Tuesday, March 25, 2014

End of winter sickness.

Over the last several days, Mabel has gone back into a very severe cry, one that shows no signs of stopping.  Accompanied with straight leg stiffening and even some vomiting, it has been a really scary time. 

 On Saturday I ended up in bed right beside her, so nauseated and sick that I could barely move.  She was kicking and flailing beside me, screaming.  My parents took the bigger kids, thank goodness but then, as usual, it was just she and I.  I cried for a few minutes, thinking about how lonely and sad I felt.  But then I pulled it together a little and let myself feel very angry. 
Angry at batten disease.  Angry at our circumstances.  Angry at my own sickness and hers.  Angry that everyone else's lives get to move forward  because even when mine is doing so, it really isn't.  There will always be a standstill.  A stopping point.  A dig down deep in my gut kind of grief.  The knowing that my choices on how I will forever feel are this way or worse is overwhelming and utterly impossible to comprehend at times. 

Later that night I finally got up enough energy or determination to get in the rocking chair.  After her night meds Mabel was lethargic and restful.  I was so thankful.  With her body draped across mine, both limp and tired, we rocked in sync with one another.  I felt her relax.  I did the same. 
And silently I prayed that, even if not in this exact moment, God would at least take her in a moment like the one we were sharing right then. 
Calm.  Alone.  Peaceful.  Quiet.  Restful. 

I'm not sure how to even explain how thoughts like these become normal to a parent.  Sometimes I can't even believe that they are thoughts that I am capable of having.  Yet I do.  Often. 
There are children in our batten disease community who are dying every week.  It is all around me, consuming me at times.  In fact, earlier this week a beautiful little boy named Zeke passed away.
And for a split second; in a single instant of time, I actually felt jealous.
 
Not that he had died.  Not that his parents were feeling the deepest, darkest, most utterly devastating pain that they may ever feel.
But that He was free of pain.  Free of jerking, crying, seizing, puking.  And his mommy was free of worry.  Free of unending wonder of when this final moment would happen.  Free of the constant internal battle that only mommies like she and I can understand. 
 
Zeke had 3 siblings.  A beautiful mom and a well spoken father. 
To read more about their journey and Zeke's life please visit:

This week I was reminded that this disease is unpredictable.  For months now, Mabel has been content and happy.  The crying had stopped and her body was calming.  It was a sweet reprieve from the hell that we endured for an entire year before.  But then, with no warning, her body has come undone again.  And as it has, so have I.
 
At times I have been made to feel like all I do is talk about Mabel's disease or her inevitable death.  I disagree wholeheartedly, although I do write and speak about it often because I am coping. 
Grief and life coexist in my world so it is a constant battle of choosing joy in the midst of unknown and impending heartache but grieving the days that are being stolen from my girl through suffering. 
 
This earth cannot provide peace for Mabel.  Not medicine.  Not any touch or comfort that I can bring her.  Not singing or music.  Not her siblings.   Not anything. 
Comfort for Mabel and healing for Mabel will come in a beautiful, eternal place.  A place where I sincerely believe she will be made whole and well.  That thought along provides a hope for me that surpasses any circumstance or trial here.

I have found joy here.  I have found peace here.  I have found love here.
In the middle of very fragile and stressful days there are moments of beauty and contentment that are so precious to me.  There is laughter and dancing and a whole lot of happy. 
 
But my little girl is still dying. 
She is changing and every day is very much a mystery.  It is so hard to live inside of this bubble, knowing those things, and watching the world spin on around me. 
But as always, I'm trying hard and I'm asking the Lord to carry me through moments when I feel very hurt and conflicted by this earthly life.  It is, after all, a great and wonderful gift.  Even in the middle of such unfair moments, I feel Him and I know that it is just how it is supposed to be. 
There is purpose here.
If you want to pray specifically for Mabel:
Pray that her body would relax. 
Pray that the doctors would feel comfortable increasing the meds that I think will help.
Pray that she will stop crying. (for the love of all that is Holy and true.)
And Pray that she would rest.
 
As always, so thankful for your kind words of encouragement.  You carry me.

5 comments:

Tracy said...

I'm so sorry. You are such a strong woman! I will pray for you and your family everyday. I'll pray for Our Lord to guide you, protect you and give you peace, calm and comfort.

Anne Caughey said...

I understand.

Cindy Griggs said...

I found your blog a few months back. I had never heard of Batten's disease despite being in medicine for 10 years. I just want you to know that I pray for you & your family everyday. I pray for your strength, endurance &, health. I pray that love & peace carry you through each day as you walk a road that no parent should have to walk. I pray for these things for your children also, every day & without ceasing.
You are an awesome mom!
I hope today is a better day. Also, I live in NC but is there anything I can do to help you in someway. My e-mail is cgriggs@nc.rr.com

Jokima said...

Your writing is so poignant and moving. I cannot read your entries without weeping. I too have a child that has an undiagnosed genetic disorder resulting in epilepsy, tracheotomy, lack of muscle tone/head control, etc. I love that you are able to say exactly how you are feeling, express all of the very raw emotions I cannot allow myself to vocalize. Thank you. God bless you and your family.

Jokima said...

Your writing is so poignant and moving. I cannot read your entries without weeping. I too have a child that has an undiagnosed genetic disorder resulting in epilepsy, tracheotomy, lack of muscle tone/head control, etc. I love that you are able to say exactly how you are feeling, express all of the very raw emotions I cannot allow myself to vocalize. Thank you. God bless you and your family.