I just got home from the neurologist with Mabel. She cried the entire way there and the entire way home. It's so hard not knowing how to help her. Usually the car is our escape. It gives me a few moments of quiet while she soothes from the movement. If she starts crying when we're driving I will literally have no escape for her or myself.
I could tell this morning that I was going to have an emotional day anyway. When I grabbed the mail from the mailbox there was yet another report from Mabel's evaluations. We are almost done with early intervention (in July) but every time I read a report that talks about her delays it is inevitably upsetting. It's not the delays anymore that are hard to face; it's the reality that those delays are bi-products of our daughter's disease.
Saying the word still feels weird. Sometimes there is such a vast denial that is a subconscious protector of my feelings. Other times that protective film is ripped away and reality stands before me, once again.
Today Mabel couldn't see at all.
I noticed before we even went in to see Dr. K but she noted it almost immediately. Mabel wouldn't follow her, track her, or respond to her visually. It's always inconsistent but it's a constant question on days like today whether this will be the beginning of a rapid decline for our girl. And it's almost always up in the air as we have no definite scope as to when that decline will take place.
Mabel has also been choking more lately. Mostly it is not on her formula but on her own saliva. She takes rapid, deep breaths and her tongue has turned blue during several instances. After discussing it with Dr. K today, she agreed that this is probably caused by the progression of the disease. There are a couple of things that we will try, medications that can aide in drying up her secretions and such but overall, she is in agreement with Daniel and I and some of the choices that are needing to be made at this point for Mabel.
Sometimes I forget that this is our reality. On Mabel's good days it is easy to get caught up in the normalcy that our life now holds. Sitting in front of your doctor and being told that she not only agrees with pediatric hospice for your daughter but she "highly recommends it at this point" will always put things into true perspective.
While reading that is hard for many of you, I'm sure, please know that Daniel and I have researched, prayed, cried, mulled and sought so much council regarding this choice for Mabel. Pediatric hospice is far different than hospice for an adult who is terminally ill. For instance, with a child who has a degenerative brain disease it can be very difficult to predict not only the progression of the disease but the timeline in which care like this is necessary. Children in this situation can be on hospice for several years. Pediatric hospice would not only be another set of hands and eyes for our family but they would be here to aide in Mabel's care and decisions that we may face from this point forward.
We haven't made any calls. No formal choice has been made in this area as of yet but today as I was speaking to Dr. K, I felt a huge peace knowing that she agreed with our plan of care for Mabel. To know your doctor agrees with you and is on board with you is something that can't really be explained. This team in Mabel's care is phenomenal.
I think Mabel's crying would have been enough to overwhelm me, let alone the drive and the appointment. Overall I feel like it went great and I'm so thankful for the people placed in our lives. Every time Dr. K sees Mabel she tears up and loves on her like she's her very own. They are tender and gentle with her in a way that I cherish. They trust me with hard information and I am so grateful.
I still can't believe that this is me living this life. I can't believe that this is my little girl who is very sick and will only get sicker. It's so easy to forget when she smiles that one of a kind smile. It's a tricky balance in my heart and mind as I trudge through days like today. Hoping to sleep off the sadness and wake with a refreshing tomorrow.