A Beautiful “Normal”
One of the first nights that Andrew and I felt Garrett was stable enough for us to leave the Nicu to eat dinner together, we spent a couple of hours at the restaurant across the street from the hospital. He was a few weeks old at this point and we were very new to the world of being special needs parents. We had no idea the extent of Garrett’s needs. At that point they were just medical needs. Garrett’s genetic tests had not revealed a syndrome or condition that could inform us of what his life could look like- what our life would look like. We didn’t have any answers. We just knew that our life was going to look a lot different from most people’s “normal”.
There was a small band playing at the restaurant that night, and as we sipped on after dinner cocktails we were reminded of our life before children. How many bands have we heard play in how many different ball rooms all around the world? How many hours have we spent socializing and dancing and clapping along while some of the best swing dancers in the world preformed routines right in front of us?
And then some people did start dancing right in front of us. A few tables down, a mother and a father had been eating dinner with their adult daughter. I believe she had Down’s Syndrome- and with the almost silly, but oh so genuine joy that these individuals often possess, she pulled her mother to the dance floor. Well, there wasn’t actually a dance floor. Just an open spot close to the corner where the band was playing. The exuberance with which she danced was delightful. Definitely not world renowned rhythm and skill- but such enthusiasm, and such happiness to be bopping around with her mother. Andrew and I watched them and smiled- I don’t think anyone could have kept from smiling to see these two dance together with such wild abandon.
When the family got up to leave, they passed by our table, and I told them how wonderful it was to see them dance. The mother told me “oh its one of her favorite things, we dance together a lot.” I think I must have teared up a bit, because the mother lingered and asked why we were in town- and we started talking about our son. I told her he is in the nicu, and that he is doing well- but we have no idea what his future holds. I think I really started crying at that point, because the mother (probably in her 60s) came over and hugged me. She said “it’s gonna be okay. Whatever his needs are, your life is different, but it’s gonna be okay. I wish someone had told me that when my daughter was young.”
At that point I was overwhelmed with reality. It is one thing to admire a joyful beautiful moment between two parents and their adult child who still lives under their care- and another thing to realize that this is probably a picture of your own future. As the mother talked to me about living with there (30 something) daughter, what their life looked like, what their reality was – I was truly overwhelmed. It was daunting to think that could be us in 30 years. Dancing in a silly way in the corner of a restaurant with our adult child. I think I lost it. And the mother just hugged me tighter.
Now, nearly 3 years later, I laugh at those emotions. That I was scared to imagine Garrett’s needs would be similar to a Down Syndrome’s child’s needs. How I LOVE to imagine Garrett dancing with us. How AMAZING would it be for him to be a silly joyful adult, capable of communicating and talking and laughing. I really truly PRAY for this. It no longer seems overwhelming or daunting. Just beautiful and blessed.- oh Lord give Garrett the capabilities to express himself as an adult child! Please let us be a similar picture of mom and Dad with their adult child eating together in a restaurant. An adult child so full of exuberance for life.
our beautiful normal :)
