Thursday, August 27, 2015

Don't Want To Miss A Thing

Just like that, we are in a place of uncertainty again. Our clinic visit today revealed some abnormal labs. We are back on this roller coaster of emotions, at the edge of our seats, desperately wanting to get off safely, all five of us together. 

Ava's CBC showed that her red blood cells and platelets have dropped and there were also the presence of myelocytes and metamyelocytes which could mean anything from viral infection to relapse. It has been an emotional day as it often is when speaking of relapse. Ava's blood is currently on the way to Seattle to check flow cytometry which can give us a clearer picture of whether or not she has relapsed. As a result of this unexpected find, Ava will not have her Hickman line removed after all.

I've been such an insomniac lately. Maybe it was the horrendous bout of sleep training we had just gone through with Jude or maybe it was my restless mind filled with too many thoughts. Whatever the case, I was playing with my sweet girls the other day and I fell asleep in the middle of our game. I felt so profoundly tired that I could not help but close my eyes. I heard them playing around me and willed my eyes to open. But the next thing I knew, it was 4:30 in the evening and I had slept away our time together.

The Aerosmith song, "Don't Want To Miss A Thing" was always a little cheesy to me but now that I have my Loves, I can see its charm.

"Don't want to close my eyes
I don't want to fall asleep
'Cause I'd miss you baby
And I don't want to miss a thing
'Cause even when I dream of you
The sweetest dream will never do
I'd still miss you baby
And I don't want to miss a thing"

I would post the whole song because it is relevant in every way as I think about my girls, Ava and Gwen, but I think you get the picture. I don't want to miss one thing. I want to see them grow and flourish. I want to be the one that has to wait in Heaven for them to finish their purpose on earth. This is my desperate prayer.

Life is so busy, so many things to accomplish in any given day so we are unspeakably thankful for everyone who comes before the Lord on our behalf for the life of our girl, Ava. We have known love through these times by your kindness and prayers. Will you join me in the throne room for all those who are suffering?

"Here my cry, Oh God. Listen to my prayer. I call to you from the end of the earth when my heart is weak. Lead me to the Rock that is higher than I." Psalm 61:1-2

Hard at work on her legos. The apple doesn't fall too far from the tree-I've been known to stick out my tongue when concentrating

He has begun to roll. It is the beginning of the end of any peace and sanctity I have left

The crew at clinic

A day that will long be remembered

Famiy date night complete with movie and Chipotle

Right before her CT scan

Trying to be brave. Some tears were shed but even heroes cry

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