Tuesday, February 23, 2010

"Create a New Normal"

"To create a new normal is really to have faith that everything is in the Lord's hands and it will all work out. He loves us and will take care of us as we adapt to whatever comes our way." ~Julie Young

I was sitting on the couch holding Talitha while her older sister Malorie played a melody on the piano. As sometimes happens, a flood of emotions washed over me. The picture of Christ emerging from the tomb caught my eye and further deepened my feelings.

Everything is somehow ok when Christ is in the picture.

I have to confess that Talitha's pathetic little cries when she is in pain or is deeply uncomfortable just break my heart. They are usually much quieter cries than they used to be and a higher, almost raspy pitch. She's just so worn out. (And yet she still finds a smile or two for the camera.)

She used to love bath time and now it's just not the same. Her chest catheter with it's accompanying bandaging must be kept out of the water and so we have "aqua guard" sheilds with their own adhesive to cover the gear as you see in the picture above. Ordinary things of life like eating, drinking, bathing, dressing, brushing, and sleeping aren't so ordinary anymore. "Create a new normal" seems to apply most to the basics of life.

Trusting in the Lord is one of those things that can seem so hard until you try doing it without Him.
Audrey took Talitha to the PCMC this morning to receive a platelet transfusion. Her count was just too dangerously low. (She woke up with a dark red spot in the white of her left eye. The nurse indicated that this was a result of the low platelets; just the normal pressure in the eyes from crying can rupture one or more tiny blood vessels and without enough platelets, excessive bleeding occurs.)

The daily blood draw showed continuing declines in all the counts. Knowing that she is about to "bottom out", they now want to do daily blood draws at the PCMC so that they can know exactly when the exponential jump in blood counts occur and can take her immediately to the procedure room for the stem cell harvesting. So, for the next several days, Audrey will be shuttling Talitha to Salt Lake for blood draws that start at 7:30am.

Pretty much every week requires adjustments and a "new normal". But Audrey wants to know "What is normal, REALLY? And does anyone ever reach it?"

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