Author Archives: madformaddi

Honest Reflections of a Dad

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,DSCN0669 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.DSCN0676 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.

She Changed Me

  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.   Jess blogMaddi 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

year later  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!

year later 2

Now I might be able to sleep tonight!

MadsWhen 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

How I felt when we found out!

No Shawn and I aren’t really going to Holland…physically, but we are going to embark on a life long adventure….this poem really explains it better then I EVER could. We found out that Madilynne has Downs Syndrome.

Welcome To Holland
by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Meet Our Team

First of all thank you for stopping by and taking the time to read our blog. We hope that we are able to enlighten people as to the beauty and diversity that people with Down Syndrome posses.
Our team is an extension ofTeam Pic our family, and it is starting to grow. The star of the team is our daughter Madilynne Small, commonly known as Maddi. I am Maddi’s dad, my name is Shawn, Maddi’s mom is Liz, and Maddi has a younger sister named Bailey. Since I haven’t asked people if it is ok to use their names I will just describe some of the other members. There are an assortment of “aunties”, there are a couple of actual Aunts, her Godmother, and some of her wonderful therapists and teachers, and countless others.
I am new to this blogging thing but I swear I will get better. I plan on having different “guest” bloggers on a regular basis. I want people to get a sense of how others have been affected by their experiences with Maddi or people with down Syndrome in general.