I just spent a week back in wonderful Rhode Island visiting my family and friends. These visits home are always filled with emotion, joy, fun and most of all reflection. When you only see your parents once a year, it is strange to see how much they’ve aged. I often wonder how much longer we will be blessed to have parents who are so healthy and active. It’s funny to think of my 75 year old father still worrying about his “baby”, me.
One of my favorite places to visit is my best friend Tara and her family. Tara has been my best friend since I can remember and we have maintained a wonderful closeness despite living 2500 miles away. I’ve written about Tara and Grace, beautiful Grace in another post. But, what I think I failed to write about was the sheer love and dedication their entire family has for Grace. As difficult it is to see my parents age year after year, it is equally as sad to see Grace deteriorate as she suffers from Rett Syndrome.
Grace is so many things, but with her Rett Syndrome, she is mostly unpredictable. She often times will wake up in a great mood, humming and smiling. Then, without notice, she can turn and start screaming for what seems like an eternity. The signs of Rett are becoming more and more evident; she is becoming more and more disconnected, she gazes up in the air, she wrings her hands and she is losing her mobility. Seeing Grace walk this year and thinking back to when I saw her last year, she has lost a lot of ground.
Tara can try to explain Grace’s struggles and behaviors, but until you experience it, words mean nothing. It’s so painful to see this beautiful little girl struggle so painfully inside and there is nothing we can do to help. Medication numbs some of her pain, but we really don’t know since she can’t communicate. At times, Tara feels like Grace is an experiment since they are always juggling medicines, doses, etc.
What is the most special thing about Tara and her family, are her four other children and David, her tender hearted husband. The kids know that Grace must come first because she can’t do things for herself. These kids aer amazing! I slept over their house last week and Sam, who is 10, made me coffee (with cream and sugar) and made Tara her tea. The household, as chaotic as it was, ran like a well oiled machine. The older kids helped the younger kids get dressed, go to the bathroom, etc. Oh yeah and they have a 1 year old dog too, which they feed, walk, etc.
Looking back, now that I am home, I feel “empty” in a way. After experiencing such a wonderful display of teamwork, love and complete and utter selflessness, I feel like I am not doing enough. There are millions of people like Tara and David, who have someone in their family who has special needs. They can’t do it alone. Thank God they have such a wonderful outlook and countless friends and family who are willing to help at a moments notice.
To all the parents out there who have children with special needs, or to those children who have parents or family members who have special needs, God Bless You. To those of us who do not live in your world, we really have no idea. We don’t know your pain, your suffering, your sorrows. Lean on us and let us help.