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February is International Rare Disease Month.
Since Angelman Syndrome originates from a problem on the 15th chromosome, February 15th is International Angelman Awareness Day.
In a hope to bring awareness to this rare disease, I’m going to share 15 ways that Angelman Syndrome) has changed our lives.
If you’d like to learn more about Angelman Syndrome, please visit the The Foundation for Angelman Syndrome Therapeutics (FAST).
Please Help Spread the Word About Angelman Syndrome Awareness
I’d be honored if you’d share this post. Helping others become aware of Angelman Syndrome increases the visibility of this disorder. That increases the funding.
And a cure is on the horizon. Clinical Trials are in the works and the FDA has granted approval for a drug for gene therapy. A cure is possible!
Please help spread the word!
15 Ways Angelman Syndrome has Changed Our Lives
1. We Learned More About Love
Owen teaches us about love! Real love. When you love someone not because of what’s in it for you, but because of a desire to put their needs first.
2. We Rely More on God
Life with a severe disability is a challenge. We’ve grown closer to God since Owen’s diagnosis. I don’t know how I’d survive day to day without His help, and I’m so thankful for it! We know that everything that happens is in God’s plan for our lives, and we can trust that it will work out for good.
3. We Keep Our House Cleaner
Owen eats everything. We’ve had to really train the kids to keep little toys and things put away. We’ve all learned to not pile books and papers on flat surfaces, because they will get destroyed and eaten.
Angelman Syndrome helps keep the house clean!
4. I’ve Learned to Accept Help
Well, actually I still struggle with this one. But, I’ve learned that I can’t do it all. Honestly, no one can do it all. But having a child with special needs makes me more acutely aware of my needs.
I’m thankful for the friends and family who have watched the other kids while we’re in the hospital, prayed for us, brought us food, or let Owen spend the night so we can sleep. Thank you!
5. I’ve Learned Some Amazing Nursing Skills
From caring for Owen’s G-Tube to learning about his VNS, I’ve done more nursing duty than I thought possible. It’s crazy how much you learn caring for someone else. And how fast you can get over a queasy stomach when you have to take care of someone!
6. I’ve Learned More About Problem Behavior
Problem behavior IS NOT a problem for the child engaging in it. It’s a behavior that’s working for them–giving them what they want.
I’ve learned to look at the bigger picture, and try to figure out what Owen is trying to tell me through his behavior.
It’s a skill I’ve been able to transfer to the other kids as well. It’s made me a better parent!
7. I’ve Discovered Low Carb Cooking
I love bread! I love cookies!
I’m a self-diagnosed carb-aholic.
I’ve also learned that Owen’s seizures respond well to a low-carb diet.
While neither the keto diet or Modified Atkins worked for him behavior wise, a moderate carb level is what seems most appropriate for Owen.
I’ve learned to cook with coconut flour and flax seed. I’ve created concoctions I never would have dreamed of. And I have to admit, most of them actually tasted pretty good!
While I’ll probably never give up carbs completely, I’ve learned some benefits of keeping them in check.
8. I’ve Learned Doctors Don’t Know Everything
Owen wasn’t supposed to walk.
At age 7 he took his first steps, and his walking has gotten stronger since then.
The prognosis for Owen has never been positive. I love it when the doctors are wrong!They don’t know. They can’t predict the future. Or measure the drive that Owen has.
9. I’ve Learned to Advocate More
Owen can’t talk.
Doctors don’t know everything.
Put those facts together, and it means Angelman Syndrome has empowered me to be Owen’s voice. I’ve been his advocate–fighting with doctors and insurance companies along our journey.
I still hate doing it, but I have a good reason to fight my fears and get over myself. Owen and Angelman Syndrome has helped me do just that!
10. I’ve Learned More About Learning
Owen is a very smart kid. But, he can’t share his knowledge with the world like my other children. He can’t tell me about the book he read, or ask questions about the movie.
I’ve learned that there’s more than one way to learn, more than one way to show others what you can do. I’ve learned that exposure is key–I don’t want to hold Owen back because I don’t think he’s ready to learn about something.
I try to give him the benefit of the doubt, and let him participate in our homeschooling journey the best I can.
11. I’ve Learned Couches Can Be Eaten
It started with a hole that our dog ripped in the couch. Then, it slowly got bigger. And bigger. Even though we no longer had the dog.
Then I realized that Owen was slowly eating the couch.
We keep blankets over it now tucked in all around so he can’t access the foam, but our couch still bares the scars of his Pica. Someday we’ll replace it though.
12. We’ve All Learned about Inclusion
The kids are amazing at finding ways to include Owen. They play with him frequently, and is just one of the family. We’ve all learned to adjust, to make little changes as necessary to ensure Owen can live life with us.
He can’t do everything–LEGOs and paper and Owen just don’t mix. Sometimes he chills in his room with the iPad while the others do something else.
But, we try to include him whenever possible and safe.
13. I’ve Learned to Drive a Bus
Yes, our primary family vehicle is a short bus. It’s the only thing we all fit in.
You might blame that on all the kids, but we would have simply bought a 12 passenger van. Except for that wheelchair–12 passenger vans just don’t have any storage room!
So we bought a bus. And we love it!
14. I Found a Supportive Community
I belong to an incredible group of parents around the world who have loved ones with Angelman Syndrome. These parents get it.
They understand poop parties.
And sleepless nights.
And how you don’t want to complain because people who don’t get it will just tell you to put the kid in a home.
They get the craziness.
And I’m thankful that I found them. Without Owen, I never would have met this incredible group.
And while I only know them via the Internet, I’m thankful for them!
15. We Found Hope
Angelman Syndrome has been CURED in mice models. There have been clinical trials, and more are slated for the future. A cure for humans is on the horizon, and we have HOPE.
Hope for Owen to live a better life than we ever dreamed possible.
Hope for all the Angels out there, and their caregivers.
Hope for the future.
Help spread hope–tell someone about Angelman Syndrome today!
Angelman Syndrome is hard. It’s changed our lives. But, we’re so thankful for Owen and all that he’s taught us. We love our Angel here on earth! If you’d like to hear more about Owen’s story, you can find it here.