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Just when I started getting my life back in balance from a tumultuous few years, September 15, JJ had a break-through seizure, or a seizure that broke through her medication. This time, the neurologist sort of kind of thought maybe, possibly her precise seizure disorder is Panayiotopoulos. Which isn’t controlled by medication. And is long (20 – 60 minutes.) And, won’t cause brain-damage, probably. But since that’s not for sure, go ahead and administer a rectal injection to stop the seizures after 10 minutes, just in case. If you happen to be awake. Actually, better have the paramedics do it since the last time, the injection made her go into respiratory distress.
Did we want to take her off the medication? he asked my husband and me.
And the stress moved through my body without my consent . . .
Not surprisingly, I got sick. I stopped my healthy eating and exercise just when I was back on track.
My coping skills sucked.
Something needed to change.
So, what did I change?
I let my friends take me to Devil’s Thumb Ranch where I laughed a lot, ate good food, connected with nature, hung out with a really friendly calf, and rode a horse.
Breathe.
I also got off-line and did a cleanse.
Breathe.
I even started prioritizing sleeping 9 hours — instead of 5.
Breathe.
Here are a few moments from my Devil’s Thumb Ranch trip in Winter Park, Colorado. You’ll see how I found my center again.
Here’s the view from my huge claw-foot bathtub.
My special calf friend liked me. We hung out for some time because I liked him, too.
A trail ride connected me with nature . . .
You smell like horse 
. . .
I walked and walked alone in nature.
How is the stress now?
I feel better — peaceful and centered – better than I have in a long time.
Yes, JJ still has a seizure disorder. Unfortunately, we haven’t figured out what we’re going to do about the medication yet. I wish it were an easy decision.
But, I could handle this sleep-deprived EEG.
I can.
Because I’m finally taking care of myself.
. . .
My Holiday Wish For You
I wish that this holiday, you take time for you, too. Take time to read a book, get massages and pedicures, go on a mini-retreat, hang out with friends, go outside and walk, pet a cow, go off-line.
I think you and your family will be glad you did.
The Next Few Weeks
The next few weeks I will share with you my favorite gift ideas from the gift guides – and chances to win different products. No, I’m not becoming a giveaway blog, but I do want to share my favorite things for the holidays — and hope that in doing so, it makes your life a bit easier.
I cherish you and wish you many blessings this season,
~ Melissa
GIFT GUIDES FOR KIDS . . .
Holiday Gift Guide: Books for Kids
Holiday Gift Guide: Math and Science
Melissa Taylor is a mom and educator from Denver who is passionate about playful learning. Thanks for visiting the site!
26 Comments
Melissa, you have some good friends to pull you up and get you back to a balanced being. I haven’t had to endure the pain and stress that comes with caring for children with a chronic illness, but my close sister has. I’ve seen the worry and pain that goes along with the many doctors’ appointments and so many decisions. Big ones. I’m thinking of you as you make your way through your own family’s difficulties and as you conquer the difficult decision that must be made in regards to the medication. And wishing strength for you family. -heather
I’m sorry your sister is going through all that – thank you, Heather! It helps so much to hear an encouraging word of support and love. I appreciate it!
I love this Melissa! It’s beautiful and I’m thrilled you’re including “taking care of you” on your To Do list! I wish for you that you continue to prioritize you
Love you girl!
Love you, too – even if you mock my backpack!
Thank you for your cleanse advice and support and lots of laughs!!
This is such an important post. I can’t imagine the hardship. It is one thing to cope when we aren’t well but when it is our child and answers are missing… I just can’t imagine. I am glad you are finding ways to cope and take care of yourself. I wish your family answers and the very best.
Melissa. SUCH an important post, especially during this crazy time of the year. I’m glad you are re-centered, and I wish you and your family a New Year full of health, happiness, peace, and clarity.
xo
A timely blog for me, Melissa. Was at Devil’s Thumb Ranch recently too and went snow shoeing for the first time with some long-time friends that we had lost touch. Balance is always a struggle and easy to lose ourselves when looking for answers. So happy to hear you are taking care of you! Lots of love and hugs!
I am so glad that you got some time to de-stress to take care of yourself. You can’t take care of your daughter if you aren’t taking care of yourself first, though it’s so easy to put yourself, as the mom, as last.
Mia
ps Let me know if you want me to research a pediatrician specializing in seizure disorders here in Boston. Boston Children’s Hospital and Mass General Hospital have some of best doctors in the world. It sounds like a second opinion might be helpful.
thanks, Mia. Our doctor at Childrens actually just published the text book for other doctors on seizure disorders so it would seem he’s quite the expert. He even wants to include our video on the book’s companion disc showing JJ’s type of seizure since it’s very new and no others have been documented on video. Is there a definite answer or is it just a science that is still not predictable 100%? I don’t know but I’ll keep your offer in mind. A trip to Boston would be fun anyway.
pps a bunch of my mom friends are doctors and/or their husbands work at Children’s as doctors and would be able to give you great recs.
What great advice. Me time is something I need to work on. So glad I stopped by today! Thank you!
This is the best blog I have read in a long time. Thank you for sharing such an important message with all of us. You are an inspiration. Hang in there and do well. I know you will. Best!
that means a lot, Elizabeth. Thanks so much,
mt
I am so sorry you have to deal with breakthrough seizures. Thank goodness you have friends who help you carve out some coping time. I hope you find answers to your daughter’s health problems.
A great message here – an beautiful photos. So glad you’re feeling better.
Melissa,
I have a neice with a seizure disorder. She is now 32, married to a wonderful man, and still have seizures all the time. Last summer my sister and I took her to London for a special week of fun. We did have a wonderful time doing everything my neice wanted to do and see. The night before our last day she had a huge seizure while taking a shower. We spent the night in a London hospital and luckily we were able to leave London without any problems. My neice still tells us that was the best trip of her life. My sister and I had trouble “breathing” for many weeks after that experience. Looking back we are glad we were able to share all the good times with my neice and give her a week of great memories. I hope you will find the balance in your life with the good memories outweighing the bad ones.
Blessings,
Alida
wow, that’s quite a story, Alida. Thank you for sharing – and for the hope!
[...] Me Time and a Holiday Wish for You [...]
Way to go for taking the time you need to re-focus! I’m so sorry about your daughter’s seizures, but you’re right, you’ll be much better able to cope when you’re feeling your best. A great message for us all. Thanks! Here’s to a peaceful holiday and new year!
This is such a beautiful post, and a very important message! We need to take care of ourselves to be able to take care of others. Thinking of you and your daughter xx
I’m so glad that you are taking time for you and it’s making your situation a bit easier for you to handle. I hope that you can remember this, because I know it’s all too easy to forget and slip back into depriving yourself thinking that you can do more for others. I hope that you receive the answers you need soon. I hope that she does well and the seizures stay at bay. You both must be incredibly strong, whether you realize it at all times or not. I’ll be thinking of you both and hoping for the best. Thank you for sharing.
A beautiful post!
I am sorry that JJ is going through seizures. I can’t imagine how challenging that must be for her and your family.
Your one wise Mama to know that taking care of yourself will better equip you for taking care of your child’s needs.
*you’re Sorry for the typo.
Melissa, I LOVE this post…you inspire me so much!
Thank you for sharing such an important part of yourself and family with us. I wish your family a wonderful Holiday season.
[...] Me Time and a Wish for You [...]