The Resilience of Siblings

My children, Nicholas (21) and Anthony (19), are amazing young men in very different ways. Anthony was born healthy, but over the course of 22 months, his health began to decline. Doctors tried to help him, but ultimately his underlying neurodegenerative disease changed everything.

From that day forward, our lives changed so significantly that anything I knew about being a mother needed to change and we had to adapt to a new normal. Anthony now had severe brain damage, seizures, adrenal suppression, a feeding tube, and a tracheostomy. He eventually became ventilator dependent, required total care, and spent all his time in bed or a wheelchair. All in all, he was extremely medically fragile, and his room was now an at-home hospital room, complete with 22 hours a day, 7 days a week of nursing and multiple therapies every weekday.

The Life of a Sibling

Before Anthony got sick, Nick and Anthony’s relationship was typical of two little boys. Anthony would always want what his big brother was playing with, and if he didn’t get it, he would try to just take it from him. At the time, it was frustrating for poor Nick, but he did give in to Anthony most of the time. At such young ages, you could see the love they had for each other. Anthony would want a snack, and then he would ask for a snack for his brother, too. He always wanted to be with Nick.

Nick was almost four when Anthony got sick, and because he spent so much time in the hospital, Nick would come to the hospital every day with one parent, then go home with the other parent. This way, both children were always with one parent or the other. He was rarely even allowed to see his brother because of the hospital rules; we would do the switch in the lobby.

For the first few years of Anthony’s illness, he was in and out of the hospital many times. Nick had accepted this life, because he unfortunately didn’t have a choice, but he accepted it without acting out or being nasty or hating his brother. A few years ago I was talking to Nick about his life and he said that he never resented his brother for anything; he knew Anthony couldn’t help it.

Four years into Anthony’s illness, their father and I got divorced. This also was a very upsetting change for Nick, but he got through it with the same grace he did with his brother’s illness. He had some difficulties, of course, but as time went on, and life went on, he accepted all our new normals. It was tough to be able to do even simple things that Nick’s friends could do whenever they wanted, and he never complained. His father took him to his sports practices and games while I stayed at home with Anthony.

I involved Nick in everything with Anthony. I had him help me put medical supplies away and count the supplies. He would lay in bed with Anthony and watch movies, he would read a book with him or do his homework by him. The three of us were always together in Anthony’s room in everything we did. This was our life. We weren’t able to go out much or on vacations or do what typical families could do, but we were always together.

As time went on and they both got older, Nick got more involved in high school activities and now college, but Nick will still talk to Anthony, tell him about what is going on in his life, and Anthony will always smile. Melts my heart.

The Impact on a Sibling’s Life

As Nick reached his teenage years, he was not a typical teenager. He had overcome his only sibling requiring total care, being on a ventilator, having a feeding tube, having people in and out of our house daily and not being able to do things typical families can do. He had experienced the divorce of his parents at the age of seven and many many other obstacles. He never seemed embarrassed about his brother, and when we would go out, he would always want to push Anthony’s wheelchair. He was and is proud of his brother.

When Nick was a junior in college, he went on a service trip to Jamaica. They went to an orphanage and he did a fundraiser on Facebook to help cover the costs for this service trip. This was his request:

I will be traveling to Jamaica with a team of 10 other students to work at the Mustard Seed Community of Montego Bay. Mustard Seed is an orphanage for differently abled children that were abandoned by their families. I felt called to be a part of this trip because of my personal connection to this population. As many of you know, my younger brother, Anthony, is seriously ill, but has experienced nothing but love his entire life. Unfortunately, many of the residents at Mustard Seed have not been this lucky. In the short week that I am there, I hope to influence the lives of the children, and more importantly shed a light on the issues that have resulted in a community like Mustard Seed existing in the first place.

When Nick was in high school and preparing for college, they had to write college essays. His teacher said to make sure the first sentence would WOW the readers so they would want to read on. I would like to share his essay, which you can read below, not just for the first WOW sentence, but also for what he wrote. I just love that kid.

Parenting Siblings

It’s heartbreaking when you have to learn how to keep your child who is medically fragile alive, understand what baselines are, and know what to do when they change. You also have to become a strong advocate, coordinate care with nursing, attend doctor appointments, and deal with pharmacies and medical supply companies.

And then to have a healthy child who needs me so much, too, but in the simplest of ways. Nick just needed me to be his mom, simple as that, and at times, that was a struggle. And still, he was a good child.

One of the things I remember from when Nick was young was that he told me that his friends would complain about always arguing with their siblings. He said, “Mom, they don’t know how lucky they are to be able to argue with their siblings.” I am the mother of Anthony, and I know all the feelings I have from that. I never realized some of the feelings a sibling would have from this traumatic experience to his brother. This made me so sad for him because I couldn’t change any of our circumstances. I could only support him in whatever way he needed.

I am so amazed at the person he is today. He was always such a good kid, even with the struggles we had while he was growing up. I love his smile, his kindness and genuine compassion for others. He is amazing and is doing such wonderful things with his life.

BOTH of my children are strong and I love them so much. Being a mother is hard, and my heart hurts a lot of the time…BUT…there is always joy and so much love in my heart for them.

Nick’s Essay

As I enter my home, the stench of feces fills my nostrils, yet I could not be happier. An odor that normally results in pinched noses brings me inner peace. From a young age, one much too young to understand my circumstances, I’ve been conditioned to find both peace and gratitude in situations devoid of hope and to live an appreciative life.

My brother has been burdened with a terminal, undiagnosed, and debilitating brain disorder since 2002, when he was merely two years old. Thirteen years later, he is immobile, mute, and blind. Over the last decade, his life has been saved by doctors and medicine literally dozens of times. Despite the knowledge I possess of my brother’s fate, one which he has significantly outlived, I am able to generate gratitude and peace from mundane actions including blinking and the aforementioned pooping.

Communication is obviously difficult for a person who can’t vocalize his intentions. Through years of personal schooling, he has the capacity to blink his eyes when he wants to respond “yes” and look away as a negative response. My brother’s ability to respond to questioning is an indication of his ability to think and rationalize. On the outside, he appears oblivious to his surroundings; however, with these interactions I realize that he is slightly aware of what is happening in his room. This fact alone gives me peace as my brother smiles while I talk to him.

The act of excreting waste from the body is one that occurs relatively often for the vast majority of people. As a result of the innumerable prescription drugs fed directly into his stomach, my brother only performs this action a couple times per week. When I see or smell my brother’s bowel movements, which occur in his diapers, I’m grateful for the fact that his body is still properly functioning.

On most occasions when a healthy person encounters someone with disabilities, he/she feels a momentary appreciation for his/her lively body and active mind. Living with a disabled family member, however, creates an entirely different sense of appreciation. Living with someone with ailments similar to my brother’s increases the commonality of reflection and thoughts of gratitude.

“BEEP, BEEP, BEEP!!!” screech my brother’s alarms as he falls into the grasp of yet another apneic seizure. This startling noise is then followed by either a nurse or our mother removing his ventilator from the tracheal adapter that protrudes from his throat. When this tube is removed, my brother literally has no way of breathing under his own power. While his body fights to regain control, someone must attach a bag to the exposed adapter and physically squeeze air into his lungs. This is a task I’ve performed multiple times. Once the seizure has faded, the bag is removed and the ventilator tube is replaced on the adapter. This horrific sequence of events may be witnessed multiple times throughout the day in my home. Despite this being a routine occurrence, its significance has not eluded me. After many of the seizures I stop to appreciate the basic functions of life that my brother cannot enjoy, such as unassisted breathing.

Despite the mournful reality of my brother’s life and fate, he has a profound impact on my life. Through his courageous battle with illness, I have learned to appreciate life much more and to look for peace and gratitude in even the most basic and ordinary situations.