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Special Needs Adoption: Being Comfortable With Uncertainty

When we set out to do our first adoption, we had what we felt was a fairly extensive list of special needs that we would consider. Then when we were ready for adoption number two, we just blew the lid right off that list and made the list to end all lists, which even then couldn’t contain everything that we’d be open to. Because the reality is that the special needs that kids most in need of families have are often rare, and the kind no one would think to put on a list. So from the beginning, I felt like we needed to get really comfortable with uncertainty. The initial uncertainty, of course, was what special need our child might have and if we would have even heard of it. Even though I knew we could end up with a child who had a need we hadn’t heard of, I still thought that the need would fall into a certain category. I imagined all sorts of scenarios, and then Elvie’s need ended up being so rare that it didn’t factor into any of what I considered to be preparing myself by thinking of the possibilities. But still, I knew immediately that we could and would say yes if we were asked to be her parents.

In the beginning, there was very little information available about Elvie’s diagnosis beyond photos of what she looked like externally and a vague x-ray and accompanying explanation. I asked during the first phone call with the agency if they would feel comfortable with a family being willing to move forward immediately, or if they felt it would be better if anyone interested in being Elvie’s family would at least wait and find out what further tests would indicate. The agency representative said that they’d prefer that families have as much information as possible before making a decision, so I said yes, of course, that makes sense. In my heart, though, I knew that the only thing that made sense was that this baby needed a family, and we could be one to her.

It made me laugh a little when the CT scan done in Ethiopia was evaluated by a US doctor, and his response was that he could tell very little from the scan. Essentially, the information we had after waiting for the CT scan was the same limited information we had when we first asked about Elvie. We would have to wait to find out almost everything about her condition after we returned to the US. This is not uncommon in special needs adoption, or in adoption in general, and this was something for which we were prepared. We would say yes if we knew everything or if we knew nothing.

It has been fascinating to learn more about our daughter as time goes by. As much as I wish she weren’t suffering as a result of her birth defect, learning about all of the intricacies of her needs has been quite an education. I look back to the time that we knew nothing and I am amazed by how much we know just a month after bringing her home. For example, she is more prone to urinary tract infections because of differences in her anatomy caused by her birth defect. I never would have guessed that, but two hospital stays later, one of which was solely for the treatment of a UTI, and I am getting comfortable with that reality.

Even with multiple MRIs and CT scans, there is still so much to learn about Elvie. There may be for her whole life. Having walked through what we’ve been through this far, I think that perhaps the most important thing an adoptive family considering special needs can do is to evaluate how comfortable they are with uncertainty. You’re going to have a lot of uncertainties in adoption in general; if you adopt a child with special needs, you will likely have a lot more.

That said, I would go back and say yes again and again to Elvie, knowing what we know now and understanding more fully the depth of the uncertainties of the future. Special needs adoption is not for everyone, but it is very much for us. Elvie is very much for us. If I could go back to seeing her photo that first time and know that there would be multiple hospital stays, not just the one for her big surgery some months away, I would still look at her face on my computer screen and whisper, “If I’m the mother you need, then I very much want to be yours.” There may be uncertainties about a lot of things about Elvie, but there will never be uncertainty about us wanting to be her family. And maybe that’s all we really need to be certain about anyway.

 

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More on Babble:
What It Really Takes To Adopt
Back at the Hospital
Coming Home, Again

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