Wednesday, February 15, 2012

Time for something to change...

Well I have been in this weird mood, I am restless and feeling out of sorts.

At first I thought what is going on? Then I knew. This always happens to me when we change Mikey's meds or something along that line. Right now we are introducing a new medication that was hard for us to buy into.

The thing is when you have kids, you just want what is best for them. You protect them and want to make all the right choices, do all the best things.

Well having a baby that was in NICU for a while and then came home with a shopping list of problems, was hard. Not in the sense that you think though. It was hard because being a new mom, I had no idea what to do or believe. When you are meeting with doctors, specialist etc and they all have ideas and opinions, it is hard. I have a masters in education not in neurology or anything else. So you start down the path, you research and trust. You try and fail. Mikey has been on so many medications, I fight with our insurance on a regular basis (ironic that I work for the company too). I have learned to be a great medication giver, learned how to use feeding ng tubes, deal with ear tubes, hearing loss and three types of seizures.

Over the last nine years we have been on the road less traveled and it has been great and terrible. It has been a learning experience and sometimes a living experiment.

So last month when Mikey broke through his medication and he lost 7 pounds, his doctor decided time for a new path. We have added some more folks to our team and we were given some options. None of them easy. The medicine is a category we have not been on, that has terrible side effects. But if successful we can lose two other medications that he has been on for years.

But every time we are here, in this spot, I do this. I eat lots of bad foods and just hold everything in. I don't let myself acknowledge the sadness or how hard it is. But I need to. I can no longer be the one who holds it in and together. I need to find balance and that is something I have not been able to do in nine years. I think the worst part is that being a full time mom who does therapy, doctors and all the "normal" after school activities and working full time is where I start to bite off more than I can chew.

So this month's goal is to spend time with the planner, plan things better, make a schedule that works and figure out how to get it all done and find some time for me.

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