Thursday, April 18, 2013

Tight Rope Walking

Every feel like your walking a tight rope high up in the sky and your teetering? Like Your future is teetering? I feel that way right now. It has nothing to do with my kids its just an internal feeling. I feel like I'm high on up on that tight rope teetering, dizzy with vertigo.


On a brighter side Liam is doing wonderfully.




Monday, April 8, 2013

Keep faith

Liam tried new food today. Carmel Cadbury egg and chicken flavored top roman. Both were hits. Of course the top roman was its salty and he likes salty. I swear every time I look at him he's growing and changing. His face is changing quickly. He's loosing that baby look and is developing a more mature facial features. The last 21 months have gone by so fast and yes I want him to quickly grow out if his medical problems but I don't want him to grow up. I'm proud that he is yet sad that he is. Lanie is going through another growth spurt too. Her facial features are yet again maturing. They look so much alike yet so different. Liam still thinks he's funny when he does things he's not supposed to and I find it hard to hide my smile and laughter. I find myself saying "he's a boy. That's what boys do" alot lately and I love it. It seems to get easier everyday watching him grow up. This time last year was filled with alot of tears and "why's?" This year is laughter and smiles. That's inspiring. Knowing there's hope out there for other families going through what we went through is a great feeling. I didn't have anyone's story to read an follow to help me through those dark hard times and that's why I share our journey. Keep faith.

Failure

This morning the home nurse came out to watch me flush Liam's mediport. This was supposed to be the last time she came out. If it wasn't or my failure to be able to get the needle into the port for the second month in a row then she wouldn't need to come out again. She says I did really good and when she went to access the mediport even she had problems. My needle was bent from hitting the metal side of the port, something even she kept doing because Liam's port was at an odd angle. Despite hearing from her that I did really well an handled the situation perfectly, I feel like a failure. In the end I am responsible for Liam's care. I have to be able to access his port on command and flush it. I don't understand how I could access it on the first try without problems but since then haven't been able too. Did I get to comfortable? Do I just assume I'm going to get it every time? I took longer feeling the position of his port to ensure I'd angle the needle properly. I concentrated solely on my task and didn't let anything distract me. So why is it I couldn't do it? Now she has to drive back here next month and we have to go through all this again. I feel like such a failure. Between the mediport today, my chili beans failing horribly yesterday, not being able to soothe Liam for the first time on sat I feel like this entie last 3 days have been an epic failure.