Today is our fifth wedding anniversary. I celebrated the day with a migraine, I know a headache sounds so cliche, but I swear to you, the migraine was very real.
It was also about a year ago that I started on the biggest emotional roller coaster I have ever been on. It all started when Hubby sucker punched me and I saw my son for the first time. Of course I mean this figuratively, as Hubby is about a passive as they come.
I warn you this will be a long post as I don’t know how to shorten this experience.
Crazy sucks at summer, he always has and little Squishy was doing okay with her first bit of summer heat that was starting to settle in. We were packing up the car to get away for the weekend into the mountains to find some cool weather when Hubby said to me, “its normal Squishy handles the heat better, she sweats and Crazy doesn’t”. My stomach turned to stone and it was like the air was sucked from my lungs. Crazy was two and a half and, I, his own mother had never noticed he doesn’t sweat. Hubby stated it like a known fact, like it was “normal”, but as soon as the words came out his mouth, I knew something was wrong.
We went off for the weekend and I tried my best to ignore all the feelings I was having, fear being the most predominant. As soon as we were back home, Crazy and Hubby went shopping and Squishy sat next to me on my bed while I went to my best friend the Internet to try to get some clarity, or relief or something. It took me three google searches to find it, but as soon as I opened the page for Ectodermal Dysplasia, I knew I was home.
Basically, something got messed up with all of the finishing aspects of my sons anatomical development, at least that is how I understand it. He has no body hair, pores, or sweat glands which mean temperature control is a BIG problem and as his skin can’t breathe properly, he will fight his childhood eczema his whole life. He has very little hair on his head, and whats there is fine and almost white, we have blonds in the family, so this never surprised us. His finger nails are fine and brittle, as is the skin in his nostrils which leads to frequent nose bleeds. And finally, at two and a half he still had no teeth. After that I read a range of sites stating that this condition was non life threatening in the majority of cases which helped me to come out of the spiral of fear and panic I had gotten myself into.
When the boys were back, Hubby noticed quickly that I had been crying and I showed him the first site I had found. He scoffed and treated me like a paranoid mother who shouldn’t be allowed to read the internet. So on top of feeling convinced of my sons condition and therefore sad because of it, I also felt really stupid. Lets just say, it was not a great day. I spoke with my family, who more or less treated me like I was overreacting and shouldn’t believe what I read on the internet (don’t worry Internet, I know the truth, you are awesome).
After a few days Hubby finally started to consider the possibility that maybe I wasn’t a loon and we should talk to a doctor. On Thursday, we got dental X-Rays, Crazy was very brave while that massive machine went around his head to show us that he would have a grand total of 6 teeth of his very own. On Friday we went to our family doctor. I had printed out a page of the web site I had visited and brought it with us. The doctor read it, we showed him the X-Ray and he immediately apologized for having not known the condition and referred us to a geneticist. As a side note, I love this doctor, and wish that all doctors could be as wonderful as he is. He treated us both with such care and understanding; he is one of only a few people to ask Hubby and I how we are feeling about it all. We often talked about Crazy, but in those first few weeks, we both felt a lot of pain and didn’t have anyone to talk to, which made it that much harder.
We made our way to the closest children’s hospital with a geneticist, and spent a good hour with two specialists asking questions and trying to understand what all of this would mean. Oh and they confirmed our diagnosis in the first minute we were in the office. The hardest part of this meeting was the majority of the answers to our questions was “We don’t know”. I fully recognize that we have made dramatic leaps in genetic research( “we” in the general human kind sense of the word…I have done very little personally), but now I fully understand how far we still have to go. They took both mine and my sons blood for genetic testing and we are still waiting for the results. There were a few things that were clear walking out of that doctors office, I was carrying the mutated gene as well, but the condition didn’t fully present itself and we had to reevaluate everything we had thought about raising Crazy up until that point.
The next step of the process was to meet with the dentist who specializes in baby dentures (something that still makes me smile, because a number of doctors had told us that there is no such thing as baby dentures when we asked questions about our infant not yet having teeth). It went relatively well, we absolutely love her, but she did break our hearts again when she told us that Crazy’s jaw was so underdeveloped that he would most likely never be able to get implants and would therefore never be able to have permanent teeth.
So now that was all figured out and we started adapting everything about our life to stop torturing this poor boy, we had the A/C installed, we didn’t take him out in the hottest parts of the day, and we spent a lot of time at the pool. We are still waiting for the dentures, because each time we make a dentists appointment, Crazy decides to cut another tooth which delays the process, he now has four of his six teeth.
During all of this and pretty much ever since, I have been through the same cycle of emotions on a loop. Guilt is the first and biggest one, my genes did this to my son and we are pretty sure Squishy is a carrier (to be determined by genetic testing that will be completed hopefully this decade). Everyone tells me I shouldn’t feel guilt for this, but no one has told me how to not feel it. While I try to swallow the guilt, I feel so sad and scared for all the complications that my son will have to deal with his WHOLE life, most of them are very simple things like finishing the school year in a hot school, or sleeping anywhere without air conditioning (he slept VERY poorly his first summer when he was in a crib, and on the tiled floor his second). This includes grandparents houses, friends houses, or anywhere he might go on a school trip. I go through another round of guilt or shame after that, because I have a son who is going to live a long and relatively healthy life and therefore I feel I have no right to be sad. This is where I try to get logical and put everything in perspective…yes its shitty, but its more inconvenient than anything else when managed properly. After that, I go a little numb because I’m too tired to feel anything else, and I just try to enjoy the awesomeness that is my son.
All in all, we are getting pretty good at understanding Crazy and at communicating to his various caregivers and parents of his friends, but we are still getting used to the weird looks we get when we bring Crazy to school in shorts in March. I’ve also learned to fight my instinct to completely lose it on random strangers who think they know my son better than me and chastise me in the street for how I dress my son.
So after a year, we have come to the conclusion that it is what it is, and that first and foremost, Crazy is so wonderfully crazy. That and we will not be having a third child.