We have been undergoing a consuming and distracting Edward Medical Situation (Crohn’s-related) this past week, and things are finally improving: procedure done, fever gone, color restored, eating and drinking normally.
Edward is scheduled to have intestinal surgery (normal for Crohn’s patients, but this is his first so I’m pretty nervous) in August. Because of this recent episode, his doctors are trying to get that surgery moved earlier, but there is not much hope of that: even the August date was lucky, considering they originally said breezily they could do it in May so he could have the summer to recover, and then the actual first available date was two weeks before he goes back to college; if anything goes wrong with THAT date, we have to wait for winter break.
In the meantime, Edward’s doctors are determined to build a nutritional buffer: the surgical recovery will be depleting, and Edward already has trouble with medication compliance and with forcing himself to eat more than he wants. (Boy, I do remember how hard that was when I was pregnant with the twins and was supposed to eat LOTS MORE: it SEEMS like it would be such a TREAT to be told to EAT MORE, but there is a limit, and that limit was much sooner than I expected.) So Edward suddenly has a bunch of new vitamin prescriptions, and will also be having an iron infusion, which is not something he’s had before. Apparently it takes about an hour and a half, and then you have to stick around for another half hour to be observed. Edward is also supposed to drink a prescription Ensure/Boost-type drink once a day.
I am hoping we can sustain the necessary momentum to create this buffer. Edward is a grown adult (not just 18 but 21), and this is a difficult stage for figuring out the parental role: I’m NOT in charge of him anymore, and he SHOULD be picking up these responsibilities himself (and NEEDS to)—and yet, if he is NOT MANAGING TO DO SO, it feels like there is room for a parent to offer help; even at my age, I feel like I can ask my parents for help. But that transitional gap between childhood and adulthood, when the developmental schedule calls for the child to separate from parents—I did not, during that time, want to ask my parents for help. And of course I don’t want to INTERFERE with that developmentally-necessary stage.
That’s how I put it all to Edward, and he has agreed that for this pre-surgery interval I am allowed to get real managerial and pushy about the medications and supplements: not because I am the boss of him, but because he would like some temporary help. We have some time set aside today to fill up a daily pill container. And every evening I am delivering to him one of the nutritional drinks, with a bendy straw.
I’m proud of you for acknowledging Edward’s adulthood and having a conversation! I’m also proud of Edward for acknowledging that you might be able to help him temporarily. And I’m also also happy that both of you acknowledge that bendy straws are great and ageless!
This is so beautiful it has made me cry. As a very much grown up adult now, my parents have done, and continue to do, the same for me as you are doing for Edward. I was diagnosed with a chronic illness in my early twenties and now twenty years on, my parents still manage to support and help in a way that gives me dignity.
You are a light for your family and your son. I’m so glad you have this time together over the break when you’d otherwise might have been working. I’m not sure if anything is ever “meant to be”, but we sure can be glad that some things are the way they are!
Wishing you and Edward strength and courage as you navigate this unusual situation. I hope you’re also able to find and make happy moments in between.
It is my heartfelt belief, as the mother of daughters in their mid-20s, that parenting young adults is so much harder than parenting small children. Small ones can be exhausting, but as they get bigger so do their problems–and those problems can be life-changing.
It sounds like you are doing a fantastic job navigating that fine line between “I AM YOUR MOTHER” and “I just want to help my grown-up/child” and I hope that Edward will continue to welcome your help. One of my daughters has ulcerative colitis and we scour every photo she sends to try to determine if she is eating enough, while also trying to Be Chill About It. Ugh.
Here is hoping that the surgery goes as planned, when planned, and that his recovery is smooth and successful. <3
Yes – fully agree that parenting young adults is harder than parenting small children.
yikes.
Hope you and Edward continue to sort this out. The fact that you are talking it out is already about 95% of the battle. Well done!
I was JUST talking to someone today about this– that it’s hard to know how much to push with adult kids. Mine are 19 and 22. Both are needing some help at the moment. So I venture a toe into the waters, then let it go. A little suggestion here, a question there, with lots of Letting It Be in between. It’s not easy.
Good luck with the surgery, and with building up the nutritional buffer in the meantime!
This post made me all teary, for all sorts of reasons. You are such a good mom, Swistle. And sending love and healing to Edward.
What an important conversation to have, and it sounds like he is really open to the extra help.
I think about Edward a lot and have since he was diagnosed all those years ago. I’m sorry he needs surgery but I do know that is quite common. May the date stay the same (or move up!) and may the recovery be smooth.
You are such a good mom! My kids are younger than yours (eldest is 15) –> please keep all these little parenting gems coming! I appreciate them.
Thinking of you and Edward. My husband (with Crohn’s) is approaching his third surgery with the normal apprehension but also some sense of relief: we hope his bad symptoms will be Much Better afterwards. I so hope Edward will feel better too.
It is so tricky to navigate! My son is 20 and we have been on an epilepsy journey for 10 years. Managing medication, healthy habits, etc. has been an adventure to say the least. I struggle with the exact things you mentioned here, and we do the same thing – I get his permission to go into manager mode when needed. And at other times, have to mind my business about things like sleep and hydration and let him suffer the natural consequences. Ugh.
We have to think about this a lot, too, with our 20 year old’s medical complications. Right now, they are handling their appointments and medications well, but when they had surgery last winter they just wanted us to take care of them.
And there are no particular medical issues for the 25 year old, but he lives at home and I still assign him chores that vary from week to week depending on what’s needed. I wonder sometimes if I should be doing that or if it should be more of a discussion, but that sounds tiring.
I’m so proud of you, Swistle. Every parent of a Chronic Health Situation kid has this struggle, or at least I did as Three dealt with his heart issues from age two into his 20s. He’d finally had his open heart surgery and recovered when he met Lovely Girl. I love her for so many reasons but a big one is that she’s quietly and competently taken over the role of being his health partner. I’m hoping for a someday new partner for Edward, too.
I’m a parent of a teen with a mental health disorder that will be part of her life forever. Fortunately, things are more or less manageable at the moment but there is a cloud of uncertainty when I consider her future.
Wow, do I relate to some of the comments here and to the post. Parenting young adults takes so much wisdom and restraint (I fail to keep my mouth shut too often).
Thinking of you and Edward – you seem like a wonderful mom.
I’m navigating something similar with my teen with some mental health challenges and a learning disorder. She’s starting college in August. Some recent happenings make me realize that she will need our support in the college transition, moreso than other students her age. Swistle, I love your approach and am inspired to find a similar one.
That sounds so stressful, I’m so sorry. I think your measured way of conceptualizing how to help sounds very fair, and I’m glad he agrees. I tend to err on the side of being overbearing, and my kids are really good at accepting help when they want it and telling me to stand down when they don’t. Best wishes for the procedure.
Edward is so lucky to have you, not only to care for him, but to handle the situation in such a thoughtful manner. I hope everything goes well with his recovery/preparation/surgery/recovery. My kids are much younger, and luckily don’t have any major health issues so far. Then, last week, AT SLEEPAWAY CAMP my eight year old broke her thumb. So that had to be handled (it’s a minor break and she’s fine, she even finished camp), but we are in the process of moving to another country and I thought I was already at capacity for handling… things. But I’ve thought that before, when I was handling way way less, and here we are, so I guess I’m more capable than I think. Which is both frightening and comforting.
Swistle, hope things go great with the lead up to the surgery and the recovery! Of course, you’re under no obligation to tell us anything, but I hope you’ll share some good news about it at some point.