On letting go of goals [Caitlin]

This has been a difficult few weeks in our household. I’ve been debating how much I have wanted to talk about this publicly, but I have also promised myself that I would be open about the challenges of parenting Caitlin, so here goes.

Our experience with parenting a child with Aicardi Syndrome has been that families typically turn to either faith or science as a way of coping with their experiences. We, as a family, chose science, for a long list of reasons that I’m not particularly interested in discussing at this point. We have chosen science and medicine, and have been happy with that choice. This is not to say that others who made different choices are wrong, or that one has to choose at all. This is just what has worked for our family.

Over the past few weeks, we’ve discontinued speech and physical home therapies for Caitlin. This is not a decision that has been taken lightly by any of us. Both therapists have worked with Cait since she was 18 months old–nearly 8 years for each of them. They have been through seizures, through surgeries. Both her PT and her Speech therapist worked for years on these skills, never flagging in their belief in Caitlin’s abilities. They helped us work with the school district for years.

We pushed, all of us, HARD on these therapies, doing our best to maximize Caitlin’s abilities and possibilities, particularly once we got her seizures under control. Caitlin was developing skills. For a while, she was cognitively at age (our Speech Therapist thought she might even be gifted, but unable to communicate that, for a while), and was making enough progress that we thought she might stand, might walk, might be toilet trained, might eat by mouth if we just worked hard enough. If we just fought hard enough to give her the right tech, found the right tasks and rewards to motivate her to do these things.

Because, in our family, we have always been able to leverage our intelligence and work ethic to achieve goals. We have been pretty successful doing so.*

This model (intelligence+hard work = success!) doesn’t work for Caitlin, and that’s a very difficult lesson to face in light of 30+ years of conditioning and repeatable results on our parts.

Caitlin has plateaued cognitively as well as physically. While she is 9 years old, she has not made progress in these areas. Cognitively, she’s about 5. She has not made any progress forward for the past three years. This is what Aicardi Syndrome is, and what it does. We have seen it with other families, too.

This is not a scenario in which we think that anyone is to blame, or isn’t working hard enough. The results are repeatable here. But they are not the results that we were hoping for.

I’m not sure I quite have the tools to handle the results I’m being asked to accept just yet.

I must accept that my daughter is developmentally delayed, in addition to the significant physical disabilities that she has and I have already accepted.

I must accept that Caitlin will grow physically in size, but not in physical or cognitive abilities. She will get more and more ill as time goes by, and have further difficulty recovering from those illnesses, if our recent bouts with pneumonia and a stomach bug in the past year are any indication.

Because even if Caitlin will never use the potty, or run around with the other kids, or understand grief or sadness in the way that I do (she processes these things *radically* differently) she can still tell me she loves me using sign. She can still choose which movie she wants to watch, or which shirt she’d like to wear today. She can still smile and be happy. She can still have friends who read to her, talk to her, and tell her stories and secrets.  She understands that we love her to pieces, just as she is.

In short, I must accept that Aicardi Syndrome has won, despite our best efforts.  I must accept that there is no such thing as parenting skills so mad that they can beat this syndrome.

This week, a seven-year-old girl with Aicardi passed away. She was a lot like Caitlin in terms of abilities and cognitive level and general health.  I must accept that one day, our family will go through the same thing.

Knowing this intellectually and accepting it emotionally are two very different experiences.

Until then, it’s my job to keep Caitlin as happy and loved as possible, and not to worry about the things she’s not doing. And to try to find ways to support Michael as he does all of the needful things to make this possible, to make Caitlin’s life as full of awesome as we can jam it,  in the time that we have left with her.

*I have very visible, public successes (ALL of which would not have been possible without Michael’s support) that I can point to and feel good about as a counterbalance to our challenges. The same cannot yet be said for Michael. Our family functions on an unusual social model in the sense that we’ve essentially swapped gender roles, where I’m the professional and the breadwinner, and he’s the stay-at-home caregiver. His nascent writing career comes in sometime well after taking care of Caitlin and me and keeping the household running. He has made massive sacrifices for our family, in a way that I have not had to. His successes, when they have come, have thus far been small. And private. And often don’t have his name on them for a lot of solid reasons. WHICH SUCKS, and is NOT FAIR. But that is how life is right now. If you are LJ friends with him, you can read his take on Caitlin’s stopping therapies for yourself.


About Lynne M. Thomas

Lynne M. Thomas is a nine time Hugo Award winning editor and podcaster. In her day job, she is Head of the Rare Book and Manuscript Library at the University of Illinois at Urbana-Champaign.
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8 Responses to On letting go of goals [Caitlin]

  1. Like I said to Michael on LJ, thanks for sharing what you’re going through. I feel privileged to have met all three of you, and my thoughts are with you.


  2. You are all successes and have won this beyond words already. I am awed by how strong and loving you and your family are. All my good thoughts are with you.


  3. So sorry for what you’re going through. But happy you have each other’s love and support, and that Cait continues to bring you joy. You are an awesome family, but you don’t need me to tell you that.


  4. As a mom myself, I can’t imagine how difficult it would be to make that kind of a decision, to have to accept that sometimes science just isn’t enough. Hopefully that will change — someday.

    My heart goes out to you and your family. Just keep focusing on making her life as awesome as possible! That’s the best any parent can do.


    • Lynne says:

      Thank you. We don’t have any expectation that it will change, based on Caitlin’s syndrome and prognosis, so we’re doing our best to focus on the awesome, and to let the other things go as much as we can.


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