Hello, lovely people! My name is Rebekah. I am a writer and teacher who lives in a very small, very old house with two chunky orange cats in Kansas City. I’ve been paralyzed for as long as I can remember but did not begin to really unpack what this unique embodiment meant to me until I was in my mid-twenties and began working with disability studies in my PhD program. As I studied for the first time things like the social construction of disability, I began to process a lifetime of memories and feelings connected to my body. While I spend a lot of time writing long-form pieces about my connection to disability, I recently started an Instagram account, @sitting_pretty; I use this account as a medium to 1) reflect on what it means to live as a disabled woman, 2) connect with others who are also processing what it means to live from a particular body, and 3) share more beautiful, nuanced photos of a body that looks and moves differently than most.
***************
Miggy: Hi Rebekah! I’m SO glad to be featuring you today on my special needs spotlight series. I know you from your lovely instagram account @sitting_pretty and I can’t remember if you found me or if I found you but I’m so glad we found each other! In addition to being beautiful, smart, poised (and a little sassy) you are also a paraplegic and a wheelchair user. A lot of your IG posts about accessibility have really struck a chord with me. But lets start at the beginning…you were born a typical and healthy child, but were diagnosed with cancer when you were 14 months old. The tumor wrapped around your spinal cord and by age three you were paralyzed. You also spent a significant amount of time in your early years in and out of the hospital treating your cancer. What do you remember about those early years? Do you remember what it was like to walk? Overall how would you categorize your childhood (or do you)? Looking back now, do you have a different view of how those early years have shaped you?
Rebekah: I actually don’t remember very much from those early years going through the chemo, radiation, and operations. In some ways, those years feel more like my parents’ story than mine. They have very sharp memories of what it was like to watch their youngest baby fight deadly cancer for years, and I have to struggle to imagine how I might have experienced the stories I’ve only heard about myself. I’ve watched the fuzzy, 1980s home-movies taken of me in the hospital with my bald head and baggy, yellow hospital gowns so many times, I wonder what I remember and what my imagination has fabricated into a makeshift memory. I do have a few very vivid clips and snippets from that time that I hold onto tightly: my dad singing songs to me while he pushes me across the street toward the hospital in my ratty blue stroller; using a permanent blue marker to draw scars to match mine on my baby doll while my mom napped; a doctor sticking my paralyzed legs with pins, shouting “Do you feel this?” I don’t remember the months upon months of nausea and vomiting from the chemo, I don’t really recall the needles or the surgeries, I don’t have a single memory of walking, and I can’t imagine what having full sensation in all of my body might feel like. In some ways this feels like a giant gift, and in other ways, it makes me feel largely disconnected from myself. Those years were incomprehensibly formative for who I am now, and I can’t recall them. (But maybe that’s the same for all of us in one way or another.)
[readmore title= “Click through to read the rest of one of my all-time favorite spotlights!”]
Meghan, thank you for sharing your and Pipers story, it gave me insight into something I know nothing about (both of my babies were 2 weeks overdue date and GIANTS compared to your amazingly beautiful little Piper.
Meghan,
I too am a mother of a 27 weeker. The difference is my son is adopted so I don't have the birth trauma you experienced – but your NICU experience is so close to home. My son has some health issues (totally unrelated to his prematurity) but other than that is now a 2 year old rockstar. I pray the same is true for Miss Piper. If I could offer one piece of advice – don't fall into the trap of comparing her to "typical" children. We had several friends have babies around my son's original due date. Their children all met developmental milestones on time where my son didn't. He was delayed in many areas as he was fighting so hard to catch up medically. I believe it was Benjamin Franklin who said "Comparison is the thief of joy" – SO TRUE. Piper will develop in her own time, in her own way. She is a fighter and has had to endure things many children her age never will experience – continue to support her and provide therapies as needed (my son is in speech, occupational, and physical therapy). She will blossom! Thank you for sharing your story!
Thanks for the great advice! Not comparing is so hard but I know it's what is best for my sanity. We are lucky to have great Early Intervention specialists who point out her strengths and help us feel good about where she is developmentally.
Meghan,
I am glad to hear that your family is now healthy and happy and home. However, I do have some comments on your response regarding how people "should" help in situations like this.
Firstly, I think maybe you shouldn't be so critical of how people express their sympathy. A lot of people don't always know the "right" thing to say by your standards, but maybe you should take a moment to appreciate that they are trying at all. Just like you are saying those moms don't know your whole situation, well, you don't know theirs either. Just accept the kind words with gratitude and grace and move on.
I also think it's a little rude to ask people for money and then say that the reason you need it is "none of their business."
Additionally, it was your husband's choice to take extra time off of work. It's not really fair to ask other people to pay for that. I understand what happened with you and the baby and the delivery were most definitely NOT your choice, but that one was. And a month off from work, while it may have felt like nothing to you, is more than most fathers in this country get. If they allowed him to take a month off and he still had a job to return to, he should be grateful for that.
Finally, regarding your advice that people should come to the NICU, you may not have all the information necessary to make such a blanket statement. You talk about being traumatized by your delivery. Some people have their own hospital-related trauma which may prevent them from visiting anyone in the hospital. There are also plenty of people, myself included, that would be terrified to get a NICU baby sick without meaning to. Is it really worth the risk? People may be staying away because they actually care a lot more than you realize. And chastising people for not saying the "right" thing or not visiting when you expected them to will only breed resentment.
Again, I am relieved you have all come out of this the best way possible. I just needed to touch on some points you may not have thought about. Have a little more compassion and understanding for others, just as you are asking they do for you.
Anon–Historically this has always been a safe place for people so share their feelings and not to be attacked for doing so. ESPECIALLY in the special needs spotlight, which I would like to remind you is an INTERVIEW. I asked Meghan a very direct question and she answered it. If you have a problem with her stating what people could have done better, well then you should probably direct your complaints at me for asking the question in the first place. Additionally, I find it just plain silly that you chastise her for her lack of sympathy/kindness by being both unsympathetic and unkind.
Oh and If you notice all through my post it says "generally" and "if you can" and "I know everyone is different".
Wow ok- let's take this issue by issue: I was asked what helps and what doesn't when your child is in the NICU. This has included what comments help and what don't. The part that is none of a strangers business is the reason she was born early, not the fact that she is early. I don't have trouble talking about my preeclampsia but I know there are many reasons babies are born early and not all are something that a woman would want to share with a stranger in the grocery store. My husband took off work through the Fanily Medical Leave Act- and I can tell you that he would have rather been at work than in the hospital any day. And he was penalized for it in more ways than losing those pay checks. There are strict rules regarding visiting the NICU when sick. I know ALL about hospital trauma, I'm saying that it is helpful to put that aside, even for a 15 minute visit, because you love us and want to support us. From your reply Anon, it sounds like you've never had a baby in the NICU. I would ask that you hold off judgement since you've never been in my shoes. Thank you Miggy, for your support. I don't pretend to know what's best for others and all I ask is they give me the same respect.
Don't listen to anything anonymous has to say. Clearly, someone who has no experience or manners. Suspicious that they even had to comment anonymously.
Thank you for sharing YOUR story and YOUR opinions.
Baby Piper Grace is a doll 🙂
Meghan, I'm sorry that your life with her has had such a rough start, I wish to your family all the best.
Liseli