Adelaide was born after a lengthy labor on April 17, 2012. She was perfect. Beaming up through eyes that spoke of wonder. We swaddled her and held on for hours. It felt like we could not sleep. She was too much to let go of- her small body (18″) was a ball of cuddles that we’d waited almost 39 weeks to hold.
As the weeks passed, I noticed she didn’t look like the other babies in my new moms group. She was… rounder. She was happy, and a great sleeper, but she wasn’t the same as the other babies and I couldn’t put my finger on it. Each morning as I dressed her, I saw that her clothes fit oddly, and her head struggled to fit in her onesies.
Her head is big, I remember saying to her pediatrician’s nurse as she took measurements at her two month appointment. Addie was 9 weeks… and the ball had suddenly been put in motion.
When the doctor came into the room to examine Addie, she took two looks at the measurements and whipped out her own tape measure. She looked Addie over, asked me some questions, and cooed at her tiny patient.
What was happening? I wasn’t sure. But my stomach was in my throat,
You’re right, she confirmed about Addie’s head. It was bigger, but she was also measuring a bit small. To be safe, the pediatrician ordered an ultrasound of her head and x-rays of Addie’s long bones (arms and legs) to make sure everything was working as they should be, to be performed the following Monday, but we didn’t make it that far. A few hot days later with a lethargic infant and incessant fever, Addie was admitted to our local children’s hospital. An emergency CT of her head was performed to make sure there was no abnormal fluid in her head- this called for multiple spinal taps to be attempted unsuccessfully (and without anesthesia of any kind) to check for meningitis. Due to her high level of dehydration, the tests were lacking enough fluid, and we were left to give her broad spectrum antibiotics.
Panicked, I called my mom (250 miles away) who hopped in her car and started the drive up.
Because the tests were already on the table, while admitted, Addie got her x-rays and ultrasound done. After hearing that her head and brain were fine and there were no signs of hydrocephalus, we were wheeled back to her room to wait. I tried to sleep, to read, to do something, but I was stuck in a whirlwind of what-ifs.
I’d read it all… so when a woman came in who introduced herself as a geneticist, I knew we were looking at something serious. I listened to her introduce herself and say that she just wanted to stop by and check in on us. She was asked to look at Addie’s x-rays… I stopped listening, but then she stood up, shook our hands and left.
Photo: Dimery Photography
I tried to nurse Addie, who was still having trouble eating, so I resorted to the pump. As I stood at the hospital room sink, burning my hands in the water, I looked up in the mirror to see the geneticist walk back in. I stayed there, forgoing the pain of the water for a minute. The look on her face was a nervous smile, not that of a confident woman. I sat down. I was prepared… but numb. The woman in front of me talked about the x-rays, the best doctors in Rhode Island, thorough examination…
Adelaide has Achondroplasia.
My husband asked what that was, but before he could finish his questions, I blankly said dwarfism.
I cried. A lot. I didn’t know enough about what was happening. Was this why she was sick? Would she be ok?
As it turned out, her dehydration was unrelated. She wasn’t great at latching, the summer was hot, and she had spiked a fever. That was why she was sick. Dwarfism was not an issue here.
In fact, here we are 2 years later, and dwarfism isn’t an issue anywhere. Some things are different- that’s for sure. Addie is a pro at staying still for x-rays, falling asleep with things attached to her head and body (sleep study), she can travel hundreds of miles by car without much issue to get to and from her geneticist in Delaware, and she’s encouraged to climb objects to get what she needs (where as other kids are told not to!).
When I think back to those days in the hospital, the fear and the unknowns, they scare me- how could I know so little about my own child? But they also serve as a reminder that what is different is not bad- difference is something to be celebrated and advocated. Our lives are different from most, of course… but it’s an amazing life. And that’s what means the most.
wow–I can’t wait to meet you and your family someday! To think that God chose your family and Leslie Spencer’s family to raise these 2 beautiful girls, Adelaide and Lilah, is very overwhelming! I am so glad that you recognize what a blessing you have received. Happy 2nd birthday to Addie!
Always a blessing! I was so happy to have an answer and stop fearing for Addie… no fear, no anger, just lots of love.
martinkadelux recently posted…Adelaide has achondroplasia
This is so eloquent and honest–I’m confident you’re you’re touching more people than you know!
Andrea @ Newport Stylephile recently posted…Faire Thee Well: A Sensational, Sustainable Giveaway
I certainly hope I am helping someone out there <3
martinkadelux recently posted…Adelaide has achondroplasia
I just love the way you tell stories. You had me hanging on to every word. So descriptive. I can’t imagine the fear of the unknown. I’m sure that’s what weighed the heaviest on you. But, your little is always smiling and is consumed by love. She couldn’t have gotten a better mommy! 🙂
Courtney Buteau recently posted…Birthday memories: A pony, egg hunt and a snowstorm
Certainly knowing what was going on but now knowing the future was scary, but she’s my perfect lady for sure. I’m glad she chose us! <3
martinkadelux recently posted…Adelaide has achondroplasia
I think the process of waiting would have been the worst. Knowing is more than half the battle. Now you can focus on being a mom and helping her to grow into a beautiful young lady.
Mary recently posted…A Touch of Disney Magic at the Houston Zoo
Not knowing was terrible. Knowing made everything better… and now that we’ve been in the game for a while, I know more about what to expect and where we are heading in the future!
martinkadelux recently posted…Top 10 Things About Week 14
Wow! Look at those eyes! Adelaide is beautiful!!! I’m so happy I stumbled upon your blog. Your words are so beautifully put and I can’t wait to follow the journey of your family. Thank you for sharing.
Nicole recently posted…All-Star Chef Classic
Thank you, Nicole!
martinkadelux recently posted…Top 10 Things About Week 14
Your daughter is so beautiful! That is so scary when they are sick, especially when they are that little! My second son has given us a few scares over the past 6 years, too, but you are exactly right that different is not bad, it is something to embraced. Thank you for sharing your story so eloquently.
Melissa @ SavingCentsWithSense.net recently posted…LongHorn Steakhouse: Dinner for Just $12.99 (For a Limited Time)
Yes! Exactly… It’s all a learning process and how blessed we are to have such challenges in life <3
martinkadelux recently posted…Top 10 Things About Week 14
I loved your post. It sounds like you are one strong mama and have an amazing blessing (two actually) in your lives. Thank you so much for sharing.
Shannon Gosney recently posted…How to Keep Good Going
Thank you for reading. I hope to touch as many people as possible… and share our story of love, courage and perseverance!
martinkadelux recently posted…Top 10 Things About Week 14
What a scary experience to not know what was going on! I’m so glad they were able to find an answer for you. Many times it is much easier to handle a trial if you know what the trial actually is. And then you are better equipt to adjust to where it’s really not a trial anymore. My daughter is delayed in several areas. And we are still in the long drawn out process of testing to figure out what is going on. If I just knew what was wrong, I think that would relieve a lot of the stress and worry.
Your sweet little Adelaide (LOVE LOVE LOVE that name BTW) is so precious! And I’m so happy she is becoming healthy and growing well. She will be such a treasure. You are right. Different isn’t bad. Different can be celebrated and enjoyed.
That is it, exactly! Knowing ends the battle and begins the journey- that is the truth!
martinkadelux recently posted…Top 10 Things About Week 14
I also have a son with the same condition and been through the similar experience just the mine dragged on for over a month before a diagnosis was made because we live in Africa. I take strength from you.
I’m glad you got answers… although I can imagine waiting is the hardest part. Thank you for reading and following from so far away <3
My gorgeous nephew was at birth diagnosed with the same condition, we know and love him regardless of what the doctors say, I’ve been collecting “Little People” since my own kids were little, I can’t wait to play with River,so in love with this awesome boy!!