The Twins Turn Two on the 27th!
We celebrated with a special celebration with all of their friends at Great Play in Cherry Creek over the weekend. Maxwell and Riley were dressed as cowboys with matching vests, boots and sparkly hats.
Last year, I spent months planning every detail of the twin’s first birthday. I was so excited that the party got a little out of control! We had over 100 guests, a face painter, balloon artist and a dessert bar with 15 different desserts. The dessert bar was so successful that we had a subsequent ant infestation.
One of my favorite moments of any 1st birthday is a smash cake. For Maxwell, the smash cake represented all of my fear, anxiety and heartache.
Maxwell could not use his hands. He had never touched my face or reached for a toy. I knew he would not indulge in the smash cake and I didn’t want people to notice or ask questions. Mark and I knew something was very wrong with Maxwell but we had no idea what to even tell people because we didn’t have a diagnosis. I couldn’t physically talk about it without bursting into tears.
As the days led up to the party, we considered cancelling to avoid the situation entire. We ultimately decided that Maxwell and Riley’s 1st birthday was a celebration of their beautiful lives and the immense joy they bring us daily. We refused to let fear overshadow a special day for these little babies.
Today is bittersweet. I reflect on the past year and truthfully, it has been very hard and mostly a blur. We heard the term SLC6A1 for the first time, followed scientists all over the world, organized a scientific symposium, started fundraising and pulled more all-nighters than all of college combined. On the home front, Maxwell has endured 10 therapy sessions a week – physical, occupation, speech, horse, swim, etc. Riley has maintained her joyous tenacity for life. It has been very difficult to balance becoming an honorary molecular biologist, chief fundraiser, running a patient organization and trying to be the best mother in the world. Our family has more perspective now than I ever could have imagined. I regularly wonder why my former life, career, relationships, etc; once stressed me out. We have cut out the noise entirely.
The worst symptoms of SLC6A1 begin between the ages of 3 and 4 years. We still have a $750,000 funding gap. We are racing against time to raise money, advance the clinical trial and give Maxwell a shot at life. Birthdays are a reminder that time continues to march forward. I would be lying if I said I wasn’t terrified.
Like last year, we are trying our best not allow fear to overshadow the twin’s special day. SLC6A1 may not steal any birthday joy. I am so proud to be their mommy and honored that God entrusted them to us. There is nothing better in life than Maxwell & Riley.
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