I know we have requested prayer because of illness countless times. It probably seems like there is always someone sick. I thought I would type out a list of practical, in the natural reasons of why we are often sick. By we, I mean Jesse, Asher & I because until the end of Dec. when Joel & Calla caught mild colds, they had been perfectly healthy for over 10 months!
I believe God is bigger than this list, and I believe He wants us healthy, perhaps this list will give you clearer insight as to how to pray specifically for us, and to help others understand a little bit what life is like for us since Asher was born.
1) Jesse and I are sleep deprived. We hardly get a full night of sleep. Asher wakes up constantly for various reasons. One of them is thought to be “just part of CHARGE syndrome”, no one knows for sure why kids diagnosed with CHARGE have this trouble of sleeping! We (or at least one of us) for over 2 years has waited up to give Asher his heart meds – 10pm at the earliest, often 11pm. There is never a “Let’s just put the kids to bed and sleep” sort of night! Healthy eating, exercise and supplements will never be a substitute for sleep!
2) We try not to let this consume our lives, we trust Asher to God, however, always running in the back of our minds is the stress that comes with the responsibility for caring for Asher’s every need. We make critical, sometimes life and death decisions for Asher often. This type of stress does not help our bodies fight off illness.
3) It is now believed that Asher may have another gene sequence that causes lack of growth (on top of the growth problems faced by kids with CHARGE) as well as a lack of a properly functioning immune system. He is considered to be medically fragile and immune compromised. He picks up everything. His body and heart are just not strong enough to fight everything off! So, we limit our times out of the house, and stay away from people who are sick (if we know ahead of time)…otherwise, we are always “taking our chances” if we are out and about.
4) We visit 3 different hospitals frequently for various follow up appointments. That is on top of the amount of times we are in and out of the doctors office. These aren’t places I would suggest to frequent with a medically fragile child. ESPECIALLY at the age he is at, wanting to touch, taste and explore his surroundings! We do our VERY best to sanitize, change our clothes, even wear masks sometimes but those germs are pesky! People think that I am overboard for not touching various things (including magazines!) in hospitals and offices, but honestly I am trying to keep us well!
5) This one is just the good old fashioned – People STILL leave their houses when they are sick! They still don’t wash their hands well enough, and they are still out there spreading their germs.
Bottom line is we are run down. We do our best but we are run down, it’s really hard to stay healthy when your body is that run down. And it’s not just our house, there are families all over with kids with special needs who feel the same pressures and stresses. While you pray for us, you can pray for them too!