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I am the mother of a 23-year-old with ulcerative colitis. Some could argue that I statistically had it coming since my mother lost her colon to ulcerative colitis at age 22 and my son’s father also lives with the disease. Beyond that, IBD is prevalent in other relatives on both sides of my children’s family. As one can plainly see, this illness was not new to me when my son was diagnosed at the tender age of 9 years old.

Unfortunately, familiarity and experience with a disease does not make one an expert when thrown into the caregiver role; emotions can run rampant even as we work hard to learn all we can to help our children. That is why my September 28^th conversation with Grady Stewart was so rewarding – it provided me the feedback and validation I needed as a parent who still questions her past and present efficacy as a caregiver.

On Grady’s ambassador profile in Lyfebulb, you can learn a bit about his story and passionate involvement with the IBD community, but in the live chat I had with Grady, you can see the impressive young man he truly is. When I was thinking of what questions to ask Grady, I focused on my own concerns as a parent caring for my child. What follows is a sampling of the questions and points that touched home for me the most.

Since Grady was diagnosed as a freshman in college, he talked about how hard it was to suddenly be thrown back into the role of the child who needed his parents while he had already taken steps towards becoming an independent adult in the college world. He said he felt extremely isolated when he first learned of his diagnosis because he really did not know anything about UC. He felt vulnerable, adding, “It takes a lot of courage and bravery to be open in public about it … I don’t know that I was there in my journey.” So he was grateful for his ability to seek out parental support.

That led me to ask Grady which was more important to him – independence or support, given his age upon diagnosis. He definitely chose support, stating, “Support was the pathway to independence for me.”

As the parent, I was encouraged to hear that. Even though my son is now an adult, he has lived with this condition for almost as long as he has had memory, and I have worked hard to transition myself from a fully responsible parent and caregiver of a child with chronic illness to a far less responsible parent and support partner along my son’s journey. But I would be lying if I said it has been easy.

I asked Grady to discuss the most and the least helpful things his own parents had done for him and continue to do in regard to caregiving.

He noted the ongoing support of actually being there for appointments and treatments as a big plus. When Grady observed that “There is so much love in that act of a friend or caregiver coming with you for a [two- or three-hour treatment]”, it particularly hit home for me. I spent more hours than I care to count trying to entertain my son with movies, stories, or jokes while he sat through an infusion or prepared for an MRI or other more invasive test or procedure. I really needed to hear how important that support has been to Grady because our own sick children often do not have the wherewithal to thank us at those moments because they are under their own duress.

Regarding the least helpful thing his parents have done, Grady demonstrated such insight and compassion when he recognized that “Caregivers are very much going through the same wins and losses as the patient, in a different way, but it very much impacts them.” Still, he has been frustrated when they worry too much or are overly involved. He says they seem to have difficulty giving up control.

Well, there you have it, I thought to myself, realizing that I have certainly been just as guilty as Grady’s parents, which brings me full circle to my comment that becoming the less responsible parent and support partner is not easy. It is our own ongoing journey.

Grady and I summed up our visit with his advice to caregivers: Don’t forget to take care of yourself too. 

At which point I was thrown back into memories of walking the treadmill at the gym in the children’s hospital in Miami back in 2012, while my son lay under full sedation after having finally lost his colon due to this pernicious illness. And I remembered how guilty I felt stepping out of the ICU for those moments just so I could clear my head and breathe full breaths. But Grady’s advice is spot on. If we are not good to ourselves, we can be no good to those who need us.

So continue soldiering on, my fellow caregivers. As Grady also pointed out, we are part of an ongoing partnership with the patients we hold dear. And according to this remarkable young man, we are definitely needed and appreciated.

Lyfebulb’s Live with Grady Stewart:

My name is Michael Hehenberger and I donated a kidney to my daughter Karin in March, 2009. I was borderline “old” because I was 63 years old and they usually have an age limit of 60, but I was accepted after going through a lot of tests. They don’t want to do an expensive procedure with two operations going on in parallel where the end result is not acceptable, as they don’t want to waste those resources. They generally feel a 63-year-old kidney may not be as good as a younger one, but so far so good.

I decided to be a donor when my daughter told me that her kidneys were close to not working anymore. She had diabetes and her kidneys suffered, as well as her eyes, and she was approaching kidney failure. When I heard that, she didn’t have to ask me the question. I told her that I would donate a kidney to her.

My biggest fear before donating was that they would take the kidney and put it into my daughter’s body, and then it wouldn’t work. I was never nervous about the actual surgery or the recovery afterwards.

I was first tested for genetic compatibility, and I passed that test. As a father, it’s not automatic that you can be a donor; the best donors are siblings because brothers and sisters are more similar genetically. Once I passed the genetic test, I then had to go through all kinds of fitness tests to make sure both that my kidney was healthy enough for my daughter and that I was healthy enough to go through the operation.

I was very well informed before being a donor and was provided with all of the information I needed.  I developed a very good relationship with my surgeon; he’s a great person. I was running and working out to prepare for the operation, so I was in really good shape. There are lots of statistics that donors live as long as non-donors, but I think it’s difficult to compare because the donor population is, on average, healthier than the rest. In order to be a donor, you need to be on the upper end of the spectrum when it comes to health and fitness.

For me, the recovery process was extremely quick. I didn’t take any strong pain medicine, just some Tylenol. It was really easy, and I got back to normal very quickly. I started running again after two weeks. I had three post-op appointments with my surgeon to make sure everything healed properly. I’m also getting regular blood tests every year and they are measuring my renal parameters, so I’m getting very good care.

I have not experienced any difference in my life after donating; I can eat and drink and do everything the same as before. I had the operation in March, and in May I did quite a strenuous hike at the foothills of the Himalayan mountains. I had planned it with friends prior to deciding to be a donor, and I really didn’t want to miss it. I was able to come back and after less than two months, I was able to participate and do the five-day hike.

Being a donor has motivated me to stay healthy and take care of my remaining kidney. When you do something like donating, you feel good about yourself and you are motivated to come back quickly. I am in a good mood most of the time, and working out is the best way to stay in a good mood.

Looking back, I would absolutely do it again. As I mentioned earlier, my daughter didn’t need to ask me, I told her I would do it. I knew it was necessary, and in that situation, I was the best option. I thought that if I do it now, if or when she needs another kidney, she has two sisters who can potentially donate.

I would tell someone considering being a living kidney donor to not be afraid of living with one kidney; many people live with one kidney and it works; it’s actually quite common. You go through a lot of different, comprehensive, extensive tests and they have a meeting with many doctors to determine if you can safely be a donor. It’s not just one person making the decision. I’m still alive after 10 years, and still feel really good about my decision to donate.