By Robin Evans
I am a self-labeled “free range” Mom. I allow my kids to find their own limits and make their own mistakes. But don’t confuse free range with my innate drive to always protect and defend my children. I’d walk across hot coals, throw myself in front of a train, and even support Donald Trump if it meant protecting my kids’ well being and happiness.
But what happens when circumstances for wellness are beyond me? When I can’t do what I was put on this earth for? When I am powerless? When I watch a child suffer and cannot help? This is my story about coping with a child’s illness. And I don’t know yet if it has a happy ending.
I have a ridiculously close relationship with my two boys, who are grown now; nonetheless, we talk every day, sometimes more than once. This is not always a blessing, particularly when the conversation with one son revolves around his pain and suffering. To hear my child, yes, even my adult child, crying through the telephone and wishing his death is unbearable. I cried with him each time. I hung up the phone and wished I could take his suffering upon myself to spare his agony.
But I have gotten ahead of myself.
Seven years ago my son, Brandon, moved to NYC and muscled his way into a fabulous life in commercial real estate. He managed a team and closed deal after deal. At the age of 26, he talked about retiring by the time he was 35. He had a 4 -bedroom apartment with a dishwasher and washer dryer…unheard of right? For fun and entertainment, Brandon tended the bar of a friend on the Upper West Side after selling real estate during the day. He was a machine.
In 2015 the gauntlet fell. Hard.
I knew that Brandon was suffering from bathroom frequency and blood. But like most men his plan was to will this away and try to manage it by modifying diet and eliminating alcohol and coffee. After suffering through many months he went to his first Gastroenterologist who after performing the first of dozens of colonoscopies, diagnosed him with IBD. He also prescribed the first of what would be many oral medications.
It was during our family vacation to Myrtle Beach in 2015 when I realized how bad he really was, and how much he was not telling me. While the rest of us were on the beach with a cooler full of beer, corn hole and boogie boards Brandon was in the condo in bed and in pain. I followed him into the bathroom as he exited. The toilet was not flushing correctly and when I looked down the bowl was filled with bright red blood. I panicked. Brandon didn’t. In fact, he called this normal.
Over the next many months Brandon tried to convince us both, that with diet modification he would be better. He gave up foods containing gluten, meat, sugar, complex carbs. As a mom, I knew he wasn’t giving certain foods enough time to adequately test potential food aggravators. He continued to reason away this disease by making sense of it-surely if he could find the food villain he could manage this himself.
It was around this time that the phone calls became more frequent and more desperate. I begged him to go to the ER for months but he did not see his own pain and suffering as being worthy of an ER visit. Mornings became unbearable and it was during those times that he would call in tears writhing in pain and hoping I would have the answers. I never felt so helpless. I would cry at work after hanging up with him. I wanted answers for him. I wanted him to be happy and healthy. I felt guilty when I was able to enjoy life, have a couple of beers and go to the gym when he was trapped. Brandon is an exercise enthusiast and that was robbed from him. It was during this time that his diagnosis of ulcerative colitis was confirmed.
The next time I saw Brandon was Christmas time 2015. His weight had dropped so dramatically that his face was almost unrecognizable. He was unable to do much more than lay on the couch during his visit. I listened to him wailing in pain when he used the bathroom. As much as I wanted him to be home, his company was not pleasant. He was angry and lost. He couldn’t work or leave my house in Maryland any more than he could leave his apartment. Getting to MD from NYC was torture for him. He needed a seat on a bus near the bathroom. Car trips were out of the question. Leaving my house was not possible and visiting extended family was out. It was during this visit that Brandon spilled the truth about his inability to work and his impending financial ruin. I felt like a failure of a parent because I could not help with his finances. He needed me and I could not step up financially, and I sure couldn’t help him feel better.
In the winter of 2016 Brandon was unable to get off the prednisone, and in fact, had to keep upping the dosage for it to be effective. I suggested that he investigate surgery. He was told that he was not a candidate for surgery until he tried biologics, the first of which was Humira. For nine months Brandon injected himself with Humira. His flares continued. No relief. He began despising when I asked him how he felt and if he believed the Humira was helping. I desperately wanted him to say it was working and believed that if I asked enough at some point I would get the answer I was seeking. It never came.
I was literally watching my child starve to death. He was down to around 110 lbs the next time I saw him. Together we decided that he needed to push for another medicine choice. After three doses of Remicade Brandon was unresponsive (it can take up to a year to be effective or to be determined a failure) By winter of 2017 it was clear that Brandon could no longer live independently. He was bedridden. He moved into my house where he was freezing, starving, and in constant excruciating pain. He was also panicked over finances. Caring for his physical and emotional pain became my job. I spent most of my waking hours talking through solutions and trying to guide his mind away from stress. My actual job is in sales and I saw my pipeline begin to erode. I did not have the drive and concentration to work to my professional capacity. My heart wasn’t there.
In March of 2017 Brandon’s pain was so bad he couldn’t stand up. He was also urinating blood. As a parent, this became so unbearably heartbreaking to watch and I forced Brandon to make a decision. Either he would allow me to take him to the ER or he needs to go back to NY.
When we got the ER it was clear to the staff that he was severely dehydrated. His skin was gray. While in the ER he had no bowel control and he was mortified. The nurses were gracious and amazing. In no time he was on a morphine drip, catheterized, and ready for tests. He had no pain. He became my funny, happy, smart son again and while I know it was short-lived, it was great to know that the heart and soul of the Brandon I always knew was still there.
Brandon stayed in the hospital for almost a week. He trusted his doctor and agreed that it was time for surgery. We decided as a family that he would stay with us from now through the entire process since he was unable to care for himself.
Once the surgery (first of three) was scheduled my job was to keep Brandon comfortable and to NOT allow him to get dehydrated. His conditioned worsened during the several weeks wait for the surgery. When once again he was unable to urinate and the few drops that emerged were bloody, back to the ER we went on a Friday. His condition was so bad that the surgery was scheduled on an emergency basis and took place 72 hours later.
Fast forward to today, and we are seeing the light at the end of the tunnel. Brandon’s last surgery is in April and while I am not a praying person, I beg the God that you believe in to make this whole UC nightmare a thing of the past. Brandon’s weight today is just about perfect. He looks forward to getting back to exercising. He has named his stoma Pinki (gender neutral). He still has pain but does not talk about it much. I do wonder if that’s for the protection of my heart.
We enjoy each other’s company. We laugh a lot, play a lot of Scrabble, and eat great food. I feel great joy when Brandon and I discuss what he wants to do later this year when he is healed; where he wants to live if he will continue to write. An aside-because he was bedridden he dabbled in writing. A year later he is a rock star and writes for 4 publications on a daily basis. But for this disease, this incredible skill would have remained dormant.
Brandon struggles to go out in public from the trauma caused by this hideous disease. He wears his intestines in a bag, for now. His body dysmorphia is intense, and it may be a long time before he sees himself as the super cutie he truly is-Pinki notwithstanding.
And me? I worry that his autoimmune disease will show its’ ugly head in another form in Brandon’s body in the future. I regret not pushing harder to move him in with me sooner. I wish that I could write him a check to make the debt he incurred from his inability to work just go away. This disease has consequences well beyond the physical. I accept that Brandon suffers from PTSD – I have never crapped my pants in front of a client. For Brandon, that was a constant occurrence.
I am truly looking forward to seeing what the future holds for Brandon—my Mommy instinct says that this child that I had the honor of raising is the most resilient survivor I have had the pleasure of loving. Forward.
Robin Gage Evans, a seasoned communications consultant, lives in suburban MD and is surrounded by the constant bantering of political junkies. She escapes the madness by practicing yoga, riding horses, hanging with her kids, and drinking double
IPAs with her friends. Robin graduated from the University of Maryland with a degree in Psychology.