This week I went to the dentist. I hate going to the dentist, but thankfully you only have to go once every 6 months. My last trip to the dentist was one that I will never forget…
6 months ago we had just gotten the news of Cooper’s diagnosis. The dentist appointment was the first “social” outing I had after we found out about the achondroplasia news. I had literally locked myself in my house and I didn’t feel like I had the physical or mental strength to face anyone, let alone talk about it.
I was uncomfortable in every way. I was huge pregnant. I had so much amniotic fluid I literally couldn’t breathe. I had to keep rotating from side to side in the dental chair because I felt I would pass out and I just couldn’t take it. It was one of the worst experiences ever. Getting my teeth scraped, suffocating laying down, dizzy beyond belief, and hands in my mouth asking me questions I couldn’t answer.
I kept it together the first part of the appointment while the dental assistant was cleaning my teeth. Thankfully I was just so uncomfortable it kept my mind off of things. But I lost it when the dentist walked in and started asking me the general questions I knew were coming, and that I had sorta prepared for. “How’s the baby?” “Do you have a name picked out?”
I had gone to the appointment just expecting to cry when anyone asked me any pregnancy related questions. My plan was just to lie if anyone asked me any questions and just play along that everything was fine. But for some reason I felt I just needed to tell them what was actually going on. I didn’t cry. I just said what I wanted to.
“We don’t really know. We just found out our baby has achondroplasia and we really don’t know what to expect until delivery. I’ve been so sick we may have to deliver earlier that expected. We had a name pick out, but now we don’t really know if it is the right one.”
It was so awkward. That was the first time I had told anyone besides close family and friends. The dentist and the assistant just stared at me. “What is ahh…achon… what is that?” They had never heard of the condition either. I explained to the it was a form of dwarfism. They were extremely nice about it and just wished me the best of luck. And from then on the appointment went pretty quick. No cavities, watch your gums during pregnancy, and see you back in 6 months.
I cried the whole way home. For the first time in about 2 weeks they weren’t sad tears. It was happy tears. I finally felt like I was ready to tell people the news.
That next night I went out to dinner with all of my close girl friends. We get together every few months, and we have a routine to go around the table and fill everyone in on what’s going on in our lives. I had only told one of my six close friends. Kacey (my bff who was the only one I had told) picked me up to carpool to dinner and she had asked me if I was going to tell the group. She felt it was time and I knew I needed to.
When we got to my turn to share around the table, I started crying while filling all the girls in on the news. Achondroplasia is a form of dwarfism. He will have short arms and legs, a big head, and possible breathing issues. We won’t know the extent of the disabilities until he is born. There are over 200 forms of dwarfism, some lethal. Ours looks okay because his chest cavity looks normal and strong, so we will have to wait to see how he does after delivery. All of my friends were so supportive and there was a whole table of 6 girls bawling and hugging each other at the Olive Garden. I’m sure people thought we were all crazy. But it was so great to get everything off my chest, and to have lots of love and support.
That night when I got home, Tommy & I came up with what we were going to tell the rest of our families and friends, and the rest of the world. We posted our news on Facebook and Instagram. Here is our post from 9/13/14…
Went in for our 29 week measurement ultrasound last week. Dr’s found some abnormalities with baby. Babies head and torso measured at 32 weeks, but arms and legs only measured at 20 weeks. After waiting all week for tests results to get back #babylowell14 has been diagnosed with achondroplasia. There will be no way to know of further disabilities until he is born, but baby will be a dwarf. We are hoping to continue to get good news from Dr’s as we learn more but we are so excited to be able to care for this little guy. Thank you so much for your love and support and we feel so blessed to be able to have made it this far with no life threatening complications. #achondroplasia
The response we got from this single post was overwhelming. Hundreds of comments and kind words. We didn’t get one negative response. Everyone was so supportive and loving and offered nothing but uplifting words of comfort. We didn’t only get comments from friends, all of a sudden people from all over the world began reaching out to us. From the hashtag #Achondroplasia our post was seen all over the world and other parents and LP’s reached out to us to offer us advise and to let us know that it would be ok.
This was the first time we started getting real answers about achondroplasia. The only thing the doctors would tell us was that we could join the Little People of America Organization to find out more, otherwise we would just need to wait until delivery.
Through the power of social media we had an entire community that we never knew existed at our fingertips. We made friends and it was so wonderful to be able to see other DARLING kids thriving and living normal lives. We were able to get a better idea of what to expect and for the first time, we started to get EXCITED to meet our little man!