Friday, July 22, 2011

Doing the Best I Can

Every mother remembers that first moment when her baby was placed in her arms. We look at that sweet baby and strive to do the best we can, learning as we go. We all have to make decisions, big and small. Some moms have to make decisions they never imagined, and are thrown into a world of medical decisions and therapists. I never imagined I would approve a treatment plan that might cause heart failure or becoming a "vegetable". I thought children getting cancer was a rare thing and it certainly wasn't something I had to worry about. Yet 46 children get diagnosed every day. There are so many worries. Most of the day is consumed by thoughts of food, diapers, meds and germs. How much he's slept today, if that's too much or too little, because either way could be bad news. I watch how he walks, to make sure he's using both legs equally and isn't limping. When in stores I have to make sure his mask is on and that the cart that I scrubbed down before putting him in it isn't parked close enough for him to be touching the germy shelves. When checking out I look at each register person, to see if any have red noses/cheeks like they have a cold before touching my stuff. I miss the days of just going to a store and not thinking about all this stuff, but we're in survival mode now and I'm determined to do everything I can to keep him safe. Today marks 25 months past diagnosis and it's emotional looking back and thinking of all the things we've been through. It's been quite a long, emotional journey so far, but as I talk to other parents and hear of other stories, I feel very fortunate to still have him with us.
I never thought I'd have to deal with Autism either, outside my chosen profession. It's another one of those scary things that nobody really knows why it happens and there's no easy medical test for it either. People hear Autism and they think of "Rain Man". They don't realize that the spectrum is very broad and that high functioning Autism is often hard to recognize for those unfamiliar with it. It's hard to have people stare at your misbehaving child in the store. I try to ignore them. I've had people say I should just get a sitter to go shopping, or to just strap him into a stroller. That would be convenient for me, but that isn't teaching him anything. Every day I'm amazed at how far Dawson has come with things. We've worked hard and it's good looking back and seeing the progress.

We've seen more professionals than I'd imagined. Neurologist, Psychologist, Psychiatrist, Speech therapist, Occupational Therapist, social workers, teachers, evaluators and more to come. I'm always looking for things that will benefit him. Which is why I googled and emailed every Autism orginization in the twin cities, which was quite a few! I was happy to find out that a full time spot just opened up and is being held for him. We will finally be able to complete his diagnosis process and get him some more therapy to help him deal with transitions, difficult times and social situations better.

People often say they have no idea how I do it all. I just do the best I can. I tend to the child with the most immediate need first. I multi-task, making phone calls, answering emails and doing things online while I nurse. I often cuddle Dawson while I'm nursing Gabriel. Or when I put Gabriel down, Dawson will run over with a big smile and say "cuddle mommy?" because he knows it's his turn. I use the hospital volunteers to help out. So Gabriel doesn't have to sit in a swing or crib all day. So Dawson can take a break and go to the playroom for a while. So Tyler has someone in the room so he can continue to be out of his crib while I'm getting something to eat. It took me quite a while to ask for help in the beginning, but things are so much better with the volunteers around. It's crazy, there really isn't too much down time, especially with Tyler on an IV pole, so I have to follow his every move. Dawson always wants to go play somewhere. If we go out in the hallway, it's often hard to keep them together. Dawson wants to play and Tyelr wants to run the halls and play with nurses. Once the day is over, the kids finally settled into their beds, I get "me" time, to update blogs, watch tv or just go right to bed. It's nice to be able to reflect on the day and think about what worked and what didn't. Mentally making a list of things to do or ask about the next day.

No comments: