Our New Normal

Sarah came home from the hospital this evening, and my heart was happy. Sarah has a condition called Optic Neuritis. Optic Neuritis is when the optical nerve becomes swollen and causes partial or total loss of vision. It is very common in MS patients. The steroids that Sarah has been on for the past 3 weeks (more or less - she was only off of the steroids for 5 days before her symptoms came back) have reduced the swelling in her nerve which is great, but her vision is still pretty bad. One reason this may be is because the myelin are damaged in the part of her brain where vision is housed and her brain is trying to reroute its messages to her eye. Once the rerouting takes place her vision should come back more quickly. Everyone is hopeful that her vision will be restored completely although no one is sure how long it will take. For now, Sarah can see well enough to not bump into walls and can make out objects and people whom she can see peripherally, but she still has very blurry vision in her right eye, and a big black mass over her left eye. Her pupil's are also huge. Every time a doctors/nurse/resident/fellow, etc...would come into her room they would all ask if she had been given drops in her eyes to make her pupils so large - to which we would respond that, 'no', her pupils have been this large since she initially lost her vision on May 18, 2013.

I no longer feel rage, although I know that that darkness may come back at some point. I just feel like this is my new life. It is becoming more comfortable to me - not that I don't wish it was different, because I certainly do - but I know that there is very little - if anything - that I can do to change Sarah's situation. This is the lot that we have been handed, and we will make the best of this situation. I feel that we are a strong enough family to handle this disease without letting it destroy us.

I do still feel sadness, and I know that this emotion is something that I will deal with for the rest of my life. As I was trying to get some much needed rest at home last night (it was Bob's turn to stay with Sarah in the hospital) I saw Sarah's soccer picture hanging on the refrigerator, and it made me tear up because here was my girl smiling for the camera - her pupils had not yet dilated, her headache not yet upon her, and this disease still dormant and undiagnosed. Here was my girl with her old life still before her...there is so much that has changed in not only her life, but in all of our lives since the time that picture was taken.

I take great comfort in knowing that as I sit here and type this my whole family is under 1 roof. I do not take that for granted, and know all too well how quickly that could change. I feel centered and grounded when all of us are here even if we are all doing our own thing. Just being together is a blessing.

I am (finally) going to take some time tomorrow, and establish some new routines for our family. Things that I have been meaning to do, but got sidetracked. I am looking forward to making some changes and getting our new normal up and running. Part of our new normal right now, means that Sarah could have to go back to the hospital at any point. Part of our new normal means not being able to make super concrete plans because we don't know what might pop up. Part of new normal means slowing life down, and enjoying simple pleasures. This will be good for all of us, but especially for me. I am constantly running from point A to point B. This new life will force me to slow down, and that is definitely not a bad thing.

 It is time to start smelling the roses again. I have a lot to be grateful for, and I need to remember that. There have been a lot of disappointments this past year for sure, but those disappointments have led me to where I am today, and this is exactly where I am meant to be.