one-and-a-half years

That's right, friends, this month marks the one-and-a-half YEAR mark of Orilus' bone marrow transplant.

We commemorated this occassion with a visit to Jimmy Fund today. Though I well-remember the days in which Jimmy Fund filled me with dread (the long waits, the sick children, the nervousness of what-next), today I was filled instead with a glorious vision of all that God has done for our family. It was a take-a-step-back-and-SEE day. Being with doctors we have not seen (some of them, since pre-summer), and hearing them MARVEL at Orilus' progress...well, it made me wonder why I've not been marveling more.

Today, friends, Orilus is officially MEDICINE-FREE. He had continued to take a lone antibiotic these last many months, and he is totally done! For us, this is the ONLY time in Orilus' life since his adoption when he has been so free of medicines, and medical care (we don't report back to Jimmy Fund until our TWO-YEAR anniversary in May, and then probably just once a year thereafter). Wow. It's so hard to put into words what it means to see again the way our life used to be, and to bid it a joyful farewell. I told Dr. Lehmann and Dr. Trenor today that there are not really words to say "thank you" for getting a son with a new life, a life without 2 a.m. pain crises and visits to the ER. I got all teared up, though I've thanked them numerous times. How CAN I describe what that's like, to have a son who is pain-free, and HEALED? How is it that I so daily forget?

Dr. Lehmann shared with us about the progress in sickle cell medicine that Orilus' case is causing in the medical world. She has spoken in a LOT of places about his case, and the word is getting out that bone marrow transplants CAN CURE sickle cell disease. It's like she's on a new mission--to educate sickle cell parents that they DO have a choice. And to think that our son is the heart of that mission. To say it was a humbling experience--to reflect on all the pain of our son's life, and all the adjustments we have all had as a family, and the really dark times during transplant--and to SEE so clearly ONE of the MANY ways it is working good in another person's life. Completely humbling. Dr. Lehmann thinks that Orilus will have opportunities, if he wants them, to share his story with sickle cell groups in the area (his immediate response: "Really?!? When?!") How his magnamity filled me with joy! Purpose-filled lives, because our lives have been touched by others...a wonder of a ripple effect.

I really needed this reminder today, that God was at work in us, and is at work. We have been so often discouraged here at home in the last months--the boys both struggle in so many ways at times, and our parenting efforts are bumbling, and imperfect. Orilus and Jackson have so far to go. But today was a very clear reminder of HOW FAR they--and we--have come. How I wish I could see my children every day as clearly as I'm seeing them as I type these words!

We walked into Children's Hospital today, also, to return to 6 West to visit our nurse friends there. Walking through the doors, the familiar smell--Au Bon Pain croissants mingled with coats--and the tinkling sounds of the lobby...the transplant experience all came rushing back. How it used to be the smell of "home" for me, for 2 very long months, and how its smell could fill me with dread, or be a welcome relief from an isolated room. And I wanted to drop to my knees, and cry, and say, THANK YOU. Thank you to our doctors, for their wisdom, enthusiasm, and loving care. THANK YOU to our sons, for braving it all and giving me courage when I was lacking. An especially, especially THANK YOU to God, for answering the desire of my heart, and healing our little boy, and seeing us through.

It was as if a scar was re-opened on my heart today, and more completely, healed shut again.

One a half years. I really can't believe it. We have done a lot of living in one a half years. Praise be to our God, who has abounded in love and compassion, and shown us His grace. It's foolishness to me, how deep the healing love of God. I just know I have needed it, and am grateful to experience it again today. Good Father, thank You for remembering us in our very great weakness.