Wanted to dedicate my post today to a young man who has forever changed my heart ever since the first time I met him. Ethan, with great love and admiration, this post is dedicated to you.
This is a long overdue post, and frankly I have to admit that before T1D, I very much wasn’t quite aware of the struggles many families face with children who have unique needs. T1D has definitely brought a fire into my soul and has made me really rethink how I live, what I say and what other people are going through. I know that being an advocate is something very important. I must apologize for not being the best advocate in the past, but I think about you daily. Insert epic friend failure here…but before I lived with a child who had unique needs, I was much blinded by the reality those families face. Even being a nurse, it never touched the world we live in now. I love you to the moon and back.
I have known Ethan’s mom for several years…since junior high to be exact. We have been friends ever since. When we graduated, I think about 2 years went by and we didn’t really see each other, only to meet up at a local restaurant and re-enter each other’s life…for a greater purpose. Never did I know she would be a pillar of hope and strength for me. I love you guys so much.
I absolutely love this entire family; they have been there for several pivotal moments for us. They are the most perfect parents for Ethan, and I think that he chose his family wisely. I admire their dedication. In honor of who you are, what you do and how you do it…I want to raise awareness.
April is Autism awareness month…and one of my most favorite people on this earth is Autistic. Ethan. But that isn’t why I love him. I love him because of the joy he brings into the room, the light that he shares and the innocence he carries. He is indeed a strong spirited child.
I can recount the day I got the phone call from his mother, when he was diagnosed. I remember them leaving to the specialist and anticipating their call. I prayed all day long that they would finally get answers to so many of their questions. We all knew the great possibilities, but not knowing was hard. I remember her calling me and letting me know how the testing went and the outcome. She was stoic, she was full of grace, she was full of faith, and she was strong. When she spoke the words AUTISM, my heart sank. We knew the answer before they went down, but knowing the answer was hard for me.
I felt guilty. I felt saddened. I felt unsure what to say or do. I felt confused. We both have sons (about 6 months apart). My son’s birth wasn’t easy. He came out not breathing…and in those moments, waiting to find the outcome…waiting for him to take his first breath of air; I made a deal with God. I pleaded for him to let me have my son. I promised, no matter what trials we would live with, I would deal with them gracefully. I begged, no matter what may be that if I could hold my son, I would gladly take him as is and never complain. The first few hours were sketchy…but my son was alive. We were prepped for brain damage, learning disabilities, blindness, broken bones…we were prepped for the worse. With every milestone he hit, we would take a breath of fresh air. We were able to witness a miracle.
I felt it important to share our birth because perhaps it would help me express why I felt the way I did when I hear Ethan’s diagnosis. I remember crying during our phone conversation and even saying I was sorry. I felt so completely guilty that it wasn’t my son since I was the one who agreed to anything and everything as long as my son lived. I felt like I prepped myself and I made that bargain…and seeing someone I love enter this unknown world hurt because I wasn’t sure how I could ever contribute or be a good enough friend to always know their needs.
7 years later (I think…roughly) and I have been blessed to witness one of the most amazing lives. Ethan is a wonderful, loving, charismatic, exciting, intriguing boy I have ever had the pleasure of knowing. He has this heart of gold…and although he may not be able to speak exactly what he is feeling or needs; you know exactly what it is.
I remember the first time he said my name. I was in my kitchen and they had come over for dinner. I can completely remember how overwhelmed I was and completely full of pride and joy. That had to be the most precious moment in my life when my name was spoken. My heart just sang and I felt like the luckiest girl on earth. His voice fills my soul with great joy.
There are many moments in my life that he has made so much richer. I cannot express my love for this child in any other way than completely and utterly smitten by this life he leads. He stole my heart from our first meet, and will forever keep it with him.
One of my favorite moments with Ethan is when I had to unexpectedly pick him up from preschool. I showed up a bit early (better early than late) and hadn’t seen Ethan for at least a month. I went out to the play ground where the class was playing. As soon as Ethan saw me, (he had to even do a double take) he walked right up to me, hugged me and grabbed my hand and started walking off with me. He was ready to go home. One of the teachers said “oh you must be an aunt!” I cried and said “No, just one lucky family friend.” I was on cloud nine that day. I must say, I love when he holds my hand.
I remember the first time he gave me a kiss (and do not think he has ever given me one since)…he was at my house and I was watching him while his mom was at school. He took my hand and led me to the fridge and had me bend down to kiss my cheek…then proceeded to ask for a pickle. You better believe he got a pickle…in fact, he got 3 that day!
I also love when as soon as I get him in my car, he takes off his shoes and socks. He sits in the back seat expressing in his own way how his day went. I love how at ease he is with me. I love how he loves my kids and my home. We can go months not seeing each other and when we finally do, it is as if I were with him all along.
I love how, when I know he is going to be visiting, I get “Finding Nemo” and “Toy Story” out and ready to be watched and get a box of gold fish crackers just for him. On one occasion, he was using the Xbox to watch a movie and was fast forwarding through previews. One preview a snow-globe fell off the table and the snowman inside of it was falling out…and Ethan kept laughing at that part and had to rewind and watch it again; making sure I was sitting next to him enjoying the entertainment as well. I love how, when his mom came to pick him up, he didn’t want to leave. He wanted me to put his socks and shoes on for him, not his mom (he absolutely adores his mom, so this is an honor).
Once at his house, I put my purse on the counter. Smarty Pants Ethan took the stool, climbed up and grabbed my purse (knowing all too well I had gum in it) and when I went into the kitchen to get a drink…there was Ethan on top of the stool, with gum in his mouth smiling (wrappers circling all around him). He just makes me smile.
Even when I am selfish and rotten, he loves me no matter…no matter my faults, Ethan loves me for me and doesn’t expect me to be perfect.
Ethan is pureness at its best. He is perfection, he is tenderness, he is all-knowing, and he is full of greatness and my life benefits from watching simple miracles through him.
I do not know a lot about autism…but I get to witness first hand what my friends go through. I have witness the pure joy. I have witness the pure ignorance of some people who do not take the time to educate themselves. Autism is a mystery, and as small research advances are taking place…it is a wide world of unknowns. It is hard to fight a fight against unknowns.
I urge everyone to become advocates in life. To learn what you can, be sensitive to others and learn to support people, even when they do not ask. I urge you to ask if you do not understand. April is the month of my birthday, but it means more to me because it is Autism Awareness month. Learn, grow and come to understand greater things in this life. Learn to rise to the occasion and be a part of something bigger than yourself. In honor of Ethan, his family, his friends, his life…I write this post. I love you!