I struggle sometimes with how much to share on this space about Zeke’s diagnosis of Agenesis of the Corpus Callosum, and how it is affecting his development. When Miles was a baby, I remeber blogging nearly every month a bulleted list of the milestones he was reaching. He was always “on track” or even ahead developmentally. Looking back, those lists seem a lot less important to me now. Zeke is such a beautiful, happy baby. So vibrant. So full of smiles, and coos, and kisses… somehow writing about things he can’t do yet or things he struggles with feels like it doesn’t do justice to the amazing little boy I see when I look at him. And yet I have learned so much from, and been so encouraged by, words I have read on other blogs -especially when I was pregnant and so scared and confused. For me at least, what helped more than reading just the factual medical information about ACC was reading about how it looked in the everyday lives of children and adults with the condition and their families. Seeing pictures of children like Zeke and hearing stories about their everyday triumphs and struggles really gave me strength and peace in those first few weeks. I do hope that the story of my family that I am telling here can be an inspiration to others on this journey.

In most ways, Zeke is developing just as a baby without ACC would. He is a social butterfly, smiling and babbling at anyone he sees. He jabbers constantly, imitating sounds and repeating syllabels like “mamamama” and “babababa.” He reponds to voice tone and facial expressions and loves to try to copycat what he sees and hears (sticking out his tongue, blowing rasberries, etc…) As Zeke gets older however, we are starting to see some developmental delays. He started rolling from his belly to his back and holding his head up very early, but activities that require more muscle tone and control are coming a bit slower. At seven and a half months, he still needs support to sit upright (and only then for short intervals), and is not quite ready to roll from his back to his belly. When on his belly, he lacks the stregth to push up on his hands, so he usually just prefers to roll onto his back. He also doesn’t put weight on his feet when held up (although Stephen got him to it for a moment a week or so ago!) He has slight torticollis (keeps his head twisted to one side) although with help from physical therapy 2x per week, it has greatly improved. He is able to track with his eyes, but usually doesn’t track as well to right as the left, so follow ups on his vision will be important over the coming months and years. He is certainly making progress though, and thankfully has not had any health issues whatsoever.

I don’t see Agenesis of the Corpus Callosum when I look at Zeke, and yet it is part of our lives every day, it’s part of who he is. I don’t even think about it very often; the delayed milestones, physical therapy visits, neck stretches and core stregthening exercises we practice with him at home, and follow up visits with the neurologist and other specialists have all just become part of the fabric of our day-to-day lives along with everything else, good and bad. But every once in a while…

…when I am sorting through baby clothes -packing away little outgrown onsies and pulling out a fresh stack of hand-me-downs and I remember the first picture I took of Miles standing in this very same blue-and-green striped jumper that now fits Zeke. Sometimes I get just a little bit sad. Not because I am wanting to compare them (and I feel guilty at even the thought) or that I am in any way disappointed that it will likely be quite some time before Zeke is sitting independently or crawling, let alone standing. I get sad not because I know he is developmentally delayed, but because I know the world is starting to notice. I just want everyone to see the perfect little boy that I see when I look at him, but I am already getting questions, hearing comments: “how old did you say he was?” “I thought he was older than so and so’s baby? Isn’t her baby rolling over/sitting/crawling/pulling up?” “wasn’t Miles doing x/y/z by that age?” I get sad when I think about the difficulties Zeke will face as he grows and ventures more and more into the wide world. It can be a scary, cruel place sometimes.

But I know I can’t let myself stay there long. Right now I have a sweet 7.5 month old and three year old to take care of. There are picnics to be packed, and bubbles to be blown, and silly crayon monsters to be drawn. There are stories to be read, lego towers to build (we should probably clean up a bit when we’re done too!), and lately lots of blackberries to pick. There is LIFE to live. Of course Stephen and I are doing our best to learn as much as we can and take advantage of resources that we have available to us. We want to be prepared for the future and any situations and struggles that might arise, and I know there is still much to learn. But right now we are choosing to focus on right now, and right now is beautiful:

If you have found this blog because you’re a frantically googling mom-to-be scared silly by an “abnormal” ultrasound, or a new parent of a child with ACC, I’ve been there. I feel your pain. I hope to encourage you and hopefully give you a bit of peace about the future. Children, of all shapes and sizes and abilities, are an amazing blessing. I cannot even begin to express the joy that Ezekiel, and his big brother Miles have brought to my life.


7 thoughts on “Zeke

  1. Hi! What beautiful boys. I have a 8 year old son also with Agenesis of the Corpus Callosum. He was diagnosed at 6 weeks old by accident. He was initially receiving a CT scan because of a lump on his head. That turned out to be cranial sagittal synostosis which is also a midline defect. He would then have cranial surgery at 3 months old. I was exactly like you. I had a daughter that was 5 when Jonah was born so I constantly compared, cried, fretted over everything. If you were to meet Jonah today, you would never know that he has ACC. Actually, he has been quite amazing. He began reading at four and is now in an advanced magnet school learning a grade level higher! I still worry about things and he still sees a neurologist and has made his last visit to the neurosurgeon. There is no predicting what the severity of symptoms may be from person to person. I think that was probably the hardest. We just didn’t know when we might reach a stumbling block. We’ve had great doctors at our Children’s Hospital and I have been vigilant in making sure Jonah’s eyes and optical nerves were examined (which are often damaged because of the agenesis). I have to remind myself how blessed we are. There are two other children with the same diagnosis that our pediatrican cares for. Both are severely delayed. I know that when I began trying to learn more about this, the only stories online were pretty devastating. I always thought that one day, I should put our story out to let other parents know how well Jonah is doing. When I hear him aggravating his 14 year old sister, I know he is doing okay.

  2. You and your blog have been so encouraging to me! My son was diagnosed with Partial ACC (originally told c-ACC by pediatrician) about 2 weeks ago at 5 1/2 mo old. He is delayed and started early intervention with OT and PT 2 weeks prior to our MRI and neurology appt. This diagnosis feels so daunting, scary, devastating, and hopeful all at the same time.

    We are fortunate that Pryce doesn’t have any syndromes, midline concerns, optic nerve issues or other brain abnormalities. He is responding to therapy great and is now grabbing at toys, bringing them to his mouth and his core strength is getting better each day. The OT and PT say he has been a poster child so far…let’s hope this trend continues, but know there will be days/weeks that he struggles more!

    Like you, I have a 3 year old daughter that excelled at all milestones so the difference is very noticeable. I have hope that we will get “there” even if it takes longer or “there” is redefined.

    Thanks for being a great role model for handling this life curve with grace and positivity!

  3. I’m a grandma-to-be of a suspected but as yet unconfirmed baby boy with ACC. His parents are scared and lost but trying so hard to be optimistic. I want to thank you for sharing your story and photos of your beautiful little boy, Zeke. It has been very helpful and reassuring and gives me hope to share with my daughter and son-in-law.

  4. Thank you for sharing your story. I just had a fetal MRI done and am awaiting results. They suspect dysgenisis of the corpus callosum. Your blog gives me hope that my daughter will have a good life no matter what the outcome is.

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