Saturday, July 11, 2015

The Giving Up and the Giving In

About a month ago, someone from our Rett community shared a link on Facebook from an adoption agency. A family was giving their six-month-old son, who had just been diagnosed with Angelman's Syndrome, up for adoption *. They already had three children. There was no explanation in the link as to why the family was making this decision. There was possibly an extenuating circumstance, maybe two, but without knowing what those were, our impulse was to feel uncomfortable reading about the family's decision. Like many of the people who'd shared the link, the story saddened us. My wife drafted an email ** to the adoption agency, appealing to contact the family, to try to understand their reasons. I don't think she ever intended to send it. I don't think either of us really wanted to know their reasons, assuming the agency would even give us a response.

It really wasn't our business, but the situation still meant something to us, and we just assumed letting these people know how we felt would change things, showing them how wrong we thought they were. This family was manufacturing a solution that would not solve their problem. There are certain problems that aren't meant to be solved. And I began to wonder -- was I envious of their ability to make that choice? Discounting the profound regret they would likely feel every day for the rest of their lives, the parents were serving a huge injustice to their other three kids, who would undoubtedly remember they once had a brother who was excised from their family when he was six months old. I don't know what it is like to be the sibling of a child with special needs, but I live with a few children who can vouch for the experience. While it must be harder to be Zoe's sibling than it is for Hannah and Dylan to relate to each other, there are things about the experience that neither would sacrifice if given the choice (whether or not I'm giving them too much credit is beside the point, at least till they get a few years older). My three children are lucky to have each other as siblings. And I don't just mean that Zoe is lucky to have the two of them. All three are lucky to have each other. It is not an exaggeration to say that Dylan might not even be here if Zoe didn't have Rett Syndrome.

Back over on Facebook, where this story started (like all great ones do), I watched about a week ago on one of the Rett Syndrome forums as a single Rett mom tried to elicit sympathy from the group about her situation. She then rejected the show of sympathy she received from another Rett mother, who'd disqualified herself because she happened to have a husband and more resources with which to face her challenges with her daughter. Apparently, a huge and rare shared circumstance was not enough to bring these two people together, even on social media. The conclusion I took was: we're all different, and maybe none of us can ever understand one another. Comparing our family life to other Rett families can be both rewarding and futile. I'm not foolish enough to think that we don't have some advantages in dealing with our situation. Money and means count for something, and we're somewhere in the middle of the curve for both. Yes, we have some privileges and some circumstances, and some resources that not everyone in our situation has. But you can do what we do for Zoe every day without any of those things. It's hard as shit, but you can do it.

I often look at Zoe and wonder what she would be like without Rett Syndrome. There are elements of her personality that are unquestionably informed by it, but there are other traits she has that have been there since the start (before she knew she was any different than any other kid). We see it in her expressions, in the choices she makes, and how she reacts to us. She might not be as precious to me if she weren't so dependent and vulnerable. Her face might not be as gracefully beautiful if it could say mean things to me, her mother, or her siblings. Without Rett Syndrome, I might be wrapped a little more loosely around her finger than I am now, but I would be wrapped around it nonetheless. We gave into Zoe a long time ago, and we could not do without her. We need her just as much as she may need us. I can understand the choice that other family made, but I am far more comforted in the fact that I never had a choice in any of what has made our family, our family.

* The fact that it was Angelman's struck a special chord with me. It's a condition very similar to Rett Syndrome. Years ago, before Zoe's diagnosis, Steph's mom had gotten an email from her sister with information about Angelman's. The context was, essentially, could this be what's wrong with Zoe? I was furious; this was back when I still told myself that nothing was wrong with Zoe. Such a time existed, but its window was small. It took me longer than it took my wife to recognize that there was anything about Zoe for which we needed to be in denial. And it took me longer to recognize that there was something wrong that needed to be identified and fixed. At the time, though, I was angry that this was being discussed among family members, certainly outside my earshot, and very possibly outside my wife's. For us, we didn't have to wait too much longer for a correct diagnosis, and any resentment I felt at those other family members passed quickly.

** I did not, until I asked my wife to preview this post, realize she actually sent the email. The message she sent is beautiful and sweetly in-your-face, much like the woman who wrote it:


I read your urgent alert about baby Spencer needing a forever home, and I have been in tears and unable to stop thinking about that child ever since. I am the mother of a child with Rett Syndrome, very similar to Angelman's Syndrome, and I wish I could speak to Spencer's birth parents and discuss their reasons for giving him up. I wish I could show them the statistics for children with special needs finding forever homes, or perhaps direct them to a site like Reece's Rainbow to see just how many children with special needs there are on the verge of aging out of the system without ever finding that family. I would love to show them pictures of my beautiful daughter and tell them that doctors and genetecists and the internet are giving them the worst possible outcomes, and cannot possibly describe the joy these children bring. 

I do not have a home study, as my family has not been looking to adopt, but I do know what it's like to care for a child with profound physical needs and feel like it's a privilege and not a burden. I know how these children make everyone around them - parents, siblings, cousins, teachers, friends - better people for knowing them. I know what it's like to receive a diagnosis after feeling like you had a perfectly healthy child, and the fear and mourning that accompany the loss of the life you planned, for yourself and your child. I certainly know that that highly-charged emotional time after diagnosis is not at all the time to make decisions as important as this, and I wish I could tell his birth parents that.  

I would love to share the research currently underway that shows a treatment for AS is not only possible, but probable; that there is evidence to suggest that it may even be reversible. I would love to give his birth parents hope when I'm sure all they are seeing at the moment is darkness. But in the absence of that, I have shared Spencer's story in the hopes that someone who is looking to adopt can see all of these things and give this sweet child the love and support he deserves.


  1. I love your gene band aids! Epigenetics is so key. I would like to pass his blog on to you in hopes of blessing your family.

    I have been working with a man with a granddaughter with Rett. Her life has improved dramatically.

    It is about how epigenetics might improve your family’s life. If you google epigenetics and Rett, you will see the Rett scientific community is doing research. However, what they do not know is that lunasin works on epigenetic level already and is already available! I believe that the information will benefit you.

    God Bless

    Have a beautiful weekend.


  2. There are those eager and willing to have a child with disabilities. Some of us just don't want that commitment and may even have some things that make it unfit. I support giving up for adoption if in that situation for any reason.