I can't tell you the number of times I tried to write this post and the words just weren't there. I still don't know if the right words will come even now, but I feel like I can't put this off any longer.
About 2 weeks ago, we received some difficult news. Camille's 24-hour EEG came back normal (meaning no seizures), but her MRI was abnormal. The neurologist called to tell us that her new MRI showed that things in Camille's brain were changing, or progressing. Her brain showed signs of cerebral atrophy (it is getting smaller instead of bigger) and dysmyelination (the myelin, or coating of the nerves, in her brain is not forming and functioning properly). He said that this indicates several things to him: one, it appears that she does have something progressive, which will get worse over time; two, the atrophy and dysmyelination are usually indicative of a leukodystrophy.
Leukodystrophies are just plain awful disorders. They are neurodegenerative, and associated with extremely short life expectancies. Our sweet Camille continues to be unique--the neurologist said that he did not recognize the pattern of her dysmyelination, which means he could not pinpoint which specific disorder she might have. Therefore, he and genetics consulted, and decided to do a Lysosomal Storage Panel, which is essentially one test that looks at many different disorders at one time. We had the blood drawn for the panel last week, and should hear something by the end of this month.
I feel such a strange combination of emotions right now. In one sense, I am relieved to know something and to be very close to finally knowing what is going on with our little girl. Then I battle the guilt that comes along with that sense of relief. Why should anything about this news be a relief? It's horrible and terrible and heartbreaking. I once said that not knowing was worse than anything, but is it worse than this? Wouldn't it be better to not know this?
I feel such a profound sadness that I can't even begin to describe. It makes my chest hurt, and it makes me feel like there are permanent tears stuck in my eyes, ready to overflow at any moment. It makes me question my whole belief system, however cliche that might be. It makes me wonder how I am going to watch my child battle a progressive disease, how I am going to watch her deteriorate, and still keep my faith and sanity.
We ultimately do not know anything definitive at this point, and I am holding onto that. And what we do know remains true. We know we love Camille. And we know we love a God of goodness and mercy. Whatever we find out, whatever happens from this point on, this will not change.
Thank you for your continued prayers and support.
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Maggie, I'm so sorry you've gotten such news. I'm always so impressed with how strong a person you are each time I read your updates about Camille. She's such a beautiful little lady and you're so lucky to be blessed with her, however things turn out. I'm praying for you all.
ReplyDelete-Heather W.
Oh Maggie, my heart aches for you. I too have a child with some very unlikely symptoms. We have had many doctors say taht the mystery of Sam continues. To all he appears healthy to look at, but then he may have a hemorrhage inside, or start pooping blood. The latest is that he has stopped breathing on us and turned blue.
ReplyDeleteAll this to say that I am so so sorry for all you are going through. As a mom we just want to protect our children and see them grow and thrive and when we are incapable of that it is devastating. Know that I will be thinking of you and praying for you often.
~Danielle
I was glad to see you and Henry at Luke's birthday party.
ReplyDeleteI am very sorry to hear of the news about Camille. Just wanted to let you know that I will continue to pray for Camille's health, and that you, Jason and Henry will be able to cope with this. Keep up your faith.
Mary (Sarah's aunt)
maggie, i just wanted to say that it was so lovely to meet you and jason while we were in waco, i was so sorry we missed you the night you came by with camille. i've kept up with camille through your blog ever since sarah linked to it from hers, and i am constantly amazed at the honesty and grace you demonstrate in your writing. i can only imagine how difficult it is to write some of these things about your precious baby girl, but she is in my prayers, as are you, jason and henry.
ReplyDeleteThis is one of those times when words seems so inadequate. My heart is heavy for you and I pray for you whenever I think of you - which seems to be more and more often.
ReplyDeleteJill C
Dear Maggie and Jason,
ReplyDeleteI don't have many words of comfort to share, but your mom used to say that whatever you say to someone at a time of overwhelming saddness and uncertainty, as long as it comes from the heart, will always be blessed. So, I say to you, God will carry all of you. It is the pits, it hurts, it breaks your heart, but God's grace is sufficient. I know that at times you don't particularly want to be the family who God uses as a living testimony, but we don't always get to choose. So, at times when you are feeling terrible, know that we are carrying you in prayer. At the times you draw close to God, hold on, because His comfort is amazing. When we lost James and Jessa, I didn't always want to know that people were watching our strength and how we handled grief. But now, I am thankful that through our grief and our testimony, someone grew closer to the Lord. I love you Jason and Maggie. I am thankful that through your mom, he brought our paths together, too. Love, Sandy
Dear Maggie and Jason,
ReplyDeleteI don't have many words of comfort to share, but your mom used to say that whatever you say to someone at a time of overwhelming saddness and uncertainty, as long as it comes from the heart, will always be blessed. So, I say to you, God will carry all of you. It is the pits, it hurts, it breaks your heart, but God's grace is sufficient. I know that at times you don't particularly want to be the family who God uses as a living testimony, but we don't always get to choose. So, at times when you are feeling terrible, know that we are carrying you in prayer. At the times you draw close to God, hold on, because His comfort is amazing. When we lost James and Jessa, I didn't always want to know that people were watching our strength and how we handled grief. But now, I am thankful that through our grief and our testimony, someone grew closer to the Lord. I love you Jason and Maggie. I am thankful that through your mom, he brought our paths together, too. Love, Sandy
Dear Maggie and Jason,
ReplyDeleteI don't have many words of comfort to share, but your mom used to say that whatever you say to someone at a time of overwhelming saddness and uncertainty, as long as it comes from the heart, will always be blessed. So, I say to you, God will carry all of you. It is the pits, it hurts, it breaks your heart, but God's grace is sufficient. I know that at times you don't particularly want to be the family who God uses as a living testimony, but we don't always get to choose. So, at times when you are feeling terrible, know that we are carrying you in prayer. At the times you draw close to God, hold on, because His comfort is amazing. When we lost James and Jessa, I didn't always want to know that people were watching our strength and how we handled grief. But now, I am thankful that through our grief and our testimony, someone grew closer to the Lord. I love you Jason and Maggie. I am thankful that through your mom, he brought our paths together, too. Love, Sandy