Perfect World

Every time I walk down the main corridor of Cincinnati Children’s I feel a heaviness cover me. I am saturated in darkness and anxiety. It is probably because I am instantly transported to the hundreds of nights we spent in that hospital and therefore the thousands of trips I made up and down that corridor. Trips to grab dinner. To grab coffee. To grab air.

Yesterday was no different as I walked down the hall to our clinic appointment. Izzy chatted a million miles a minute while I had to focus intently to just keep breathing. ‘Blood Disease and Cancer Institute,’ the sign on the side of the clinic read. Strangely, as soon as I saw the words, a soothing familiarity washed over me.

Because of a drug Izzy is still on from her Maintenance Cycle we are still monitoring her renal function carefully. She should have finished it months ago but because of her history of kidney problems we introduced it slowly. Today we will begin her final round of this drug. Some victories are big and some victories are small. But a victory is still a victory.

She also received her starter dose of vaccinations for the second, I guess third, time. Because stem cell transplant erases all cell memory, per say, patients have to be completely re-vaccinated. And yes, I am one of those that stands firmly in the vaccine camp. So if you were thinking about sending me an article about them later, please don’t. But I digress. We tried this initial dose around the first of the year, just one year after her transplant but unfortunately her body did not build the antibodies to protect her like we hoped. So we’ll try again and go back in a month to retest.

Also, in less than a month, it will be time for her quarterly work up (scans), some other appointments (cardiology and psychiatry) and another esophageal dilitation. But God willing, after the first week of July we should be ready to start going to Cincinnati only every three months. So it would appear that this summer could turn out to be quite unlike the last two.

Izzy finished Kindergarten last week. So hard to believe after all of this she is going to be a big first grader. She is excited to spend a summer swimming instead of lying in the hospital. And swinging. She loves to swing. Often times during treatment when she was trying to fall asleep I would have her close her eyes and pretend she was on the swing in our back yard. She would drift off to sleep pretending she had hair again that could blow in the wind and I would lie awake praying she wouldn’t have to pretend forever.

I am learning, and quite ungracefully, what it means to walk fully in the present. To not let my mind run too far ahead of itself or linger too long on the pain, or even the peace, of the past. And what I find in this very place I’m walking is that the dust is yet to settle. But how could it, really? Every month or so a gust of wind has come along stirring it up in every direction. Esophageal stricture. Bowel obstruction. Vanilla. Gravity continues to pull the dust back down but until the air is still it will continue to be unsuccessful. And the truth is, I don’t know if the air will ever really be still again. At least not for five years until we can be classified as ‘cured.’ And the truth is, I have to learn to be okay with that.

A few nights ago we sat on our deck with our home group talking about life. Someone asked me if I feel any healing now that we have come so far. It was a great question and here’s what I think:

My daughter is alive. She does not have active disease, nor is she suffering like she has in the past. I walk with a great amount of thanksgiving for all of that. Always. Even when I am angry or afraid, I am thankful for that which God has already done. That is healing. That is redemption. And sometimes, I am even able to feel great peace. But only when I acknowledge that Izzy’s life is not in my hands. Only when I accept that God is free to do with her as He chooses. And that might seem like a beautiful answer but it’s a heartbreaking one if it’s yours. Heartbreaking that ‘peace’ means acknowledging everyday that if your child dies you will be okay. I miss, and can’t even imagine, what it used to feel like to not have to walk in that. What it was like to be the woman who took the Star Slinky Photo two and a half years ago.

Yesterday at clinic the computer was acting up and one of our doctors made a comment about how it would work in a perfect world. I laughed. “You do realize that in a perfect world I wouldn’t be sitting here and in a perfect world you wouldn’t have a job.”  He smiled, “That would be great.”

But a perfect world doesn’t exist and I guess that’s what my answer really comes down to. Yes, I guess I am healing. Because I have learned to accept that. I have lived through things that the woman who took the Star Slinky Photo would have crumbled just thinking about. And I have learned that I will never be at peace if I continue to wait for the dust to settle. Never, if my peace is determined by something is this world. I can take a picture of the star slinky any day or every day and the woman behind the camera now gets that.

Blessings on you today and LIFE for Izzy!

“I have told you these things, so that in me you may have PEACE. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33