On Sunday morning I spent 15 minutes reordering Sonzee’s monthly medications via a pharmacy recording system. I have the prompts memorized so the entire experience is actually a minute or two less than for those who might have to wait for the guidance of “press 1”, “press #”, “press 2”, etc. This didn’t include the specialty care pharmacy we use to get Sonzee’s Epidiolex, that phone call takes 15 minutes itself to review the same information I literally give every time I call, but for some reason, I’m required to repeat. After I ordered her medication, I then spent 15 minutes administering her morning medications, another 10 minutes were spent turning off her TPN and caring for her central line, 20 minutes were spent getting her dressed, and 15 minutes were spent making her food for the day, setting up new bags, and turning on her pump. Getting Sonzee up and ready takes on average a good solid hour every morning. It is ok, it is just our norm.
On weekdays we have a nurse to help with getting her things ready and together for the day, but honestly, a lot of what is done for her is comparable to weekly meal prep. I prepackage baggies of different items to make things “simpler”, but I’m honestly not so sure it really does that...it just makes the actual time spent at that moment “less”, but the time is being spent at some point. She has her linens on her bed changed every 24 hours because of her central line, any blanket or item that comes in contact with her at any point throughout the day is washed. Then there are also the psychological considerations of those who might potentially come in contact with her or a family member with "an allergy", "just a cough or cold", or a pain medicated masked illness. Maybe it might be considered overly cautious, but we are talking about literally life or death if any form of bacteria (G-d forbid) enters into her central line. I honestly do not even really realize anymore how much time is collectively spent thinking about and or performing Sonzee tasks, as they tend to just blend in with the day. Sometimes it feels like every moment is spent dealing with a doctors office, pharmacy, therapist, her personal care in general, etc. This is not a complaint, it is just what comes with the territory.
Someone recently commented (not in a negative manner) that I don’t get out because I “have 5 children”...that is honestly not the reality. It really has very little to do with having 5 children and more to do with having one medically complex child, who honestly equals more work than my (thankfully) healthy 4 other children combined. When it comes time to me considering taking "me time", the sheer thought of that concept alone is honestly exhausting. I just do not have it in me physically, emotionally, or on any level to even think about doing something, much less actually follow through with doing it. I know, I am supposed to "care for myself", it would be good for me to socialize, but honestly, I do not have the energy or really desire to find the time, plan an activity, and actually follow through with said activity.
It is really something that most do not understand, and thankfully do not have to. I am sure there are moms of medically complex kiddos who have the energy to be super-moms in every capacity, but this medically complex mom is absolutely drained. I use up every ounce of my energy and patience parenting all my children, kind of caring about how the house looks (I use the term "kind of" extremely loosely these days, yet there was once a time that I cared a lot), and trying to keep a meaningful smile on my face. I realize unless you live a life similar to ours, it is impossible to grasp just how much the complexities stem from just her, and I would love for it to remain that way for you. But just know that my outward "anti-social" demeanor and purposeful isolation are not because I wish for it to be that way, it is just how it has to be for a long list of reasons that those of you who do not know of, will hopefully remain forever blissfully unaware.
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