Disability + Differences Spotlight || Vivian

My name is Shelley and this is Vivian! She is 7 years old and was born with limb differences. I live in Philadelphia with Vivian, my partner Robert, and Vivian’s big sisters Chloe (16) and Maya (14). Vivian matches up genetically with an ultra rare disorder called Kantaputra Syndrome but we often find ourselves not fitting into any one diagnosis or category. Vivian has always had challenges with speech, balance, and working memory and we recently learned that she has a brain difference that is likely the cause. As Vivian has continued to unfold, we have learned that flexibility is the best way always. She has taught us to be persistent and brave!

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Miggy: Welcome Shelley! And thank you so much for being willing to talk about Vivian and the experiences you’ve had as her mother. Can you take me back to the day you found out that Vivian would be disabled? Was this before birth, immediate after, or sometime after that? If applicable, how long did it take you to get a diagnosis? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Shelley: We approached our 20 week ultrasound like most everyone does — just wanting to know the gender of our baby! We had tickets to a show later that night and were generally ready for an awesome day. The day was turned upside down when the tech told us that our baby had bilateral clubfoot, that her lower arms and lower legs were shorter than expected and that she likely did not have fingers. I was shocked and very, very sad. We were told that it was possible that something serious, even life threatening, could be the cause. She was not a planned-for baby but was very, very wanted and loved and I was deeply worried I would lose her. In the days and weeks we waited for test results, I struggled with the fear that I wouldn’t be able to handle what would be required of me as a mom, and that she would suffer, physically and emotionally.

Though the more major genetic causes were ruled out, the doctors weren’t sure what the cause was and how severe her issues might be.Throughout my pregnancy, we never got a good look at her face or hands and so it wasn’t until Vivian was born that we knew exactly what she would look like. After delivery, we learned she had a typical (beautiful!) face, and though her hands were contracted, she had all 10 digits. The bones in her forearms were (and continue to be) about half the typical length and are bowed. Genetic testing started on her first day of life. The clubfoot was corrected with casting and braces, and she received PT and OT starting in infancy.

Balance and coordination were not what was expected but we chalked it up to the early casting. She was a late walker and talker and eventually she was diagnosed with an expressive speech delay and has been in speech therapy continually since around 2 years old. We have recently learned that she also has a brain difference, a smaller than typical cerebellum, which likely contributes to most of her motor coordination and planning challenges, including speech. It also affects some cognitive functions like working memory and Vivian uses extra support at school.Around the age of 5, a persistent doctor in the Genetics Department of CHOP matched her with an extremely rare disorder called Kantaputra sydrome. With less than 10 known cases, it has not shed much light on her condition or what her future will be.

Most of the fears about Vivian that I had in the hours and days after the ultrasound were not realized. She has always been healthy and strong. She has reassured me again and again with her strength, her humor, her persistence. That said, she is still unfolding, and most days I feel my job is just to be a witness and a mirror to show her what she already possesses.
Miggy: Could you please explain a little more about Vivian’s needs and how they affect your day-to-day life?

Shelley: At times I have felt like a part-time social worker — scheduling and attending so many medical, therapy and school-related appointments. Most everything takes longer and requires more of my attention with Vivian; multi-tasking is not a thing that happens much anymore. While we were concerned at first that the length of her arms would limit her, she has found her own way to do most everything. I certainly have had to slow down and re-prioritize many things in life since becoming her parent.

I also often feel like a translator; this has lessened over time but there are still times when it’s clear that other kids or adults don’t understand what she is saying. Vivian knows she may have to repeat herself, sometimes several times. The most heartbreaking thing is the very rare times when I myself don’t understand her. My heart breaks into a million pieces when after several tries, she gives up on me and says, “Never mind!”

Concern for her growth and safety can be all consuming at times. Until quite recently, I have been that seemingly-overprotective mom at the playground who doesn’t leave the side of her child, looking longingly at the park bench but too afraid to sit. This instinct, which I sometimes doubted, was proved right the day she tripped at the top of the slide and launched head first. I caught her by her skirt with her head about a foot from the ground. After many spills down the stairs and other accidents, it’s hard to not be paranoid. Normal things like a fever, or a spaced-out moment can cause us to panic — is she having a seizure? Is a new chapter of this journey beginning?

Miggy: What are the biggest worries you have for Vivian? On the flip side, what are the hopes and dreams you have for her?

Shelley: My biggest fear is that she will feel alone, that her differences will keep her from connection and create space between her and other people. At times, I have seen that this can be true and its heartbreaking. Most times, though, there are some kids and adults who “get her.” I worry that our choices may limit her in some way, unintentionally. Because she doesn’t fall into any specific category, at times it’s difficult to gauge her potential and I fear we could be cutting her short at times.

I hope she will see her value and beauty and will accept herself. There are some surgical options such as limb lengthening that are available to her. We have really wrestled over these; they are such big decisions to be made on her behalf. So far, we have opted not to pursue them, as we never want to give her the message that we wish she were different. We hope our acceptance of her will help her be accepting of herself.

I also really hope she won’t take herself or her circumstances too seriously. She has a great sense of humor and silliness and I hope that part of her personality will stick.

Miggy: How can people best approach or respond to Vivian? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Shelley: If I can plug your book, I’d like to say that it has been extremely helpful for us as a family to crystallize what a healthy interaction with her looks like. From an early age, she got stares and comments from other kids and we really fumbled on the best way to handle it (read: how to not show how pissed off you are and model kindness). As she’s gotten older, we are trying to empower her to have the words to answer for herself and to not shy away (no small task for a kid who is on the shy side and has an expressive speech delay). At her urging and direction, we recently went into her school to share the book and answer her classmates’ questions. We feel proud of how brave she has been.

I wish that people knew that Vivian can be treated just like anyone else. Kids (and some adults) often treat her like she is younger and that is really maddening sometimes. It’s usually borne out of a true desire to be helpful but it’s honestly not okay to offer help to a kid if they aren’t asking for it or just because they seem different. Give Viv a minute and you’ll see what she’s capable of. And if she needs help, she will certainly ask!

I wish that everyone had a more open expectation of each other in general. There are lots of times that kids will approach her and ask her name or how old she is, and then they hear her voice or take a closer look and are a bit stunned. If we as a society in general didn’t have such a narrow view of what is “normal,” these moments wouldn’t be so difficult.Miggy: Are there some ideas you had about having a child with a disability that have since changed?

Shelley: I think there can be a stereotype of kids with disability being angelic. Guess what? Even kids with differences can be annoying sometimes! Vivian throws fits, loses her temper, and pushes boundaries just like any other kid. I thought that I might get less angry or less frustrated with her in these times but that is definitely not true.Miggy: I know from firsthand experience what a special role the sibling relationship can be for children with disabilities or differences. Is there anything you’d like to share about your other children and their relationship to Vivian?

Shelley: This is one of the hardest parts for me of being a disability mom. I struggle to balance the needs of all the kids because their sister needs more attention and time and finding the energy to listen and love them individually. Also, it’s not always easy to let them be “regular siblings” that get annoyed with their sister. It’s not a situation where they have some supernatural understanding or patience with her. I have told them many times that Vivian gets enough of a hard time out in the world, I want our home to be her safe place where people understand her and are kind. I question the fairness of that and often feel that I myself fall short of that ideal.Miggy: What is the biggest lesson you’ve learned since becoming Vivian’s mom?

Shelley: The biggest thing I’ve learned is how to bear not knowing. In the beginning I wanted so badly to have solid answers, definitions and parameters. I felt I needed them to make a plan, to set expectations and to make all of his bearable. It became obvious pretty quickly that wasn’t going to happen with Vivian but I have had to learn how to live in the grey and be ready for anything.

There are times we get out of sync — there’s too much going on, one or all of us are tired, worn out, distracted, etc. — and this usually does not end well. Life with Vivian goes best when I can stay close to her, when I can be tuned in. Those are the times when I am most flexible and can widen and loosen my expectations of her to allow for lots of possibilities, knowing that what she is capable of doing may fluctuate on any given day. When we get into a rhythm, she feels comfortable, things are smoother. This requires grace for her and grace for myself.

I’ve learned to be an advocate. I was raised to bend, to not be in the way, but without a doubt, being Vivian’s mom has taught me to get louder and be persistent.

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Shelley–thank you! You said so many things I found myself nodding along to. I can certainly relate to disciplining or even just being annoyed with Lamp in public and wondering how many people are thinking, “How can she be so mean to that poor disabled girl?” Also, YES to not jumping in and “helping” if a child/person hasn’t asked for help. I think the thing that really resonated with me and made me think a little deeper was when you said you’ve told your older children that you want home to be a safe space for Vivian always as she has enough difficulty in the world… and you question the fairness of that. *BIG EXHALE* Yeah. That. I want my home to be a safe place for all my kids, and the assumption that their difficulties are somehow less difficult than Lamp’s is well, not fair. But at the same time as able-bodied kids they (and we) have specific privileges that Lamp will never know. That never ending quest for sibling balance and fairness seems especially tough for those of us with disabled, medically complex and just different kiddos. The struggle may never end, but the fight continues. Thank you SO MUCH Shelley for this fabulous spotlight. Your family is beautiful. 

If you or someone you know would like to participate in the Disability + Differences spotlight please email me at thislittlemiggy at gmail dot com. Have a great weekend and a great Thanksgiving!!!

XO,
Miggy