Families Walking Alongside Children With Epilepsy — Let's Connect

Thank you so much Chris! What a blessing this is.

Tracey

Hi,

I know this problem won’t be seem as a “job” but an act of love and even duty which will be subjected to stares from others who are not exposed or understanding enough the nature of this condition.

This will certainly help give support to everyone who is in similar situation.

Cheers,
Louis

Thanks Chris. I am going to try and post something I read a very long time ago that really touched me.
Kerry

@tchandos
Hi Tracey!
Thank you for joining this discussion!
If I remember correctly, your son went through quite an intense period — 18 tonic-clonic seizures in just 5 months, before Mayo found the right medication regimen, keeping him seizure-free for a couple of years.
Would you feel comfortable sharing a little about what that journey looked like during the harder stretches — what helped your family navigate the uncertainty, the adjustments, the day-to-day weight of it all? I think it would mean so much to families who are still in the thick of it to hear from someone who has come through to the other side.
Looking forward to hearing how your son has been doing lately!
Chris

@keeg1010
Thank you so much for sharing this, Kerry! "Welcome to Holland" is such a beautiful and moving piece. It captures so perfectly that feeling of having your plans changed in an instant — and the slow, tender process of learning to find beauty in the life you didn't expect. And I think it resonates with the way you have been facing your son's epilepsy journey.
You've walked this road with such resilience and with a positive spirit — something I've always admired and that's been a real inspiration to me. 💜 Would you feel comfortable sharing with the group some of what's helped you most along the way — practically and emotionally?
Thank you for being part of this conversation.
Chris

@santosha
Hi Chris. Thank you so much for your kind words. You are more than generous with your praise. I can definitely say the same for you.
I will say, I'm not so sure the doctors would agree with you. 🙂
Well, I tried to post earlier and there was a glitch, so I'll give it another try.
A friend sent me "Welcome to Holland" when Keegan was a baby. It was very inspiring and taught me to look at the beauty of my changed life. I never expected to have a special needs child but I am so grateful I do.
First, and foremost, my faith in the Lord carried me through some very dark times. God gave me Keegan and entrusted me to be his mom and advocate. Out of all the other moms, God chose me. Keegan is such a blessing and I refused to fail. I made a promise to God that I would do everything in my power to be worthy of Keegan and to be the best advocate for Keegan, since he couldn't advocate for himself. I am very blessed to have three beautiful sons that God entrusted me with. My family, husband, and friends are a huge support. They are always on my side and will "fight the good fight" with me. In times of darkness or struggle, they are always standing in the trenches, with me.
Early on, when Keegan was a baby, I found a support group through "Raising Special Kids". They are wonderful. Very much like this board except they pick up the phone. They will talk with you and help in any way they can. They are great for guiding new families with a special needs child and providing resources for free. I definitely leaned on them a lot in the beginning. I also relied on several autism support groups, more than I could list here. I was blessed enough to be able to take the first 4 years of Keegan's life off. I was there for every doctor appointment and every therapy session. I learned a lot during those therapy sessions and appointments. That time created a bond that will never be broken.
When Keegan started preschool, I went back to work (part-time) However, I changed careers. I went from being a medical assistant to working with families with special needs kiddos. I met so many amazing families and I learned a lot about how the state benefits worked. I was able to advocate effectively for Keegan because of this. There were many other resources that I relied on and still do. This board has been amazing. I was very blessed and grateful to meet you, @jakedduck1 , and so many others when we received the diagnosis of epilepsy. Having a support system in place is so important. To know you are not alone.
I remember when Keegan was in the hospital for a reaction to an AED. You were there for me when I was overwhelmed and exhausted. When things seemed so dark and scary. I'll never forget what you said. You told me to "put on my oxygen mask first or I wouldn't be any good for anybody". You gave me the ok to take a breath. To not feel guilty if I needed a minute to myself. To pause and reflect on all the good things and not just focus on the bad. Your kindness, strength, positivity have been a constant in my life since we met. I am grateful to call you friend. Sending love and hugs, as always. 🙂
Kerry

Thank you Chris for doing this.
I'm a senior mom now,almost 78 and my Lisa is now 50,the term" autism" was not used when she was seen early on with delays in walking,speech( still non verbal) so it was a struggle looking for medical help,programs,so few then,therapies limited..
Then at 33 ,still home with us,and her autism,now termed " profound autism" has been very challenging to say the least! her first tonic clonic happened and then things really changed!!! Many hospitalizations ,tests,trials of aeds,meds for extreme behaviors, her personality changed sadly,..so much to write here but fast forward to 2024 and 2 surgeries to remove part of intestines,a very long rehab..today still many issues to deal with..
We did get wonderful help and guidance from a regional center coordinator and did make a heart wrenching decision to do a residential (6 bed) carehome placement,tho it took me a long time to research,but with mine and husbands health challenges ( husband cancer,I'm caregiver) and not much family around I had to do what I thought best for Lisa to have 2:1 staff, nighttime awake staff and now she has been with her housemates over 16 years,5 ladies there longer,lovely home..
They are wonderful caregivers,of my faith,have done trips, celebrating all holidays,birthdays and owner lives on property so her son now is coadministrator
Never say my guilt has become less but I know I can't do all I need to for her now..
My only other daughter has Ehlers Danlos Syndrome so I need to be supportive of her also,tho she has husband and gave us 2 lovely granddaughters..
Yes,this journey very difficult but I Trust in the Lord,always pray for all of our special children and have so appreciated help here with questions about AEDs,side effects etc plus belong to profound autism support group..
Thank you all and bless all of you!

@keeg1010
Hi Kerry,
Thank you for sharing a bit more with us about what has helped you practically and emotionally.
The way you found a sense of calling and purpose in what could have felt like an unbearable weight — seeing Keegan not as a burden but as a blessing entrusted to you — touched my heart in a profound way.
Thank you also for sharing other resources that might be helpful to other families here in our group.
And as for the oxygen mask — I'm so glad those words reached you at the right moment and were helpful. It's always good that you remind me of them, because sometimes I forget to put the oxygen mask on myself first.
You've returned that kindness to me, and to so many others in this group, many times over. Having met you has been a blessing in my epilepsy journey.
With love and gratitude!
Chris

@minajo
God bless you! You're have such strength and dedication to all your loved ones. I know how difficult of a decision it is to have your child moved to a group home. In the beginning, you feel like they will not take care of her the way you always have. It takes time to get to know the caregivers and trust that they have your daughter's best interest at heart. With everything you are dealing with, just never forget to take a moment for yourself. Chris said to me, when my son was in the hospital for a week after a terrible reaction to an AED, to remember to put my oxygen mask on. I can't be of any use to anyone if I don't put my oxygen mask on first. It touched me so deeply and gave me the ok to take a minute. To breathe. To refocus and find the good in a difficult situation. I will always be grateful for Chris and that comment will never leave my heart. I pray for you and your family.
Kerry

Thank you!! Yes, I look for and usually find one aspect of Lisa's health journey that is positive, here's this: in 50 years she's had two surface cavities, so yes I know her staff does good job with her mouth and it IS hard
Right now we're trying to decide if it is the estrogen addition that is causing bizarre behaviors, try to rule out intestinal after the surgery year ago, any infections etc
But I can find time to pray, meditate, only takes a few minutes but does help..
Thank you all for the uplifting responses
Lisa's mom