This is it

[Editor’s Note: The following post was written for LOOP by a member of the ImproveCareNow Parent Working Group who is also living with Crohn’s disease.]

After years of planning for transition, this is it. On Monday, my son will borrow a car from a classmate, drive himself 35 miles from his university campus to a Dallas hospital, use valet parking for the first time, check in at an infusion center, and get his Remicade infusion, alone, for the first time. He’ll be far from his Ohio home and far from me. This will be his 53rd infusion; I’ve been there for nearly every one.

As usual, he has led me along in this transition. At age 11, when he’d only been diagnosed with Crohn’s disease for a few days, he came to me and said, “Mommy, if I have to have an ostomy that’s OK, because you have one and you can do whatever you want”. I hadn’t even brought up the possibility of surgery but he was already way ahead of me.

I’ve tried to do what the transition guides tell us, with mixed results. (Does anyone not get mixed results with teens?) But now that his – our – transitional period is ending, I can see that he was preparing himself all along. He is ready to continue the daily battle on his own, with me in a supporting – rather than guiding – role.

So now I’m left to consider what my new post-transition role should be. For the past seven years, I’ve advocated for pediatric IBD patients through our local center and the ImproveCareNow network. There’s still much to do and I’m still motivated to continue, but I’m no longer a parent of a pediatric IBD patient. How much longer will I be able to relate to other parents and feel that they can relate to me? I guess you could say that I’m in transition now. There are no pediatric-to-adult transition programs for the parents, so I suppose I will have to find my own way.

4 thoughts on “This is it

  1. Thanks for this. I am Mom of a 13 year old who has been on Remicade infusions for almost 2 years. Although still a few years away, I know this will be a tough transition for me when he does it all on his own. Tougher for Mom than for child. Sounds like your son is well prepared and ready – a tribute to your guidance over the years.

  2. This gives me goosebumps. You know we pray for your family at least daily. You are such a precious part of our lives. Anyone would be blessed to have you as an advocate: caring, informed, brilliant. Keep us posted.

  3. As far as I am concerned, you are the most brave and caring parent that a son could have. You are in my daily prayers as you walk this journey throughout life. Sincerely, Carolyn


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