Sarah was unusually grouchy yesterday, and I was afraid to ask the question I knew in my heart I needed to ask, because I couldn't bare to hear the truth. So, when I did summon up the courage to ask how her eyes were doing it shouldn't have hurt my heart so badly to hear her say that her black spots were back, but it felt like a dagger had just pierced through my heart. I tossed and turned last night, and got very little sleep. It seems like every time we are gaining momentum in our lives something happens with Sarah, and it brings us right back to the reality that there is no escape from this disease.
I know that the rage is always with me, but it usually sits dormant, and I am able to forget about it for patches of time. But then when we come back to square one with Sarah's eyes it bubbles and gurgles with a fierceness that I don't know how to contain. I want to spew hateful words at a God I am not sure even exists because, if he did, he would never let children like my Sarah go through the shit she has to go through. I want to take the venomous rage and tell God that he picked the wrong mother to screw with because I will fight with him forever and ever in order to try and make Sarah better. I will battle him until I have no breath left in my body, and I will sit in the pits of hell for all eternity, just to help her fight this monster that lives inside of her.
Bob and I sat up last night after all of the kids had been put to bed, and just talked about what this means. Sarah is now losing her hair in clumps because she has been on her steroids for too long. Her once beautiful thick brown hair is becoming ever so thin. Physically, her body could not handle another load of steroids. Not so soon after her last dose.
We both think that whatever is going on with Sarah's eyes is not Optic Neuritis. Her optic nerve healed months and months ago. This is something different. We both feel it in our guts. I think that we are both deathly afraid that whatever this is is going to take her vision, and that there is nothing we can do to stop it. Avonex is not the way to go. I know that, to some of you, this makes absolutely no sense, but please trust me both Bob and I are on the same page with this. We have done enough research and talked to enough people who actually take the drug and know enough about MS to know that Avonex is not the way to go. I know that there is a lot of conventional "wisdom" out there that would point to taking a drug like that, but sometimes everything is not always as it seems. If Bob and I thought that putting Sarah on a drug such as Avonex would help her we would have done it a long time ago.
My only saving grace at this point is that Sarah has had several days recently where she was able to eat whatever she wanted to. With the holidays, I told Sarah that she could have free reign over what she consumed on certain days, and she did. Except that instead of there being 1 or 2 days where she ate dairy there were about 5 or 6. There were several days as well where we did not take our vitamin D/Omega 3/vitamins because I simply forgot. (I keep all of the vitamins - except for the fish oil - in the closet. I am moving them to an open space that I see everyday so that I do not forget to take/give them out daily.) I am hoping upon hope that this lapse in our dietary and supplemental needs are what is causing this latest eye issue and that once we right both of these things then her vision will clear up.
Another issue was a lack of sleep on her part. Because of New Year's Eve we let her (and her siblings) stay up until midnight. Sleep a huge part of MS and how one feels. Although she slept in until 10:30 yesterday the late night before coupled with the party we attended that day may have been too much for her. Tiredness, stress, not eating well can all create an exacerbation. It is hard to balance letting her live a "normal" life along side of managing a disease. I don't want to keep her from doing the same things that her siblings are doing (staying up to celebrate the new year) because she will come to resent her disease (if she doesn't already) and maybe even her siblings. At the same time, I need to recognize that maybe as a family we need to alter some of the things that we do to accommodate Sarah. I have to be careful with that, too, because I don't want to change everyone's life so much because of Sarah's MS that they begin to resent Sarah.
I feel like a bad mom because she is suffering. I feel like it is my fault. If I had remembered her supplements and diet and sleep regime then she wouldn't have vision issues creeping up again. After all, she is only a child - a small child with a grown up disease - she cannot be expected (right now) to have the adult discipline necessary to take on all that is required to manage this monster. (Although, I do expect her to take on some responsibility.)
She is still sleeping, my sweet girl, and I am worried what she will say to me when she wakes up. Are the spots still there? Are they worse? Are her eyes now blurry too? Can you even imagine what it would be like to be staring at something (or even everything), and for certain parts of what you see to be missing - blacked out - because you have several small dots in the way? Can you imagine what it would be like to be 9, and trying to see the whole picture, but cannot because your vision is a jigsaw puzzle where you are constantly trying to fill in the missing pieces?
There are no "away" days with MS. There is no escape. I so desperately want to be able to have days in our family life where we don't have to deal with MS and its symptoms. Pre-MS Normal days. But, as we have been shown, there are no vacation days that I can take. I need to always be vigilant when it comes to Sarah. I cannot stay at a party with friends as long as I would like to because it affects Sarah. I cannot stay at my extended family's homes as long I would like because it is too much on Sarah. I need to really change how I live my life in terms of managing her disease. I need to not be so selfish. Because when I am selfish Sarah suffers. When Sarah suffers my heart breaks. I cannot handle my heart breaking anymore. I feel like it is killing me.
No comments:
Post a Comment