Byron was the one who was called. He texted me “4 month old baby girl with a form of dwarfism.” Without even a second thought I texted him back “YES!"

After going over her full history and diagnosis, we learned that the form of dwarfism Ivy has is called Diastrophic Dysplasia. It’s rare (1 in 500,000 births.) To give you an idea, Achondroplasia is the most common form, and it affects 1 in 20,000 births. Diastrophic Dysplasia affects all areas of the body. It affects the bones, joints, and cartilage. It also affects the hands, feet, neck, and spine. It can also affect hearing. It causes short arms and legs, but a normal size torso. Mobility will be one of her biggest hurdles due to all of the joint issues and pain. Unfortunately, Diastrophic Dysplasia is degenerative which means it will get worse over time. I’ll admit, googling her diagnosis was a scary thing. I had a million thoughts going through my head, but I knew this baby girl was meant to be ours. My husband also assured me that this was something we could handle. I remember him saying “We’ve got this.” As an amputee himself, he knows what it’s like to grow up with a physical disability, and knew Ivy’s diagnosis was something that we could take on without any doubts or hesitation.

We drove to Ft. Worth, Texas, and Ivy was placed into our family on June 4, 2019. That day had so many different emotions! We were excited, nervous, scared, happy—I think we felt it all that day. The Gladney Center was doing a story on special needs adoption, so her placement was recorded and we sat down and did interviews. It was crazy having cameras everywhere and was so different from our other 3 placements which were very private and quiet. Ivy was (and still is!) very loved by everyone at Gladney, so it was not only very emotional for us, but for everyone there who had grown to love her so much.

When we got back to the motel with her from placement, we were still feeling so many emotions. Ivy seemed so small and so fragile. (I soon realized she is not fragile at all!) Ivy, being 6 months old, had a bit of a hard time adjusting to us. She cried a lot that night. I held her and we cried a lot together. All I could do was hold her and tell her how much I loved her. The next morning she woke up, looked up at me, and smiled. We had made it through our first night together! The next night was much easier. She very quickly began to get used to us, the noise (with 5 other kids, it is always noisy!) and she quickly bonded to our other children, especially to our son Leo.

When we got home from Texas with Ivy, we slowly began to adjust to life with 6 kids, and life with a baby with medical needs. We were still learning a lot about her diagnosis and trying to connect with other families who have children with the same diagnosis. Because it’s rare, that has been difficult. We have been able to find a few families with children with DD, and have been able to connect with a lot of families with children with other forms of dwarfism. I have connected with a couple of adults who have DD, and they have been an extreme source of strength and knowledge for me.

The next morning she woke up, looked up at me, and smiled. We had made it through our first night together! The next night was much easier.

One major area of worry in the beginning was her medical care. We found that all of the orthopedic doctors we took her to here in Colorado had never had a patient with DD before. That is a horrible feeling to hear them say “Well, I’ve never treated a patient with this, but I’m willing to try!” We didn’t want Ivy being their first patient and for them to “try”. We wanted Ivy to have a team of doctors who knew everything there was to know about her diagnosis. Through social media, we found Dr. Mackenzie at Nemours DuPont Hospital in Wilmington, DE. We knew we had found her doctor when we heard about him and all he has done for so many children. And after flying to Delaware for her first appointment with him, it felt like a huge weight was lifted from my shoulders. I remember feeling so much relief walking out of that appointment. It’s not ideal flying from Colorado to Delaware for appointments, but it is so worth it and I would fly around the world to make sure she has the best medical care we can find.

When Ivy was first placed with us, her neck and back strength were very weak. She couldn’t sit up or roll over. She started physical therapy very soon after placement, and we were so lucky to find a physical therapist who Ivy responded to very well. He told me “I won’t treat her any differently than any of my other patients. I will push her to her limit.” Week after week they worked so hard together, and she started rolling over. Then, after 7 months, she started sitting up. Watching her hit these milestones and be so proud of herself was a beautiful thing. She started being able to put weight on her legs shortly after this, and on the advice of her doctor, he told us to get her a little walker to get her “up and going”. I’ll admit (and I feel ashamed admitting this) I didn’t know if she would be able to ever stand, let alone walk, because her legs still seemed so weak. And she also has severe hip dysplasia, so I worried. But not my husband—he was determined. Her doctor told us to make her a little walker out of PVC pipes since they don’t make walkers small enough (or light enough for her to move around) for children her size. (To give you an idea, she is 2 and the size of a 6-9 month old.) So my husband got to work and was so proud of this little walker he made. We sat Ivy in front of it and sat her on a little yoga block so she could get a feel for it. Within a few days, she pulled herself up to it. She squealed with happiness and sat back down and clapped her hands. She was so happy and I felt this huge rush of excitement at the thought of her actually being able to stand with this walker. Well, within a few days she was taking steps with it. And she was so happy and that made it all even sweeter. Within a week she was literally chasing her siblings around the living room. She goes everywhere with that walker. She dances, she runs. It has given her wings!

Because Diastrophic Dysplasia is degenerative, we aren’t sure what her future mobility will look like. As she gets older she will experience a lot of joint issues and pain. An adult I know with DD has told me that she can’t remember a time in her life when she didn’t have pain. Many people with DD use mobility scooters when they are older, and this will be a great option for Ivy if she needs that! For now we are making accommodations to our home to help her be able to access what she needs. We are in the process of renovating our downstairs bathroom for her and putting in a small toilet, low sink, and a shower that is accessible for her. We are also building a ramp for her to get into the house. Our biggest hope for her right now is to be able to get her a service/balance dog to help her with her balance and walking.

She was so happy and I felt this huge rush of excitement at the thought of her actually being able to stand with this walker. Well, within a few days she was taking steps with it.