You know it's a bad sign when it is only Tuesday and you already find yourself telling friends that "it has been a long week." What in the world is wrong with me? We only had 2 appointments yesterday and one today and yet I feel like it should already be Thursday. As many of you know, there is just something different about hospital time. It goes faster, but takes forever. It is super intense, but doesn't seem real. I don't know how Joey does it. I'm merely a chauffeur of sorts driving him up and down Exchange Street to Akron Children's or up and down 77 to some outlying post of University Hospital or the Cleveland Clinic. He is the one who is on show once we make it to our latest destination.
I recently stopped working at my full time job and have taken on the new full-time job of being Joey and Tommy's mommy. I haven’t really told very many people about this change. I’m so torn that it is hard to talk about. On one hand I have worked since I was 13-years-old. I went through 4 years of undergraduate studies, then 3 years of law school, then months of JAG Corp training in the Navy. I always prided myself on being able “do it all” no matter what. The past two years have changed that for me—for now. Shortly after Joey’s surgery I realized that if we want to help him be his best self that I would need to be 110% fully devoted to his progress. No longer would I be rocking multiple cell phones (one for personal/one for work). No longer would I be glancing at emails on my work Blackberry through every appointment and therapy session. If we want to help Joey learn to sit, crawl, walk and talk, then I needed to be there for him every single day.
It is actually an honor to have this opportunity to be with him so often and to get this time with both him and Tommy. It’s just a matter of changing my perspective. No longer do I define myself by my job. No longer do I value my role in our family by my paycheck. What I am doing now is so very incredibly important. I finally updated my Linked in profile from Director of E-Discovery Affairs to this: Writer, Blogger, Motivational Speaker and Down Syndrome Awareness Advocate Cowgirl Up!
For whatever reason that was tough for me. I am passionate about what I am “doing” now. I love writing about Joey and about the impact Down syndrome has had on our lives. I love advocating and shedding light where there is darkness. As with all change, I think there I just a little bit of growing pains.
This is what brings me to Emily. If you want to be inspired or motivated by the human spirit—just visit a children’s hospital. The hard work these children put into learning how to eat, talk, crawl, walk and more is incredible. Often working through discomfort and pain, these children do it every day. For Joey, his biggest battle right now is hypotonia. Also known as—low muscle tone. He fights it and gravity every day. Naturally his body wants to do things the easy way, but we work hard at learning how to do it all the correct way so that he can build upon each step to become a strong, young man. Yesterday we met our new Occupational therapist and we LOVE her!!! She had read all of Joey’s charts (which are just a tad bit shorter than War and Peace). She gave us two very specific things to work on before our next appointment and she was simply awesome!!! Right now we are blessed with an incredible Help Me Grow team, and fabulous Speech Therapist/Nutritionist team, an awesome Physical Therapist and now a really wonderful Occupational Therapist. I’ve said it before and I’ll say it again—it takes a village!
Monday we had Occupational Therapy (fine motor skills—think holding a pen or pushing buttons) in the morning and then a visit to a second opinion with a new ENT in the afternoon in Cleveland. Today we only had Physical Therapy and this is where we had the privilege of meeting a lovely young lady—Emily.
Joey and I were sitting in the waiting area where he was waving hello to Devon at the check in desk and where I was kissing all over him in a very ridiculous fashion while we waited. Right now he is my “nice” and “easy” child. He doesn’t throw tantrums like his older 3-year-old brother. He poops in his pants, but that’s because he is a little guy and its okay. He doesn’t talk back to me. He eats whatever I give him. Joey is pretty much the polar opposite of where Tommy is right now (defiance, defiance, defiance, control, control, control) and he reminds me a lot of what Tommy used to be like when he was 14 months old. In the meantime, I just love up on Joey as much as possible because he gives such good feedback and I try to exercise every ounce of patience I can muster with his brother while also trying to love up on him as much as possible even when that means spending a lot of time with him in time out (time out is often where I get the most kisses and "sincere" apologies from Tommy for hitting/kicking/spitting or whatever other activity he has embarked on for the moment).
While we were having our love session in the waiting room, a young girl came over to look at Joey. He has this effect on kids of all ages. I don’t know what it is, but we can’t ride an elevator, sit in a waiting room or go to a store without attracting children immediately to look at him and talk to him. Kids must have some innate sense of goodness- that is all I can think of.
Anyways, this young girl came up to us and I said, “Would you like to see the baby?” She said- “Yes- how old is he?” I told her that he just turned one in August and that his name was Joey. “What is your name?” I asked.
“Nice to meet you, Emily. How old are you?”
“I am nine, but I will be ten soon.”
In the meantime I could see the scar in her neck where she had once had a trachea. She had lovely, long and wavy red hair and small wire-rimmed glasses. I asked, “When is your birthday?”
“December” she replied.
“Are you kidding me, Emily? December 15 is my birthday!”
She went on to tell me about her leg braces and how she was learning to walk better. I told her that Joey didn’t walk yet. She seemed shocked. I told her that no, he didn’t walk, but that he just started sitting and soon we would hopefully work on crawling.
In a seriousness that only a child who had spent years and years in and out of hospitals could posses, she asked me one last question before our appointment began, “What disability does Joey have?”
“Well, Emily—he has Joey syndrome.”
The dear girl—she just looked at me like I was crazy (which I basically am). I laughed and said, “I’m just teasing. He had open heart surgery in June and he also has Down syndrome.”
I like the idea of Joey syndrome. It was one of George Estereich’s thoughts in his book The Shape of the Eye. He said his daughter had Laura syndrome. That is really what each of our kids has, isn’t it? They may have almond shaped eyes, congenital heart defects, greater risks of cancer and Alzheimer’s, but at the end of the day, they are each such amazing and beautiful individuals.
Meeting Emily helped remind me of how hard some of us have to work to do the things that most people take for granted. Whether it is help eating, sitting, crawling, walking or talking, it is not just the end result, but the journey and the beautiful individuals we meet along the way like sweet Emily.