We took the kids to their well child visit last week. I am always so excited to go to those appointments to see how much they have grown. Nathan is now 5 feet tall and Madison is 5’4”. I cannot believe how much they have grown over the years. We have had the same pediatrician since Madison was born and with all the issues we have had with Nathan, she really has become like a friend to us.
We have been in and out of so many doctor appointments. To be honest, most of them talk at a level that is so high that it is hard to make sense of what they have been saying to me. We have met with Geneticist, Neurologists, Ophthalmologists and counselors and more Doctors than I can remember. They have always been very thorough in their information, but let’s be honest, these are SMART people. They give you the information and we try to understand it the best we can, but a lot of the follow up is Jay and I doing our own research on Google. That is just plain scary. The problem with Google is that you put in symptoms and it spits out 500 different things that Nathan potentially is showing symptoms of. Well that is a lot of information to absorb. I have literally been walking around saying “everything is going to be ok”. Anytime anyone asks me how Nathan is or how things are going, I just say “everything is going to be ok.”
So let’s back up to the pediatrician’s appointment. She came in and did all the usual stuff that you do with a Well Child Visit. Nathan loves this doctor, so the appointments always take a little longer. She loves Nathan and really enjoys talking with him. Her husband happens to be an eye doctor and she mentions that she always consults with her husband about Nathan. Anytime we go to Children’s Hospital, the notes feed into her system so she has been following his progress. Jay had asked her if she had seen the notes about the Cerebral Atrophy and Cerebral Lesions. She said yes. We finished up the appointment and Jay and Nathan went home. I stayed for Madison’s visit.
The doctor pulled me into another room and closed the door. When she turned around, she had tears in her eyes and she started to cry. She said, “I am so sorry for you guys. I wish I could turn back the time.” I am not really sure what prompted me to ask her, but I asked her point blank if she thought Nathan was going to die. She told me that the part of his brain that is shrinking is the part of his brain that tells his body what to do. It will tell his muscles to work, his bladder and bowels to work, his lungs to breathe and his heart to beat. She said the problem is no one knows what is wrong with him yet, but that based on all the notes, the prognosis is not good. She said this is definitely degenerative and that eventually his body will just stop working. It was like being punched in the gut. The sad thing is that I am sure I have heard these exact same words before, but hearing it from her in a way that made sense was the first time that I thought everything is not going to be ok.
Jay has been telling me for the longest time that I am in denial, and I don’t know that is the right word, but I definitely think I am choosing to think everything will be ok. It has to be. How could I possibly let myself imagine my life without my child? It is not normal. It is not natural. I don’t want to live in a world without my children. The sad part is I am slowly realizing that I may have to come to terms with that, but I just don’t know how.
We have had so much support. We have and amazing family, great friends and a great community. We have had people bringing us meals. They don’t have to, but they want to and that means so much to us.
I do not have words for the depth of my sadness. It feels like a piece of me is missing and I do not know how to get it back. I would trade places with Nathan in a millisecond if I could and I can’t and it breaks my heart. As a Mom, I am supposed to be able to fix things. If he hurts, I fix it and I can’t fix this and I don’t know that I can forgive myself for that. I also see the emotional toll this is taking on Madison and that scares me just as bad. I don’t think she understands the full extent of what we are facing, but she knows how hard it is for Nathan and us. She also knows how much she loves him and I think she has thought of her life without him and it makes her very sad, but she does not know how to express that. Being in 6th grade is not the easiest time in a girl’s life, let alone to have this going on, she has a lot on her plate too.
I am leaving tonight for a little getaway with some friend to Las Vegas. I don’t remember the last time I took a vacation without my family. I know I need to get away and have time to myself, but I feel guilty for leaving. Jay needs to get away desperately too. We are hoping to plan something for him soon. It is hard that we can’t go anywhere together, but if this is what we need to do to have some quiet time to ourselves then this is what we will do.
I beg for your prayers for our family. We are in desperate need of them. We do not know what the future holds. We unfortunately just wait and hope that when and if they find something with Nathan’s DNA; it is something that we can work with. We pray that it is treatable. We know that it probably won’t be curable, but let us be able to treat it and get as much time with him as possible.