What Living with a Diagnosis for Two Years Has Taught Me

Lately, I am having a really hard time wrapping my head around the fact that my daughter Sutton is about to be two years old!

Little did we know that two short years ago, we were about to get our world turned completely upside down. Looking back on that time gives me all the feelings. Only by the grace of God did we make it through these last two years.

Receiving a diagnosis is HARD.

The unexpectedness, the fear of the future, the unknown …. and I don’t believe that’s specific to one type of diagnosis either. If you ever receive a diagnosis of any kind, it’s plain hard. It’s almost like the stages of grief. It was the loss of the life I envisioned for my daughter. The imaginary future I had planned in my head. Dealing with anger, sadness, fear and expectations were harder than I imagined they would be, but it was necessary! I had to deal with these feelings so that I could move forward. And I didn’t move forward until I dealt with ALL of them. This stage is different for everyone, but it took me a solid year. Looking back, I don’t think I was able to breathe that first year of her life. So many appointments and surgeries to process and I was just in survival mode. After her first year, things did get significantly easier. Less doctors, less surgeries … a better grasp on expectations and definitely more knowledge.

Knowledge is power.

Knowing what to expect and what to do and learning to lean on others were going through similar experiences was immensely helpful. Living it out daily got easier. I didn’t think of Achondroplasia every single day or what she would do or when she would do them. I’ve learned to embrace how she does things different than the average child. We’ve celebrated milestones and watched her work so hard to accomplish them. We loved her hard … just like we do our other kids.

The most important thing that I have learned through this experience is that different is still beautiful, fulfilling, joyful, and life giving. I’ve learned how to have empathy for others and how to give grace freely. I’ve learned that the diagnosis that I thought was going to break me, in reality made me a stronger and better person.

If you are deep in the throes of dealing with a diagnosis just know that you are not alone. It is okay to feel all the feelings that you are. And if you ever need a friend, please know that you can reach out to me and I will listen to you!!

Danielle is married to Ryan and together they have four beautiful babies. They're raising Lexi, Abram, Sutton and Beckham on the bayou in Crown Point. She is a self-proclaimed hot mess, Jesus-loving, homeschooling, Netflix binging, crafting and party planning stay at home mom. Sutton was born with achondroplasia dwarfism so advocating and raising awareness is important to her. Most nights once the kids are asleep you will find her staying up way too late to enjoy the quiet that happens after four kids.


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