Monday, July 25, 2011

2011-06-30 17.20.48It's been a month since my last post. It feels so much longer than that. With a few, very small- exceptions, J has been fabulous. He did experience an intestinal blockage that sent us to the ER, and we have had a few small digestive challenges, but overall he is just incredible. He has gained over 2 pounds and grown 3 1/2 inches sine his surgery. His height is now back up near the 90th percentile, and weight has crept up to almost the 25th percentile. He looks so much healthier that it makes my heart sing every time we do a tube feed. It's like his body was bound up tightly just waiting to grow, and the G Button freed him. We did switch from overnight continuous feeds to part time drip/ part time bolus after two incidences of his tubing becoming wrapped around his neck. His lungs have fared well in the summer heat, and other than a few precautions to prevent dehydration (salted Vitamin Water is his new favorite), the summer has been pretty easy, health wise.

Somehow, I expected that a period of good health like this would make things easier. I'm certainly grateful for less is more on the medical side of things. We have definitely done all we can to enjoy the relative peace from CF troubles. Swimming, playing, finger-painting, running, and exploring have fit themselves nicely between nebulizers, CPT, pills, & feeds. Life seems downright normal sometimes.

But there have still been a few aspects of this' downtime' from CF in which it has made life difficult. My husband has been facing some issues with delayed grief over Jackson's diagnosis. I'm willing to bet it's not uncommon for the person who isn't the primary caregiver to repress the pain and escape into work or other activities. If he's up to it, I'll invite him to write a guest blog on the topic.

Another challenge that has been, at best- a mixed blessing, is the matter of health insurance. After struggling to get Jackson (and the rest of us) insurance for over a year, we are off and running. But the 'running' part should probably be followed by 'out of money'. It's hard for me to articulate my feelings on this point without sounding ungrateful. We are incredibly fortunate to have financial help from family that will enable us to meet the premiums, co-pays, deductibles. and out of pockets. I won't have to lay awake at night wondering how I'm going to pay for medications. I am deeply, genuinely, and intensely grateful for that. But it makes me so angry that we can't do it on our own (yet). I don't feel entitled, but I do feel there should be a cap on how much of yourself you have to give up in order to achieve some things. My husband has freaked out and started working 90 + hours a week because he WANTS to do right for our family. We are lucky to see him for an hour at a time right now, and while I'm proud of him for his willingness to do anything, it's hard to keep the home fires burning sometimes. I'm stuck in limbo, desperately wanting to contribute, and incidentally desperately limited on options- trying to find a way outside the box financially. We want to be independent. We want to be able to provide for our children.

This is hard for me. I once raised my daughter on $8 an hour, all by myself. There were more than a couple times I fed her with money I found in the seats of the car, or couch cushion change. The Dollar Tree and the Dollar Menu were often our saving grace. And it feels like hitting a brick wall that somehow now the two of us can't manage this by ourselves. I hate feeling incapable.

I try my best to just be worthy of the help I get, and to help others whenever given the chance. I'm not sure what else I can do but hold the hope that I am indeed, fostering some good karma.

Hopefully I'm back to blogging regularly now. Being a stream of consciousness talker sometimes leaves me feeling overexposed, but also means I never go too long without word.
2011-06-29 15.51.07