This morning I woke Mabel up early and we headed out into the cold for an appointment with her primary doctor. This morning's appointment was for me to discuss hospice with him. Mabel's neurologist, Dr. K, who has been with us since Mabel was about 6 months old and first diagnosed her with a seizure disorder, agreed with me last month when I told her that things were looking different with Mabel. She highly suggested moving forward with pediatric home care, otherwise known as hospice.
Here's the thing:
To many of you this sounds so scary and so sad. But in the world of rare, neurological diseases, this is very common. In fact, in most cases where children are diagnosed with NCL, they are put on hospice day one of that diagnosis. We didn't do that because I wanted time to breathe. I needed time to research, come to acceptance of this disease and the inevitable prognosis that my baby truly is not going to live.
It has been 6 months, almost to the day, since Mabel was diagnosed with an unspecified type of Batten Disease and because we are seeing some changes in her, we decided it was now time to take that next step.
This morning I sat in an office where I inevitably had to educate our pediatrician about Mabel, her disease and what this means for her future. The harsh and frustrating truth is that most pediatricians have never seen Batten disease before and most will never have to in their entire career.
In the beginning of the appointment, while explaining to him that we are seeing some drastic respiratory changes in Mabel, (tongue turning blue, gasping for breath, choking on her own spit, veins turning abnormal colors, etc) I had to divert away from doing more tests to see why these things were happening. I listened closely as I realized that in our doctor's realm of thinking, he is still wanting a 'fix.'
I began to calmly and yet assertively explain to him why we are at the place of wanting hospice care for Mabel. I have taken such good care of our girl up until now and I want to see this through until I have nothing left to give. There has not been a day when I have felt that she has truly suffered. She has a terrible disease, yes. It causes her body to jerk and her brain to seize constantly, yes. She can't sit, she can't eat, she can't roll over and sometimes she cries for hours at a time. But I have dedicated every minute of my every day for the last two years to seeking the best medicines, and the best treatments. I have ravaged the world around me to give her the very best care that we can offer her. I have sought doctor after doctor; specialist after specialist. Every test that could be ran has been. Every therapy offered was given. We have done everything in our human power to love Mabel the way that she deserves to be loved and taken care of and in that, I don't believe our girl has ever been a true victim to suffering.
And while I can provide her the kind of care that would mean comfort and the kind of care that would mean peace, that is what I am going to do. Because I am not about to let this disease come in and take from her the amount of care that I have worked so hard to provide. I am not naive and I will not go forward as this disease progresses and behave as if I don't have the information or the resources to continue to make Mabel's life easier. We do have those things and I am ready to utilize them. For her.
There are several parents of children who truly do fight this fight until they have no more left to give. They fight it with medical intervention after medical intervention. They choose hospital stays and technology and that is ok. That is their choice and they know their child.
And I know mine.
I know her better than anyone. She is interlocked with me; body, mind and soul. And what I know about my girl is that she is fragile. Rather than tear apart her body trying to save her from circumstances that will inevitably rise again, Daniel and I have chosen to help her live with a level of comfort that we are certain is the greatest gift we could give her. It is the best form of parenting that we have to offer for Mabel. It doesn't look the same as it looks for other children; but then no part of this has. It is a decision that we have made in prayer and we have great peace in it.
Children with neurological diseases can be in the hospice program for a substantial amount of time. This is not the kind of end-of-life care that you think about when dealing with an elderly person or someone dying of a terminal illness that happens with a predictable pattern.
Because these diseases can progress quickly and there is an unknown way in which things will begin to happen in Mabel's body, she qualifies for home care. This means that a nurse will begin seeing her twice a week. They will take her stats and essentially be a second set of eyes for me. They will help monitor her medicines and provide relief in instances when she can't stop seizing or can't stop crying. We feel at ease knowing that we will grow comfortable with the people involved in Mabel's care and that they will begin to know her personally. This is important to us at this point because we are also thinking about Nora and Braden. Keeping in mind that we want to protect them in the best ways that we can, we believe this will provide the least amount of trauma and confusion for them.
The appointment this morning was hard for me. I felt empathy knowing that it was hard for Mabel's pediatrician. He hasn't ever been involved in a hospice case before and he said that he's only ever experienced a child dying once-ten years ago, from cystic fibrosis at a teaching hospital. I know that this is all difficult to grasp because when you look at Mabel she is incredibly beautiful and she appears 'good.' No one can wrap their mind around it. In fact, many days I have to walk myself back through it all, trying to convince myself that this truly is happening. She truly does have Batten Disease; the early form. And she may not live long.
I feel like I write a lot here about death now.
It's strange because I don't think about it or talk about it a lot otherwise. Conversations arise, sure, but day to day it is not my focus. My focus is on caring for Mabel well. My focus is on making the hard decisions that are required in order to do that. So sometimes that ends up with a lot of thoughts on the screen that are difficult and heavy. The hard moments and the sad talks still throw me for a loop but over all, it is getting much easier to get through each of these tough situations.
At the end of our appointment today, Dr. E said that I looked like I was doing well. I answered simply with "At some point you learn that you have no other choice. I can fight this as long as I want to. But I can't change it and it won't do me any good. The good is that I've accepted it and can now move forward to giving Mabel the very best life that I can give her like I have been doing. I just want to be able to do that for her."
She deserves that and so much more.
My sweet, sweet girl.
I came upon your blog quite randomly. My heart aches for you and your family. You are such a strong person. I cannot begin to imagine the pain you feel for your child. I'm sure at times it is unbearable. I hope you find comfort in the fact that many people are praying for your little girl, as well as your entire family. God always has a plan which sometimes we don't agree with, but we must put our trust in Him. God Bless you all!
What a beautiful perspective…will continue praying for your family and for Him to give you all-encompassing peace.
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