Earlier, I was having a text messaging conversation with a dear friend. She was sharing struggles with her preteen son, who has an illness that sometimes requires hospitalization. While our children have incredibly different diagnosis, both require various types of at-home care, and we struggle to do the best, and be the best for our children. However, there are moments when it all feels so enormously overwhelming.
I have read on multiple forums that CF parents are often overprotective and overinvolved. It's a challenge. You could add overtalkative, overopinionated, overanxious, overprayerful... I could probably qualify as any variety of adjectives with the prefix "over" in front. But, really... There isn't much choice. They send you home with this little bundle of perfection, and inform you that your precious little baby requires this specialized care in order to just keep living, and that even if you do everything EXACTLY right, your little fragile gift from God is likely to become sick anyway. It is the ultimate responsibility. And, there is no way to do it perfectly... In the striving to be the perfect CF parent, you can drive yourself crazy. Sometimes, despite medication compliance... Despite following all the rules, illness comes without rhyme or reason. When this happens, I find myself flipping through my mental Rolodex of every decision I have made on behalf of my children trying to determine if I had decided differently at one particular moment in time, would it have changed the outcome for this moment today?
But, guess what? After talking to my friend today, I realized CF parents don't corner the market on this life experience. Parenting is hard and there are no guarantees. I mean, I watched Intervention last night and wanted to slap the crap out of the girl on there, and grab her parents by the shoulders so I could shake them until their heads goggled around in circles.
Part of the transplant procedure requires a psychological evaluation and an assessment of Danielle's support network. Well, we have the support network down pat. I mean, if anything, we support. We hover. We downright suffocate. But, gulp... Psychological soundness? How can we fake that for any length of time? What's involved? Is there some type of sliding scale? Do they use norm referenced scales? Can I research and learn the correct answers to these questions? Are there penalties for being overly studious and neurotic?
I do know that while I in no way have a handle on mental and emotional stability, I am working on establishing some healthier boundaries with Dan and Sarah. Lots of times, when one of them is hospitalized, I say "we" are in the hospital. Well, the truth of it is "I" can walk out anytime I want without any repercussions, except perhaps the nagging parental guilt that plagues me. There is this mean little girl that lives in my head who says things like, "Great! You give her a defective gene and then have a hard time watching them stick her? You stay in there for this... You suffer through the boredom and the torture of a hospital stay right alongside. This is your cross to bear too." But, when I'm able to put the mean girl that lives in my head in time out for a while, a nice little girl comes calling to say, "God chose you to be their Mom. You are the supporter. You have to be in optimal condition to do the emotional support job. Be kind to you. Take care of you. As much as I know you would take CF in a heartbeat and have it for them, you can't. That's not your job in this life."
It's hard. But, as my mama always said, "Who promised you easy?" Nobody. Not today anyway...
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