|In the hospital|
|A plethora of needle pokes|
|My machine keeping me breathing|
Right now, we just don't know what to expect for the future. I have started to teach my husband how to manage the things I have always done, like finances, insurance, Layne's health stuff, paperwork, just in case. I still may get better, but I may not. They said they didn't think I would leave the hospital when I had Layne, so the time I have already had has been a gift. It seems that I just continue to grow more sick. Family has talked with me about planning for the future in the event that I don't make it much longer. They have been the ones to ask. It is that obvious, even to others that don't feel what it feels like to live in my failing body, that dying is a possibility.
My life has significantly changed, especially in the last six months. A few years ago I used to hike every day, and easily hiked 20 miles a week. I was hardly home and walked in the wild with all my free time. Along the shore, in the mountains, in old growth forests. I had a vision of how my life, and motherhood, would be. I would make discoveries in science that would open people's hearts to conservation, and I would spend all of my days walking in the wild with my son and show him all of the wonderful things I knew about the world. He would be amazed and would fall in love with nature as I had. Life changes. Expectations of the future and of motherhood are not always possible.
Both of my siblings are having babies, and it hits close to home. Many women that have unhealthy babies, and are unable to have any healthy children, struggle with their family and friends having healthy children. Many have told me that they can't even see their pregnant friends or photos, because it is too painful. Those emotions are quite complicated. So far I have been overjoyed with my friends having children. My best friend just had a baby, and I was very happy for her and happy they were both healthy. However, when it is family, and both of my siblings, the emotions are complex. Particularly when I am so sick. It feels cruel and unfair that others who do not plan for children can grow and have families, while I would have loved to plan a family and stay here and grow up with them. Especially when others complain about pregnancy symptoms. I would have loved feeling my son kick or getting big and round, and I rejoiced in getting nauseous knowing it was from my precious son. These feelings do not come from a place of anger or malice, but from a place of grief, sadness, and loss. While I am happy for my family, it also comes with a painful grief that I did not previously feel with my friends' children. A grief that while the rest of my family grows and works toward their dreams in life, I continue to diminish and lose my dreams in life. I still adore their children, love their photos, and celebrate with them. This recent deterioration in my body has created feelings of loss that I just didn't feel before.
I may be dying, but I may not. It is difficult to know. If I continue to deteriorate in the way I have been, the future does not look good. Doctors do not know what should be done and don't agree on treatment and outcomes, but so far they have all agreed that I am not in a good place, and I am seriously ill. With this piece of knowledge, it is difficult not to think of the future and what it holds for our family.
|My amazing superhero|
I realize this blog post is full of emotions, many of which may make those reading uncomfortable. I aim to be real and open about those emotions that accompany serious chronic illness and the possibility of a limited lifespan. I may come out of this crisis and I may not, but the emotions that are felt are very real and are felt not only by me, but by those around me. I am not asking for anything. I just want to open a window into my life and share so that other families facing serious illness may be able to understand each other better and not feel alone.