Honestly, I don’t feel like I quite fit in the special needs community.
Or even the adoption community.
Our lives at one point were very much impacted by both of those things, but now it looks very normal. I drive my four kids – all in school – and I drive them all over creation. We have no special meetings, or therapists to see. We see a pediatric cardiologist just once a year. The most notable thing that makes our family different from the typical suburban family is that one of us is Asian.
My daughter has been home for 2 ½ years. She has a complex heart defect (VSD, ASD, PDA, pulmonary atresia/stenosis), and had two open heart surgeries in China. We were open to as-complex-as-they-get heart kiddos, and did not need them to be repaired. But when China hands you a file where the repairs have already been completed, you take it! Our pediatric cardiologist says he wants to high five whoever did her surgery, they did such a great job. Thanks, China!
It’s tricky having a foot in the special needs world, adoption world, and normal everyday life, but not really fitting in any camp. Since I’m not having IEP meetings, or juggling therapists, it makes it hard to fully identify with my friends that are knee deep in the special needs world. I love them and their tenacity and grit to fight and persevere for their kiddos. While we trained and prepared for that world, it wasn’t the teeny tiny reality that got handed to us in Shanghai.
It’s also tricky trying to help my “normal” friends understand the intensity and anxiety that comes with our cardio trips, or getting MRIs, or how I have to hold back from throat punching kids that kick soccer balls into my daughters chest. “Normal people” don’t understand that something as simple as going under for an MRI can have potentially catastrophic results for heart warriors.
They also don’t understand why I’m all of a sudden getting flu shots.
Or quite seriously contemplating those masks you wear when you’re sick for everyday wear (I mean, all the other Asians are doing it…).
Or the reality that her life is simply more fragile and, as a result, so is my heart.
While I’m not fully in any of the camps, it also gives me the unique ability to play different roles in them. I get to advocate and educate my “normal friends” about adoption, trauma, special needs, and the challenges that those entail. And I get to help raise awareness for my sweet special needs mamas that are just surviving, and help be a part of inclusion. While I’m not (currently) dealing with the intense demands that both the special needs and adoption worlds often include, it gives me more margin to be a support for those who are… and I’m better equipped to know how to best help.
While I initially struggled to find my place in our post-adoption world, I really love the spot it’s landed me in. Sometimes being a heart warrior mama means some really intense things – and we have plenty of those days still ahead of us.
But it also means that sometimes life looks mostly normal; and in those times I get to help support, encourage, educate, and advocate. And stockpile all the snuggles and love I can get from our girl.
– guest post by Kate
Leave a Reply