It’s not all about the TSC.

Second Annual “Blogging for TSC Awareness Month” Day 24

by guest blogger Sarah Gray  (Atlanta, Georgia)

Mary Stuart, 16, Julia, 14, Jackson, 12 and Millie, 8
Mary Stuart, 16, Julia, 14, Jackson, 12 and Millie, 8

I have four children, who are mostly a joy and a delight, despite their collective inability to clean up anything. We spent three years dealing with miscarriages and infertility (“the dark years”) , and my husband and I are incredibly grateful to be parents to the big family we always wanted. That’s not to say we haven’t had our challenges!

Our first child arrived perfectly on her due date, and was a ridiculously easy baby. Hardly ever cried. I nursed her exclusively for five months and for a total of 9 months. We had her head x-rayed at age 2 or 3 or 4- I can’t remember much with my addled brain- because her soft spot hadn’t closed up, but it turned out to be just a weird thing. She never crawled on all 4s; she went from commando crawl to walking at 16 months. When she was older she had pretty strong sensory issues, and could not stand to have any tags in her clothes, which made it tough when I was handing things down and couldn’t figure out what size anything was. In typical oldest child fashion, she is a perfectionist and has a lot of stress, but we are surviving teenager-hood and she is finishing her sophomore year, in mostly honors classes, at a competitive private school.

Our second child was really active in utero, and partly because of that, we were shocked when she arrived and wasn’t a boy! She was a pretty typical baby, and a hilarious toddler. I nursed her exclusively for about a month, and a total of 5 or 6 months. She walked at 15 months and was clumsy- she had a perpetual bruise in the middle of her forehead. She was late to talk in sentences, but after some speech therapy caught up with a vengeance and was chided for talking too much in Kindergarten. She is a star in a local junior dance company, and I can’t believe I have a child who can dance in toe shoes, since I am so uncoordinated. She is completing 8th grade at the same school, in mostly honors classes and on honor roll.

Our third delivery was really fun because we had the “It’s a boy!” moment when he came out peeing all over like a loose garden hose. I nursed him for about 4 months maybe? He was a great baby; walked at 17 months just before we were going to start worrying. He had sensory issues that we noticed from about age 1: he wouldn’t eat frosting or ice cream, didn’t like finger foods that made his hands dirty, and as a toddler wouldn’t walk on bark playgrounds with sandals on. At age 4 he was flagged for OT in preschool. In first grade we had him evaluated, and he was shown to have many deficits which I can’t really describe, but I remember when she blindfolded him and held his head he got really uncomfortable. He loved OT, but after 3 years of trying to make his hands stronger so he could write legibly and without pain, I gave up and asked his teachers to let him type his assignments. He’s finishing 6th grade at the same school as his sisters, doing very well academically, but has OCD-like tics like playing with his fingernails, and still doesn’t eat frosting or ice cream! He plays basketball all 4 seasons of the year.

Number four is an adorable, somewhat spoiled youngest child- the only one with light hair and her daddy’s beautiful blue eyes. I got really sick when she was 2 months old and had to quit nursing cold turkey- ouch. She has extremely pale skin, and was the earliest walker of the 4- 14 months!! Someone said, “well, that’s OK”, and I said, “Are you kidding? She’s a prodigy!” At the end of Kindergarten, her teacher suggested that we hold her back, so we moved her to the school her sisters went to so she could go to pre-first and catch up a little. Later that year we suspected Dyslexia or some learning issue and had her evaluated, and she is on the lower side of the ADD spectrum, and has some visual processing issues. She is obsessed with cats, and is very, very social. One of her 2 “BFF’s” has cerebral palsy and uses a walker.

So which one has TS? Just one of them. I know I cheated because I left out the seizures and skin issues, but I was trying to make a point, which is hard to articulate. I guess I am trying to say, clumsily, that every child is his/her own wonderful, amazing self, with abilities and flaws, with strengths and weaknesses, and TS may be something that they have, but TS is not who they are.

Julia about a year after diagnosis.
Julia about a year after diagnosis.
Julia in her middle school performance of Bye Bye Birdie- she was diagnosed with TS at 19 months, with the onset of seizures. She has all the typical “stuff”, and since it’s TS. she has weird stuff, too, like a big bump/growth/thing on her tongue. The world would definitely be an emptier place without her in it!
Julia in her middle school performance of Bye Bye Birdie- she was diagnosed with TS at 19 months, with the onset of seizures. She has all the typical “stuff”, and since it’s TS. she has weird stuff, too, like a big bump/growth/thing on her tongue. The world would definitely be an emptier place without her in it!
Julia’s Team at one of the TS walks.
Julia’s Team at one of the TS walks.
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One thought on “It’s not all about the TSC.”

  1. I loved your post. I like how you have shared the struggles and triumphs of all the kids without being biased towards the one which has TSC. My son is only a year old so I am not mentally in the same place as you. But one day I hope to be there.

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