September 2017
The future is uncertain...no one can really tell you how we are going to feel or proceed with life. This is true for everyone.
Getting ready to celebrate a birthday is normally an exciting time, but what if that person isn't on Earth any longer? Do you still celebrate their life? Do people still put it on their calendar? What if we still celebrate? Birthday cake? Singing? Gifts? But...Gifts for others. Gifts that celebrate life. Singing to bring love, sunshine and happiness to another person that is still here on Earth. Eating cake, just to eat cake, or maybe smashing that cake because that's what they would have done.
Mag's would have been 17 on September 25th. Dan, Kate, Scott and I are quietly preparing for this day. It is unspoken. We don't know what to expect. For me, I don't know if I should try to go to work. Should I try to ignore the feelings of sorrow by busying myself with work? Should I stay home and wait...wait for what? Wait for the day to pass? Wait for someone to remember that my child, who is no longer on Earth, is having a birthday. Hide. Should I hide? I don't think so. I think I should remind people that it's Maggie's birthday and we had 16 wonderful years with her. We should eat cake! We should even have a cake fight! We should buy gifts, that she would have loved, and give them to kiddos in the hospital to make them smile. We should sing because Maggie absolutely loved singing! She loved cake! She loved having people around celebrating!
But... right now, I dread the upcoming day. I am sad. I am a little mad. I want to be selfish. I want people to still buy gifts so we can give them away to others in Maggie's honor and memory. Maggie still matters! She will always matter.
I know the world moves on. People are busy, People go on vacation and may forget to think of Maggie on her birthday. It hurts my heart because Maggie will always be celebrated in my life. She still matters to all of us. I will continue to buy things that I know would have brought her joy, but I will give them away. Hoping to bring joy and a little happiness their way like it would have brought her.
One of our goals after Mag's passed away was to find a way to celebrate her memory. Dan and Kate have endured a large amount of sacrifice while growing up with Maggie. They were and are amazing siblings. It wasn't easy, but they handled their circumstances with grace. Scott and I decided to launch The Magpie Fund with the Fairfield County Foundation. Below explains layout of the fund and how the money will be spent.
"Background and Purpose of the Memorial fund:
Maggie was the youngest of 3 kids. When she was 14 months old she started having seizures and
severe medical issues which took everyone by surprise. There was no family history of epilepsy. Needless to say, this greatly altered the typical family living we enjoyed. It took over 10 years to get answers about Maggie’s medical and learning disabilities. When Maggie was 10, she was diagnosed with Lennox Gastaut Syndrome. Prior to that, she was diagnosed with Autism, Gastro problems, and severe learning disabilities. In addition, Maggie was non-verbal so life was frustrating at times.
Trying to recognize what Maggie needed was challenging and her siblings tried to help figure out what was needed to comfort Maggie. She was in and out of the hospital for weeks at a time and her brother and sister missed out on a lot of typical kid activities. Their lives were different than their friends. They spent an inordinate amount of time in hospitals, sleeping on a pull out beds and eating from cafeterias even on the weekend. They loved their sister dearly and Maggie loved her brother and sister. It was a complete and unconditional love.
Living with Maggie as their sibling opened their eyes to selfless caregiving at an earlier age than most. As most adult’s eyes are opened when they are required to care for their parents, they experienced this as small children with their sister. This gave them a different perspective on life, individuals with special needs and gave them each a desire to take care of those who can’t care for themselves. They grew up learning to accept others who were different. Maggie helped them understand the importance of loving all people. She helped them recognize everyone has value. They included kids no one wanted to play with or others made fun of. They volunteered their free time during school to help in the special needs classrooms because they knew how to be a true friend. They developed lasting relationships and came to understand the deeper meaning of loving and caring for others.
Maggie passed away in November 2016. Her death was completely unexpected. It was devastating. In our devastation, we knew our mission had not ended with Maggie’s death. We must continue helping others. We struggled with how to do this as a portion of our lives were completely dedicated to loving and caring for Maggie. The way we knew how to deal with our grief was and is to spread love and sunshine on others. We want to specifically focus on siblings who have brothers and sisters with special needs and/or have severe medical issues. We know it can be expensive raising a child with special needs and often the siblings lose out on the extras, such as camps, vacations, extracurricular classes, and activities.
Losing Maggie has been extremely difficult but in that loss, we need to remember the impact those children have left on others. It is important we don’t forget their siblings. The sacrifices they made to improve the quality of life for their sister. They are suffering deeply too. They are trying to be strong and support us as parents, continue on with school, their lives and figure out who they are without Maggie. "
Scholarship: $1000
Write a 500-word essay outlining what it is like living with a sibling with special needs or has severe medical issues. How does your life differ from peers that do not have siblings with special needs/severe medical issues? What could this scholarship help you do something that could help you?
Criteria::
Anyone in Fairfield county of any age (up to 21)
When can you apply:
By April 1st of each year (1-time payout)
What can the scholarship pay for:
College, camps, classes (i.e art, music, etc.)
Donations can be made directly to https://donatenow.networkforgood.org/fairfieldcountyfoundation-Maggie Lyons
Starting this memorial fund means a lot to Scott and I. We will never stop celebrating her life and we will probably continue to ask all of you to help us continue this celebration of life. Let's pull together to celebrate the siblings because sometimes they can be overshadowed.
In addition, I am starting a Facebook Event page, with the intention of getting the word out about the Magpie Fund and helping others come together to spread love and sunshine to others.
I am going to do everything in my power to make other peoples' days brighter. I will be collecting monkeys to take to the hospital at Christmas time and again in the Spring. I will be collecting most needed items for Nationwide Children's Hospital.
Eat cake just to eat cake! Sing loud! Hug! Hug! Hug! Love one another instead of complaining about each other. Spread a little glitter to add sparkle to someone's day.
