August 12, 2014 a little boy was born. The youngest of seven we instantly knew something wasn’t right from the jumping and jerking to noises and the blank stare in his eyes. Then the body shakes a day later that landed him in in the NICU. “What was happening”?? No one could tell us.
Test after test showed nothing. Nothing prepared me for the morning I walked into the NICU to find every nurse and doctor surrounding my child. I was shown a full twenty-four minute video of my newborn baby having a severe seizure. I just began to cry!! No diagnosis, no answers, but we took him home.
This was the beginning of a life I wasn’t prepared for. Within a couple of weeks we were in an ambulance. Seizures, seizures, seizures and more seizures. With no answers, no diagnosis, and no medicines working.
Two years passed with no answers. The witnessing of having your child resuscitated, watching them drill a hole in his bone for IV access, and bagged to breathe was becoming a normal. It was hard not to have a panic attack when hearing sirens. Waking at night to alarms that were not going off. The nausea that sets in when entering the hospitals. Depression, PTSD, and trauma were starting to take a toll on me as a mom.
At the age of two we got our diagnosis. Rare SCN8A epilepsy. To this day there are only three-hundred worldwide. My emotions were denial, anger, and grief. There is no cure or specific treatment.
Just a recently discovered genetic mutation that happened randomly in my child. A disorder that wasn’t just epilepsy.
For my son it has taken his abilities to sit, talk, eat, and walk. I ask myself why? I pray for God to let me take his place. I try to barter with God. I would do anything to take his place. My hope was dwindling. My friends and family disappeared and the isolation and depression worsened. I was grieving my child and he was alive.
But with the new diagnosis came resources, a Facebook page with families like my Liam from all over the world. Moms and Dads just like me. Answers to the crazy things my child does that doctors can’t figure out. Finally I was starting to feel listened to again.
I met other people who are experiencing what we are experiencing. Learning my child needs to sleep with a pulse ox because our children are dying of Sudden Unexpected Death in Epilepsy (SUDEP). Grieving with the parents who have already lost their child to this horrible disease.
Accepting was the only way I was able to live and enjoy life again. Accepting the diagnosis meant I was going to live every day to its fullest. Never going to bed without a kiss and an “I love you.”
I have chosen to not let this take our joy! There are many things in this life that my son has been robbed of. We will not let joy be one of them. His smile can light up anyone’s world. I was blind to my blessings because I was focused on the bad. “SCN8A, you have lost!”