Anna's new reality

February was a really tough month for Anna.  She was in almost constant pain because of her elevated intracranial pressures.  She was nauseous because of her high ICP, and also because of some of the pain medications.  Until her treatment started she was slowly loosing control of her muscles because the cancer and tumors all along her spine were blocking the messages sent from her brain to her body.  She was losing weight almost continuously (she weighs about 8 lbs. less than she did at Christmas).  She was on a ventilator for 7 days.  And she had three brain surgeries; one major and the other two "relatively" minor.

Because of all of this, Anna has been bedridden for almost 6 weeks.  At the end of February, her body was like that of a newborn's.  She did not even have control enough of her head to turn it to a side.

I want to share this because I want to be clear about what Anna can and cannot do.  So far, we have tried to be as positive as we can be, especially with Anna.  We like to focus more on what she can do, instead of what she cannot do.  However, I think that in doing so, we are not giving a clear picture of who Anna is right now.

Right now Anna looks like a really sick cancer patient.  She is underweight and has lost her hair.  She is physically weak.  She does not have much large muscle control, nor fine motor skills.  Her face is often expressionless because she has not regained much control of those muscles yet.  Her speech is slurred and quiet (unless she is angry and is yelling; then it's really slurred, but loud).

However, she is making improvements.  Two and a half weeks ago, two (or sometimes even) three adults were needed to transfer her into her wheelchair.  One person held her body; one person supported her head; and one person watched all of the tubes and cords connected to her.  Now Matt and I can get her into and out of her wheelchair independently.

When my mom was working as a speech therapist, she would often give families a key piece of advice.  She would tell them that every day their child would learn, change, and grow.  That is true for all kids, but it's especially true for Anna.

Dr. Iskandar also uses the following illustration.  "How do you eat an elephant?  One bite at a time."

After a month of backsliding, Anna is slowly but surely "eating the elephant."  But it is going to take a long, long time and I envision that her skills will return in a similar order to those of an infant ... head control, rolling over, sitting up, and eventually eating, writing, feeding herself, etc.

The other day she told me that she justed wanted to run with her friends.  I told her that we would work towards running.  It's not going to happen today, or tomorrow, but we can work towards that.  I can't promise her that she will be able to run again because we don't honestly know if she will.

Until the time when Anna has reached her full potential, she may have some tough experiences with peers and even adults.  For those who don't know her story and haven't seen what she had gone through, she just may look like a kid in a wheelchair who isn't able to do much, although her brain is as sharp as it ever was.  I hope that we are able to give her the love and strength to get through those times.

The Lutheran Hour Ministries devotion for today addressed some of these issues; it was a good one for me to read this morning.  I will close with its prayer which I pray more for Anna than for me.

Dear Lord, I give thanks that no matter what others may say about me, I have peace at the center. May I always give thanks for the Savior who has made that peace more than a possibility. In His Name I rejoice. Amen.