreads across his face and he glances up at me, clearly relishing his accomplishment and my (unabashedly giddy) claps and cheers. Another step, this one faster and less cautious, then another, and another… until he is half-running, half-falling towards me. He reaches my arms just as his balance gives way completely, and he falls into my embrace. “Good job, Zeke! You did it!” I tell him, but he is already off with some new adventure in mind. It was only a few feet really, a handful of steps, but he and I are on top of the world.

He falls a lot, gets back up, tries again. And again. And again. Sometimes he makes it several steps in a row, sometimes just one. Sometimes he lands hard and it hurts (balance and protective response-aka catching himself- do not come easily for this guy), but he is undaunted.

All the while I watch him exploring the ever-widening world around him and I am amazed at his perseverance and resilience. Every worry I have ever had for him, every tear I have cried wondering what his future will hold fades for the moment as I am reminded again how strong he is. Some would say stubborn. I think I have said it too. This kid is going places, and he’s not letting anyone or anything stop him. Maybe he will take a different path to get there. Maybe it will take him longer, maybe it will be harder, maybe he will have to get back up more often than most. Maybe “there” won’t exactly fit our culture’s skewed definition of success. But he’ll get where he’s going, of that I am sure. One step at a time.

I wonder sometimes how much I should write about Zeke’s development. I waiver back and forth between wanting to keep much of his story private, and wanting to shout from the rooftops how amazingly awesome my kid is. I compromise by choosing to write mostly about our ordinary, every day lives together (because really, we are quite ordinary). I don’t want him to be defined as “that kid with Agenesis of the Corpus Callosum,” with all of the stereotypes that may entail, but I also don’t want him to ever feel that who he is is anything to be ashamed of or keep hidden. In many ways I am quite fascinated by the way his brain works and it’s ability to overcome tremendous challenges. Each accomplishment seems all the more amazing when I pause to consider everything it took to get there. My hope is always that people read my words, and see my pictures, and are inspired and encouraged (as I am likewise inspired and encouraged by the emails and comments I receive every week from individuals who either have ACC themselves or know someone who does), but I am also well aware that ACC can look very different for others than it does for my son. We are blessed. And I don’t ever take that for granted or lightly. Ever.

With that being said, I do want to include a bit of an update. I know how valuable it has been to me as a mother to read about other families on this journey with us, and I think it is important to include some of our struggles in this story along with the overwhelming good. At 17 months, Zeke is doing quite well. He is eligible for Arkansas’s early intervention program, which provides him with two physical therapy sessions per week. At PT [physical therapy] he is continuing to work on skills like transitioning from sitting to standing, balance, increasing muscle tone, increasing his protective response, and beginning to walk. (He wears small foot braces that are basically inserts that fit into his shoes to help stabilize his ankles) He is making slow, but very steady progress in all of these areas. He seems to have a somewhat decreased awareness of his left side, probably related to his ACC, but it is more noticeable some times than others. For example, he has more difficulty catching himself if he falls to the left, and he occasionally seems to forget about objects in his left hand. He also seems to have a somewhat increased tolerance to pain, but that may just be his stubbornness! Although he picked up his first couple of words pretty early on (mama, baba, bye-bye), his speech has plateaued at this point and he really only uses a couple of words, and even those not consistently. He has been referred by his physical therapist to be evaluated for speech and occupational therapy in addition to PT.

For every thing that he struggles with though, there are so many other things that he can do. He stacks blocks, puts them in and takes them out of a bucket, gives (very slobbery) kisses, loves to share his snacks and toys, makes some pretty awesome truck noises, “dances” to music, taps out a pretty decent rhythm on his bongos or the piano, looks at picture books, chases the kitties, lights up the room with his
whole-face smile, climbs, climbs some more, oh, and did I mention he climbs?

But today, oh those early wobbly baby steps! They eclipse everything else. Never lose that determination, my son!



reprinted with permission from Jodean, the author as well as Zeke's Mama, who I believe would embrace all of your comments and thoughts.

Jodean's contact information can be found at Crazy Wonderful Life, where this very heartfelt article originally appeared.

2 comments:

  1. What a sweet post. It is so wonderful to read about how well Zeke is doing. I completely identified with what you said:

    "I wonder sometimes how much I should write about Zeke’s development. I waiver back and forth between wanting to keep much of his story private, and wanting to shout from the rooftops how amazingly awesome my kid is. I compromise by choosing to write mostly about our ordinary, every day lives together (because really, we are quite ordinary). I don’t want him to be defined as “that kid with Agenesis of the Corpus Callosum,” with all of the stereotypes that may entail, but I also don’t want him to ever feel that who he is is anything to be ashamed of or keep hidden."

    My daughter is 3 years old is doing amazing well despite her ACC diagnosis. Most of the time I want to shout it from the rooftops as well. Especially when I see her in gymnastics doing somersaults or the balance beam, or swimming, or climbing tall ladders towards the highest slides. It makes me want to shout, "World! Can you believe this???" I catch myself most of the time of course but we have taken to celebrating the little things as well as the big things which has really helped us put life in perspective and show us we have so much to be grateful for.

    I too, never ever want her to feel ashamed that she was put together extra-specially and like you, waiver with how much to share with the world. I figure she has nothing to be ashamed of and I don't treat her any differently than her sister; something my husband and I have vowed to try and never do.

    I battle a lot with what I can only describe as a guilty feeling that she is doing so well since we all know that ACC can look very different among people with this diagnosis. This may sound crazy but it's like survivor's guilt or something? We opened our hearts and prepared for a child with very involved disabilities. We will forever have that space in our heart and I sometimes wonder if that was a gift for us? Maybe to be more understanding, kinder, gentler,open to people who may have different struggles? I'm not sure but it feels that way. I am a RN and I often think that when (I'm a stay at home mama) I return to work, maybe I will work with people with disabilities? I am rambling now, but wanted to share my own heartfelt thoughts with you...and I guess everyone else.

    Sincerely,
    Kelly

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  2. Zack's mom, first I want to excuse my English, because I speak Spanish, and my English is very bad .. I want to thank you for these words, it is very nice to read people who feel the same as me ... I have a 3 year old with complete ACC and what you describe is what I feel, he is very persistent and achieved things that no one would believe .. Zack as his language tight when I was one year, and then started to talking much, now says many things (almost everything) and expresses everything I feel is the most important ... Thanks again for this story! a hug Tania

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