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! …continue reading

As a special needs mom, of two, I have gone through a lot, emotionally. Both my boys have SPD but, the oldest has a slew of acronyms that follow his name in folders somewhere and in explanations given out to strangers for this “odd behavior” or some kind of reaction. The youngest has auditory processing issues and some motor delays but, all in all they are good boys.

With each new diagnosis, came new grief, new understandings and realizations. Along the way, I will admit, I left their father behind. As sometimes a support system for other mothers online, in the group I run, I know how the wheel of diagnosis goes. For women, it is usually, denial, grief, digging for any and all information, which includes reaching out to other mothers or doctors who might have understanding and information and then acceptance, which is then eventually followed by some form of advocacy. I also know how it usually goes for a vast majority of men as well. They usually will get stuck in denial.

As mothers it is extremely frustrating and we begin to carry the load on our own. Doing the research, listening to those that came before us who might have a better way, searching out doctors, therapists, OTs, PTs, and SLPs, anyone who can help us find a better way, a new idea, suggestion or understanding so that we don’t feel alone. We obsessively try to tell all of this to the child(ren)’s father and/or family but, he/they is still in denial and either refusing to listen or they’re now overwhelmed. We take the kid(s) to their doctor’s appointments, therapies, counselors, etc. Men, delve down into their work, something safe and familiar. After a while, we will often times find ourselves at odds over the child(ren) and what is going on. Often times, I joke this is the in-law syndrome: where the in-laws or the rest of the family can’t see, can’t accept and can’t come on board. …continue reading