THIS IS US! I don’t often share our private battle but it’s KCNQ2 awareness week March 1-7 and I want to be a part of the movement.
So what is KCNQ2? It’s a severe rare epileptic disorder, but honestly, it’s different for every afflicted person, and family.
So, what is KCNQ2 to Nolan? It is a horrific disease that has taken away his basic abilities, such as sit up, roll, walk, talk, eat or even see. It makes him fight daily through seizures and painful dystonia fits. It requires him to traveling to the Children’s hospital on a weekly basis, and therapy daily. He has to be poked and prodded over and over. On top of neurology, he deals with GI, respiratory, hematology, orthopedic, and many more issues. However, it has given him the opportunity to help other children as some of the top doctors have learned lessons from him (he is being published for his rare reaction to the ketogenic diet); it has given him a unique love for music; and shown him to appreciate even the smallest of joys in life, like a good cuddle with his mom. KCNQ2 has made him stronger than any human I have met, he never gives up and he defies many preconceived notions of the people he meets.
What is KCNQ2 to his brother, Thomas? It is a disease that has taken his mother away from him, more than is fair. It’s a disease that doesn’t allow his baby brother to communicate, or run and play with him as his friends’ siblings do. It’s a disease that has exposed him to critical incidents that no child, let alone a 2-3 year old, should see. However, it has created empathy, compassion, patience, love, and understanding in him that you simply cannot teach. It has (without our influence) made him realize you celebrate the small stuff and appreciate everything good we have in our lives. It has made him a more gratuitous person, who shows wisdom beyond his years.
What is KCNQ2 for his father? It is a painful reality he battles to cope with daily. KCNQ2 has taken away his dream of his boys throwing a ball with him or watching a baseball game. It has made my very prideful, private husband, even more, shelled. However, it has given him and myself the opportunity to appreciate each other for our strengths and our weaknesses, yet challenge us as a family. We will continue to battle this privately, more likely than not, for the rest of our lives.
What is KCNQ2 to me, Nolan’s mother? It is a war I didn’t ever expect to be in. It is a vicious disease that has stripped my baby of everything he deserves in this life. It has stolen every moment I use to take for granted with his brother: his first smile, first roll, first step, first words, seeing his first intentional expression, watching him take in and explore the world around him. I will never hear him say Mama or feeling his little arms wrapped around my neck. It has changed everything in my life I thought was important. It has taken away every title and role I have other than Mother. It has destroyed my soul, as I don’t know any pain greater than that of watching your child suffer (and I hope never to know of the one thing greater). Holding my baby’s body as he violently seizes, eyes rolling back, mouth open, the color leaving his skin, his mouth turning blue, as we are rushing for the oxygen, counting the seconds until I see some sign of life flush back, yet mentally preparing for the next step if it doesn’t, this is one of the most defeating feelings I know. As a mom, I have one job, to protect my babies, and I can’t, I can’t protect him from this, I can only fight with him.
However, KCNQ2 has shown me the good in people I never knew was possible. KCNQ2 has opened my eyes, my heart, and my mind. The amount of support and love I have received, and continue to receive, takes my breath away and I still can’t understand how and why everyone is so good to us. My son is alive because I have been able to fight with him every single step of the way, and that wouldn’t be possible without my wonderful family, friends, community, nurses, and coworkers. Nolan’s success is because of the love and support I have received.
Nolan has shown me the true definition of unconditional love, he has made me stronger than I ever knew I could be, he has given a new meaning to this world and I see everything in life through clearer eyes. Every day is a gift.
For now, we fight for a “new normal” where hospital visits aren’t weekly and critical incidents aren’t daily.
KCNQ2 is cruel. It is painful. It is life-changing. But it will not win. It will not defeat us. We will fight.
– Kara Boulter, Nolan’s mom