Well, it is after 11 and I am waiting for Danny to make his second appearance of the evening. I was a fun-filled day. After 50 degree days, winter finally arrived in Colorado. I took Katie and Jack to the pediatrician to document the non neglectfullness of our parenting, should we ever need to prove out fitfulness as parents.
I have a friend (ok, maybe just a close neighbor, I am not sure if they would be categorized as a friend. Now, not because I don’t adore her,but because of circumstances) She is has small cell carcinoma of the peritoneum and right now things are tough. I am friends with 2 very dear friend of hers and we had dinner with the both of them tonight. Super fun evening, I laughed so hard and hope we get to do that again sometime.
Anyway, dinner came about after spending some time with Julie on the phone last night. We talked for hours, sometimes about Kim sometimes about the Marrs Drama (that’s how I think about it, with the capital letters) and sometimes about our kids. She said something that hit home. I appreciate, she was trying to make me feel better, and she did. She talked about how Hugh and I were perceived in the hood. I bring this up, not to toot my own horn, but also because the kids’ doc said the same sort of thing. You know, the kind of stuff the has you looking around for Susan Surandon to come out of the wings because she is playing you in the made for tv movie…
Ok, so what I don’t understand is…I don’t feel special. Everyday (ok, well most everyday), I get up, put one foot in front of the other and do what needs to be done that day. No cape involved. Why do people think that is remarkable? It’s what needs to be done. And while I am tired and really, really want a nap, if I crawl into bed, who is going to take care of my kids? So, guess what? We power though…
Well, last night I was able to run away from home and get out with some friends. Danny was having a day. He must have gotten into something, because his tummy was a mess. Poor kid, we were in and out of the bathroom all day. That is, while he wasn’t migrating up and down the stairs. The migration is a funny thing to watch. Danny is a collector and gather of things. You never know what will make the day’s collection, but you better, by god, make sure you know where the stuff is all day. So he will pack up a bag and move it from my office to the stairs. then there will be 3 or 4 trips to get everything that doesn’t fit into the bag, you know, blankets, pillow pets, whatever. Then he will walk up the 4 stairs to the landing 3 or 4 times to move everything there. The process is repeated until you get to the top of the stairs. And then again until you get to our closet, with a couple of stops thrown in to his room to pick up whatever has caught his eye. After about 15 minutes, he reverses the process to come back down stairs.
I have good girl friends. We moved into this neighborhood 4 years ago. We bought a house to protect Danny’s placement at the elementary school. I joined the parent network out here and started attending book groups and bunco to try to widen my circle. After 10 years in our last house, and then therapy for Danny for 5 of those years, the only people I knew were parents of children with disabilities. And pretty much I only had 1 good girlfriend. The first year of living in this house was so tricky. I was so concerned about the “helpful advice” and the stares we were getting from everyone, family members and strangers at the grocery store. Hugh and I were so isolated. We had no natural supports, and we didn’t trust anyone to accept our family without judgement. Slowly that started to change. It took 3 years, but I now have a group of women who I rely on for my sanity. I was able to see some of them last night and they were suitably outraged on our behalf. I don’t know if they were faking it, but it was exactly what I needed. Not to mention, these ladies have had more exposure to out family in the last 2 years than Hugh’s entire family has in the last 10.
I think people play specific roles in you life. I have my very best girlfriend who leads a life identical to mine, who I can call and describe my day in graphic detail. We always seem to find the humor in taking the bath with bubbles and water all over the floor at 2am. And I have my typical mommy friends, who remind me that not all of my drama is disability related. That everyone has their own suitcase of drama, and it is so much easier to carry after you put it down and have a glass of wine with a friend. When you pick that damn thing back up again, it’s not as heavy somehow.
Well it finally happened, my in-laws actually spoke out loud all of their judgmental thoughts I have told my husband they were thinking for a decade. I have been married to Hugh for the past 15 years and we have three lovely children. Katie is 12, Danny is 11, and Jack is 9. Danny was labeled with unspecified mitochondrial disease with autistic features when he was 6. It was a long journey to get to that point, lots of doctor appointments and fighting with insurance companies that there was something medical going on with him when they stopped at the autism label he got when he was 2. More on that later. Needless to say, we have an unusal life with lots of supports and many battles. I have started with this one because it is the most recent and the one that blindsided both of us. While having a Christmas gathering with Hugh’s family, Hugh was cornered in our kitchen by his oldest sister because she had concern that because we were overwhelmed by taking care of Danny, we were letting the medical needs of our youngest son fall through the cracks. Jack is 9 and the funniest kid you have met. He is not without his issues. One of them is OCD. Jack has some trouble using a toilet in public or in other people’s homes. Now, for many reasons, we did not share the OCD label Jack received when he was 5 with the extended family. We didn’t want Jack treated that way as well. Anyway, Jennifer could “no longer stand by without doing everything in her power to make sure Jack got all the medical attention he needed.” In what universe would someone think we would not have had Jack checked out my numerous specialists since he was an infant, mosty because it was convenient. We see and correspond with more people with initials behind their names on a monthly basis than most people do in their entire lives. But, ok, maybe while we were sitting there, you know the three kids and I, I completely forgot I had two more children. It could happen…
Anyway, the conversation between Hugh and Jennifer didn’t end there. A week later it escalated to a screaming match. In her very out loud voice, Hugh and I were neglectful parents. The reason why Danny is nonverbal is because we did not do everything we could. There is absolutely no reason to put Danny on a plane from Denver to Cleveland once a year to consult with specialists other than it fills a need his nutcase wife seems to have. It is criminal Danny doesn’t attend school for a full day, or during cold and flu season. We are neglecting Jack’s obvious medical condition and there is no telling what kind of damage we are doing to Katie and she will no longer stand by and watch it happen. Really? Really? I spent the rest of the evening gathering documentation to provide Social Services for their inevitable visit.
Not once in the last decade has there been an attempt by his family to take Danny to the park. They have never learned sign language because unless you speak, you must not have anything to say. The have never behaved like they have read any of the family friendly information about his life threatening condition. They have never offered to take all three kids so Hugh and I can walk away and regroup, because the divorce rate among parents of special needs kids is 80%. Rather, they would prefer to sit together at their dinning room table and judge what they never took the time to understand.
I suppose I should thank them. Her craziness has vindicated me to my husband. I haven’t been oversensitive, family really can be that judgmental and cruel.