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Meet Shelby: Connecting on loss from epilepsy

mommyandclayPlease extend a warm welcome to the newest addition to the Living Well with Epilepsy site. Shelby Myers has offered to write a regular column from her own experience on Loss from Epilepsy. I hope you will take a minute to get to know Shelby and her story. 

From Shelby

I am thrilled to be joining the team and to be able to connect with you.  Let me first give you my background and then we’ll chat.

A little background

I am an incredibly proud mother of 5 wonderful children; a wife of 22 years to an incredible man; a daughter, sibling, etc. of an unbelievably strong support system – all of which inspire me and make me whole.  In October 2012, one of my children, Clayton, got sick. He was a healthy, loving (the list could go on forever) 6 year old little boy up until that point.  Then, he developed a “normal” back to school virus which went to his brain. He was placed in a medically induced coma for seizures which could not be controlled.

Then, 5 months later he came home as an infant.  He was never able to walk, talk, eat or follow commands-–he could, though, give you a grin that would melt your heart.  The doctors could not stop his seizures. We tried everything over the years, but his seizures had a mind of their own. We learned, cried, hoped and prayed, but to no avail.  On a beautiful star filled night in August 2012, our little boy became an angel to Epilepsy.  Now, I go on, as his voice.

Why write about loss from epilepsy

I agreed to write about loss from epilepsy for this blog because it is so important for our survival, as parents or caregivers.  I want to be candid, like we are sitting down having a cup of coffee as old friends.  As we all know, old friends are the ones that you can “spill out your heart” without any worry of condemnation or opinion – that will be me.  I want you to post comments and together we will make it through the emotions of the loss(es) from epilepsy.  Let me be a little more specific: loss of control (doctors, medications, your overall household and the way that you intended your/your child’s life to become); loss of independence; loss of friends (your personal friends and those of your child); ultimately, loss of a loved one due to Epilepsy, or the constant fear of loss of life. We are in this together and will address all of these emotions. Let me know what you would like to chat about, honestly and with no holds barred.

The real deal

I promise that I will do the same for you in my posts. There will be times when my posts may be sad–-let’s face it, Epilepsy is sad.  There may be instances that I may be angry or you will feel my frustration within my posts.  I hope that you will never read into my posts as “complaining”, but I hope that you will join me in “complaining” in the comments. This is an impossible situation at times, but we will hold each other’s hands.

I hope to write about the feeling which you hide.  I say “hide” because after writing my memoir, “Out of the Bubble”, I was told (by those who know me) that they never knew how much I was struggling or feeling.  Like you, I am sure, most people only saw me at my best.  I promise you that we will inspire each other and laugh through our tears and frustrations- and don’t worry about commenting “at your best”- I have been there!   So, grab a cup a coffee when you see my next post come up and join me for a chat.  I am looking forward to it!

Follow Shelby McGrath Myers:
Shelby McGrath Myers has been married since 1992 and is the mother to 5 wonderful children – one of whom became an angel due to Epilepsy in August 2012. She is the founder of Clayton’s Hope Organization. She was appointed to the New Jersey Task Force and elected chair for both terms. In 2012, she was awarded the Epilepsy Advocate of the year by the Epilepsy Foundation of New Jersey/Family Resource Network. Most recently, her memoir “Out of the Bubble” detailing her and her family’s battle with Epilepsy was completed and published. Shelby's days are spent as a patient liaison for a home nursing/infusion/medical equipment company transitioning pediatric patients from hospital to home. She can be found on Facebook, Twitter, Pinterest and Linkedin. Based in USA.

6 Responses

  1. Redonna
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    I work in the medical field as well. Helping people get medical equipment and services they need. I think one of the hardest parts is that I help people all day long at work, and when it comes to my daughter having epilepsy. There is nothing that I can do to help her. I can’t stop the seizures. I can’t make them stop. I can’t figure out why it started. It is just hard!

  2. Shelby Myers
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    Redonna ♡ You are stronger than you realize and your daughter is very luck to have you for her Mommy! Make sure to live minute by minute in the bad times; take down time to regroup every once in awhile (don’t feel guilty about doing so); and, mostly don’t stop fighting we will beat this! Hugs 🙂

  3. Liz
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    Thank you for sharing your story!

  4. Ben
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    Thanks for being honest and sharing your story!

  5. Lizley
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    Thank you for sharing your story Shelby. Redonna, I feel your pain as a parent..Shelby is right, please don’t give up….we are facing Epilepsy head on, hands held firmly together.

    Our Eldest boy has Benign Rolandic Epilepsy, diagnosed a year ago upon having his first seizure a major one. As seizures only happen in his sleep, Im an insomniac so I stay up and watch him sleep..as I have this fear that I may sleep and wake to him having passed away in his sleep because I never got to him in time. With that sed I too have 3 little ones after him so those typical traditional outings for dinner outting at a restaurant to celebrate their birthdays or movies in the park with church friends can no longer happen because every night we are at home, medications at 6pm then in bed by 7 as fatigue is one of his triggers we make sure he’s well rested, this is 7 days a week and our younger ones can only go to Grandparents or Aunts or Uncles place for a sleepover to get some what sense of normality as I often fuss over our big boy first before the others (I know they all need my attention equally) so while I am a bit more relaxed and equipped to deal with seizures now, I make sure I include my kids in helping with their older brother for their understanding and also to incorporate their events (church recital, kindergarten production etc) so that I’m giving the best of myself to all my children rather than just to my unwell boy then a half pie Mama to the others. So while I can no longer go on evening outings with our family, friends or even go away for the night (has to be planned well in advance, which my husband and I know for our marriages sake and our own sanity we need to do it atleast twice to three times a year) and have even less contact with ex-best friends (yes we are no longer friends) as I don’t have time for that lifestyle anymore (having me time whenever I want or just going for a walk or exercise) as everything has to scheduled around my big boy and his nap routine…..I’ve accepted this and I’m ok with it because I love my kids and would do anything for their health and wellbeing. I try to use each second, minute, hour, day to create a moment for big boy and his siblings for them to treasure and hold onto, and that’s where I draw my inspiration from to continue to wake up each morning thankful I get to make more memories with them, that’s how I take control and (as my big boy likes to say…) Hulk! Smash! Epilepsy…..you will never win!
    Take care, and All the best to you Shelby and Redonna. Will keep reading your posts.
    From Auckland, New Zealand.

  6. Patty
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    I, like Redonna work in the medical field (I’m an RN) and get frustrated as we have never found out what causes the seizure and cannot stop them. My grandson is 7 years old and has had Epilepsy for 2 and a half years. The seizures seem more frequent on a “monthly” basis or maybe a circadian rhythm but the Neurologist says not possible. The high dose of meds have reduced his seizures to 2-13 per day once a month for 2-4 days then usually no more for about 26 to 29 days. We have tried restricting the carbs, but still needs to take several meds in high doses, which helps to reduce the frequency and length of his seizures but they do not stop. The meds make him too sleepy for school and so he sleeps thru part of every day at school so he is getting behind in school. He is a very active little guy so he has fallen onto furniture and gotten injuries, but he does not want to wear a helmet. He does not know what a seizure is so he does not “sit down” before he has a seizure, so we are trying to get a seizure assistance dog that he will learn to listen to. Thats the story of our frustrations.