Dear Friends:
Tags: Chronic Illness, Ulcerative Colitis, Crohns Disease, Chronic Pain, Friendship

Over the years since Lowell has been sick to varying degrees, my energy and attention has been required for so many of the medical issues he has coped with, and it has been my honor to help him, and my mission to get him better. As his mom, I am the primary person there to help, to figure things out, to pick up the pieces, to make decisions and generally be the manager of this complicated situation. At his diagnosis at age 2, it was obviously shocking and traumatic for our family to hear that our youngest son has a lifelong, incurable, chronic illness that at the time, we didn’t understand that much about. As the years went on and he was able to just be a kid like his peers, go to school, play sports, etc, I learned to accept a certain level of worry about his future and when there were times that things seemed stable, to relax a little. Though Lowell was never really in remission because of the aggressiveness of his particular Crohn’s disease, during the first decade of his diagnosis, he was mostly able to live his life, as were we without the disruption that later came as he was turning 13. During the years aged 2–12, he tried several medications, dietary interventions including EEN (Exclusive Enteral Nutrition-only ingesting formula) and travel to get the opinions of other top doctors in the country. It was difficult but seemingly stable. Looking back, I think because things got so much more challenging in 2013, I may have glossed over some of the traumas and hardships of this time, but that is for my memoir someday, perhaps.

Lowell and Ruby 2013

I was able to do things-travel, leaving Lowell for weekends or longer, engage in a social life with my old friends from high school and college, new friends, Crossroads friends, neighborhood friends, book group friends, park friends and build up and solidify my relationships with all of you. You provided a respite from the anxiety and stress I sometimes felt. We could escape from our usual lives as women and mothers, and not always talk about our kids. My time with my friends was invaluable and I guarded it closely making sure to do whatever I could to make and keep our plans.

Finishing a Triathlon

I started running, started doing triathlons, and started my foundation during this time. I was motivated and I surprised myself that I could run more that 5 miles, albeit not ever fast but I could run half marathons. I could do a triathlon even though I could barely swim. I liked the community of my teams, as we were all raising money for IBD research, and it was comforting meeting a group of others who were coping with IBD themselves or with their families or friends. I even ran the New York marathon in 2011, one of the best days of my life.

Rock the Night

I wanted to keep doing more, raise money to find a cure so that our future and other people’s futures whose kids were diagnosed so young, could have hope. When I started Connecting to Cure Crohn’s and Colitis with one of my friends, you were all there to support me. You came to our events, volunteered, propped me up when things were hard, spurring me to keep going, and complimented me on how we were building up our events and fundraising.

When Lowell got seriously sick in 2013, things changed and we have been climbing our way out of the mountain of endless complications that began that year. Surgeries, which led to more surgeries, ports and Picc line clots and infections, failed medications, pain, and so much more.

In the beginning, in 2013, 2014, 2015, I still had energy. I planned events, continued my endurance races, saw friends and held those relationships close. Yes, I had to miss out on things, but I was able to modify my plans while still finding social time that felt fulfilling, and I needed reprieve from the things I was dealing with at home.

At some point I noticed I was more tired, more stressed, and more overwhelmed by all the tasks I had to do. When I would be out training for a race, or seeing friends, or away for the weekend, I would come home and look at all the things I had to do. Call insurance companies, pay bills, make doctors appointments, order supplies either for tube feeding or his ostomy supplies during the year he had the ostomy. I had to interface with his school and tutors. I had to make sure he was eating correctly, and sometimes he was on special diets that required a lot of cooking. There was so much, too much, an endless to do list.

I also wanted to be myself, to spend time with my husband, and to take care of Jonah. I was still pretty good at doing these things and would make it a priority to do the best I could to take care of myself. I am sure Jonah felt a lack of attention at times but I did everything I was supposed to and wanted to do for him during his high school years.

Trying To Be Like a Normal Family in Hawaii

Maybe it was sometime in 2017 when I said to Sam, I am feeling like soon I will be burnt out and all of this will not only be difficult for me, but I fear things wont get done as they are supposed to. I tried to step up the self-care.

There were certainly periods of time when things were stable and we would get a reprieve from the relentless nature of this disease and its myriad of complications unique to each person. But the exhaustion and stress were building.

We went to Stanford for an outpatient pain program for 6 weeks in January of 2018 and another one at The Mayo Clinic in January 2019. Both were good and provided tools for which what has now become almost a separate issue, Lowell’s pain that I have written about before. Looking back, I know that the pain itself has taken its toll on us all, and if that is not frustrating, upsetting and almost unbearable-seeing your child struggle in so much pain-I don’t know what is.

Fast forward to now, or maybe the past year when things have been unstable, no remission and only some periods where Lowell can live his life without the focus being on all this.

Birthday Celebration with Friends

And me. Well this is what I feared and I knew was coming. I am tired, weary, spent. I still do all the things. I still attend to as much of Lowell’s stuff that needs to be attended to along with his help. I still run my charity, though I wish I could focus more on it but I know I will get back to it and all the ideas I would like to execute will still be there. I still forge ahead with the best version of self care that I can manage.

But I have time for little else. I have less energy for the social activities that used to energize me because often now I come home and feel more overwhelmed. Or I am just too tired to make it out and being at home reading or watching Netflix is more restorative.

So, dear friends, I have wanted to write his for a long time. I love you. I miss you. I am not entirely off the grid as you know. I love when I have time to fit in a lunch or coffee or a SoulCycle class or a game of Mahjong. I love seeing whoever can make it to our events or support group. I know it’s annoying to ask me to do things, and have me say no so much but one day I will be able to say yes again more often than no. Thank you for always offering to help. There are some things that can’t be helped but I know I can ask when I need it.

I know you understand but I just wanted to make sure, dear friends.