05072017 We Just Didn’t Know
After our 13 year wait, God blessed us with a beautiful little girl. She came into the world smiling, literally. The doctors insisted it was gas, however, when she continued to smile for hours and days, we knew that it was just her nature. She is a joy bringer. She is our joy.
At her five day checkup, they diagnosed her with jaundice, and we set her in her carseat in the front window of our house, to “sun bathe”. At the 7 day visit, her bilirubins had returned to normal. She was healthy, and a downright chubby little thing, happily and greedily sucking down breastmilk as if there weren’t ever enough. We didn’t know then, that she had a genetic condition that was going to bring challenges.
When she was six months old, she sat on the floor with her aunt Bug and listened to stories. Aunt Bug tells the best stories and reads books with such animation, every child loves to hear her voice. Sis was no different, except that sitting up was hard for her. She looked like a fat old drunk who couldn’t keep upright. We just thought it was because she was chubby. We didn’t know.
She also had bouts with contact dermatitis, eczema, and other skin issues. We just figured it was winter in the Midwest, and, since many cousins on my mom’s side had eczema, and her grandpa on daddy’s side had it; she was just going to have it too. No big deal. After multiple bouts with ear infections, she had tubes put in, to allow for proper drainage. This was not alarming, since I had experienced much trouble with my ears as well. In fact, at midlife, I still get ear infections! We noticed her pigeon toes, but her great grandpa had those, so it wasn’t a worry, until she started to walk.
She crawled normally, albeit with a bobble here and there. She did get tired easily, and her little bottom had a shift to it, but we just thought it was cute. When she began to walk, it seemed normal, a step or two, then “boom” on her bottom. Looking back, it is obvious that she took a little longer than most to adjust to walking upright. At a year, she was still falling down. Running was not really her thing. She would run a few steps, then fall down. We asked her pediatrician about it, and were referred to an orthopedic at the children’s hospital, who told us that they no longer break children’s feet and recast them. They noted that her femurs were curved, probably from her position in the womb, and that there was nothing that they could do right now for her. The doctor seemed positive about her, encouraging us to allow her to master things on her own. She had already adapted and was walking; she’d pick up on running as well. He wanted to see us again when she was four, to measure and see how she was developing. We made the follow up appointment and went on our way.
Also, her fingernails and toenails were weird. Paper thin, like mine… but they just wouldn’t grow. I almost never had to clip them after her first year. She chews her fingernails now, but those toenails are still different. Around the age of two, we noticed her hair. What would have probably seemed like nothing to most people seemed really weird to me, a former hairstylist. Sis had a perfect bald spot in the back of her head. Exactly where she slept. Now, most babies get cradle cap and babies who are left in cribs, playpens or car seats all day will have bald spots, but our daughter was so active! She basically only laid down to sleep at night – when she crashed completely out. So there was no reason to have a bald spot. She wasn’t a wild sleeper then. She just laid down and zonked out. We took her to her pediatrician, who referred us to a dermatologist. The dermatologist promptly dismissed this, telling us that she was normal, her hair was normal, albeit thin and easily broken. Microscopically, they didn’t see anything wrong. She was just rubbing her head at night and that was creating a bald spot. They recommended we get her a satin pillowcase for her pillow, which we did. The pillowcase helped a little, but it took almost a year for her hair to grow back in correctly.
Around this same time, the hospital visits began. First, me. We found out that I was pregnant (with no intervention, and no begging God) with a 2nd child. Then, Sis. She began crying, her arm came out of its socket when she sat down to pout while holding her daddy’s hand. She started favoring her arms, and crying. She would lay in bed and cry for hours. I was working in the evenings at church, and that’s when it would always seem to happen. Three times in a year, I remember meeting them at the emergency room, where she had an x-ray, only to find “nothing” wrong. Probably just growing pains, they said. Once, there was a sprain, but never a broken bone. She was always hurting, only at the time, we didn’t know it. Her pediatrician told us she had “nursemaid’s elbow”, when we asked about her arms. No one ever gave us an answer about her legs. We had been to the orthopedic, we had asked her pediatrician. No one seemed concerned, so we didn’t see reason to be concerned either. Those curved bones were the culprit, and she was such a happy girl. She never complained. We just had no idea.
While her cousin, only nine months older, grew out thick, luscious black hair, our little peanut’s crown continued to bald and people kept asking us what was wrong with her. I told them we’d been to the dermatologist, and they said it was just brittle hair. So, reluctantly, I gave her a pixie cut and told her she looked like Tinkerbell. She was a loving and doting big sister, looking after her little brother when he was an infant. The hospital visits got fewer and farther between, and we settled into our life as a family of four.
At three, we signed her up for dance. She loved dancing at home, and was adorable; besides, we had several dancers in our family, so I thought this would be perfect for her. Except that with her attitude and desire to “do her own thing”, she spent more time outside of the room than with the instructor. “Time out” in dance? Yep, I paid for that. Oh well, she went to the recital and looked as cute as any other little girl, even if she couldn’t have as long a ponytail as the others. We decided that dance lessons weren’t for her, since she was so headstrong.
At four, she was ready for preschool. She knew all sorts of things, and was ready for social interaction with other children. I was ready to have some alone time with her brother. It was a win-win.
Her hair grew in beautifully in preschool!
And, we signed her up for soccer, which like dancing, turned out not to be her sport.
When she graduated preschool, her teachers came to me and told me that socially, she wasn’t ready for kindergarten; but not only that, her fine motor skills were deficient. This caused me great alarm, because she is so bright, so academically adept, I couldn’t think about holding her back from Kindergarten. However, my birthday is the same month as hers, and my parents sent me. I was also socially not ready, yet academically adept. Back in my day, a lot of things were different, and I spent my early elementary years being hounded, punished (including spankings), and labeled as “the busy girl” who couldn’t sit still and talked to her “neighbors” too much. In fact, it was that way all the way through sixth grade, when I started to hate school. I went from a bright child to a child who didn’t care about her grades. I didn’t bother applying myself, because no one thought I was capable of more than talking, interrupting, distracting and disturbing everyone else. I didn’t want that to happen to my child.
I spent weeks talking with everyone, touring the Alternative Kindergarten, seeking counsel from other parents, my parents… any information I thought might help me, I sought out wholeheartedly. One evening, I realized I had a goldmine I hadn’t tapped into. I had two cousins – sisters – who worked in education, and a another cousin who held a certificate in special education for teaching. Three women who were so capable of answering all of my questions were right in my family; so I called, texted and emailed them. One evening, one of my cousins came to the house. She asked Sis a bunch of questions, and then touched her hand to get her attention. It was then that the direction of our meeting changed. My cousin asked my daughter to lean down and put her palms on the floor without bending her knees – which she was able to do with great ease. She asked her to fold her hands behind her back like she was praying; again, done with little effort. Then she asked Sis to raise her hands up to the sky – behind her back, in folded prayer position. It was an ugly, frightening sight, but Sis did it without hesitating. My cousin pulled Sis’s skin, which lifted off her bones like a rubber mask. She asked her to bend her thumb back to touch the inside of the wrist/arm. Again, not painful, and Sis complied. Then, my cousin looked at me and said, “You need to get her an appointment with genetics at the university. I think she has EDS.” My head started spinning… I had no earthly idea what my cousin was talking about, and so I did what I always do… I started asking questions. How did she know? What made her think that? What would EDS have to do with anything?
Turns out, she had two children who were diagnosed with EDS, and she knew what it looked like. She knew that it affected them in ways that people wouldn’t expect – ways like fine motor skills. I listened to her talk about her own sons, and how EDS had affected them, and I determined to find out if this is what was happening to Sis. She ended the conversation by telling me that Sis was a bright girl who was ready for Kindergarten. She wasn’t just telling me something I already knew, she was affirming that my instinct as a mother was correct. So why didn’t I have an instinct about EDS? Why didn’t I know that my little girl was made differently?
We just didn’t know.
Coming soon… what happened during the year long wait for our appointment with Genetics and what happened when we went for our follow up with the orthopedic for Sis’s legs… How did she do in Kindergarten? What happened in our little family of four? This is the first article in a series during the month of May in observance of EDS Awareness Month. Check back to learn more!
Momma Rich's 