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!!!
o 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.
t 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.
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.
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.
Team Mad for Maddi 