Category Archives: Mom’s Posts

The posts that Maddi’s Mom writes.

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!


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
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.