Choosing and Being Chosen to Parent a Child With Limb Difference
Beyond Expectations - Making The Choice
Some people enter into adoption planning for a specific special need. They have the resources or it is in their heart to parent a child with that need. I was definitely not one of those prospective parents. If I am being completely honest, I was not even familiar with the term, “limb difference” when I started my adoption journey. Now even more disclosure. When I started the process, people including my agency, kept advising me to hold out for a “healthy child”. After all, I was going to be a single parent who also had a job that was quite demanding. I was far too scared to think about having a child with special needs and did not ever think I would be able to manage it all alone along with my career. One thing was true, I could not manage it all, but I will get there in a moment. The irony of that mindset and the reality of our lives now is simultaneously hilarious and stop dead in your tracks “Wow”, didn’t see THAT coming.
When I finally got brave and decided to go the special needs route, I was blown away by the immense needs listed. After waiting a year for the “healthy child” list to open and realizing it never would, I was heartbroken to find there were no children who had needs I felt I could meet. I was ready to give up hope when the email that would change my life arrived. I opened it up to see the face of my daughter smiling at me and was instantly in tears. She was absolutely adorable but not at all what I had expected. A bit older than I planned for and looking more boyish with her polo shirt and cropped hair, I was instantly in love. That was followed by almost instant panic as I realized that her special need was a physical disability. It wasn’t that I wasn’t open to it, but I just never imagined it. I am fairly active and live in Colorado where hiking is one of my favorite activities. Of course I would want to share that with her eventually, right? I am a part of an Indian dance group and Indian dance was what I had envisioned as being a major part of keeping her connected to her first culture. I wasn’t sure that would be something she would be able to enjoy. The choice between fear of this disability, my expectations and the love I already felt for her was excruciating.
Choosing Love Over Fear
After some major research and soul searching, I decided to choose love and move forward. Her special need was listed as hip dysplasia. It seemed that with some surgical interventions and rehab, she would likely be able to do anything that any other kids would be able to do so I pushed fear aside and jumped in. In a saga that is far too long to recount here, her I found out that her special need was not hip dysplasia but instead PFFD or proximal femoral focal deficiency about six months after I had accepted her referral. While she did have the dysplasia, it was more that her hip had not been formed properly along with her femur not developing as well. The result was that her left leg was actually half the length of her right leg. It seemed insane that this “detail” had been overlooked. I was thrust into having to soul search again and decide if this little girl who I already thought of as my daughter was going to be best served by me and if I was going to be able to handle this new very different reality. It was gut wrenching.
I immersed myself into the world of limb differences and PFFD and was fascinated to find that these kids were incredible! Yes, some things may be done a bit differently and yes, it was life with a prosthesis. After seeing videos of my daughter the agency asked for and seeing my little warrior in action, I realized that she did not let anything stop her so neither would I. Once again, I set aside fear and jumped back in!
My daughter defied all belief and was truly awe inspiring. I was able to visit her and I was stunned at how quickly I adjusted to seeing her both with her prosthesis and without it. When she took it off, which was often, she would walk with her little leg which still had a foot and the knee of her right leg. It was utterly amazing. It isn’t to say that I wasn’t scared. I was, but the edge had been taken off and I figured that as a team, she and I could manage anything.
Little did we know what was to come.
Change of Plans...Again
Again, in a story that would make a book, not a blog, our circumstances changed yet again. After nearly a year home that had gone blissfully well, where she was walking, skipping, dancing, paddle boarding and even light hiking, things went radically wrong. She needed to have surgery on her hip and with that, we were also going to do a procedure called rotationplasty that would make her leg much more efficient with a prosthesis. The outcome was supposed to leave her far more mobile than before and with a working “knee joint”. Instead, we had months of hospitalization, seven surgeries as well as countless procedures, medical trauma and in the end, a very high above knee amputation leaving her effectively with one leg and one very tiny stump.
I did not know if she would ever walk again. I did not know if I would lose the daughter who had just finally made me a mommy to despair and emotional distress that would push her away. The honest answer is that it is still a work in progress. A year after being released from her second hospital, we still often struggle with a variety of mobility related issues and complex developmental trauma that has indeed changed her personality and how I parent. All other blog posts and maybe even that book someday but…
She does walk and she does dance and nobody can out-hop my girl! She has even started skiing this year! It takes a team approach with lots of amazing professionals helping, but my girl is well on her way to being one of the most inspiring differently abled humans to to walk (or hop) on the planet!
Beyond Expectations and on to Acceptance
I tell this story not because it has been easy, but because it has not. From moving past my initial fears around physical “disability” and limb difference to managing a child with one leg and immense amounts of trauma, I have learned many things. First, I learned to let go of what I thought I wanted and embrace what was. I learned to let go of expectations in general and especially of myself. I changed my career before her surgeries to be more present and then during and after the medical crisis, I focused completely on her and have not yet returned to my original career. I never imagined I would be saying this but in the end, none of that mattered. What has mattered was being able to give this little girl everything she needed even when I thought I couldn’t. I look back at my original fear around adopting a child with special needs and limb difference and laugh. I strongly disagree with the cliché that God does not give you more than you can handle. Neither my daughter or I were prepared to “handle” what life had brought. What does happen though, either by God or simply by grit, is that we shed fear, love hard and keep on working to amaze and defy limits. It may not be what we want, imagine or plan for but I am fairly certain that when it came own to it, it put me exactly where I needed to me. As for my warrior hopper? No child should ever have to endure what she went through. Ever. Yet, through it all, she still shines so brightly and continues to help me choose love everyday.