I finally have a moment to sit here and blog for a few minutes. I know everyone always says, "Well, I've just been busy," but in my case, it really is not an overstatement. Here's a breakdown:
Cohen was diagnosed with CF on February 6th. It was devastating to me to hear those words when I got the call. I was pretty numb about it for several days after. He was hospitalized on the 12th to have I.V. antibiotics to prevent a bacterial infection from forming in his lungs because he had had a persistent cough. He was (thankfully) released from the hospital two days later (on Emberlynn's 2nd birthday, which was also Valentine's Day).
I went back to work on February 18th. I really want to be able to stay at home with my two kids, especially because caring for two children with CF is so extremely demanding. Unfortunately, we can't afford for me to do that at this point. I cry about it a lot. My time at home with them consists of feeding them (nursing Cohen and doing Em's feeding tube) and doing chest physiotherapy and breathing treatments. And my time away from them while at work could be time spent with them just playing and having downtime together. I feel like after I do all the "requirements" for them to help fight their disease, I am so spent that there is nothing left of me to give as a mother or a wife. It's hard to explain. Basically, I feel like the best of me is gone and I can't give a hundred percent to my husband or my kids.
I look at my children and see these perfect little beings and wonder how this ugly disease can be inside them. It literally makes my heart ache wondering how long they have. It's morbid, but it's true, and I don't know what I would do if I outlived both my children. Children are supposed to bury their parents, not the other way around. I know everyone worries about their own children; it's in a parent's nature. But when your children have a life-shortening disease and their health is in your hands every single day, it can make you sick with fear.
I know everyone is going to say to think positively and to just pray and to look at all the good. I do all that, trust me. But I have these moments when I just want to curl up and cry and hold my babies and beg God to make them better. Like right now. You would too, if it were you.
