Mauricio & Sharon

In 1970, my first child Mauricio was born three weeks early. From the moment he was born, he had fluctuating above normal temperatures, diarrhea and inguinal hernias (tissue that bulges out of a weak spot in the abdominal wall). These hernias required immediate surgical correction.  Mauricio was only one month old. From that day on, Dr. Samuel Schneeiweiss, his pediatrician, guided us in the caring for Mauricio.

When Mauricio was six months old, Dr. Schneeiweiss sat with me and addressed the possibility that Mauricio was suffering from a very rare disease; called Neutropenia.

Mauricio’s abnormal temperatures were not subsiding and each time we did a blood count, his neutrophils (a type of white blood cell that helps the body fight infections)
were very low. The doctor recommended that we travel to the USA to obtain a bone marrow biopsy. First, we took Mauricio to the Texas Children’s Hospital in Houston, where they confirmed the diagnosis of Neutropenia. Returning to Mexico, our parenting philosophy was to provide top medical care for Mauricio but to never allow anyone to treat him as a “sick” child or feel sorry for him. Through- out Mauricio’s treatments I would talk to him and explain at his level of understanding what procedures were going to occur. As an example, when he needed an injection, I would say to him, the nurse has to put a needle in your arm with the medication, and this medication is like little soldiers that are fighting the illness in your body.

When Mauricio was ten months old, I took him to the Boston Children’s Hospital to be checked again and explore the availability of any treatment for the disease.

Unfortunately, there was none. The only thing we could do was to be attentive as to any
symptoms he would develop. Due to his deficient immune system, he was susceptible to any illnesses that came his way. During our Boston trip, Mauricio had to undergo another bone marrow biopsy to confirm the diagnosis. After the procedure, I was walking very quickly down the hall, on my way to Mauricio’s room. Suddenly I heard a baby’s voice calling, “Mama.” I turned around and it was Mauricio on a stretcher and lifting his head up to call out to me. Immediately I began crying as I rushed to hug him. This was the first time he had called me “Mama”! That same day while I was in Mauricio’s room a nurse approached me and asked me to accompany her for some blood tests.

They were looking into any possibilities of genetics playing being a factor in Mauricio’s diagnosis. A very strange thing happened: as the nurse was taking my blood and watching my blood fill the syringe, she said,  “You are pregnant. I need your authorization to run a pregnancy test as well.“  She discerned something in the color of my blood. The pregnancy was confirmed. My daughter Sharon was born in December 1971, only 17-1/2 months after Mauricio’s birth.

Mauricio’s blood had to be checked three times a week and the blood samples were sent to Boston for review. My doctor cousins, Dr. Leon Bessudo and Dr. David M. Bessudo, who had a pathology laboratory in Mexico City, were very helpful in the care of Mauricio. I will always be grateful to them.

During the first four years of his life, Mauricio was hospitalized several times and during those times a cloud of concern and fear was always hovering in the background. Yet, we were always hopeful that Mauricio was unique and that he would overcome this rare disease for which to this day; no cure has been found.

During the first four years of his life, Mauricio was hospitalized several times, and during those times, a cloud of concern and fear surrounded our lives and our family. Yet, we
were always hopeful that Mauricio was unique and that he would overcome this rare disease, for which, to this day, no cure has been found. He had only a 3% cure rate on his side for overcoming the disease…and he did!  After the age of four, he progressed to be a very healthy, unique and successful husband, father and entrepreneur.

This brings me to the topic that I want to address today: ‘UNDERSTANDING AND CARING FOR THE HEALTHY SIBLING OF A SICK CHILD’.

I recently asked my daughter Sharon what it had been like for her to grow up in a household where parental attention was directed to the care of her sick brother. This is what she so beautifully wrote:

Sharon, so beautifully writes: “My brother was diagnosed with Neutropenia before I was born. My mother found out she was pregnant with me while she was in Boston seeing doctors to confirm his illness. By the time, he was four years old; he had beaten a disease in which only three percent of the patients survived in the 1970’s.

I was so young when all of this happened that I did not realize until I was a teenager how it had affected my life. My mother spent much of my early childhood caring after him. My father worked all day and I spent much of my time being cared for by either my grandparents or nannies. I don’t know how my life would have been different if I didn’t have a survivor for a brother, but I do know that there was a feeling that he was the “golden child.” He could do no wrong… which made me wrong often. Even though he got bad grades in school and lied often, he got most of the attention. He punched me and I got in trouble. I often felt like I was an afterthought.  I got good grades, which I guess made my parents feel like I was good and didn’t need the attention, but I did.

It was hard to find a voice in my home. I didn’t speak much. After his illness, he spent time in therapy to work on some trust issues. This makes sense since most of the adults he knew were doing tests on him. I went to therapy a bit later to work on self-esteem issues, which makes sense also considering I never really understood why he was the “golden child.” I’m not sure it was ever acknowledged. I grew up feeling like I was not good enough. It took me many years to come to terms with the fact that I would always lose the battle when it was between the two of us.  

I feel very fortunate because I think that many people who grow up with a sibling, who is or was ill, have struggles. Everyone thinks that family life goes back to a normal once the illness is gone, but it doesn’t. Parents will always feel a special bond with any child who goes through such an ordeal, but sometimes they forget about the fact that the other child or children went through it too…in their own way.

I know that my parents never meant to make me feel lesser than my brother, but I am the exception. Many children don’t understand why there is a discrepancy between the attention they get and what is given to their sibling. I don’t know how it affects everyone else, but for me…it was difficult when I was younger to find confidence. I had a few special moments with my brother and my uncle, which helped me overcome some of those feelings. Today, I feel happy where I am in my life.

I wonder at times if my relationship with my mother would have been different
growing up. We had many struggles connecting. There is no way to change the
past. There is only the future and what we do with it.”

My daughter’s eloquent and emotional description as to how it was for her to grow up into a household of a sick brother brought tears to my eyes. As you can imagine, it is important to acknowledge that the whole family is affected when there is a sick family member. I remember feeling that as a parent, I had submerged my feelings. I had to portray strength and cover up my fears for the sake of both the children and the family overall. Siblings, on the other hand, often express fear, concern and jealousy.  In addition, when there is a sick child, siblings express their needs in different ways. When Sharon was young, she tended to be dramatic, even when she had any minor almost unnoticeable injury. It made sense, since she was really asking for love an attention. She learned from what she saw and experienced at home, namely, that the reward for sickness is parental attention.

My daughter tried to get attention by always striving for good grades in school. However, in this case, we unfortunately missed the underlying message.

One of the attributes that helped our family was to always be open and honest with one another. My ex-husband Eduardo and I were both in psychoanalysis, and we were very aware of the importance of being truthful as to the events that were happening. The
whole family, including the extended family, was part of the healing process. Putting an emphasis on open communication and as to how everyone was feeling was helpful. We always made an effort to sit together as a family at lunch and dinner, and Eduardo would always bring positive topics to the table for conversation.  One lesson to be learned is that parents need to pay attention to all of their children’s’ behaviors.  Talk to them, listen to them and give them the environment to express their emotions.

I will never forget the night sitting by my daughter’s bed when she was approximately seven years old. She was lying in bed with tears in her eyes. When I asked her if she wanted to tell me something, she just nodded her head but she seemed frightened to talk. I could tell she was in deep emotional pain.

It was also very painful for me to see her like that! I have to admit that I was also experiencing frustration in that she was not talking to me. I decided to stay by her side and told her that I hoped she would trust me and that I was going to wait until she felt comfortable enough to talk. Finally, after an hour, she said, “Mom, I feel you do not love me as much as you love Mauricio.” We were both crying as we hugged each other. I thanked her for telling me her fear and told her I adored her. I apologized to her with all my heart!

By the time, Sharon was four and half years old and Mauricio six, we had moved to Los Angeles. One afternoon two years later as I was walking upstairs, I overhead Mauricio
telling Sharon (who was in tears), “Don’t do it.  “Leave the scissors alone, or you will hurt yourself.” Angrily, Sharon said, “This is what I want, leave me alone!” In disbelief, I froze at the staircase landing. My instinct was to rush to them, to take control of the situation. At the same time, I realized that I might reinforce self-destructive behavior on Sharon’s part if I did that. My fear was that she might see her actions as successful attention-getting. Luckily, the situation was resolved in about five minutes. Sharon released her hold on the scissors and left the bathroom. I then created some noise to alert them to my presence. It was impossible to ignore how badly Sharon was affected by her brother’s illness and the attention given to him. I made Eduardo aware of what had happened and had long conversations with my psychoanalyst in Mexico City.

We got Sharon into therapy and, most important, we provided Sharon with love and reinforced attention to positive behaviors.

It is difficult to ask parents to pay attention to the healthy children when all efforts are centered on the ailing child, but if such attention and inclusiveness is applied even
slightly, it can lift the burden somewhat for the entire family.

I can only tell you that it is very important to “read between the lines” when our children speak. It is also very important to let them express themselves! It is equally important to
ask a sibling to help his/her ailing brother/sister. Even a simple a task as carrying in a dampened cloth to the sibling’s bedside can enable the healthy child to feel included in the healing process. It can soften the line between the one getting the most attention and the one desiring to be attended to. It enables the healthy sibling to feel empowered and a valuable part of the family’s efforts to rehabilitate the sibling that is ill. Sharon felt that we had abandoned her.

Perhaps if we had included her more in tending to Mauricio,she would not have felt so left out. Often, a lack of communication can be interpreted as a rejection, as we see in Sharon’s recollections.

~ Dr. Estella Sneider, PhD