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Health & Fitness

Laughter and Nail Polish

After a week of adjustment, some beautiful results are starting to emerge from our heroine....

Last night I finally did it. I left Juliana at the hospital overnight without anyone sleeping by her side. It was the first time, in all the many nights that she did not have someone with her.

It was a tough choice, but after three nights in a chair with the wheelchair as my footrest I needed to get some sleep. I went back before she awoke this morning and everything was (mostly) fine. There was one small issue that I addressed and am reasonably sure won’t happen again. I know that hospital staff are trained professionals and I should trust them, but they have many to be concerned with—I have one. I am not really sure if they appreciated the fact that I took sole care of her during the day or if they felt that I should step aside and let them but in the process of "gently winning them over" I decided that I was going to care just a tiny bit less for their feelings and just take care of my daughter the only ways I knew how. And even though I have spent almost the entire last week with her through a bit of a drama, I am happier with her progress than I have ever been.

I sat there tonight watching her sleep and wondered why I was not worried or upset at all. I knew that while Chris was weighing the very difficult decision to stay or to fulfill his commitment I assured him that both Juliana and I would be fine. He was truly convinced and told me as much. I wondered at the time if I was faking it for his comfort but had little time to ponder it as the needs of the days became so demanding. But tonight she slept; I sat quietly beside her reading and holding her hand and it all made perfect sense. 

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Before I share with you my grand (or maybe just average) revelation, let me tell you about Juliana’s day. It started with getting her out of bed to go to the bathroom and sitting in there with her for 20 minutes waiting as she just couldn’t go. I brought her back out a bit concerned until the nurse told me that they inserted a catheter in her at 5 a.m. because they did a bladder scan and her bladder was full. (Issue I mentioned from above). I don’t think they heard my blood boiling but they at least sensed my "displeasure" and reacted accordingly. (Whose bladder isn't full at 5 a.m. if they haven’t gone to the bathroom all night?) “Why didn’t they just take her to the bathroom?” I asked.  Hmmm … guess they didn’t think about that. She now has orders in her chart that she cannot get a catheter without consent from me. And as I told the nurse as I left, “And I probably won’t give it.” If it was done for a medical reason specific to Juliana then I would consider it but it is more protocol in the rehab department.  (We could debate the methods and the pros and cons but we simply left it as "because I said so" which has worked for me before in this setting). 

Moving on.

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Her breakfast tray was late, but when it arrived the nurse also gave Juliana some Milk of Magnesia to help regulate her. (Oh dear, so much indelicacy, one day I will owe my daughter a great apology). Well, it never reached its intended target because 15 minutes later, after I had washed her shiny clean from her head to her toes; she quite unexpectedly threw up her late tray of breakfast all over the bathroom floor, door, and mom standing in front of her. No worries, it was not an illness and she was fine the remainder of the day, (although I was a little gun shy every time she had an extra swallow or two in a row).

Once cleaned up we pretty much just ‘hung out’ through the morning and did some reading and watched some TV.  At 10:30 a.m. they were offering manicures in the day room and Juliana was watching the clock, very happy to go have her nails done. It has always been one of her simple pleasures and she loves to show off her pretty hands. After getting her nails done, Juliana got a visit from Chris’ mom Gloria and his sister Gianna and his brother Anthony. She ate her lunch and then shared her brownies that Gloria brought for her. And during the whole morning there was one very notable thing about Juliana: She was happy.  In fact, she has all but put her childish temper tantrums to rest with her incessant tremors. They both have quelled so much that I am starting to feel the reason I am so relaxed at this hospital stay. Oh, did I never mention that her tremors have subsided? Ah yes, the baclofen pump has already claimed a victory in our book. They still appear every once in a while when she is trying hard or gets excited but they are more or a "did you see that shaking?" than a "wow, that girl is constantly shaking." I would have told you about this big W sooner but I was afraid to announce it and then it just be a false positive. I suspect as they start to adjust the pump dosage the remaining tremors may be at risk for disappearing all together.  We will not miss them. 

With that instability under control she can begin to succeed in simple areas of daily living. That is what occupational therapy will begin to focus on tomorrow. We have already made it part of her day with giving her more responsibility in eating and drinking and I have to tell you, it is on the verge of being liberating. Not quite mind you, she still has the impulse to eat too quickly and her hand–eye coordination needs serious adjustment, but the independence that I can see right in front of us is a beautiful thing. The rest of the day was spent much the same way, just her and I chatting and laughing and attempting to play checkers—we got the game set up at least. 

We talked about using this inpatient time as an opportunity and her attitude is at long last aimed in the right direction. "It’s better than having it all be for waste” she told me. I know she is not happy to be there but is thinking of how she might be able to show Chris a big improvement when he returns. I hope so, too, but I don’t want to tell her that has already been accomplished with the laughter and stillness, otherwise she might end her efforts right now! 

Then at dinner time Cheyenne showed up to spare me the hospital food and brought me dinner and Juliana dessert. (OK, the girl is going to either have a serious weight issue or a sugar issue because she continues to be brought treats!) The visit was fun and Cheyenne got to experience the fun side of Juli as well. It’s just so darn cute seeing them both interacting playfully. I would like to say it's just like it was but I now know it never will be, but it can eventually be equally as good.

So as I thought about my solid mental state, something I haven’t really been able to say for quite some time, I wondered how this round of hospital stay is keeping me still so steady and content. The same burdens exist and the challenges are understood with saddening clarity and yet I feel at peace.

Then I recalled what I was writing the first time around. 

It was 75 hand-written pages (most of it before the blog that was published) of the unknown ahead of me and the description of a desperate mom willing her daughter back to life. I recall specifically writing that phrase as my intentions. I sat for months hoping she would recover and praying I was doing the right things, making the right choices and waiting to see if the movements were actually improvements or not. This time as she slept and I held her arm I could feel the forward motion. I knew what to do if she woke, I know how to help her move on and improve and I knew that she has a life of value even if she stays exactly as she is today. I felt like what I desperately wanted to do for my daughter nearly two years is what I had some ability to influence this go round. I can safely say I didn’t lie to Chris to help him to walk away, Juliana and I really will be fine. Her laughter was my medicine to give me what I need to calmly embrace this next chapter: Sweet acceptance.

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