Moms Living with Disabilities – Part Three

This is Part Three of an Interview Series called “Moms Living with Disabilities.” If you missed Part One and Part Two, please check them out when you get a chance.

My hope is that you can identify with these women – maybe they are your sister, your friend, your mother, your daughter…maybe they are you.

My hope is to acknowledge these women for their bravery and honesty. Please be equally as honoring and encouraging in any comments that you leave.

 

This is Megan’s Story

Please briefly describe the disability or challenge that you have (what’s your official diagnosis)? Did you have it before you became a mom?

I’m Epileptic with a combination of tonic clonic and myoclonic seizures. Yes, I was epileptic long before Motherhood since my Epilepsy started in 1999 (my first year of college) and I had my son in 2013.

 

If so, what restrictions did it put on your life before children?

Well, I knew I had to balance stress and sleep- two things most college students are severely deprived of when trying to juggle academic and social life. Those are still two of my triggers, of which Mommyhood greatly tests. Lol We didn’t and still don’t know the exact cause of my Epilepsy, although we have theories, so each day was/is a guessing game as to what might trigger a seizure until I found a working medication.

 

What considerations did you make, if any, before you decided to have children? (Be specific – were there special medications, or did you have to stop medications, while you were pregnant, was there a chance of passing on your disability to your child)

Oh man. I knew I wanted children but I also knew Epilepsy and my medication could cause severe damage to the fetus and result in deformation and other serious disabilities. Fortunately, I was on Lamictal- had been for around 12 years by then- and all doctors agreed that’s one of the best medications to be on while pregnant. Although they don’t have a tremendous amount of research considering Lamictal is still fairly “new,” the incidence of deformity and developmental repercussions was relatively low in comparison to most other seizure drugs. And fortunately for me, I was only on the one drug… We knew the possibility for seizures considering the hormone influx and so we paid careful attention to my body while pregnant.

I had my first “pregnant seizure” at 3 ½ months… I had 2 grand mals back to back while my husband was on business in Vietnam. Not ideal. But we increased my med levels to counteract the influx of hormones. I had 6 more as the pregnancy went on and we decided my being a high school teacher and the stress of all I did was adding to my susceptibility, so I had to quit half-way through the year. Leaving my kids was incredibly hard but my health had to come first. I couldn’t risk more seizures and the lack of oxygen to my baby each time I had an episode. There was no driving and so I spent the last part of my pregnancy at home all day, most days. So depressing except I had a dream pregnancy otherwise- no sickness, only a few aches, and a very healthy baby. I loved being pregnant. Lol Seriously.

I had to have a C-section because my OBGYN and my neurologist agreed it would be unsafe for me to push because I have an AVM that’s already accompanied by a small blood clot at some point, and that’s a guess as to what factors into my Epilepsy. (No known head trauma in my life so that’s another mystery.) They didn’t want me having an aneurysm… And my little man popped out perfect- fat and healthy, no problems. I was blessed. I didn’t breastfeed though; I felt like I’d already pumped enough meds into my baby while he was inside me, so he was a bottle fed baby. Most women freak out at the thought but again, he turned out fine and I was confident in my decision.

 

Did family and friends influence your decision (either way) to have kids? Were they encouraging or did they try to discourage you?

All were encouraging but told me I knew my body best and it was a choice between my husband and I… I think all Epileptics need to remember that because it will be just the two of you balancing post-baby hormones, Epilepsy and baby at 2 AM.

 

How do you portray your particular disability to your kids? In what ways do you think it makes you a stronger mother?

I get asked this question all the time. JI don’t know about a “stronger” Mother but we are very honest with my son. Since my Epilepsy’s continued to be up and down since he was born, we explained it to him when he was 2… He’s very observant and although we know he doesn’t get everything, he understands and absorbs a lot. It’s not the sex talk so we thought we’d be as frank as possible. Lol He recognizes a twitch or small seizure and will sit next to me. In fact, he says “It’ll be okay Mommy” and holds my hand. He understands what “mommy doesn’t feel well” means and unfortunately there are times when he has to entertain himself or misses out on something… BUT he gets a tremendous amount of love and when I feel well, we do a lot to make up for it. I think if you’re honest with your child, he/she is a lot less fearful and more likely to feel in-the-loop and that’s all they want. To be “included” and loved.

 

What sort of help (if any) have you needed with raising your kids? Have you found people to be willing to help or do you sometimes struggle to find the help you may need (if you need help)?

I have great family and friends to help, but the greatest gift is my husband. No matter the sacrifice, he is there for me and balances the demands of work and the struggle of taking care of both of us. We discussed this before kids and I can’t fathom the pressure he’s under but he never fails to be by my side and we always confront this thing together. I’m very fortunate… But I just believe you have to always talk and remember to show appreciation for the caregiver as well. Their battles can be as tough as ours.

 

What kind of challenges as a mom do you face on a day to day basis because of having a disability?

I can’t do everything and I can’t be everything- a lot of the same challenges a healthy Mom faces too. Don’t get reeled in by Mommy guilt.

 

What positive things has your family experienced because of having a disability?

We’re strong together. I decided I didn’t want to risk the health issues of pregnancy or the post stress of raising a child, again, so I only have one child. So it’s just the three of us. With an almost 3 year-old and my health issues though, it takes a village. We are that village together because no one else is there for a random seizure at 3 am or in the afternoon when you’re playing Legos. It’s a crappy reality but it’s one that makes us stronger together.

 

What do you want to teach people about having a disability like yours (if anything)?

It’s a day in and day out, so don’t judge others by their appearance. Give people the benefit of the doubt that everyone has his/her own private struggle. Show compassion first, always.

 

What’s one piece of advice you’d give other moms who have a disability?

Your child’s first want/instinct is to love you and actually, protect you… So when you are healthy, show them the same as much as possible. They are also extremely resilient and they’ll survive the times you just couldn’t be there for them. All the “Mommy-doesn’t-feel-well’s disappear if you show them love and compassion when you do feel well. They absorb your behavior and attitude. Be honest, and always kind. Especially to yourself. 😉

 

Please visit Megan’s Blog at http://inmegansshoes.com/

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