Monday, December 7

Parent of One-in-a-Billion Boy Seeks Same

The dad swoops in, whisking his son away from the playground. “We’d better get going!"

Moments earlier, my then 2-year-old son, Branko, had mustered up a weak “hello” for the boy after sticking his tongue out for a solid 30 seconds. It was his typical greeting at the time.

Branko’s voice is still weak from the surgery, the one that left him with two bright blue, full-leg casts. The swooping and whisking seems to be a typical finale for most playground encounters these days. I’m reluctant to admit it, but I know it was those casts. It’s always the damn casts. These situations don’t seem to bother Branko, but I feel a mild sting every time.

“Pretty sure casts aren’t contagious!”

I would never actually say this.

Even though I’m secretly proud of my wit, I dutifully curb all sarcastic impulses. I bite my tongue and subdue my face into a hideous but moderately believable fake smile. My motivation for being polite stems from one goal: to make some more friends.



Born with a rare genetic condition, a collage of health problems, and a handful of lengthy hospital stays, Branko has no difficulty engaging with his peers, and vice versa. Most of the other children we meet don’t seem to notice all his extra stuff – the casts, the oxygen tanks, the ankle-foot orthotics, the walker. In fact, most children beg for a turn in that walker too.

Don’t get the wrong idea. I have my people, my lovely people, the ones who drop everything to bring chocolate and beer the moment they hear Branko is sick. Even though I’m grateful for this support, something still doesn’t quite feel right. I haven’t yet made a close friend who is also parenting a kid like my son. 

To make our situation even more unique, my husband and I are the only two people on the planet with a kid exactly like Branko. His particular genetic mutation is a brand new, one-of-a-kind thing. There are no statistics for him; no clear trajectory for his health. There’s not even a name yet for what he has. I can only describe symptoms: weak bones, lung disease, skeletal deformities. I often wish I could mumble the name of a condition and just be on my merry way. 

Despite not being able to Google his diagnosis, I cautiously and appropriately try to make connections online, venturing into the territories of all things rare and genetic. Fully aware that I will never actually belong to these groups, I still manage to educate myself on anything and everything relating to Branko’s condition: Osteogenesis Imperfecta, Spina Bifida, Achondroplasia, to name a few. I reach out with words of support, desperately trying to convince these parents of the common elements between us. I rarely get a response.

One of the first changes we noticed in Branko’s bones was a slight bowing in his legs. The misalignment worsened as he grew, causing the tibia to shift and pop through his skin. Prior to this, many parents of typical children commented on the bowing, without truly understanding the significance of their appearance.

“My son’s legs did the same thing, and look at him now! He’s fine.”

It was as if we were discussing sunburn. I couldn’t listen to their remarks because our kids simply weren’t the same, genetically speaking. They weren’t part of my club, just like I'm not currently in the Autism or Down Syndrome Club. In a perfect world, I would have found my people. I don’t even know if my people exist, or will ever exist.

In a perfect world, I could sift through stories of others with the same mutation, and try to find something hopeful to latch onto. In a perfect world, I would discover a healthy 35-year old who overcame several bouts of pneumonia and a handful of surgeries. But these stories haven't been written. My son is the only one going through this.

We haven't yet been welcomed into the online world of special-needs parenting, and in real life, the playground parents can’t handle seeing a sweet little boy wearing two bright-blue casts. I get it. We are the cautionary tale. We are the ones people feel sorry for.  

Perhaps, and this is the most reasonable assumption, I’m still wearing the fear of the unknown, or more specifically, the fear of outliving him. Maybe this look lingers too long on my face, in my wrinkles, on my permanently chapped lips, creating the appearance of a person who would rather be left alone. In other words: maybe it's just me. And while this appearance might say (or scream) back off, this gnawing voice inside me wants you to know that something as simple as meeting my eyes would silence that voice. A quick hello, a high-five, an email, an acknowledgement that I exist, would silence that voice. 

Until I find my people, please play nice. My son might not officially belong in your world. But you are welcome in ours any time.



8 comments:

  1. I have been following Blanko for awhile now, from your posts on The Mighty. As he's gotten older Blanko reminds me so much of a friend's son when he was young. I just want you to know if we were neighbors or if you and Blanko showed up at the park, my grandchildren would play with him. We're not scared off by casts, walkers or even oxygen. While my grand kids don't have any rare diagnoses they like to play with other children. While the kids play you and I could chat about the joys of living with a rare disease. I share a lung disease with about 50 other people in the world, on top of that I also have a rare form of lung CA. We also share a sense of humor, while I was grocery shopping one night a man made a rude comment to me about my cough, I looked him in the eye and told him last I checked Lung CA isn't contagious! Anyhow, I hope you are doing well and Blanko is feeling OK if he has had his rod surgery. Happy Holidays. Cathy

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    1. Thanks for the kind message. He had a great surgery and an even better Christmas!

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  2. Hi, I was glad to read your post on Parents of Special Needs. My daughter is 18 years old now and has Koolen DeVries syndrome. She was not diagnosed until about 9 years old, so we had a long time of things like developmental delay, then mental retardation, and eventually a microarray testing that revealed a microdeletion on chromosome 17. For awhile it was called 17q21.31 microdeletion syndrome. Prior to that, it was hard to know what the future would hold and I remember not fitting in with any groups either, not CP, Downs, Autism, etc. Shortly after the chromosome finding, we found a few others through Unique (rarechromo.org) and started a Yahoo online group. Maybe a 1/2 dozen, then a dozen, and now a couple of hundred. We have been meeting annually at various locations, and some find others closer to them or on travels, and get together beyond that. Sometimes we will get a member with a slightly different, though similar chromosome finding, and they still want to find others with theirs. It may take awhile, yet hopefully you will gradually find more and more like we did. Even with our group, there is a wide range of differences with the kids, with some mildly affected, others more severely, either cognitively or physically, yet with general similarities. Your blogging is important, it is how some of our members found each other, so keep it going and I hope you will make connections soon! Darlene

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  3. Posted this to another post by mistake! Have you tried contacting Unique to have your son's condition included? I see the 12p duplication. It would be great to get his included. You could provide info and leave your contact information with them for others to contact you. Often people looking for each other find them this way. Let me know if I can help with anything!

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    1. I haven't contacted Unique... great idea. Thanks for the kind words!

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  4. Hi. My name is Sabrina, and I'm the mom of aa 9 month old special needs boy. He has not 1, but 2 rare genetic syndromes. One (OODD) is reasonably well understood, and the other (MRD13) is not. My son isn't the only person identified with MRD13, but he is one of only a handful, and the only one in the US that my geneticist is aware of. His presentation is also more severe than the others, and we are in a similar boat of not really having a good prognosis for him. I write all of this to say that I understand a bit of how you feel, and I would love to connect if you are interested.

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    1. Hi Sabrina! Here is my email: jennifer (dot) philp@gmail (dot) com.
      9 months old is a wonderful age. I have to say that those first few years are a whirlwind. It gets so much easier once you settle into the routine of this different life. We just have more stuff, more appointments, and less sleep than the average parent. I wrote this piece when my son wasn't doing so well, health-wise, and now he's doing great. Allow yourself to assume that a vague prognosis = a good prognosis!

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  5. I love this post, and I thank you for sharing it. Our experience is not the same, but not being able to find a special needs community for your child is where we've been for years. I have a 7 year old son, who is so incredibly sweet, it breaks your heart. We started testing when he was 4, and we still don't know what he has, only what the symptoms are. We know he was speech delayed from the time he really began speaking at 2, and I can't tell you how happy we are that he just "graduated" from speech therapy 2 weeks ago, now at 100% intelligibility. However, he still has an unusual cadence to his speech, which stands out to everyone. That is the main reason I think the school labeled him developmentally delayed, despite the fact that recent testing has shown what I always knew, that he has no learning disabilities or development delay. His physical limitations, however, have only gotten worse with time. His physical therapist has recommended testing for Charcot Marie Tooth disease and Muscular Dystrophy, which will be done next month, despite the fact neither appears to be a perfect fit. I dread both diagnoses, but I almost welcome an explanation for his symptoms. Why my son can't gain weight. Why he's 7 years old, 4 ft 2 inches, and still just 48 lbs, despite our constant attempts at helping him put on weight for years now. Why his balance, coordination, and motor skills are on average, that of a 5 and a half year old child. A reason for his low muscle tone and severe muscle weakness. The school tried to push autism for a solid year, despite 3 separate tests not landing him the diagnosis they hoped for. He just hasn't fit into any of their boxes, as one psychologist put it. Another less-tactful psychologist said there's always been weird kids, and there's no label for that. I fought back the urge to hurt him. We completely understand not fitting in with any specific special needs community. We're on the fringe, not diagnosed, and not quite typical. It would be so wonderful for him to make friends with other kids like him. I'd love to talk to other parents who understand. I would love to find where he "fits" and can be accepted. We haven't put him in sports, as his doctor and physical therapist have agreed that his limitations and muscle weakness would make it too difficult for him to play with healthy children his age. His physical therapist suggested Special Olympics league sports, but with what qualifying special need? It's so hard to watch your child always set apart, and very isolating as a parent.

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