Things I never knew about life with a sick kid until it hit me in the face:
1. How easily you can handle medical things
Remember the days when your first baby was little, and tears came to your eyes when she cried during her shots? Yeah, that leaves pretty quickly when you have a child getting blood drawn several times a day. And doling out over a dozen medication doses in a day is a piece of cake, even when my son throws a fit and screams and runs away because the liquid steroids taste awful.
2. How poorly you handle everything else
I don't know if it's just me personally, but keeping all of my children fed, clothed, and medicated is the very maximum that I can accomplish many days. I see a sink full of dirty dishes and the idea of washing them is so terrible I'd almost prefer bamboo shoots under my fingernails. Not to mention the emotional wreck I am most of the time; so much so that hearing that a movie I'd wanted to see would not be in the theatre on the one day my husband and I could get away for a date brought me to tears. And the movie ended up staying for that day anyway.
3. How hard it is on siblings
My baby may never know life without a sick brother, but my oldest daughter has had a very difficult year. She had behavior troubles in school, which is very unlike her, wakes up with nightmares that are often about losing her brother, and has outbursts toward both of her parents on a regular basis. Some of her stress comes from not receiving as much attention as she deserves, but I think more of it comes from the constant worry about her brother. The two of them share a room, so she has been there for all of the down and dirty moments from vomiting to screaming pain. She doesn't understand it all, but she understands enough to worry her poor little heart out.
4. Irrational worry
I have never been a worrier, and I praise God for that, because a natural worrier (like my mother-in-law, for instance) would have a much harder time emotionally with chronic disease in the house. But there are moments when I open the door to my son's room and feel nearly certain that I will find that he has died. Logically, there is no reason for me to fear that at this point in time, but that doesn't stop it from coming.
5. How differently people treat you
When I see anyone who is a friend on Facebook or is aware of my son's condition, he is almost always the first topic of conversation, frequently even before the word "hello". I expected that. But it seems that people also expect that I have lost my sense of humor and shouldn't be joked around with during this "difficult time". Or, even worse, that I am so constantly busy with my own family that they shouldn't bother to call on the phone or ask me out for a cup of coffee. I certainly didn't have a bustling social life before my son became sick, but it has all but died in the last year.
6. How little people can actually help
We don't have any family in town, but we have many loving people who support us in prayer and frequently offer to help. But the thing is, there's not really much anyone can do to help. Little household chores would be helpful, like folding laundry or mowing the lawn, but those aren't the kinds of help I feel that I can ask for from someone who isn't close family. And as much as my husband and I would benefit from some time on our own, with a nursing baby and a son who needs many medications throughout the day, it really isn't practical to ask someone to babysit for us either.
7. How little faith helps
As many times as I've heard God referred to as "The Great Physician" recently, it has never brought me solace. I know without a doubt that God could heal my son this very minute. But He hasn't. And as much as I'd love to have faith that He will heal my son, I don't. Because he might not. Children die every day, many of them Christians. God loves his children, but He allows them to suffer. Yes, there is probably a greater purpose behind all of it that I don't see and maybe never will, but that doesn't stop it from sucking.
8. How much faith helps
Remember how I mentioned that I'm not a worrier, but that I suffer from crippling worry every now and then? If I did not know that my son is in God's hands, those crippling moments might last for days, rather than minutes or hours. I confess that I have not had a spiritual breakthrough, with hours spent praying or in scripture, or even a significant improvement in my too-lax devotional life. But I am in constant prayer throughout my day. Not locked in a closet or on my knees, but as I wipe the face of my filthy baby, or as I hear the whimpers of my son, or as I see the heartbreak on the face of my daughter. I know He hears me, and I know He is with me. And any "strength" that people say they see in me is His, not mine. And He gives only as much as I need: enough to give medication, but not quite enough to wash the dishes.
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