Each time I learn of another special needs family losing their child, it really breaks me down. Families such as mine constantly wonder what will happen to our innocent fragile child. There are so many things that could happen, however, the main thing that worries many of us is, SUDEP (the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done). Why does this worry us you wonder, well, if you have a nonambulatory child who has a seizure disorder, you should be worried about SUDEP. SUDEP happens in your sleep, you can have a seizure in your sleep and die. This is why SUDEP is very scary among families in the special needs community who have a child with seizure disorders.
Being in this lifestyle is very challenging, we literally go through every emotion there is in a single day. When we have good days they are good, when we have bad days they are really bad days and there are days when it starts out good and can go downhill and then come back up. There is just no knowledge of what a day can bring to you. So add SUDEP to the equation, which means mom’s like me have many sleepless nights because we are worried that we won’t be able to be ready and available to help our children when they need us. There are nights when I feel I can go to sleep without an issue, then there are nights when I feel I can’t sleep peacefully because my son may need me to help him.
Those who aren’t in this lifestyle have a tendency to say, “stop worrying, your son will be ok or “Don’t worry about him, GOD will take care of him”. The problem I have with those comments is, worrying will never stop, yes he will be ok on days when he’s actually ok and GOD does take care of him. The reality is, when you have a fully dependent child you worry every moment of the day. Any noise, move, jump etc. makes you wonder if your child is ok. Try throwing in nonverbal and now we play guessing games about what could be the issue or if there is even an issue.
Each time I hear a mom tell me they lost their child to SUDEP, it increases the worry in me. I’m always on edge always wondering what if, always thinking about the possibilities that could happen. Each time I learn that a mom has lost their child I cry, I cry like it’s my own because the reality of SUDEP is there for families like mine. It’s our reality its apart of this lifestyle we live.
SUDEP is a worry for families who have children with epilepsy, nonambulatory, poor spinal posture (scoliosis) etc. These are all the things my son struggles with, which caused me to have increased anxiety about whether or not this could be my son’s fate.
This year I learned of 3 mom’s losing their children to SUDEP, last year I learned of 2 mom’s losing their children to SUDEP. I read about the pain these parents feel and my heart breaks each time. It’s like, I experience the pain with them. I don’t try to understand, I just salute and make sure I let each mom know that I am here for them to vent and/or cry to. I know we each have different paths, however, we all share the same story. We all know what it’s like to be on this road with our children, we build friendships, bonds like no other, and we make a point to be there for each other. I can be in a room with another mom who I may not know, however, once we find out we share the same story, we instantly feel connected in ways we won’t feel from someone who is not on this journey. We understand the scare of SUDEP we understand the sleepless nights and scary moments. We understand what it means to be in the hospital watching your child struggle and crying for hours praying to the higher power to bring your child through. We instantly get “it’.
In closing, if you are a mom who isn’t living this lifestyle of raising a child with special needs, I ask that you save the “That child will be alright” phrases, and step back for a moment. I ask that you offer something much more meaningful such as, help with cooking, cleaning, and do your best to be of service to those who are in my shoes. Be of love and compassion and do your best to not assume we are over exaggerating about our lives. Many of us stay in a shell to avoid the “It will be alright” comments. Most of us will isolate ourselves from typical families because we don’t want the uncertainties that you all tend to sometimes impose without realizing it. Invite us to outings with and without kids, bring your families into our world sometimes so we don’t feel as though we aren’t worthy of being included. Yes, we come with lots of challenges, however, we deserve to be included and not judged because of our extra-curricular lives.
Many Blessing
Libra J. Hicks
Founder/President of Our Children’s Story
