Uncertain territory

It's troubling when the one thing that used to save you, free you even, is now the last thing that you want to do.  Because truly how can one write the painful truth of the every day when it's so heavy that the words fall short?  They are far too flat. Even the most exquisite and descriptive vocabulary couldn't explain the pain, fear, sadness and downright cruelty of what happens in the hours that make up our days.  I no longer need to try to understand it and I'm very close to not being able to fully explain it.  The details are all a blur.

 

She woke from the long sleep with one small smile.  Forced, but there.

And then she moved swiftly into 6 days of the most wretched, gut turning cry you have ever heard.  It seemed as if she was in pain, but typically she doesn't feel or respond to pain. Long ago I had to stop driving myself mad trying to figure out what was wrong and just treat the crying.  But nothing 'treats' the crying.  Nothing in the world stops this child from crying. 
Her brain causes the cry. 

And her brain and only her brain stops the cry. 

We did notice that she had thrush so we treated it.  A little numbing of the mouth and some good meds seemed to take it away after about 2 days.  But the crying went on.

I, too, cried every single one of those days. 

I have never seen her body so stiff or rigid.  I have never seen her muscles be so flexed, seem so strong.  And yet I have to look at her and reckon that on the other hand, I have never seen her look quite so weak.  Quite so very different and weak. 

Not long after she stopped taking her bottle, her swallowing ability decreased. The amount of saliva in her mouth has increased because she isn't able to adequately swallow it all.  There's a lot of drool and a lot of choking, all of which is new and scary.

 

Last week sometime it occurred to me that she has also fully stopped giving me any hunger cues.  So now I am feeding her strictly by schedule, along with reading what her body needs.  I'm keeping close watch on her gastric residuals as to not continue feeding her if at any time her stomach stops processing food. 

For several weeks my stomach has been in a 'knowing knot.' 

I have watched the physical signs of her decline and I have noted each of them closely in my heart.  I have yet to fully write it all.  I have yet to fully express the depth of it all or the immense and utter turmoil it causes my soul. 

 

All I know is that I do not want my baby to suffer. 

And this disease causes nothing but suffering.

 

Mabel herself brings so much joy and is purely peace.  But what I see when I look into her 6 day screaming eyes is a wicked disease running wild throughout her body. 

It infuriates me and there are times I think I might physically vomit at the very knowing.

 

But the knowing is what keeps me going.  The knowing of the disease, the extensive and detailed knowledge of this thing inside of her is what pushes me forward. 

 

I know what it is doing in her because I am an expert on this disease and Mabel.  I watch her breathe so frequently that I believe if she stopped and I was nowhere near, my heart would beat out differently in that moment. 

But I am near.  I am always near, almost breathing the very breath that she is breathing, I am so close.

  I know when she has an infection because I know the exact smell of every inch and every part of this little girl's body.  I know when her cry means that she has to poop because I am the one who assists her in doing so, each and every single time.  I know when she has thrush because I know the typical color of her tongue.  When something is abnormal, I am so attentive to this little girl that I will know it. 

 

And I will catch it because where batten disease rages in the realm of uncomfortable, I am in the business of making my baby comfortable.  Where it acts, I counteract.

 

I am not about earthly healing for Mabel.  I am not about fixing her.  I am even beyond treating the symptoms that are so untreatable. 

But I am about making sure that while there is breath in her lungs, she will feel rest and comfort and peace.  She will lay in my arms and look up at me with eyes that cannot see and know that she is loved beyond a doubt. 

I'm at the most helpless part of the journey. 

I can't articulate whether or not I think she's dying and yet I cannot fully say that I don't think so.  I just know that we have all noticed the change and we all feel a little uneasy, slightly unsteady with each day.  It all feels like unknown territory.

 

I am not scared or sad about the prospect of Mabel's death. 

It is everything leading up to her dying that is terrifying.  All of this that we're already living and walking through is what is most horrible about this disease. 

 

It takes away the abilities that she once had and by doing so it reminds you that it is also slowly taking her.  It reminds you that this brain inside of her is wasting away while she sleeps and is stealing from her everything that keeps her alive. 

 

At least scientifically and medically speaking that is what's happening.

But every day we depend on Love and we are reminded that God created us all perfectly in His image.  That He is the creator.  He alone numbers not only the hairs on our heads but also the days in our lives.  I look at my beautiful girl sleeping and I don't see the thief, batten disease.  I see the giver of life, Jesus.  I know that she is far too perfect for this world and that He has a plan to heal her fully in eternity.  So I just hold her, and in the quiet pray for mercy. 

Thankful for every day-good and bad, that she is here. 

She is our greatest gift. 

Being her mom is the most humbling and I would gladly do it for 100 lifetimes, if He would so choose to let me. 

I am so grateful.