Dear Roger: Rules For Being A Parent

I got up this morning at 7:30, it was one of those rare mornings when I got to actually sleep in because no one had to be anywhere, but my secondary alarm needed to pee and wanted his morning kibble, and I could tell by the sounds coming from the living room, my tertiary alarm was already up and would soon be coming in to ask if I was ever going to get my ass out of bed.
My tertiary alarm is usually my primary alarm nowadays, at least on weekends and days when no one has to get up early, its like Murphys Law, but that's just Sticky boy. I walked into the living room and sure enough he was on the couch, sitting with his ankles crossed behind his neck, watching some educational show on PBS. Hes so hyper-flexible he can not only cross his ankles behind his neck, he can put his toes under his chin. He and daughter often have contests to see who is the bendiest, and to outsiders its a bit off-putting at times. He was wearing just his boxers which had mysteriously acquired a hole in them since he started wearing them yesterday, and he was worrying the hole. "I got a hole in my chones!" was the first thing he told me this morning and I agreed with him and then went to make my coffee, not too excited or shocked. Hes a boy and he often manages to do damage to his clothes in some bizarre way. While I was in the kitchen he comes walking up to me, gives me a hug and a kiss and asks me to make him a "Butt crack sandwich".
Now, before you go getting too freaked out about that term, let me tell you, it came from his siblings and honestly, it kinda fits the disgusting combination of materials he loves on toast and has been eating since he was a wee child. Its toast, with katsup,(lots of it), mustard and mayonnaise and when we can afford it ham. He has started asking for ranch dressing on it as well lately but I drew the line there. When I was pregnant with my daughter I couldn't even be in the same room when it was being made, but now, I just go about it as if its the most normal thing in the world, most of the time he makes it himself, but he knew I had just thoroughly cleaned the kitchen and I think hew as worried I would get annoyed at him if he made a mess.
Sticky is special in many, many ways, not just because he has Downs Syndrome and it makes him operate a little different from the rest of us, he has all these odd habits and hobbies that just make me shake my head and wonder where the hell they came from? He has some mildly Autistic behaviors as well so I allow some of the oddness, knowing that to try and force it to stop would be counter to his nature, but there are times it just drives me up the wall. He has at least 100 pipe cleaners. It looks like a giant, technicolor birds nest that no one is allowed to touch. If you take a pipe cleaner and bend it into a cool shape for him, he gets pissed off, so no one touches the pipe cleaners. Music is another thing that has strict rules around him. No one sings "Reaper" by the 100 Monkeys in the house except for him, seriously, brawls have broken out bad enough that I have had to pull over the van when I had it, and separate children who were intent on serious bodily harm. He hates wearing clothes. The minute he hits the door when he gets home from school he is stripping off his clothes. He is skin to wind constantly. Its really annoying when people come over, but its how he likes to be, even when its cold.
We have all adjusted to his habits and behaviors over the years and we are all fiercely loyal and loving towards Sticky. He is my son and their brother. He has a wicked sense of humor that often leaves us all shocked at its complexity, and hes genuinely loving and devoted to all of us, even when we drive him crazy by stealing a pipe cleaner.
When Sticky was born with Downs, it was like getting blindsided by a Mack truck. We had no idea he had it because all the tests had come back normal. The ultrasound showed nothing, none of the blood work showed anything, but in the midst of the horrible delivery, as I was bleeding out and just before the seizure that changed my life, I saw his face and I knew.The last thing I remember saying was,"Oh my God, he has Downs." and seeing the nurses face that told me I was right. Waking up alone in my hospital room a day later with a Social Worker sitting beside my bed telling me about my,"Options" for my baby son who I hadn't even seen since that moment left me feeling like the world had imploded, but the only thing I had to tell her was that the only option I had for him was to come home with me. I gladly took the pamphlets she offered on being the parent of a,"Special Needs Child" and after she left I started unhooking myself from equipment so I could go find my son,(That hospital grew to not like me very much as I tended to do that), and after I caused a bit of a stir amongst the nurses, I was finally taken to see him in the NICU.
Tiny, sickly, but fierce and creating a stir because he had a full head of hair that stuck up all over the place and he was cute as a button, my baby boy looked like a transformer with all the equipment he was hooked up to. For 10 days we were there. It was touch and go for the first few and then he started gaining finally and winning and growing. My little ginger tiger has given me many reasons to worry over the years, but hes not something I regret and hes not something I have ever considered a burden. Hes my son. Hes different. All my kids are different. Hes very high functioning for a Downs kid and hes loved by more than a few people for his kindness, his humor, and his optimism.
When you find out you are going to be a parent, its terrifying. You worry about everything that could go wrong, and truthfully, there are many, and almost none of them are in your control. I did everything right when I was pregnant with Sticky. I didn't drink or smoke and I have never done drugs. I was healthy and active and I followed all the rules, and it all went to hell in the last few months. I developed Pregnancy Induced Hypotension and he had to be delivered early to save my life,but none of the tests had prepared us for him to have Downs or for me to end up with brain damage from the seizure that occurred during delivery.I think Im damn lucky to be alive. I think Im lucky my son is alive. I know my doc saved my life and my ability to have more kids, so im grateful to him. I dont understand how people could ever consider suing for having a child like Sticky, yet there is a family here in Portland that is doing just that, suing the hospital and the doctor because they had a child with Downs. They are suing for "Wrongful Life" and all I can think is what horrible people.I dont often judge people because I dont know the lives they lead and many people dont have it in them to cope with a challenge like parenting a kid like Sticky, but then I have to wonder, how would they cope if one of their,"Normal" kids ended up damaged through an accident? I have had friends that had a baby injured though an accident. The child got strangled on its car seat strap and ended up brain damaged and blind. They didn't toss it away, they kept it and did their best as parents, because that is what you do.
Im not religious. I lost my faith when I was 14 and im not going to go into why, but I believe that you have a duty and an obligation to those dependent on you to protect them and love them and do your best to care for them. Im not the best person in the world, I am atoning for many things, but I know that I did the right thing with Sticky, and I am proud to be his mother and I dont need 3.6 million to make me feel that way.