Before I worked at Maddi’s preschool, I didn’t have much experience with people who have disabilities. No one in my family, and none of my childhood friends had a disability. I started at the preschool working in a classroom that had children with a diagnosis and typical peers together. The kids who had a diagnosis needed some assistance, but did really well. Never having really been around people who have disabilities, I have to admit that some of the other kids made me really nervous. Some could not speak. Some displayed extreme behaviors. Some just cried for what seemed like a long time. I was worried that I wouldn’t know what to do if I ended up working in a different classroom. I worked in the “highest functioning” classroom for 10 months before I was switched to Maddi’s classroom. It was then that Maddi started teaching me one of the most valuable and life changing lessons I have learned so far. Just because someone doesn’t have the ability to speak (yet) doesn’t mean they don’t understand, and it certainly doesn’t mean they don’t have anything to say. It doesn’t mean they don’t know how to communicate. It just meant that I had to learn different ways to communicate. Maddi knows how to talk using some signs, and shaking her head yes or no. Her facial expressions are also one of my favorite ways to tell how Maddi is feeling. Her joy is easily seen by her smile and giggle. On the other hand, a scrunched up nose, squinted eyes, and a slightly open mouth means she probably isn’t a big fan of the activity, such as when she tried touching new textures, or when she saw a puppet. The second thing Maddi taught me is not to feel bad for myself. Maddi has been through so much in her short life so far, and she never complains. Doctors appointment after doctors appointment, being hooked to machines, having tests done, and having tubes and wires taped all over her little body. In the 6 months that I worked with Maddi, she had a surgery for her ears, adenoids, and had an emergency open heart surgery. A few days, or week(s) later, Maddi was back at school, smiling and happy. Although she had some days where she was completely worn out by the end, she just kept on doing what Maddi does, never crying, whining, or whimpering. The only way Maddi ever asked for any extra attention was she would get extra snuggly, which I was happy to take advantage of 🙂 Maddi has more strength and courage than most people I know. And she’s only 4. I hope that through this blog or in person, Maddi will continue to teach people who don’t know someone with a disability that even though these people may look a little different or sound a little different, on the inside they are just the same.
By: Jessica Crouse BS Education, Ed Tech 3
The following post is something that my wife wrote a year after Maddi had her open heart surgery and subsequent pacmaker surgery.
October 26, 2010 at 11:04pm
I have been unable to sleep lately. My mind has been racing of thoughts about where we were a year ago. At about this time we were in the PICU at MMC trying to get some sleep and holding Madilynne as much as we could because we weren’t sure when we would be able to hold her again. Her 1st heart surgery was first thing the next morning. A couple nights before she was rushed to the PICU because she was having such a difficult time breathing. The doctors kept telling Shawn and I that we need to leave the hospital and try to get some rest. Were they crazy??? How can I leave my baby girl who is SO sick, how could I not be there if something happened? I had no intention of going anywhere.
The morning came all too quickly and our families all came to support us and sit with us in the waiting room for what felt like days! As they took Madilynne away to the OR, I remember feeling ok. This was just a walk in the park. Finally the doctor came out to let us know that it was over and it went great. He said there weren’t 2 holes like we had originally thought but my little angel had about 8 holes in her heart. They had to get her settled before we could see her. With a sigh of relief we waited and waited until the nurse came to get us to tell us we could see her.
Finally they came to get Shawn and I. We went in to the room and I just stared at her. She was so tiny in that big bed with more tubes and wires then I could count. Suddenly everything in my chest hurt, a hurt like I had never felt before, it was almost as if I was laying there and could feel every inch of her pain. I left the room as my stomach turned and went to the waiting room. That feeling of ok I had that morning was gone. I lost it! Totally fell apart. I ran out of the hospital and outside were I tried to catch my breath and I couldn’t. The pain was so real! The physical pain in my chest was so intense. I remember sitting out there for a long time waiting for the pain to go away. I pulled myself together and went back inside. I tried to digest what was being said to us by nurses and doctors. I gently touched her, with great fear I might add and then sat by her bed as much as I could. A week later was another heart surgery to have her pace maker put in. More anxiety and more waiting but I must say the 2nd was nothing like the 1st. One day while still in PICU I called the nurse in because I was concerned that she seemed so red in color to me. The nurse patted me on the back and whispered in my ear…”That is what color she is supposed to be”.
I look back at all the pictures posted on here and the comments that went with them and smile. It amazed me that during such a troubling time the support was just as surreal as the surgery. My daughter has been through more in her life then any child should have to go through but she does it all with a smile. She has taught me so much and I am so grateful and proud to call her my Madilynne!
A year later she is so full of life and energy! It is amazing to me how far she has come. Her teeth are almost through and we are so close to mastering sitting. She is still working on the eating thing and getting better at it day by day. Again thanks to all our family and friends for all the love, support, and prayers!
Now I might be able to sleep tonight!
When asked to put into words “my experiences” with Maddi I could not find them. When I think about Maddi and all of the times we have all I can think is love and joy. From the very beginning she captured my heart. There is such a pureness that shines through her eyes. She looks at you with love and happiness no matter what she is going through. I have been
witness to the many struggles she and her amazingly strong parents have gone through. I have watched them struggle but never give up. Madilynne is a fighter and a survivor. She has this love for people and life. A true inner joy inside of her busts out through her radiant smile and her infectious laugh. The way she just giggles and giggles, it cleanses the soul. Every time I see her we have our dance time, just she and I. We dance and laugh and dance and laugh some more. We play games, make funny faces, and make silly noises. The time I get to spend with this precious angel I cherish. Maddi has blessed so many lives. I know for certain she has enriched my life and brought so much happiness to our family.
There was preconceived idea that she would be “lacking” certain things in her life. I am not sure I see where she is lacking. Sure she may have more educational and physical struggles than others but, Maddi is the definition of love. The way she interacts with everyone, the smile on her face, and the heartwarming hugs she gives. She is such a happy little girl with so much curiosity always trying to figure something out. We should all take a lesson from this little angel and live our lives with more love and joy. Maddi is what is right in this world, pure love, joy and happiness. Let’s share her with the world through this blog and bring forth all that Madilynne exemplifies.
By: Auntie Moe