Tonight is stressful for Jackee and I. Tomorrow we have to take our Isaiah to daycare. We are lucky to have found somebody who lives very close to us, is well recommended, and has dealt with kids who can't eat certain things. But, it will still be hard to drop him off to somebody we have met twice to care for him.
We are so blessed, but life is pretty scary still. The expense of PKU is daunting. The time commitment of cooking and preparing for the food is overwhelming (read this blog post: http://pkufamilies.blogspot.com/2010/01/day-in-life-of-pku.html). Drawing the blood twice a week is sad as Isaiah cries.
With all that said, I still feel so blessed that we caught the disease and Isaiah will not be mentally handicapped. There are so many conditions that you can do nothing for. PKU we can control. It still sucks though.
Jackee has been absolutely amazing with everything. I have to admit she takes the brunt of this. She took all the blood tests while she was off, had done 90% of the housework, and has been up more than me in the middle of the night. Not to mention all of the crap that goes along with breastfeeding and now she is back at work. She has been awesome. I am so lucky that I married her.
We are now past the trauma portion of finding out about Isaiah's condition. Now we are trying to find the time to get our house ready to put on the market. We are looking to the future and thinking of all the extra time PKU is going to take. All of this is just still hard to process.
All though all of the above is not fun, the worst part of the condition is realizing that Isaiah will consistently feel different than everyone else. Our lives revolve around food. Every holiday and event involves food. I am sitting here watching the Super Bowl thinking about Isaiah's Super Bowl parties and what he will eat.
I don't mean to whine, it is just difficult right now. Isaiah is so cute and his smile lights up my life. I wish I could live with the disease rather than him. I wish I knew how to support Jackee better.
God is our strength, and he will continue to provide what we need. I pray for clarity and strength. We are so blessed. We have a child that is healthy, and happy. God is using this now for something.
One last thought, thank you to all of our friends, church, and family, they have been amazing and have carried us.
