I watched Shawn and Liz struggle with themselves as well as each other, trying to understand what the doctors had just told them. Maddi has Down Syndrome. It was evident there were struggles and success. They struggled with their own demons and conquered them, so they could focus on the struggle that was presented to them.
When Maddi was born I watched all of those previous struggles kind of melt away. I watch a mom and dad fall in love with their perfect, precious Madilynne. They were aware of the new struggles they were about to embark on and put on their very brave faces. I saw them get so tired because they were staying up constantly monitoring Maddi’s oxygen levels. I recall Liz crying to me about how scared for her daughter she was. I was watching a mother burn more than both ends of the candle consumed with worry and anxiety about her daughter’s health. I watched a father tend to the every need of his wife and baby. I saw him struggle with how he was going to make it all work for his family. I saw him struggling with how to provide for Maddi and all her medical needs. Looking back on it now, both Shawn and Liz struggled with all of these things. I watched as they were devastated by what was medically going on with Madilynne. I saw them reach their breaking point but never went over the edge. They dug even deeper and found the strength to continue on their journey. Sure they cried, yelled, and did everything a parent who loves their child would do. What they never did was give up. Every single time they were faced with a struggle, they found their way through and grew stronger and more beautiful as persons. I have also been witness to them educating themselves. They are continuously looking for great creative ways to help Maddi flourish. Shawn has found his reason in life. It is to be an advocate for Madilynne and also, to educate people about Down Syndrome. Shawn is a student, an entrepreneur, a full time stay at home dad, an advocate, a leader, and a teacher. I could go on and on. Liz is a superwoman. Pregnant while having a toddler with Down Syndrome. Then tending to that newborn, being a mom that works, going to appointments, and everything else that goes along with it. They both perform quite the juggling act while keeping all their focus on their wonderful family.
I now see a family learning from each other, growing stronger as individuals as well as a family. Madilynne is a thriving 4+ year old full of life. They stood together during all their struggles. They supported each other through the darkest times. I cannot wait to be witness to all the spectacular things in-store for this amazing family. They are a true inspiration to anyone out there that’s having struggles of their own. Know you are not alone and you too will find you inner strength.
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
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