I have an application on my phone that tells me my social media history from each date. Often, it is a lame Tweet and sometimes cute pictures of my family, but last week two years ago was when we went to Seattle Children's Hospital for the first time. The year leading up to that week and the two years since have been utterly draining for us. Not only do we silently wonder and pray each time Kate's fingers and toes turn colors or she mentions a new pain. It is scary and daunting living within this dichotomy of Kate being mostly healthy but probably will not be. Adding to this has been Kate's Raynaud's getting progressively worse each winter.
Last winter, Kate developed ulcers on her toes. These ulcers are little sores that develop on her toes because they lose circulation. Last year they were small little spots that simply itched and her doctor put her on blood pressure medication to help regulate her blood flow. This year, she developed a very large ulcer on one of her toes and has been turning colors more frequently over the last few days with the sudden drop in temperatures. These sores might only get worse as times progress.
One thing we haven't talked much about much is that Becky developed Raynaud's about four month behind Kate. Since we were walking through this with Kate, we have been watching Becky's blood work like a hawk with her exhibiting primary Raynaud's (Raynaud's that is just there, but no underlying auto-immune disease associated with it). But as Kate's Raynaud's has progressed each winter, so has Becky's, and primary Raynaud's doesn't progress. Becky developed ulcers last year as well, so we got her blood tested and she also has elevated ANA levels. Her subsequent trips to a rheumatologist has resulted in the same diagnosis as Kate (she is fine, but probably won't be) with the twist of potential diseases being either Scleroderma, like Kate, or Lupus.
What this means is that both of my girls are fine, but they probably will not always be. This just sucks. Walking through Kate's potentially getting scleroderma was bad enough, but now having Becky in the same boat has shut me down since April. When she has needed me, I have certainly not been able to help her. Even in the daily tasks of meals and caring for our children I have left her alone. As the Fall has progressed and I took my class on Christian Spirituality, I have thankfully been challenged by friends and professors in my faith and how that affects my daily life.
From here though, this means that we now have two in our house who make regular trips to a rheumatologist, and two in our house who need to constantly wear gloves (Becky is the worst offender in this area) and never leave their beds without bundling up. It also means that we are constantly worrying about and praying against new maladies that seem to come up, even though most are harmless. Kate has been asking more questions recently, and we have been honest with her, though we do not think she fully understands what it means yet. We continue to try not to cause unnecessary stress for her, but she is slowly beginning to understand.
Please continue to pray for our family, that we can put our trust in God, that our girls do not contract scleroderma or lupus and that God might somehow be glorified in this time.
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