Memorial Day weekend is the anniversary of the launch of my family’s proudest mission, the Curing Retinal Blindness Foundation. Five years ago, after finding a few families with our sons’ retinal condition, we created a little website in the hopes of raising enough funds to get research moving for gene replacement therapy. More on that in a bit.
Memorial Day weekend is also the anniversary of the worst weekend of my life. Picture it: the year 2000… A young mom is enjoying her four month old son. He’s cute. He’s pudgy cute. He smiles all the time. He kicks his feet wildly for two types of music: Mozart and Disney silly songs. (Weird combo, right?) Well, that fun-loving, happiest baby ever was my first born son. And from nearly birth he would get excited for Mozart and calm down with other classical pieces. Then he’d get excited again when I put in his favorite tape (remember cassette tapes???) which was a collection of silly Disney songs. For some reason, one particular song resonated with me and it’s significance would not be recognizable for a few years to come.
That song was “Cupcakes and Lemonade”. I changed the lyrics to personalize it for my perfect little guy:
“Cupcakes and lemonade
That Mikey and Mommy made
It’ll be so nice we can laugh and play
Eating cupcakes and drinking lemonade”
I’d sing that over and over and he’d kick his feet wildly, shaking his whole body in glee, smiling…laughing… heaven.
And then one day his eyes starting shaking too. Not as in an expression of looking excitedly around the room, more like a shaking back and forth then swirling for seemingly no reason. I asked my neighbor that was a nurse if it seemed odd. She confirmed it was something to look into so I headed to the doctor’s office. It was the start of Memorial Day weekend, 2000. Michael was about to turn 4 months old.
The doctor looked at Michael for a few minutes and said “How far away does your husband work?” I was puzzled. “How quickly can he meet you at the emergency room?” I froze.
Somehow I made my way with my baby to the emergency room and as soon as Mike arrived we were whisked into a room with a big machine that would perform a big test: scan for brain tumors.
It came back negative. We were overjoyed.
And then the nightmare began. My baby was admitted to the hospital for 48 hours of tests that no baby should endure and no mom or dad should have to hold them down for. Through spinal taps, blood draws, and test after grueling test, I kept singing
“Cupcakes and lemonade.
That Mikey and Mommy made.
It’ll be so nice we can laugh and play
Eating cupcakes and drinking lemonade.”
I still cry when I sing it. I still hear myself screaming at the doctor to stop missing the spinal tap and find someone that can get it right. Hell. Pure hell.
Turns out all of those tests were done to rule out things like cancer and epilepsy and the list goes on. By the grace of God we were given all negative results. And after assembling a new team of specialists we found the root cause of Michael’s shaking eyes and ultimately the shift in our lives: Michael was simply blind. No life threatening condition. No bleak picture of surgeries and hospital stays. He was healthy enough to live a long life, he just would never see my smile or my tears.
Fast forward to now, sixteen years later. As I mentioned we started a research foundation that will lead to Michael and my second blind son having an option for vision in the future – a chance to see my constant smile and my frequent tears of joy. Together with other families we have raised more money than any of us thought possible and are funding teams around the world, making an impact on rare eye diseases daily. Interestingly enough, children and families in our town do lots of fundraisers for us – and one of the most frequent activities is: lemonade stands. They bring all the funds raised from those activities to our huge event called Bike the Basin, where the most popular activity stand is: decorating cupcakes.
Cupcakes and lemonade: Sometimes things start out bitter, but if you find the right recipe of love, friendship and faith, sweet times are just around the corner 🙂
PS- My family and the Curing Retinal Blindness Foundation are currently working with Representative Mike Fitzpatrick to call attention to needs for the rare eye disease community which include access to genetic testing that will hopefully eliminate some of the horrific tests Michael and other babies and children have to currently endure. If you would like to make a call to your US Representative to ask that he/she sign on to support our Rare Eye Disease Awareness Day, simply visit www.crb1.org/res625 for info. We greatly appreciate the support of our entire country on this issue.
