Since this conversation I've thought a lot about how much work we really put in to caring for Cicily. Some people have asked about how it really is.
I've given it some honest consideration and decided that right now taking care of Cicily is pretty equivalent to: having a 7 year old, a 5 month old baby, and a small part time job.
A 7 year old because she's 7 and does a lot of things a 7 year old girl does. She wants to play on her iPad, play with toys, loves to read, and loves to joke around. We spend about as much time doing these things with her as we did with Maya when she was 7.
A 5 month old baby because the day to day care she requires is like a 5 month old baby. I remember the specific day when Sophie was 6 months old and I realized, man she is actually less work than Cicily now. Cicily needs her clothes changed, her diaper changed, to be moved from one place to another, to be strapped into a carseat, to be entertained, etc. But all these things are more difficult to do with a 7 year old body! Let me tell you, a 7 year old blow out is horrendous. I've been collecting pictures for a possible future post, but haven't decided if anyone in the world wants to be exposed to the horror.
A part time job for all the other care and "office" work. Probably a part time job in nursing, and medical office manager. For nursing there's suctioning, tube feedings, trach changing, breathing treatments, various daily medicines, bathing, and diaper blow outs (trust me, they're worth putting in 2 categories). For medical office manager there's ordering 5+ boxes of medical supplies each month, fixing medical supply orders each month, making doctor appointments, getting appointments approved, getting insurance mistakes corrected, etc.
There you have it. I don't share this in any way to complain or so anyone will feel compelled to give compliments. I've just been asked, and I thought it would be interesting for people outside of our house to get a glimpse into the daily grind. How much time and effort a child like Cicily actually takes to care for. So is it worth it?
1 comment:
I couldn't help but get a hard laugh out of the blow-out comments!! I'll pass on the pictures though.
As Fred likes to say - you are in the major leagues! Not too many people get to experience what life is like and honestly, your efforts are double ours with Faith at 7 yrs old. We share some of your work - preparing Faith's homemade blended formula which you taught me how to do (thanks again!!), setting up the feeding pump for overnights, tube feedings when she is at home (school does them for us 2x/day while she is at school), weekly trach changes and daily/hourly (?) cleansing of dried up drool and food remnants off her chin!!
I'm sure you usually don't think about what you are doing and so it doesn't seem like it's any kind of burden, especially when you get the joy of being her mom - but when you do stop to think about it you finally realize it's a lot more than what a lot of other people have to do for their kiddos!!
Post a Comment