A Letter to My Daughter on her Birthday (belated)

*Note: My daughter's birthday was several months ago. I wrote this then but wasn't ready to share it until now.*

My beautiful daughter,

Today you turn 5. It seems like the time has flown by. It feels like it was just yesterday that your dad and I were on the way to the hospital to meet you. You were born at 4:00 am, all 8 pounds and 8 ounces of you. You were and continue to be the most beautiful thing I have ever seen.

At 6 months old, we began to worry about you. You weren't gaining much weight and you weren't yet holding up your head. We went to a few different doctors who all told us to keep an eye on it and follow up. Then a few months later, we went to more doctors and did some tests. We've continued this pattern on and off with you for five years now. Most of your test results so far have come back as "normal."

My happy, smiling, precious girl, those doctors and test don't know what they are talking about. You are so much more than "normal." You, my darling, are extraordinary. You light up a room when you enter it. Despite the fact that you can't talk, you are able to communicate to everyone what you want or need. You are tenacious and determined. You know exactly what you want and don't give up until you get it. I have not doubt in my mind that you will continue to do amazing things as you get older.

Daddy and I love you more than rainbows! Happy Birthday Maddy!

Maddy is Four!

It's hard to believe that four years ago, we were blessed with the beautiful girl that is Madelyn. She's the light of our lives, and is growing up so fast in some ways.

I loved every second of being pregnant (except the morning sickness, which didn't last too long for me). I had a text book pregnancy. Not a single complication or issue arose. Even birth, seemed easy. I went into the hospital around 9:00 pm and by 4:00 am the next morning, our baby girl was born.

We've had many challenges raising Maddy, but I would not change one single thing about her. (Well, maybe it'd be nice if I could get her to stop banging on my cabinet glass just so she can get a rise out of me.) While it would be nice to have answers on why Maddy's development is delayed, I try to live every every day with her in the moment. I especially plan on enjoying today as we celebrate with friends and family our funny, happy, goofy, beautiful little girl, who's not so little anymore.

Maddy's Story

I have a beautiful little girl. Her name is Maddy. She is 3 and a half years old. The time has flown by. It seems like only yesterday we were just bringing her home from the hospital.

She was an angel of a baby, good natured and happy most of the time. She slept through the night at 2 months old. What a miracle.

But by 6 months, things were starting to seem not right. She couldn't quite hold her head up yet. She wasn't able to roll over. She was born an 8 lb baby, but now seemed rather small compared to other 6 month olds. At her 6 month checkup, the doctor confirmed what my mother's intuition had been saying in the back of my mind. Something is not quite right here. Of, course, I had ignored that voice as much as possible. Our family doctor had us go see a pediatrician.

We went to the pediatrician. He sent us to a developmental specialist. And so it began. Over the course of the next several years, we've had tests after test. Maddy has had blood work, MRI's. ABR's, muscle tests, and nerve tests. We've taken Maddy to Gillette Children's as well as the Mayo Clinic. Everything has come back normal so far.

Global Developmental Delay is what they are calling it for now. For those of you that don't know, that simply means "We're not sure what's going on with her." What it means for us is that Maddy has consistently been behind with every milestone in a child's life thus far. She didn't crawl until almost a year. She didn't walk until almost 2 years. She at the age of 3, uses 5 to 7 words consistently. Along with the delays, Maddy has only slept through the night half a dozen times since she turned about a year old.

She gets help from the school in the form of ECE classes, occupational and speech therapy. We have taken her to private OT and speech as well.

While we still don't know if Maddy has a particular disorder or syndrome, she clearly isn't "a typical" child. I am starting this blog because I wanted to share our struggles to get Maddy a diagnosis. Maybe sharing Maddy's story will help us find a diagnosis. Maybe it will help other parents facing similar challenges. Maybe it will help me cope through sharing. Whatever the case may be, I feel Maddy's story must be shared.