January 30, 2012

Balancing Acts

Samuel got RSV a few weeks ago. Despite the mega-expensive Synagis shots and all my caution about exposing his fragile little immune system, he still caught it. All in all, it was a pretty mild strain. It still made for a really long week.

Smiling during a breathing treatment
It started fairly slowly, with a stuffy nose one day, a small cough the next. By the time we were in front of the doctor the third day, he was wheezing and his pulse/ox numbers were back down to pre-surgery levels. They threatened to send us to the hospital to put him on oxygen, but he responded well to a breathing treatment and we were sent home with a nebulizer and a lifetime's supply of Albuterol. Like seriously. Even after round the clock treatments for 7 days, I still have like 2 boxes with 40 vials in each and 5 prescription refills. Disaster planning, Dr. B? I think maybe so.

During those first days of his virus, it was pretty scary. His little chest was so congested and he was so miserable. Some time in the wee hours of Day 4, I was sitting in the living room, holding him upright on my chest so he could try to sleep, listening to him cough and wheeze, and just panicking. I couldn't decide if we should be taking him to the hospital or if he was truly okay to stay at home. I looked at his tiny little face, flushed with sleep and coughing, and I realized I was completely powerless. I couldn't do anything to help him breath. I couldn't give him oxygen, I couldn't breath for him. 

I hadn't felt that helpless since his heart surgeries.

Just about the time I'd made up my mind to wake Travis up and tell him I was going to the hospital, Sam's breathing evened out and he slipped into a deeper sleep, cuddled into my neck. The rattling in his chest was still there, but he was comfortable. He slept until his next breathing treatment, 4 hours later, and I finally relaxed enough to put him back down and go to sleep myself. 

It never got any worse than that night, and now, two weeks later, you can't even tell he was sick. Proving once and again, that babies are the most resilient creatures ever.

Samuel's health has dictated so much of our lives for the past 6 months. Even now, heart repaired, pacemaker plugging along, and cardiology appointments spacing out, his therapy schedule still takes control of at least two days a week. Soon, we will be adding another bi-weekly therapy. Throw in a couple of sick visits to the pediatrician, plus still catching up on vaccines, and our calenders are literally full of appointments for him. 

When our Early Intervention case manager first started talking therapies with us, she was reluctant to add too many at once, cautioning us about how easy it is to get overwhelmed. At the time, I scoffed and thought to myself, "This is my child. I will do whatever it takes to give him what he needs. Bring it on. Load us up."

But now. Well, I understand it. Some weeks, I do feel overwhelmed. When I have to pass on play dates for Luke or have to wait a month to get in to the dentist because my schedule is so limited, it's frustrating. I wanted to go back to work part-time to get a few hours out of the house, but I don't think I can ask my boss to be that flexible right now.We are still plugging away at speech and physical therapy, and yes, we will be adding in a nutritionist to the team in February. Samuel is making really good progress in all areas and I really like these women who come to my house to teach me and Sam new tricks. I don't want to stop, but I don't know how to find the balance yet.

We've seemed to have jumped the hurdle of the heart defect, and now we are smack dab in the middle of learning what it means to have a child with Down Syndrome. I had no idea that an infant with DS = therapy, therapy, therapy! I'm trying so hard to learn more about DS and the new lingo that comes with our new life, but it's a steep learning curve.

Don't get me wrong, I know that Samuel has so many advantages over children who were diagnosed decades ago. I will do every therapy they suggest, buy all the books, pick the brains of the DS families that have gone before me, and try my very best to nurture him during these early years. But it really has taken over my life in so many ways, and I don't know how to make that fair to Luke.

And the pressure of it all to do it right. Gah. It's killing me.

There are numerous blogs out there written by other DS parents. Some are helpful, some are informative, and some are overkill. I've had to delete several from my RSS feed because I simply can't handle the pressure they dish out. I know that all the research out there indicates that the earlier you intervene and actively pursue therapy, the better off the kids are. But my brain just can't cope with all the myriad of ways people take that statement and twist it around. I cannot devote my entire day to researching all the rabbit holes of theory or which top 10 toys will best stimulate him. If playing on the floor with Luke and his old toys isn't enough, then I'm already failing him. And I just can't go there mentally, day after day.

Samuel is a part of our family, but he is not the only member. I want to do everything perfectly for him so badly and I often feel inadequate to that task, but I also want to do right by Luke. And by Travis. And even by myself. 

I don't know if that fact that I'm not willing to go down the uber-neurotic, obsessive DS road makes me a bad parent of a special needs kid or if it just makes me sane. I don't know if I'll ever get an answer to that question, but I obviously need to work on being more at peace with the road I have chosen. I know I can't spend my entire day devoted to discovering the latest and greatest, but I also know I can't spend each day beating myself up over it either.
Something has to give.

No comments:

Post a Comment