Believe it our not we are still here… just have not been here, on this blog all that much, for all sorts of reasons….and I miss it. Writing on here is very much a sort of therapy for me, it helps me to organize my thoughts, clarify some of the everyday and not so everyday experiences of our crazy and very fulfilling life, and share and document our journey…our lives…for us and you too.
I have been struggling with how much I want to share with all of you about what we have been feeling and experiencing. In all honestly, I don’t know that I have the ability to put into words some of what we have been feeling… because at times we don’t even know what we are feeling. We are learning, processing, really trying to feel it, embrace it, and find words for how to describe it. We are trying to live in the moment…trying to live in the here and now! This is much harder to do than it sounds. It requires us to be in touch with our feelings and embrace them. As emotional as I am, it can be difficult to really feel what I am feeling and appear like I am sane, or better yet, not insane.
If you have followed me this far, I will try and give you an example of what I have been trying to explain. If you are a long time reader or even just a recent reader, you know that Lucy’s health has taken a dramatic turn for the worse in the last few months. Pardon me for using a a really bad metaphor, but we sort of walked off a cliff in October(thinking back, we started walking towards it last spring) and haven’t stopped falling since. Although, at the moment we don’t feel like we are descending as rapidly. The months that have followed have been filled with one medical crisis after another. We have had some very serious conversations with Lucy’s doctors about “quality of life”, and because I am writing to you about feeling what we are feeling in the moment, let me just tell you that it just plain sucks that we had to have those types of conversations, especially so close to Christmas. There is something so magical about the holiday season…it has the ability to bring out the the best, and more emotional side in us. The holiday season does something for our memories, the time of year acts like a sort of time capsule, you remember what you did this time last year, two years ago, even a decade ago. Maybe it’s the tradition, or the spirit of the season… but somehow this year was wonderful and extremely difficult all at the same time. You see, although nobody is even saying it to us in these words, we are keenly aware that Lucy may not be here to celebrate Christmas with us next year and that makes us want to celebrate the here and now more than ever!! Mito is an incurable, progressive, degenerative, disease, I have written those words on this blog on several occasions, I understand the words, it’s the feelings that accompany the process of seeing this disease progress and take over our little one’s body that is just plain difficult to understand!
Please, please don’t think that we are giving up hope or that I have lost my positive personality…I think that we are trying to balance optimism with reality, if there even is such a thing…as balance that is. I think that sometimes when looking from the outside in, it appears that something is clearly one way, when in reality when looking from the inside out, it is clearly another. We have never been in this position before. You expect that you should feel a certain way about one thing when really you feel an entirely different way. I think that what I am trying to say is that I am going to be more honest with how we are feeling…dare I say raw with some of the emotions that we are experiencing. I have been struggling with how much I should share with you, how much I should put down in words. Please know that these are our feelings, and although you may feel differently about something unless you are walking in our shoes and living our life you cannot know what it is like, and I hope that you never have to…I mean this in the most polite and sincere way. As far as I know, there is no book on how to raise a child with an incurable progressive degenerative disease, I think that Dr. Sears might be missing the boat here.
It is not easy saying what you really feel or feeling what you are really saying…it is my hope that I can share what it is really like for us to live our life. I feel a change happening in our lives and in turn on the pages of this blog.
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I'm so sorry that Lucy's health has taken such a turn. I know exactly what you mean about the holidays working as a time capsule. This year was hard for me, although I tried to pretend it wasn't. I kept going back to last year when everyone was telling me just how fine Samantha was going to be (pre-diagnosis and with motor delays). They still say that despite her Leigh's diagnosis. And perhaps she will be fine. But it is hard to know what you know and still be positive and try to live in the moment all at the same time.
Looking forward to reading more about how you are feeling.
Take Care,
Monica
I understand what you mean about having a hard time putting into words what you are feeling... though in my case I know what "it" is.... it's grief. Sad and simple. But I don't like to talk about it, and trying to process it while still soaking in and really living the increasingly valuable time we have left is a very confusing feeling. Hugs.
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