Excerpt from the Caring Bridge Journal of Caroline DeLuca,
The other night as I was doing a tube feeding around midnight, I was kneeling by Caroline’s side and pouring away. I realized that I do this in the dark. Now, I am not one to brag but a tube feeding in pitch dark is quite an impressive feat. Not one that would win an award on America’s Got Talent, but still quite a feat. You feel around till you find the G button, then move the tube to it. Then feel for the stubby end. Then you know which end of the tubing to …well never mind but you get the point. At that moment, realizing that this was impressive to me… clearly no-one else, but anyway, I realized that I was a tube feeding maestro. I mean I have been doing it for quite a while now. 23 plus years doing diapers, I can do a stand up diaper change with the best of them. I can do the medicine box without the list of meds and times. My nurses still marvel at that one. I can switch the G button, pull it out and re-insert the new one, anywhere anytime. I could do it in a moving car if I had to. All these skills are pretty specific to our situation but still good skills.
Tonight I was reading Facebook and I saw a post from a friend, in the trenches with me. She had a meltdown. As you know i do that myself from time to time. In her meltdown, which I am about to paste in here, she listed all her skills. It got me to thinking….these skills are also chores, well, you can think of them as skills or as chores, depending on your mindset, which varies day by day. Here is what Lisa said: “Stop reading if you don’t want to hear some serious negativity. I am tired. Mentally and physically. I am tired of seizures, seizure meds, crushing pills, tube feeds, daily suppositories, changing diapers. I am tired of not knowing what’s wrong, tired of holding her down during cathes, xrays, ultrasounds, MRIs, etc. Tired of sedations, hospital stays, ambulance rides and ER trips. I am tired of washing my hands and asking who’s been sick. I am tired of having set times for meds and tube feeds and never being able to ‘wing it’ when out. I am tired of lifting my daughter in and out of her wheelchair and helping her to stand. I am tired of having to plan what I will do if she has a seizure everywhere I go. I am tired of trying to read into her eyes to see what she’s trying to tell me. Is she in pain? Is she nauseous? Does she have a headache? Is a kidney stone stuck? I am tired of having to research my ass off before each appointment so I can ask for certain tests to be done. Yes, I usually say that it can be worse and it sure could be – much, much worse. And, believe me I am grateful for that. But for now, just know that even though I always have a smile of my face it is EXTREMELY hard and unless you live like this you will never understand.”
So I read this and I just thought, “wow, I certainly do understand!” I am just so sad that her heart is sad and I am proud to know her and am impressed with her skills. what a huge list of SKILLS she has. Tomorrow I may not see it as skill set. It may be my turn to find it as onerous chores. Probably will, but today I am choosing to see it as my impressive skill set. Lisa’s impressive skill set!! I am proud to know her. I will remember when I am tired and worn out, worried sick, that Lisa is there if I need her. I could Facebook message her and a few others and they would have my back. I forget that sometimes. When I feel alone. Which is a lot, in a crowded room it can feel that way sometimes. Rarely now. As I am older and have much more support. Tonight I am stressed a bit, A is home with fever and that puts me on HIGH ALERT. Fever in the house!!!!! It is like fire in a crowded theater to me. FEVER!!! ALERT…. If Caroline gets sick all bets are off, and our tenuous hold on, well, pretty much everything, is in jeopardy.
It gets me stressed. He is in total isolation from, pretty much everyone, I take him all he needs but don’t even touch the doorknobs. It is not a fun way to live, but it is temporary and so necessary. Flu season is my nightmare.
So I am taking my skill set and going to bed.
Good night all,
E, VP ESGH Board of Directors and super-duper amazing C