Yesterday I shared with you about how Alex’s body is changing and the possibility of an approaching decline. I obviously have no more answers today than I did 24 hours ago, but I feel like maybe I should be more specific about how she is doing. There are, in fact, changes happening and we just can’t predict if they will get worse or stay as is.
First and foremost, she is still smiling. It takes an awful lot to wipe the smile off of that girl’s face.
As for her physical body, the last two weeks have just been a bit different. I joke with her when she gets twisted up, kidding her about being a pretzel. She giggles at this and then I help her straighten out as much as possible. We do this many times a day. The specific differences… her right arm is straight and stiff. Her right leg has been like this since the last decline in Jan/Feb/March, but now the right arm is joining in. Sometimes she bends it on her own, sometimes I help her bend it and other times it is determined to stay straight. That straight right arm often gets lost under her body, which leaves her laying on it. Again, I untangle her limbs many times a day.
As for laying flat or trying to sit up (with assistance), her body has curved to the right for a while now. That curve is now exaggerated greatly, leaving her body in something of a ‘C’ curve. During yesterday’s physical therapy, she wasn’t able to sit up unassisted for any period of time. Just a month ago I saw her do it for almost a minute.
A few weeks ago I mentioned about how she was closing her mouth more often. During the first few days I believed that she was doing it on purpose, but now it seems like maybe she is not. For the last year her mouth as been open without her permission. It relaxed a tiny bit with adjusted medications, but she was never really able to control it much. I’m now thinking that the closing of her mouth isn’t completely intentional. We did go through a period of time a couple of years ago where I couldn’t have opened her mouth with a crow bar (no, I did not try that), so perhaps her brain is just sending mixed signals again?
Actually, this photo from last Friday shows everything fairly well. See how she is curved into a ‘C’? See how her right arm is under her body and her hand is poking out under her right leg? Her left leg is folded underneath her, but that isn’t anything new. However, these three things together are what often result in the ‘pretzel’ and the need for untangling her limbs. And all of this was taken AFTER I straightened her out to take a photo.
Anyway, none of this is said in panic, only in concern for how her body is changing again. It is frustrating and I do worry about it, despite my knowledge that worrying will do no good. I told Cheryl yesterday that I was doing my best to straighten her out, stretch her body and help her sit up as often as possible and what she said was simple & obvious, but somehow made me feel a bit better. She said that I can’t stop what is going on in her brain and causing this. She is right. I can’t stop it, Alex can’t stop it, nobody can stop it. The truth about PKAN is that iron is continuing to accumulate in her basal ganglia, the part of the brain that controls muscle movement and function. We can’t stop what is causing these painful changes. What we can do is care for Alex with humility, involve her in the daily happenings of life, interact with her, play with her, love her, help her understand, work with her doctors to maintain her comfort and face every day with faith while living under God’s grace.
You know that Celebrate Recovery was an important journey for me several years ago in becoming more aware of my hang ups and learning to let go of my need to fix everything for everyone. That being said, I still pray the serenity prayer every day. I will leave you with it, as it often brings me solace and direction.
“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference. Living one day at a time, enjoying one moment at a time, accepting hardship as a pathway to peace. Taking, as Jesus did, this sinful world as it is, not as I would have it. Knowing that you will make all things right if I surrender to your will, so that I may be reasonably happy in this life and supremely happy with you forever in the next. Amen.”