Today marks a global day of giving, and we would be honored if you would consider donating to the AJO Forever Foundation. Donations can be made via paypal, all donations are tax deductible.
Nothing about losing a child is easy. Nothing. But in the days, months, and years (*sigh* we are coming up on the 2nd anniversary of losing Alyssa) I needed to know SOMEONE out there knew what I was feeling. The pain is unlike anything you could ever imagine. I would rather have my heart ripped out of my body then to ever feel even an ounce of this grief. Some days I would be so sad, or angry that I just couldn’t turn the tv on, yet the sound of silence was deafening. I turned to books, as they have always been a comfort, and hobby that I have enjoyed. After Alyssa’s passing many friends, family members, even strangers bought, sent or recommended books for us to read. I would like to share that list with you now. It is my hope that if you are the parent of a child who has passed that one of these could bring you even a second of comfort.
These were wonderful resources for my young children:
If you have read any of these and would like to leave your thoughts we would really appreciate it. If you have any others to recommend, I am always looking for new reading material.
Here is the news coverage (click the link below to view) from the #AJO Poker Run and Festival. Pardon my bumbling! I was a nervous wreck :)
This year we chose to celebrate what would have been Alyssa’s 20th birthday in a big, fun, family friendly way. We decided alongside the Poker Run we would hold a n all day, family fun day! We had bounce houses, a magician, Anna & Elsa from Frozen, water balloons, games, prizes, food and so much more. It was a birthday to remember, that’s for sure!
We were able to raise a substantial amount of money, which should in turn be able to help, many, many families! We are excited to be able to give back to others that have been so generous with us the past (almost) 2 years. Enjoy the pictures, and mark your calendars for next year!
Alyssa’s name at the National Epilepsy Walk, on the remembrance wall. There are way too many names on that wall. We need a cure! Not another life should be lost to epilepsy!
The last 18 months have been a whirlwind. I knew 2 things for sure after Alyssa’s passing; I was NOT going to let her be forgotten, and that I was going to make her proud. In this last year and a half, we have been able to do some pretty amazing things. And in my heart of hearts, I know this is only the beginning. Some of my happiest times since then have come from giving.
The first thing I wanted to do was send someone to college since we wouldn’t be sending Alyssa anymore. With the help of my hometown of Erie, the community, family and friends we were able to fully fund a scholarship in Alyssa’s memory at the The Erie Community Foundation. We now have a part in awarding deserving nursing students a little extra for school. Last year we couldn’t narrow it down, and picked 3! And the best part? Long after we are gone, the scholarship will still be there. Still a tribute to Alyssa’s memory and legacy.
The next thing I wanted to do was to establish a fund so that we could give monies to other organizations that aligned with our advocacy, and mission. We have also (with your help) accomplished that.
My next mission is to fundraise so that I can purchase and distribute as many epilepsy monitors as I possibly can. Had we have had one of these devices for Alyssa, she may still be here today. They are LIFE SAVING and LIFE CHANGING!!!
Imagine being a teenager and wanting the freedoms that all teens want, but because of your epilepsy you have a worry wart mother (like myself) and have all sorts of restrictions! Now instead, you can strap on a watch (like SmartMonitor) and your mom can relax (does that really ever happen)
Imagine your young child starting school, playing outside, riding their bike, taking a shower, driving…. all with seizure activity. It’s enough to drive you insane as a parent.
Imagine knowing your loved one has sleep seizures, and the only thing you can do at night is either stay awake, sleep with them, and then suffer yourself because you can’t get a good nights sleep. Did you know they have a monitor for that too? (SAMi)
Technology is amazing. If any such devices were available when Alyssa was alive I either didn’t know about them, or they weren’t specific to her type of seizure (tonic-colonic). But technology is moving faster then we could have ever dreamed.
I don’t plan on stopping my mission(s) anytime soon, and I am sure that I will come up with even more ways to advocate, help, and spread awareness. In fact, I feel like I am just warming up!
We owe all the SUCCESS of this #ajo movement to Alyssa. It has always been, and will always be HER. She is the drive. She’s really something special.
Some people don’t understand our “success” in such a short amount of time. I use that term loosely because that success came with a VERY high price. My daughter’s life. And if you were lucky enough to know Alyssa personally, then you know what a loss her life was. If you didn’t know her personally, I try my best everyday to make strangers feel like they did. To bring you into our lives. Our victories, our defeats, our grief, and our celebrations. Sometimes all those feelings will come wrapped up in a big package.
There are so many people, business, organizations, strangers, friends, and foes that have helped us with our journey. I can’t even begin to explain my gratitude. Someday I will write out a big long thank you speech (and the music will start to play midway through, just like on the award shows).
But please know, that with every good deed, with every pay it forward, with every receipt with an #ajo attached YOU are helping! You keep this alive. Alyssa’s spirit alive. And just for that fact alone, even if we never raised another penny (I still plan on raising lots of pennies) that is enough.
On that note, I will say thank you. Alyssa Josephine O’Neill thanks you!
The AJO FOREVER FOUNDATION will begin taking applications shortly for reduced cost, or free SAMi monitors based on financial need and urgency. If you think this is something you, a family member, child, or friend could benefit from, please e-mail us at email@example.com and we will send you an application for qualification.
If your child needs to be closely monitored for abnormal activity at night you probably suffer from a lack of sleep. I know we did.
SAMi was created to address a very personal need for a reliable system that:
- Alerts you to your child’s abnormal movements with a loud alarm.
- Does not sound alarms for a child’s normal tossing and turning during sleep.
- Provides you with a quick way to see and hear what is happening. This allows you to go back to sleep if everything is OK.
- Makes recordings that you can share with your doctors.
You can learn more here SAMi Alert Monitors