Sometimes it’s hard for me to be an advocate for Epilepsy. Sometimes it’s hard to speak out and lay our life out there for everyone to see. But I refuse to be shut up or to fear what I post when I know there are others that my sharing here reaches, who really need to hear the things I say and have that support that they need.
This post isn’t going to be nice, and I’m not sorry if I hurt anyone’s feelings.
I have four children. Each has their own health issues and special needs. Each child’s health issues differ.
My oldest has ADHD, struggles daily with his learning and has extreme SPD as well.
My second child began having seizures at 3 months old, has toe-walked since she was a baby, progressively getting worse over time, had extensive surgery on both feet 2 years to the date of my birthday last month.
My third child has severe Epilepsy, cannot go a single day without her medication or she will have a set-back, she has severe ADHD, OCD and SPD on top of that, she has a tongue-tie, has issues talking and stutters and has issues retaining information thanks to the medications she has been on since she was 4 months old.
My last child, my baby, has Involuntary Breath Holding Spells that trigger severe epileptic seizure, has severe ADHD, SPD and mild OCD.
I’m going to say this as nicely as possible. I WISH my child ONLY had ADHD to deal with. I wish that was my only daily worry and battle for their health.
I was talking with another special needs Mom earlier. We were discussing how many people think they understand what we deal with each day and how people try to related their non-life-threatening condition to our children’s conditions. We just let them because, honestly, we’re thankful that most people DON’T have to deal with the things we do on a daily basis. And I, for one, cannot even begin to compare or understand what my dear friend deals with for her precious child.
I have days when I simply try to ignore that phrase and I wish my babies didn’t have that word associated with them. As Laycie, my third child, grows older the chances of her outgrowing her Epilepsy lessens and the words “life-long disorder” become attached. Her risk for SUDEP (Sudden Unexplained Death In Epilepsy) increases. The fact that she is also med-resistant and we cannot find a med that works correctly or 100% for her increases her risk of SUDEP.
Do you know what SUDEP is? It means that a person with seizures brain stops and their body shuts down. It’s the older version of SIDS in many ways. A person with Epilepsy suddenly dies for no apparent reason.
The TRUTH is one day I may walk in and find my baby not breathing or find her in a seizure that she will NEVER wake up from. Cold, hard, absolute TRUTH. That’s the face of Epilepsy.
We can’t control what this disorder does. I have given up the hope that she’s going to outgrow it. I have spent every single day since she was 4 months old giving her medication twice a day to keep her ALIVE, sleeping with her to make sure she’s breathing and so I don’t miss a seizure, because she has multiple seizure types and they happen at night as well as during the day. I have begged God on my knees to take this from her and yet, she still has it. I have begged her doctors to listen to me, to change meds to help my baby girl but nothing works. We will have control for a while, then a seizure happens or the medicine stops working as it should or the side effects build up on my child until she cannot function like a normal person.
ADHD and other non-threatening disorders are scary and upsetting, a true inconvenience. I know because my children have that as well. But I also know, because my children have that as well, that my children will not DIE from not having treatment for it (and I choose not to medicate for something not life threatening, though I do support those who choose to do otherwise).
My daughter can DIE without treatment and medication for her seizures. Her body can only take so much and as her advocate and her Mother, I will continue to fight a real battle for her and for her health to keep her healthy and with me every single day. That’s the important thing in life. I refuse to give up this fight for her and for her siblings as well.
I am here with them every single day, fighting their battle, making appointments, scheduling EEG’s and lab-work, requesting medication changes and dosage increases as needed. I’m the one who’s attended physical therapy, occupational therapy, speech therapy, rehabilitation therapy, Parent Child Interactive Therapy as they each needed it. My work is here, holding their hand as they seize or snuggling them when they wake up confused or exhausted or scared because they don’t understand what this disorder is or causes for them.
This has been my life as their Mother and I honestly wouldn’t have it any other way. Being their Mother has been the best and every day that I have been blessed to have them is better than the last. This is what my life was meant for, meant to be and I will always be thankful I was given this job. Even though the risks are high, I will always feel blessed.