So.......... desperation, hopelessness, profound heartache, grief, homesickness, loneliness, pain, and even to my chagrin bitterness.
This comes largely from the realization that this is it. This is our life now. You see, when you get a diagnosis that is not given with a time clock (ie. 'you have six months'), there is inherent hope. After each diagnosis, I tend to think "Okay, now we know why, and if I work really, really hard I can make it better or at least easier or maybe even resolve it." I mean if I learn everything there is to know about a subject, and I put an overwhelming amount of work into it, I can't fail, right? Well, before having a child and getting sick, that seemed to be true. That couldn't be more wrong now. It's not "better". Or easier.
When I was being emergency transferred to the University Hospital, nearly four years ago and 27 weeks pregnant, delivery was supposed to be the start of getting "better"- that is, if I lived. Then, when we finally left the NICU, that was supposed to be the start of our son getting "better", and somehow at two years old he "would be a typical child". I looked toward each milestone as the moment where it would get easier. Each milestone came and went, and it became only more complicated, more difficult. As each year passed we became more ill. Every year following my son's delivery, I was diagnosed with one or more new autoimmune diseases, each one making treatment- and daily living- more complex. The days in the NICU would not be the only ones that I would fear for my son's life. There is no more hope to be had in future milestones. This is simply it. I'm not sure it is ever going to get easier.
Yes, I know that I am lucky to have my beautiful son and to see him grow into a boy. I really and truly do understand this. That somehow doesn't seem to be enough to completely resolve my current disposition. I think a huge part of this is.... People can do anything for a short period of time, but forever is a lot to ask. And chronic illness is often forever.
When the idea of a temporary life change turns resolutely to a permanent one, there is an amount of grieving.
I have lost the idea of who I am as the things that I used to feel define me- adventure, nature, hiking- have slowly been consumed by illness. I used to hike on average 20 miles a week and have now been resigned to paltry ADA wheelchair-accessible trails, which serve as only a mile or two on a very active week. Hiking was such a very huge part of my soul, and has thus been a very huge hole to fill. Previously if I felt depressed, uneasy, or worried, I walked it out, rain or shine, with my dog at my side as silent companion listening to my every thought.
I have lost my idea of motherhood as the things I dreamed of while cradling my tiny pregnant belly have been lost to illness. I dreamed of holding my tot by the hand as we explored the tidepools of rocky beaches and the fringes of wetlands, teaching him all the many things I know about these wondrous wild places. Instead, I have held his hand through nights of difficult breathing and days of therapies and doctors' visits, and to my despair, I have not been able to hop along tidepools with him at all, thanks to my wheelchair. I have felt myself cling to him tightly in fear of the nights that he has been rushed to the hospital, struggling for breath. He has been both bearer and witness of such suffering. I have felt such desperation for help, for improvement, in both medical and autistic/developmental aspects of his life.
I lost my idea of pregnancy itself, since my pregnancy ended before I had seen my third trimester begin and never had the chance to experience some of the things I was most excited for- a beautiful round belly, maternity and newborn photos, congratulations on my delivery, hearing my son cry nor holding him for nearly a month, and most of all feeling him kick in my belly- and have lost the chance to even choose to have more children.
I have lost the chance to develop the "professional" part of myself. By that I don't necessarily mean a paid job (although that could fill that need). I just mean that everyone needs to feel like they are doing something important and for many people that needs to be in addition to raising children. If raising children fills that need for you, that is wonderful, and there is absolutely nothing wrong with that, but that is not the case for everyone. When I was five years old, I did two things, that I was very serious about and intended to follow through on until becoming disabled. First, I wrote a letter to NASA telling them to save a spot for me, because in twenty years, I would be hired as an astronaut there. They responded by saying, in a nutshell, 'Please do!' and sending me outstanding 8"x10" photos that I had tacked up on my walls until they were lost in a moving incident when I was fifteen years old. The second thing I did was write a book about how to save the planet that won author's awards for my school, school district, county, and state. I did so many things throughout my life as I dedicated it toward saving the planet- including my own research for my Master's degree in biology regarding ocean acidification (climate change affecting ocean chemistry). The first of these promises has been torn away by illness, and although the second promise has not been torn away entirely, illness prevents me from likely ever making a real impact in the way I had hoped (and has prevented me from publishing my own research).
I have lost financial security to illness. I am very good at being scrupulous with our finances, but I often hear people complaining about how they have no money with two or three times our income. It has taken many options in life away, such as ever owning our own home. And as of right now, it has taken away home itself. We live in a house yes, actually a very nice house, but it is just not home. This is because we lived the last ten years about 150 miles North of here, and it is so different here. I am simply not a city person at all, and I desperately miss the places and people of home. My desperate need for nature was fulfilled just a small amount by living in the woods back home, but now, this commercial setting has left that need totally unsatisfied.
I think one of the most difficult "forevers" to accept is the lifetime of pain. My emotional pain is simply much outmatched by my physical pain. There are days that I have found myself unable to find relief in any way. Some days the significant amount of pain medication I am prescribed cannot even begin to touch the pain I experience. I hurt too much to lie still and too much to attempt to move. I begin to vomit repeatedly from my body being unable to handle the pain, and my body is too weak to handle the vomiting. I am no stranger to vomiting, but my body has grown so weak that it has become very painful to do so, often severely pulling several muscles at a time and breaking blood vessels throughout my skin. At times my body is at odds with itself- too tired to function, but too painful to sleep. I find myself praying beseechingly for God to end this. The failure of my body has wrought the destruction of so much- the hope of tomorrow, the suffering of my son's body as the result of prematurity, the ability to take part in the things I love and the person I am, a marriage free of the burden of caregiving.
I know that my life also holds beautiful things. I am a photographer, not only to feel like I can be good at something still, but also to constantly remind myself that there are beautiful things plentiful all around me so as to never forget. My son is an absolute miracle- one that I could have been without. In fact, as I looked over my chart notes during my hospital stay with him, there was a simple line stating his death was "imminent", which surprised me, even after witnessing how sick he had been. Every day he brings beauty to my life. He has proven to me that the love of your child is unlike that of any other. I try very hard to be brave and be positive and be the mother that a miracle deserves. However, I also try to be truthful, and the truth is that illness is not all cliches about working with what you are given and not being defined by anything and not being given more than you can handle. The truth is that long term illness does wear on you. Sometimes it is emotionally painful. Sometimes it is more than you feel you can take and all you can do is let time pass and only then simply, because there is no other choice. And it certainly defines you, just as any other part of your life defines you.
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