Tuesday, August 26, 2014


With the big kids starting school this week, I found myself at the kitchen table, laptop open and writing the usual "about our family" emails that I have sent to teachers, counselors, or basically anyone who enters their lives who may just need to understand Mabel and our situation better. 
I decided to do this when they first began school last year because I think it's essential that the people who see them on a daily basis understand their emotions better based on what could be happening at home.  Last year I enrolled the kids in school just 6 months after their dad left and after being homeschooled each year prior.  Mabel had just received a diagnosis one year earlier so there was a lot of information that contributed (and still contributes) to how my children behave, and respond on any given day. 
Most people would look at our family and understand without question that my children have a unique situation.  They have a sister at home on hospice with a terminal brain disease of an unknown gene.  All that we 'should' know about it's progression has gone out the window because we cannot find within her, the missing link that shows us what gene is responsible for batten disease in her body.  So my kids go to school every single day with the unspoken worry that they could, at any time, lose their baby sister.  My kids also carry several other heavy, much more superficial burdens on their tiny little shoulders.  It's incredibly sad and weighs so heavy on me every day that I don't think I could fully explain it. 
As I was typing my very personal, very detailed emails to the kids' new teachers, emotions sprung up in me that I have buried deep for a very long time.  Daily I am with Mabel.  Daily I take care of her basic needs like feeding her, changing her, cleaning off her spit, pulling her hands out of her mouth a trillion times so she doesn't bite through her skin, bathing her, giving meds, walking her, rocking her, brushing her hair and teeth, etc.  All of the caregiving comes second to the most important part of my days with her which is holding her, smelling her, talking to her, dancing with her, smiling at her and loving her. 
I am with her at all times. 
And so I have come to the conclusion that I don't always see the changes that she is making.  And if I do see them, I adapt to those changes so quickly and so efficiently now that I almost don't take the time to feel what those changes may mean for my little girl. 
But as I was writing things like "she cannot sit on her own, she is blind, she does not eat because she cannot swallow well without choking and even if she could she never learned to chew, she seizes almost constantly, her body moves without rest, she requires care at all times, her brain is shrinking and essentially she is a 4 year old infant.  Oh yeah, and she could die at any time..."
As I'm writing these things, it hits me once again; my friend grief.
knock knock knocking.
'This is my baby I'm writing about.  This is my child.  All of these things that I haven't gotten so good at explaining and even better at living with...they are affecting her.  My Mabel.
My baby.'
It's devastating.
And it's no less devastating just because I have learned to deal with how devastating it is.  It's heartbreaking, maddening, frustrating, sad, disgusting, heart wrenching, throw up at any time devastating. 
And yet here it is.
Here she is.
The truth. 
She is [still] actively dying. 
Her beauty is unmatched.  Her soul is perfect.  Her love is pure.
She smiles and giggles.  She responds to my voice.  She loves to be tickled on her right rib by my nose.  She loves baths and water of any kind, though Michigan water was cold and she made it clear that she didn't appreciate her toes being in it.  She loves her brother's noises and when her sister carries her.  She is our everything. 
Our everything. 
I can't explain it but grief can.
Grief can explain it all so very well.  He just creeps in and makes himself known as he has done from the very beginning.  I said hello and I opened the door. 
It was long over due for a visit, that's for sure. 
I'm so happy and life is so full and so good.  Every day I cannot believe how beautiful it has turned out to be.  Though I'm uncertain of my future days, aren't we all?  I have learned to embrace this unknown and very difficult walk with an ease.  Sometimes that makes me feel guilty and other times, like in the dark kitchen a few nights ago, I realize that it just makes me human.  God gave us a great ability to cope, survive and move forward.  But He also provided a comforter, the Holy Spirit, and in my case a visitor, Grief. 
It's all ok.  It's just all a little sad. 
She is still very much alive but she is still very very sick.  I forget sometimes and that's ok but this week I remembered, felt disgusting amounts of sadness about it and now I'm going to try and say goodbye to grief and sadness so that I can continue to live with her in total and full peace. 
For the teachers of my children and all the people in their lives who love them and are helping me keep them emotionally well, I love you and am grateful for you.  Truly. 
I cannot do this alone, but with your help I feel confident that they will be ok.  And that's a really good feeling...

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