How do you measure a year?

How do you measure a year?

I certainly cannot put a measurement on my love, and I’ve lost count of the times I’ve cried, but I know I am happier than I’ve ever been. I’m more complete than I ever thought I would be. I am Mom.
Mom to Addie.
Mom to a beautiful baby girl.
Mom to an amazing human, who can (and does) do anything she puts her mind to.
I am Mom to an achondroplastic dwarf.

Her name is Adelaide Eileen. One year ago, my husband and I sat terrified in Hasbro Children’s Hospital wondering why Addie was unable to break a fever, wake up or take fluids. In response to unrelated testing, we were told: “Your daughter’s x-rays are consistent with the diagnosis of Achondroplasia.”

I wrote about it HERE, in the first blog post.

Thursday, June 21, 2012, Addie and I spent the day at a local pool with a friend. I was hoping the slight fever from her shots would dissipate as she napped in the shade, and was sure to keep nursing her. But the fever would not relent- it just continued to rise. Her naps become constant sleep and I could not get her to latch. As Dave headed home from work, I packed Addie into the car with extra milk, my breast pump and some clothes for us. I knew Dave wanted to go to an opening for a friend’s new business. He never got a chance to let loose, so I didn’t call him. I made the trek with tears in my eyes, 3 miles to the hospital. Sitting in the ER and being rushed into admission, I called Dave and calmly asked him to come. Shocked, he left the event, pressed his foot to the floor and raced into the building in less time than it should have taken him.

It’s been a year since we went from this:

to this:

In the 12 months since, we have laughed, cried, hugged, bumped heads, enjoyed milestones, regained hearing, made changes, more changes, and built a community that we could not live without. A community we are celebrating nationally next week and locally TODAY at the Southwicks Zoo! We are surrounded by love.

I don’t believe I had a baby I wasn’t expecting. Addie is happy, silly, brilliant, with a sly sense of humor and a mega-watt smile. She’s not like every other baby. She won’t be like every other adult. But she is mine. She is ours. And she was meant to be.

A year ago, our suspicion that something was different was confirmed.

Adelaide has dwarfism. Her type is the most common form, called Achondroplasia. There are about 30,000 people with dwarfism living in the United States. I have said it a million times, but I don’t always believe it… Addie is like every other child, just shorter. In truth, her limbs are not the same. Her torso is [almost] the same. Her head is larger. Her facial features flatter. Her spine is not the same- not in the least. Her feet seem like they aren’t growing. Her hands are small. Like really small. She is different. Sometimes I think the sooner I admit that publicly, the sooner it won’t be true. I can go on saying that she is like everyone else but small, but she isn’t. That’s OK. It’s just a fact.

She is different.

There I said it.

A year ago, I found out that she was very different.

A year ago I found out, but I knew before they told me. I KNEW.

I have the most beautiful baby girl- I never expected to be blessed in the way we have been. Of course there are struggles (almost everyday). There are alarms on machines, therapies that seem to never end, appointments that need to fit between other appointments that fit between other appointments. Paperwork that piles up and permissions (with matching filing charges) that are almost insurmountable. There are letters that inform us of denial. They go in this way time and time again:

We pay, we write letters, we make phone calls, we argue the point. But the good always outweighs the bad. The smiles, the laughter, the giggles and shrieks, the tears that only cease after a hug, the long nights with all of us (puppy and kitty, too) in the bed. Those are what I will remember about our first year of diagnosis, learning and advocating.

I will remember falling asleep with her on Christmas Eve, during her first celebration:

I will remember this face welcoming me each morning, with sweet milky breath, and a hint of berry as she shouts her first greeting into my sleepy eyes: “HI!”

I will treasure each family moment we get and love my husband and father of this sweet girl, and future babies.

Lastly, I will remember all of the CPL drama.  I will continue to educate regarding dwarfism and work to end the use of the m-word as common vernacular in our society. I know change is hard, but telling me “no” will be prove to be more difficult. I promise.

It’s been a year. And what a year, indeed!

I’ve been able to measure the cups of coffee, the amount of sunshine or rain, the money spent and the time wasted. It’s the moments of pure joy that I cannot measure. There is no form of assessment that can quantify how incredible a year is for us. Adelaide Eileen, you amaze us, little one. Recently my friend Leslie wrote THIS post. It’s a letter I’d wish I’d been given for the statement of: hard doesn’t always mean bad.

I learned this lesson at a young age. Sometimes “hard” did mean bad, and other times it just meant a challenge. Something I was given by Him, or Her, or Who (Whom?) to remind me of my strength and courage. Not many people can relate to my life story. Not many would want to. But the reminder that sweet Adelaide chose us (she swam the fastest, after all), is proof enough that what is hard in life does not always have to be bad. It can just be different. And different can be pretty darn amazing.

Thank you for choosing us, Addie. We choose you back, everyday.

 

How do you measure a year?