I have amazing friends. I do. They are generous and encouraging. They willingly overlook the many times I ignore their text messages and cancel plans. My friends make me food, pour me tea, and offer me wine.
My friends make a difference. Their support keeps me from completely losing it, even if I still partly lose it on occasion. I have found strength in their words and always know that I have shoulders to cry on.
They love me well.
But there is still something missing. The truth is, they have absolutely no idea what it’s like to raise a child with special needs, especially one with an ultra-rare syndrome.
I have been married for eleven years. My husband is my best friend, and he’s been on this journey with me from the start. He was by my side throughout the entire pregnancy and he is the most amazing father to our two boys. But as a mom, there are times when it seems like our feelings towards this journey are slightly different. There are times when I wish I could share that maternal sense I have towards my children with another mother. I wish I knew another mother that “gets it”.
The Journey to Rare Disease Week 2019 was frightening for several reasons. One, I did not know what to expect and two, I was meeting Mandy Couch, President of the White Sutton Syndrome Foundation, for the first time. Sure, we have talked hours on the phone. We have poured blood, sweat, and tears into developing this organization. But we have never met face to face. I remember pulling up to the airport, ready to embrace a total stranger when out comes Mandy through the airport doors. Instantly, that fear was gone. Instantly my heart knew that my sister had arrived. Any remaining worry melted away with our first hug, and I had finally found that other mom I’d wished for. I had found someone to share with, who completely and utterly “gets it”.
For three straight days we lived in the same house, worked on projects, and met with different organizations that could further our cause. We had downtime to be able to talk about family, life, and the future. We both love coffee and ate the same foods. More important, we both had children with White Sutton Syndrome and we both understood the ups and downs of each other’s lives.
My hope for the future is that other Moms and Dads can connect in person. For more of us to find each other like Mandy and I finally did. To be rid of that lonely, “no one else gets me feeling”, and to finally be able to exhale.
Mandy, I don’t know about you but I can not wait to see you again! I cannot wait to embrace another mom that is in the same boat. Our loved ones may be ultra-rare, but we have a group of AMAZING parents and caregivers all around the world that I hope to be able to meet some day.
To all my White Sutton Family around the world, my message for you is this: