Jealousy

The day I gave birth to my son was the scariest yet happiest day of my life. I never knew it was possible to experience such a flood of emotions at one time. But nothing could compare to the euphoric feeling I felt when I held my son for the first time. I had always known I wanted to be a mother and that I would make sure my children were given more opportunities to succeed than I had. I had already mapped out a course for my children. I wanted them to be full of passion for their future.

When I found out I was having a son I began to see the possibilities. The day he was born I knew he was going to be a football player; he had such broad shoulders and little skinny legs that it seemed to be a given. Over the first few weeks I began to work on teaching him: making animal sounds, showing him his hands and feet, singing the ABCs to him. I wanted to start preparing him to have a love for learning. I knew that if I not only believed in my son, but was proactive in everything I did, I could help to ensure his future would be full of endless opportunities. Little did I know a course had been laid for him already that would make all of these plans I had for my son impossible.

Beginnings of Jealousy

When Henry was almost seven years old he was diagnosed with a rare and terminal genetic condition that would not only cause severe physical disabilities, but would also slowly cause Alzheimer-type brain damage. I was informed my son would slowly and painfully slip away from me. I began to again be flooded with emotions, only this time there was only pain, sadness, fear, guilt and anger. I went through the stages of grief that one would expect a parent to go through after hearing such devastating news. I eventually processed and dealt with all the emotions and began to try to trudge forward with new goals and aspirations for my son’s life. I was no longer thinking about college or a future marriage and children for my son. Life became about medical procedures, research, quality of life, pain management, and the many other new territories that go along with caring for a child who is medically complex.

I thought I had it all together. I had gotten to a point where I had healed from and overcome the emotional trauma I had endured during the years of trying to figure out what was wrong with my son, and then finally, the actual diagnosis. I had managed to establish a relatively happy home for my family, and we were doing everything we could to maintain sanity, happiness and normality in our home. Then one day during a conversation with a friend who was going on and on about some outstanding thing her healthy child had done, I realized how enraged I became. I tried so hard to swallow the tears long enough to endure the phone call, but found the more this friend talked, the more I honestly wanted to scream at her to shut up.

Over the next few years I noticed that even though I was happy for my friends and their healthy children, I began to withdraw from events where I would have to hear about other people’s healthy kids. I didn’t attend my nieces’ and nephews’ ball games or pageants or any other events where my friends and family would be rubbing my nose in the success of their healthy children. I hated listening to others whine and complain about how awful it had been to be up the night before with a teething baby, or how sad they were that their little one had to have tubes, get immunizations or have some other seemingly simple procedure.

I began to realize I didn’t want to be around anyone with a little boy close to my son’s age. I hated seeing pictures of other kids in their football uniforms or hearing about someone learning to read or that someone had finally conquered potty training after the whole two months of trying.

I was jealous.

My Relationship with the Green-Eyed Monster

How was I supposed to admit to anyone that I was jealous of all the healthy kids my friends and family were blessed with? Who gets mad at someone for having a healthy child? How could I possibly justify being furious at a child for not being given a death sentence? I was so scared to admit any of this because I just knew these feelings were not natural. I knew they made me a bad person. I knew if I talked about this I would end up with no friends, and my family would stop speaking to me.

So instead of dealing with it, I decided to have a secret relationship with my green-eyed monster. I kept him fed by convincing myself these people were really trying to hurt me by sharing their children’s lives with me. I kept him just far enough below the surface as to not be seen by avoiding any situation where the people in my life could rub salt in the very open wound of my son never achieving the simple childhood stepping stones everyone else’s kids were reaching.

As my two younger children started to also grow and reach many of the same milestones, I began to notice that I was not only experiencing jealousy towards others healthy children, but I was also beginning to see I was jealous of my girls for being healthy. That’s right, I was furious they were playing little league sports and learning to read while my little boy’s body was slowly and steadily taking every skill he possessed away from him. I found it more and more difficult to find joy in listening to their stories of interactions with friends or watch them in a school program, or even listen to their beautiful voices read me a book. And it only got worse from there.

As my son got sicker and our lives began to be more about keeping him out of the hospital and somewhat healthy, and less about living life, my girls had to give up many activities they enjoyed. Then my green-eyed monster found yet another reason to be jealous of those around me. Not only did I have to hide my envy of watching and hearing about their children’s’ accomplishments and watching my younger children begin to soar in their own personal growth, but I also had to watch everyone around me live life while we were simply just existing. Outings with my little man were so hard on me and on him, and became fewer and fewer. We didn’t really do anything and rarely if ever got an invite to a BBQ or birthday party. Places like church and the zoo were just too much for me to handle. Going to a movie or out to dinner seemed like a far off dream.

I hated hearing how much fun everyone was having. I didn’t want to hear another, “I took the kids to the pumpkin patch,” or, “we had a great time at the Smiths BBQ,” story. I was becoming completely consumed with my jealousy. I was constantly comparing my life with the lives of everyone I encountered. I had not only experienced jealousy at this point, I had turned into to a snarling, angry and starving green-eyed monster.

Conquering Jealousy

So where did I go from there? Well that was a pretty hard journey in itself. I have a dear friend I met after a cross-country move, who I love with all my heart and who was an unintentional contributor to my fury. She had a son who was within two months of age of my son. I cared immensely for them both, but had managed to keep her son at an arm’s length. As my friend and I became closer and I started to let her into my protected little world, I was forced to spend more time with her son. She needed a sitter for her son during a summer break from school and I volunteered.

This decision that was seemingly irrelevant to my emotional well being was the beginning step of my long, painful healing process. Having this sweet boy at my house for several hours every day forced me into a place where I had to in some way interact with him. I quickly began to notice how sweet he was. I also began to notice how hard he tried to interact with my son. I began to allow a little of that anger I had towards him be pushed away and replaced with love. He was exactly what I imagined my son would be within the first few moments after he was born. He somehow began to smother the voice of my jealousy and I started seeing the danger of what I had been doing to the children and myself, especially my own daughters.

After a lot of soul searching, I talked to his mom about how I had been feeling. About how much I envied everyone around me for their healthy children and how much I hated feeling that way. Surprisingly she took it all very well. She didn’t think terrible of me, and saying it out loud to her made me realize just how much I hated how much control I had given to my green-eyed monster.

Now I’m not going to say that it was an easy road, or even that I don’t still have to remind myself that even though my son isn’t doing all the “normal” things, he is amazing and possesses more strength, bravery and endurance than anyone else I know. His life has impacted friends, families and strangers in ways learning to read never would have. It became about finding a new perspective of the situation. Yeah, there are days I have that “it’s not fair” attitude, but honestly, my son’s life is beautiful.

Achieving Happiness

Fast forward a couple years, and now I love hearing how my nieces and nephews are excelling in sports or school. I love being able to attend events, or see pictures or videos of events I couldn’t attend. I enjoy spending time with my friends’ kids and hearing all the amazing things going on in their lives. Even more importantly, I have over the past few years been able to feel happiness about the many, many achievements of my little girls, who are now growing into beautiful, intelligent, independent, compassionate, empathetic, absolutely amazing young ladies.

We are now also trying to live life to the fullest. It’s not easy and we have a lot of restrictions on what works for our family, but I no longer worry about everyone else’s stories because we have our own. We are enjoying spending as much time as we can making memories with Henry, and during those times we can’t get him out, we are finding ways to make life just as fun at home.

Is jealousy a healthy emotion? No. But is it a normal one when facing extreme medical issues with your child? In my opinion it’s normal, and most parents of kids with special needs experience it on some level. Unfortunately it’s such an uncomfortable topic that we rarely deal with it out in the open. We hide it, ignore it, make excuses for it, we do everything but talk about it.

Having to face the jealousy I was experiencing was uncomfortable and painful, but I’m so thankful I’m no longer tethered to all the jealousy that was stealing so much from me. As a mother you have a desire to be proud of your children. Now I can be. I am and I always will be proud of ALL of my children.

Melissa Koker-Kent is a full time stay at home mother and caregiver to her husband of five years, Joseph, and her three children; Harly (10), Haley (12) and Henry (14). Her family has lived in a rural town in Central Kansas for the past eight years and prior to that called Indianapolis, Indiana home. After a long battle to find answers about her son’s declining medical condition, Melissa’s son was diagnosed with a rare genetic storage disease called Sanfilippo Syndrome Type A (MPSIIIA). Since then Melissa’s primary focus has been caring for her son and ensuring he lives as full a life as possible, despite his grim diagnosis, and raising awareness and funds for MPS research.