I find it’s usually a bit helpful to know who it is we’re talking about, so let me try and break this down a little bit:
Momma C/Mommy (Crystal (that’s me) & Jessica): Two lovely lesbians who woke up one morning and decided to adopt a child with Down Syndrome. Okay, so it didn’t happen exactly like that, but sometimes it feels like it. As Jess and I began planning our lives together we knew that adoption would be our path to having a family. I had been married previously, and lived through a stillbirth and fertility issues, and I wasn’t really interested in continually having my heart broken for the sake of having a biological child.
Jessica, while loving children and wanting a family, did not necessarily love the idea of being the partner to carry a child and so this actually made our decision quite easy. Jessica’s background involves working with adults with special needs and so when the option to adopt a child with special needs was presented to us, she truly jumped for joy and pulled me along with her. While I didn’t have the experience that she did, I trusted that she was right and I’m so glad that I did because just over 6 months after our wedding, when she was 5 months old, we brought our Lily home.
It didn’t take us long to get settled comfortably into our new life and Lily is constantly surrounded by all of our extended family and friends who love her just as dearly as we do. Lily has Down Syndrome and quite the complex medical history. When we adopted her, we knew about her Down Syndrome diagnosis and, like so many other children with DS, we knew that she had an AVSD (atrioventricular septal defect). 45% of kids with Down Syndrome have a congenital heart disease, and 35-40% of those have an AVSD specifically.
Lily’s adoption placement was done rather quickly, as her caseworkers wanted a family in place before her second open-heart surgery, which took place about 3 weeks days after she came home to us. During that surgery, we were shocked to find that her surgeon confirmed a diagnosis of Pulmonary Vein Stenosis (this diagnosis gets it’s own page because it’s pretty complicated). That second open heart surgery caused quite a few complications for our tiny girl and she was finally released from Sick Kids after 33 days. Sadly, we were not meant to be home long: 5 days after we were released, Lily suffered a cardiac arrest early one morning and was without vital signs for approximately 15 minutes. We were very lucky to be living incredibly close to our local hospital and the amazing team there, were able to revive her. We were then transported, quickly, back to Sick Kids, where we stayed for another month, working through several other complications stemming from her cardiac arrest – the most devastating being the brain injury that was caused from the lack of oxygen. This caused temporary blindness, continual visual issues, seizures, and on-going delays with her physical and cognitive development. It was as though we had arrived at the hospital with a 7 month old baby and went home with a newborn, but one with a g-tube and far more therapists and appointments then we had ever expected.
We are now 3 years past this and while there are certainly a stream of everyday challenges, Lily never ceases to amaze us with her drive. She is slowly learning all of her developmental skills over again and while it’s taking longer this time around, she is determined to master all of them. She has finally figured out how to pull herself up to stand and is now learning how to bop along to whatever Disney song is playing at the time. She also has a paediatric walker and we were overwhelmed to watch her take her first steps with just a little guidance from the walker. We have a saying in our home that Lily does everything in “Lily time” and we defy anyone who tries to tell us that there is anything she won’t be able to do.
Lily’s medical issues are stable for the time being, and hopefully will continue to stay that way. So, with that in mind, Jess and I have decided that now is the right time to look at expanding our family. We have begun the adoption process again and are hoping to have a sibling (or maybe even siblings) for Lily to play with soon!