I have decided to reflect on the “state” of Maddi as we approach her 5th birthday coming up in a couple of months. In many ways Maddi is just like any other 4year old child with a sibling. She argues and pushes her little sister at times and hugs and dances with her at others. She attends a “preschool” during the day where she has speech, occupational, and physical therapies due to her having Down Syndrome.
In order to be a better parent for Maddi I have researched some of the different developmental milestones and when she will reach them. Unlike “typical” children, children with DS can be all over the place as to when they reach developmental milestones. Maddi did not start walking independently until she was about 3 ½ years old. When she took those first steps on her own, it was an amazing feeling. Some kids with DS walk sooner. The same is true for speech and behavior. Maddi still cannot talk even after having hearing aids have been put to use. Her issue with talking is a physical one, because of her hearing loss. So yea, I know that all children are different and they will do things when they are ready, but I cannot help but to feel frustration and sadness for her. We went to a preschool “graduation” and cookout for the preschool that Maddi’s sister Bailey attends. After the ceremony and the kids had eaten, there was a group of children playing and running. The age of the kids was mixed, some were younger, some her age, and a few a little older. I watched as the kids all ran around and Maddi just stood there trying to grab the kids as they ran by. She seemed happy and was laughing but I couldn’t help but think that she just doesn’t fit in. She looks like a child her age but mentally she just isn’t there. I thought to myself, “will she ever fit in, will she always be on the outside of groups?” I want her to be able to interact appropriately and play and have fun with her peers, it saddens me that she just can’t. UGH!!!
I need to share something with you guys. The 21st of May is Dunkin Donuts Iced Coffee Day. Dunkin Donuts all across Maine will donate $1 from the sale of every medium or bigger Iced Coffee to the Barbara Children’s Hospital at Maine Medical Center. The BBCH at Maine Med took very good care of Maddi during both of her open heart surgeries. The people that work there are very special, caring individuals. PLEASE help us support the excellent work that they do by buying an Iced Coffee on the 21st.
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 would like to start by letting everyone know that the Team Mad for Maddi Facebook page has reached a milestone of over 200 likes. It is because of all of you that follow, read posts, and support us that allow us to spread our message. Since God gave us the honor of caring for one of his angels, I have wanted to spread awareness and acceptance for these beautiful people. Our Maddi has changed me right down to the very core of who I am and how I see things, and I believe that she still has so much more to show me and the rest of the world.
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.
I am asking our followers for input. What kind of content would you like to see on the blog. I want this to be a community where everyone has input. So if you have input or ideas please let us know. We are always looking for guest bloggers to contribute.
I am going to be real honest in this post. Some of this may be hard to read but it was how I was feeling at the time, and I was always told that your feelings can never be bad it is how you express your feelings that is bad or not. So that being said, here we go.
My wife, Liz, and I wanted to try and start a family shortly after we were married. She always wanted to be a mom and I have always wanted to be a dad. So needless to say we were ecstatic when we found out that she was pregnant, I am not going to say we were pregnant because let’s face it being pregnant affects the woman more than the man, but I digress. I was on cloud nine; I was going to be a dad. Then the day of our first ultrasound came and everything changed forever. Looking back I should have picked up that something was wrong when the ultrasound tech left at the end of the ultrasound to “consult” with the doctor. After what seemed to be an eternity the doctor came in and told us that our baby had what is called a Cystic Hygroma, which is basically a sack of fluid that builds up around the back of the neck of the fetus. He then went on to explain that it could be a sign of the baby having Down Syndrome, but that further tests would be needed to be determined, and a lot of fetuses that have this Hygroma don’t survive for long. So we were then referred to a Geneticist. HOLY crap that is a lot to drop on new expecting parents at one time. Not only were we not sure that the baby would make it but if it did there might be something wrong with it. That is so not what I wanted to hear. I remember going to work after that ultrasound and being sent home because I couldn’t keep my shit together, all I did was cry in the back room. So after we got over the initial shock we ended up going to see the Geneticist so that we could learn what a diagnosis of Trisomy 21, Down Syndrome, meant. I remember thinking I was going to be the parent of child that was the “R” word, that word has been removed from my vocabulary that is why I didn’t actually spell it out. What are people going to think about me, they are going to pick on my child, you know things like that. Yes, I know I was being selfish at this point. I have to say, during the early stages of the pregnancy a lot of the different health professionals kept asking if we were thinking about abortion. I then found out that roughly 90% of pregnancies that have a Down Syndrome diagnosis are aborted. Even though I was not thrilled about our situation, abortion was not even an option in my book. I was not raised that way. We would face whatever came together. For the sake of space I will skip towards the end of the pregnancy . Besides a heart problem that we knew that would need to be fixed after Maddi was born the rest of the pregnancy was fairly uneventful. I do have to admit that during the pregnancy I kept my “distance”, I didn’t really develop that bond that a lot of parents do. Then Maddi’s birthday happened. The minute I saw her, everything inside of me changed. I often refer to it as a light switch being flipped. I knew that this precious PERFECT little girl was meant to teach me so very much. To this day I believe that she has taught me way more than what I will teach her. This is why I am sharing, so that she can teach the world. She is one of the most pure, loving, and happy people I have ever had the pleasure to know. I thank GOD that he gave me the privilege of being her father.