Our Madilynne celebrated her fifth birthday this past week. Oh, my God my little girl is 5 years old, where has the time gone. As I look at her, I think about all the obstacles that she has had to overcome. For a while it was one thing after another, but she met those challenges as she does with everything else, a smile and a determination to do it her way. For those people who now Maddi personally, they know that Maddi likes to do things her own way and does not like being “led”, but I digress. Maddi has had to fight since the day she was born, and continues to fight. Most people don’t have to fight for things nearly as hard as this little angel that is only 5 years old. In the beginning it was a fight to live and now it is a fight to do things that “typical” children seem to do with ease. I know I have said some of this before but I can’t help it, the amount of strength this little girl has is remarkable. I am glad that she has a fighting spirit, because she will have to fight for things that you and I take for granted every day. She will not have to do this fight on her own though, she has numerous people around her that will go to war for her. Maddi has a way of making people fall in love with her just by being who she is.
So what does 5 years old look like for Maddi. Well she has had a number of really good things happen. We recently moved to a house in Windham, Maine. It is a nice place that has a back yard, where she can run around and play ball, which she absolutely loves to do. Maddi is no longer in a crib. We skipped the toddler bed and went straight to a big girl twin size bed. She absolutely loves her bed, it was nice to see the huge smile on her face when she came home from school to see her bed and then to be able to bounce on it, that was great. It is moments like that where she is completely happy that I think to myself that the hard times are worth it. She does really well in her bed she has only rolled off a couple of times. She wakes up on her own and wakes us up by playing and banging on the baby gate when she is ready to come out and watch cartoons. Maddi will stay at her “school” for another year, we felt that with everything that has gone on this past year she would not be where she needs to be for Kindergarten. So all in all everything is good in Maddi’s world. She is just like “typical” children her age in a lot of things and is progressing well. As I look back at the last 5 years of her life I thank the Lord for letting our family take care of one of his Angels. She is not mine but instead belongs to the Lord up above. I just get to have custody while she is here.
I have been racking my brain for a couple of weeks now trying to come up with ideas for blog posts. I came to the conclusion that maybe I should just talk about an average day with Maddi. Our day starts when we hear Maddi through the baby monitor that we have set up. She will be 5 this summer and we still use the monitor, I think it is more out of habit than anything else. We had to use it for a long time because of the feeding tube alarms and the fact that when she was a newborn she had major heart issues. After I get her out of bed she gets dressed for the day (sometimes we have days where we stay in PJs), and I fix her “shake”. The shake started about 3 years ago while we were trying to get Maddi to gain weight so that we could get her Gtube out. Her shake consists of a 4oz container of whole fat Toddler yogurt mixed with 4oz of Pedisure. Before she can have her shake though she knows that she has to take her pills, one being a heart pill and the other is for acid reflux. If I take too long preparing her shake she starts to get cranky and whinny, but as soon as she gets it she as happy as a pig in mud. So if you can’t tell yet routine is a very big part of our day to day doings. Some of the things that go on probably do not need to happen, like the shake, but because we did it for so long Maddi has become used to it and sometimes expects it.
After Maddi gets her shake in the morning she watches cartoons for a bit until I get breakfast ready. Now I have heard arguments on both sides about allowing your child to watch TV, I do not care about those. Maddi loves the cartoons that come on Disney Jr. like; Mickey Mouse Clubhouse, Sofia the First, Jake and the Neverland Pirates, Octonauts, Chuggington, etc… I feel that these are good shows with positive messages and more importantly Maddi loves them. Here lately we have had things going on as a family on the weekends so the schedule gets messed up when we have to go out and do things, but usually after breakfast Maddi and her sister play with toys or look at books. If the weather allows we will take them out side so that they can walk up and down the dirt road or swing in their swing. Are you noticing anything yet? Her days are just like “typical” (I hate that label) kids. She loves to play and laugh often times she will fight with her sister and then do something sweet like hug her and kiss her. I have to say that a lot of times she entertains me immensely.
During the week Maddi attends Southern Maine Children’s Academy, this is a therapeutic preschool. They cater to children with developmental delays like Down syndrome and Autism just to name a couple. I think that when she is at school she works harder than “typical” kids. I say this for a couple of reasons. First, kids with a diagnosis are not allowed to have naps, this is because the state does not allow any place to bill while the child is asleep. Secondly, Maddi works with a; Physical Therapist, Occupational Therapist, and a Speech Language Pathologist, this is on top of the normal activities that they do in the classroom. By the end of the day when I pick her up she is “toast”, most times she falls asleep on the 15 minute car ride home. Once we get home she watches cartoons till dinner. We eat dinner as a family every night between 5:30 and 6:00 pm. After dinner she gets her “tubby”, and dressed for bed. By about 7pm she gets her evening meds and shake and watches cartoons till 7:30, which is when she usually goes to bed. We do kisses and hugs, I lay her down and turn on her CD. This CD is a bunch of lullabies done by the singer Jewel, Maddi has listened to this CD for about 4 years now every single night.
I hope that after reading this you get the idea that Maddi is just like any other kid, for the most part. She plays, fights, eats, and sleeps just like other children. The only difference is she has an extra Chromosome.
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.