Wednesday, October 5, 2011

update. day 2 [noon]

From our hospital window I can see a gorgeous, full orange and red tree.  It's the perfect symbol of this perfect season.  Just like everything else, I can't help but look at it and wonder if my memories will now be changed and perpetually different.  Will I forever remember this beautiful autumn day and the way that this room looked, felt and smelled? 

Mabel is finally resting well.  One of her feet is hanging out from under her blanket and it is finally still; not trembling from seizures like it has been consistently doing for what feels like days now.  Her color looks better.  Yesterday she was a pekid grey and her hands and feet were blue.  As her fever got higher, her color became more strange.  It was odd and terrifying.

You know what else is scary?  It's that we are never 'out of the woods' with a child like Mabel.  She may get better in one way, but suffer in another.  For instance, I'm not sure that she has been able to see me at all in the last 24 hours.  Her vision is absent and scattered.  She seems scared and panicked.
In vision therapy this week, we talked about how she has resistance to someone leading her hand to do something.  I think it's a good thing--it shows that she knows well enough to pull away.  The therapist agreed, noting that if someone can't see they will obviously be reluctant to let you put their hand inside of an object or move it at all. 
Today when the nurse touched her gently, she cried out in a shrill, awful cry.  She didn't see her and I felt like she was scared.  That's the first time I've really thought she was...

What is also scary and frustrating is the lack of diagnosis in a situation like this.  Obviously we have high concerns that she has a mitochondrial disease, so in many ways I'm doing my best to make sure she is treated as such.  Her immune system is weak and she is exhausted just having to open her eyes.  And we now know that the 2 weeks following an infection or bout of sickness are the most critical times for a mito child.  This means that when we go home, we will be extremely and overly cautious with her care. 

I was reminded once again how isolating this journey is.  It's not just the quiet hospital room or the incredibly deep knowledge of medicine that I now have. 
It's the quest itself.  The journey that only Mabel and I are on.  The quest to figure out what is going on and why.  And then how to help her. 

My life changes drastically with every medicine change, every specialist appointment, every phone call, every therapy session and every little sniffle or sneeze.  It's all consuming for me and yet I look around and life is still moving on about me.
It's a strange thing to have to embrace the real world while knowing that it is no longer the norm for me.  My normal has changed and some people have entered into that realm with me while others have not been able to merge their lives with my new one.  It's ok and I understand...
but it's hard.  And it makes me sad.  And lonely.

But I do want to acknowledge that people are wonderful and amazing and so kind.  I am incredibly blessed and thankful for the number of people who call, text, come by or just gently look my way.  Each one of you is such a special gift to my heart.  You will never know how much I have thanked God for you in this process.  Your friendship is unique and powerful to me and honestly...
it's pulling me through.
So thank you! 
You all know who you are.  You are my heroes right now and I hope you feel that.

I just got a phone call saying that Mabel's G-tube surgery will be postponed (not due to the hospital stay but scheduling conflicts.)  In so many ways, this admission has confirmed our need for the feeding tube.  We are trusting the Lord's timing to be best and knowing that He has it all planned out according to His will.

Speaking of His will--
No matter how conflicting some of this process has been for me I am absolutely amazed at how God is working through our little girl.  It's an incredible thing to be standing over her, watching the nurses try to place a simple catheter and knowing that whatever we find out--God brought us to this exact moment in time to learn it.  He has me where He wants me, in every perfect circumstance to reveal Himself in this situation.  I am merely being used by Him to get answers for Mabel.  It feels long and drawn out some days but in that moment in the little peds lab, I thanked the Lord once again for His divine timing and perfect plan.
I also praise the Lord that Mabel calms when we sing to her His name.  There is a peace with that name:  Jesus.
Jesus.  Jesus. honey on my lips; it is a sweet and succulent name.
Antibiotics have started.  She is resting.  I am quiet.  God is near.
So for now, all is well. 


Sarah said...

Just thinking about you and sweet Mabel. I'll be saying some prayers for you and hoping for Mabel to feel better soon. *Hugs*

casi-j said...

Praying for ur family and Mabel.

Regina said...

contiued prayers for Mabel and your family> Always in our thoughts,

Jessica Kramasz said...

I'm so sorry, Ramee. I'm praying for all of you.

Reese said...

Ramee, you are a rock and I am praying for you, your sweet girl, and her team of medical people. Praying your peace continues and you feel Him holding you.


Amy said...

Praying for dear Mabel. Praying for you Ramee & Daniel. Stay strong in the Lord. Get well & healing prayer for Mabel.

brandy said...

Praying and thinking about your sweet family Ramee! I didn't realize what was going on until just now! I haven't gotten a chance to catch up on your blog!!! Praying for you all!!!

Anonymous said...

He is the ultimate healer, that sweet, precious name, JESUS. Jesus, be with my friend now, my sister in Christ. Wrap your arms around her family, hold them tightly woven together like you've held onto each of us that have went through a hospital stay.
So many questions left unanswered...let them find the answers that You God would want them to have...give their medical team SUPERNATURAL wisdom and healing power to help Mabel and to piece together each piece of the puzzle.
We love you oh Lord, we glorify Your name, even now.