Tomorrow will mark Jesse's 8th transplant anniversary. What an amazing happy day for him. I know he doesn't really get it today, but some day I know he will cherish this day as much as his dad and I do. It's a day to remember how fragile life can be, what a gift life really is, and a true reminder that strangers can be some of the biggest hero's in our lives. While it's a big deal, and a special day on our calendar, we don't really do anything to celebrate except talk about how great Jesse's life is thanks to his donor family.
8 years is a long time, can truly be considered a success story in the world of child transplants, especially for a bowel. We have been blessed with an almost perfect record of no rejection or organ related issues. I feel confident that he will use these precious gift for a good long time. I feel sure they will see him through driving a car, graduating from high school, college and even to his wedding. If well cared for, I don't believe his gifted liver or bowel will fail him ever.
Jesse's story is one of the few that turn out really happy, I'm afraid to say I know a whole lot more kids that it hasn't worked out for, that have never seen an 8 year anniversary. Our family knows first hand how tragic a chronic illness can be. Although I feel super positive about Jesse's future, it's never completely out of my mind that things could change for him at a moment's notice. That he is really never completely out of the woods. I guess that's no different than any other parent. I myself almost didn't see 18 years, and I was a completely healthy child. But still, as Jesse continues to grow, it makes me think.....
What is the right age to let him move into a more mature person... I realize the correct answer is "when he's ready".... but will I know that when I see it? I'm not sure.
Here are a few of the things I'm challenged with regarding timing...
- At what age does he get to stay home alone while I run to the store?
- Go on a date with my husband?
- At what age does he get to go alone to his friends house around the corner or to the park?
- When do I tell him to "be home before dark"?
- Walk the dog in our neighborhood where I can't see him?
- Stay in the car while I run in the bank?
- Let him ride in the front seat?
- Get a cell phone?
- How long should I keep his teeth? I have a bag full of little brown teeth... what do I do with that?
- Have the talk about where babies come from?
- Have the talk about Santa?
- Change his bedtime to 9:00?
These are just a few of the things that feel really scary to me, yet I'm not completely oblivious to the fact that they are all part of the "tween", becoming more self sufficient and mature stage of development. If someone could give me the Instruction Guide to Jesse's Development, I would be forever grateful... I would read it and re-read it. I know that other kids his age have already hit some of these milestones, so does that mean I'm not letting Jesse do things he should be doing? Am I too controlling? Probably, but is that really a bad thing? Thank goodness I don't need any answers today, I'm in no hurry... but for some things... Jesse sure is..
I would love to hear what some of you think?
For today and tomorrow, I'll just be thanking God for Jesse. For my big kids and their kids. It's an amazing feeling to be a parent and I truly appreciate the gift, no matter how it happened for me, or who gave them to me.. (because for me, there were many, many people involved in making me a parent, it's a miracle really... ;)
To our donor family... I'm sorry for your loss. I'm sorry I never had the opportunity to properly thank you. I'm sorry I never got to hear your story. I'm sorry you don't get to stress over these timing issues with your child, and I'm sorry your loss is my gain, it's not exactly natural and a hard reality for me to accept. But I am forever grateful for your gift, I never forget that you and your family are behind our health and happiness, and I will never let Jesse forget. Much love to you on this day, your hardest day each year. I'm praying for peace and comfort for you today.
To the rest of you... Thank you for your support and love through the years. I wouldn't be sitting here today considering Jesse in these ways without most all of you. You have all touched our lives in one way or another. I love you and appreciate you all!!
Happy Transplant Day Jesse!! Save a life like his.... Be an organ donor!!
A.
