I just found this thread and it really gutted me. UGH, this disease has so many facets to it. I can relate to the struggles of anyone trying to help and often manage an adult child. My son was dx'd at 17 and is now 21. I have grieved, like you all have, for the losses he's had in his short life so far, missing social stuff, missing school, practically taking up residence at the doctors office/hospital, and feeling like death warmed over and deeply in pain in what should be the prime of his life.
The first thing I will say is that this disease is a full on loss. It is a death to the life we thought our kids would have. It is a death to our expectations for them. It's death to what we thought would be the future. We lived our lives protecting our kids so they could grow up and be independent and be happy and thrive. This disease throws that off course. It deserves to be grieved. I think we should make sure to acknowledge this as parents, and take care of ourselves mentally in this regard. This support forum has been a godsend for me, even if it's just to read experiences, let out the pain, and have someone else to relate to. I also think that when our kids are in their darkest days, that we need to be fueled up to be strong and help them fight. We can't forget to take care of ourselves mentally and physically.
The second thing I will say is that dealing with a chronic illness seems like it's often harder on the caregiver than it is on the patient. We feel guilty. We feel sorry. We want to help, yet are helpless. We want to fix, but are powerless. And the patient is in pain, is often depressed, and the caregiver is often the object of hostility. In part because they trust that we are not going anywhere - they can take it out on us because they trust us, and they have to get out their anger and depression somewhere. Some really smart person, I can't remember who, said that over in another forum and it's the truth. The dynamic is difficult, but knowing that you bear the brunt because you are strong enough to bear the brunt provides a little comfort, however twisted.
The third thing I've noticed is the way that this journey with Crohns kind of parallels life. I am still trying to balance staying involved peripherally but also giving my kid the reins to start to make decisions and manage his own life. I remember the first time the doctors office wouldn't give me test results because my son didn't sign the HIPAA forms. I almost LOST IT.
Crohns is teaching me how to do what every parent really needs to do and it is so tough to do, let alone do well in these situations where life can be quite literally on the line. I think that with healthy kids, all parents go through the same thing. We are just going through the "raw" version. We need to let our kids sort it out, while making sure we guide them in the right direction, be there for them, and get them the help they need.
This journey has helped me have a very open relationship with my son. I am not sure I'd have the relationship we have if he didn't have Crohns and for that I am thankful. I have hope that he will get relief. I have hope that he will find a way to live his life in as full a way as he's capable. He will have severe limitations, but I have to hope that he will make his way as alot of other young adults have demonstrated is possible on this forum. A visit over to the teen forum for a skim makes me hopeful and happy to see such strength coming from these kids. They are strong. They will overcome. We have to trust that.
That is not to say that things will be perfect. Like others here, my son has not been doing well over the past year. He tried college full time last year and he just couldn't handle it. His last colonoscopy was a train wreck and he just started Remicade this week. Devastating and scary decision. He is often surly and grumpy and depressed and sullen.
So I am learning to communicate better. To adapt more. To be patient. To modify my expectations on how he spends his time, where he works, and how he goes to school. And find a "new normal" and let go of old expectations. I think that's the hard part.
On roles and responsibilities, I do schedule/go with him to his specialist appointments still, but manages all his day to day generic appointments and blood test stuff. I manage the insurance paperwork, but I do that for entire household, so it is what it is. I also do the grocery shopping, test out new recipes, etc. On letting go, I am probably still too involved, but I am working through the process and we will gradually pass it over. I harassed him to get a part time job until he got one, and also chat with him actively about new plans for school and how we're going to figure out a part time/online solution to push forward there. In this regard, I don't think there's anything wrong with pushing them to have school/job, however modified those plans have to be to fit their circumstances, I think it's good for everyone.
One thing I simply insisted on is that he start seeing a counselor. That is one thing I didn't let up on until he made the first appt. I researched, I sent links, I texted, I talked, I threatened to BE his therapist... I pretty much harassed the crap out of him until he bit the line, because I felt so strongly that mental health is 90% of the game here.
I'm always worried (sometimes terrified) about the future - will he finish school, will he be able to get and sustain a full time job, will this treatment work, what happens if it doesn't, will he need surgery, what happens if he catches a virus, what happens if he never feels better, what if he gets cancer, what happens when he's too old to be on our insurance, etc. etc. But those worries are unproductive. All we have is today. I know that sounds new age, but if this disease has taught me anything, that's it. Do the best you can do today and don't worry about tomorrow until it happens.
Anyway, long rant
My heart goes out to all the parents on this thread. I hope that you find balance and peace on your journey. I am here to listen if anyone needs an ear.
