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 perseverence and resiliance. 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 shoud 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 is is anything to be ashamed of or keep hidden. In many ways I am quite facinated 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 insipred 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 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 he 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 occaisionally 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 stubborness! Although he picked up his first couple of words pretty early on (mama, baba, bye-bye), his speech has plateaued at this point an 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!

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7 thoughts on “Baby Steps

  1. Thanks you for sharing Zeke and his development. I have a child with ACC and I have followed your story since we diagnosed it about 6 weeks prior to his birth. I like you am just finding joy in each day, and how well he is today as we never know what tomorrow will bring for any of us. I feel so blessed, but in the moments of worry and fear it is nice to not be alone. I have kept my sons condition very private, just not wanting to deal with questions. I also do not want it to define him, but each day that I see how wonderful he is- I am reassured that it cannot define him. He will define himself and he will be wonderful and amazing. Thanks so much for sharing.

  2. My son was diagnosed with complete ACC through a fetal MRI. It was confirmed through another MRI after his birth in February. I found your blog when I was pregnant and it gave me hope in spite of all the worst case scenarios I was hearing from the doctors. My son will be 3 months old soon and so far he is doing great. Your posts continue to give me hope. Thank you so much for taking the time to share your story!

    • Nice for you to share too Rachel. My son is 6 months and doing well so far. We are just taking it one day at a time. I pray for only the best for your son!

  3. Thank you Mindy and Rachel for taking the time to comment and share your stories too. I am glad to hear that Zeke’s story has been enouraging to you, and I pray your boys continue doing well!

  4. (I meant to leave this comment on this post. I am not very blog savvy!)

    Hi there Jodean,
    I found your blog through an ACC website. First, you have a beautiful family and I love your photography! Second, reading your blog I came across your entry with the picture of your son walking and where you talk about his ACC. I just want you to know how much it means to me that you do share your story because of people like you it makes it a little easier to stay strong. My son is 7 weeks old now and when I was 24 weeks pregnant he was diagnosed with a cyst in between the two hemispheres of his brain which caused C-ACC. There isn’t a lot of information or people to talk about it with so I live for inspiring blogs like yours. So thank you for sharing!

    -Chelsea

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