I am one of those annoyingly chipper optimists. You know the ones, where every cloud has a silver lining?! I can and do find the humor in almost every situation. Simply because I HAVE to. The truth is, if I don’t, I would probably sit in the corner and cry non-stop forever! Or sit in a bathtub full of Cheerios, playing with my rubber duckie until the men in white coats came to get me! Seriously though, I constantly remind myself that it could be worse, it could be much worse. Which is how I have gotten through so many things in life, the curve balls.
When a geneticist told me that my oldest son would need surgery at less than a week old I looked around the NICU and thought, my son has a pretty healthy heart, his organs in general were healthy. So, he had mild hearing loss at the time, he was intubated because he could not breathe on his own until after surgery. The point was, with that surgery, he would live!
When a few months later, another surgery later and two hospital stays later, we found ourselves in the hospital yet again for our fourth stay, I looked around and thought it’s not so bad, we’ve had some time at home with him. When he had an NG tube put in I was just thankful that they could get anything down his nose to help feed him. It was his nose that they had operated twice on. When he dropped enough weight to hit only 5oz over his birth weight, that was the first time I couldn’t handle a curve ball. I went straight down to the chapel and told God, if he was going to take my sweet baby boy, to do it now so he would not have to suffer anymore but, in the same breath I wanted to keep my baby so much I prayed that he would recover that day, I begged for it.
That was the last day things were bleak for him. He came home a week or so after that. He went through physical, occupational and physical therapy, early intervention and even graduated their program at 18 months! By 2yrs old when his “quirks” began to really show, I was ready to jump on board and ride the curve ball train again!
After everything he’d been through, we had decided that we would have no more children. I couldn’t bear the thought of putting another innocent little being through everything that my oldest had to go through. Which, while I share some of his story here, it isn’t even the tip of the iceberg I swear though, that saying about God laughing at your life plans, totally accurate because within 2 months of conversation. I found out I was pregnant again. I cried for 2 days before I took the test because I KNEW. I was so worried about what this child’s life would be like.
He was not born with any birth defect, his hearing was perfect, he was an entire month early and born in respiratory arrest but within 3 days was able to leave the NICU. I thanked God again for such an amazing second chance with yet another sweet child. My last child because I had asked to have my tubes tied afterwards. So, you can imagine how blessed I felt, that I was allowed to have a life with this sweet angel, my baby boy.
How wonderful life has been with him, how I can never imagine life without him. He is my comedian, the thing that can break the stress of the day. He has brought all of us closer together and even taught his brother a thing or two about human emotion, feelings and how to treat people. Big bro may not always get it right but, because of my little guy, he’s made some huge strides!
So, when I began to notice little OCD quirks, I did not worry. One child and one momma with a bit of OCD, we could handle one more kiddo. After all his OCD wasn’t as bad as big brother’s. When he began to cover his ears over sounds, I knew that sensory sign anywhere. You know, if he’s not trying to jump off a moving train like his big brother did at the zoo over sound, I can handle that! Then came the ADHD like impulsivity and hyper behavior. Well, it’s a little worse than big bro’s but, you know, he’s still young and he was a preemie, I just need to give him time to mature. He’s 4yrs old and now I take him to see his brother’s doctor because I’m sure he has ADHD and OCD and maybe if we can get him the official diagnosis, he can see an OCD specialist and we can get rolling. I was ready and ok when the doctor walked into the room today and said, “well mom, he’s on the autism spectrum”…..not ready to hear a curve ball.
All of a sudden, I felt like a newbie special needs mom all over again. I was sure that he was wrong, that maybe I had answered something wrong when I filled out the questionnaire he gave me. I mean I was locked in a small room for half an hour with two crazy boys, maybe I just circled the wrong thing that went with another line….I mean he cuddles with me, he laughs, he smiles…he plays by himself sometimes using his imagination…He’s not like big brother at all. Sure he lines his cars up in a single file every day almost, sure he can’t look you in the eye, sure he is delayed all across the board, he remembers something for 30 seconds and then forgets, sure I call his name a million times before he’ll answer, sure he still calls a baby cat a telephone now and again when we’re working on ‘wh’ questions, sure if you ask his age he’ll say 10 or he still struggles with colors, even though we’ve worked on them for almost a year…he can’t be on the spectrum. Right? I know ASD, my oldest son sat at the highest part of that spectrum for years before he and I worked hard to technically get him a myriad of other diagnoses but, all experts agree, after 5yrs of religious work, diet changes, medicines and vitamins, his social skills aren’t the best but, otherwise you might never now. So, how can my little angel be on the spectrum?! He’s the total opposite…
I think I have beat myself ragged today doing what we all do when we first get that first diagnosis that rocks our world. I had forgotten how it feels, the cycle we put ourselves through
That acronym does not change him. It does not define him. He will always be our little boy – the one my mother’s neighbors call ask for stories about, the one that makes dozens of my friends smile and laugh with delight over his exploits, the one that can’t get enough of dump trucks, fire engines and anything construction related. The boy whose love of a random stray cat, convinced me to feed her and let him name her even! He is still my little angel. The dreaded 3 letter acronym or not, he is still a sweet, innocent boy, who everyone he meets adores. I will not think about his life 20yrs from now, nor 10 or even a year from now. I remember how this goes, I do this everyday with my oldest son. I will remember to focus on just today, sometimes just an hour at a time, I will love him in those moments regardless and cherish his victories sweeter than that of a mother with a neuro-typical child. We will dance, sing, play and we will not let all the fears make us who we are. We will fight together and no matter what, he’ll always be my little angel, no matter the curve balls ahead.