What You Want to Know About Sarah Kate But Don’t Want to Ask

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In Calera, Alabama, a building sits at the intersection of US Highway 31 and County Road 22.

It’s one of those dining zombies – built to house one restaurant that closed down, followed by another and another, with no real explanation for why none of them last. It started out as a meat-and-three but has also been a seafood joint and a Mexican place. Now it sits empty within sight of dozens of new shops and restaurants.

Back in August of 2005, I sat on one side of a booth in that restaurant. I don’t remember which iteration of food was being served in those days (Mexican, I believe), but I remember one portion of that meal with vivid clarity. Sarah Kate sat on the inside of the booth to my left, and my dad sat across from me with my stepmom to his right. He’s a lefty, so that’s where he always sits when he’s in a booth.

Sarah Kate had just been recommended for selective dorsal rhizotomy surgery and I was filling them in on what that meant – the intended purpose, the procedure itself, the required post-op therapy, the risks, and the longterm prognosis. It was a weighty conversation, much of it centered on the long term.

My dad isn’t a big guy. He is of average height with a body shape the same as mine – martini olive. Neither of us has a physical presence that fills up a room. But what my dad does have is a personality that lights up a space. He has the ability to put anyone at ease, and although he can be serious and tough if the need arises – he was, after all, a high school principal for most of my childhood and teen years – the image I have of my dad when he isn’t around is of him smiling. Always smiling.

But on this day, my dad wasn’t smiling.

He was deadly serious with his questions, poking and prodding and exploring every angle of what was to happen. Sarah Kate was, at that time, his only grandchild, and he wanted to know everything I knew and to consider every possible ramification of this decision to permanently sever parts of her spinal cord. Ultimately, my dad was 100% in favor of the surgery, as I expected he would be.

At one point, while we were discussing the long-term potential, my dad and I shared a moment that I will never forget. I told him that I worried that Sarah Kate would have a hard time finding a mate; I was concerned that she would “settle” for someone unworthy of her because of her disability. I don’t remember what my dad said, or even if he said anything at all, but I do remember that we shared a look that spoke volumes, covering the topics of love and self-worth and physical intimacy, and my dad’s eyes welled up with tears.

He had the same fears.

Almost eight years have passed since then, and for the first time in nearly a decade I’m not worried anymore. It seems that Sarah Kate doesn’t have as many friends as some of her peers (though I may be wrong about that, I’m not sure), but the quality of those friends more than makes up for the (perceived) lack of quantity. Sarah Kate attracts the kids who are kind and patient, and all the rest go along on their merry way.

But it’s not just that she has kind and patient friends – it’s that each and every year that she’s been in school, there’s been a boy in her class that could be counted among those kind and patient friends. From time to time, I’ve mentioned my friend Dawn here on the blog – we became friends through our children. Her son, Ben, was in Sarah Kate’s kindergarten class and was her peer helper. He wasn’t assigned to that task – it was a relationship that developed organically.

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In first grade, she had Bo. In second grade, it was Marshall – if you’re a long time reader, you may remember Marshall from the fun run when he finished and then asked to come back to walk with Sarah Kate until she finished. Ben was in her class again in third grade, and this year she made a new friend, Connor. Our neighbor, William, though two grades ahead of her, also has played a part, watching out for Sarah Kate on the bus, making sure she made it home safely, and helping her from time to time when she needs it, and most days she plays after school with another neighbor, Sullivan.

Ever since school got out last month, Sarah Kate has worried me to death about when we could have Connor over. I wasn’t against it at all, but you know how things go…I just hadn’t gotten around to it yet. Last week, though, was VBS and Connor was attending. I set things up with his parents for me to pick him up on Friday, take them to lunch, and let him come over to play for a few hours. There was also talk of hitting the local ice cream shop, but I didn’t make good on that promise.

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Not that it mattered.

We sat in a booth, me in The Lefty Seat with Nathan to my right, and the kids across the table from me. They were a little silly, a little goofy, not at all obnoxious, and enjoying their own little world. They talked to me, of course, but as I alternated between watching them interact with each other and fighting to keep Nathan’s feet off the table and his hands out of the salsa bowl, I was comforted. Like Ben and Bo and Marshall and William and Sullivan, Connor is a nice boy with a kind heart.

She sure knows how to pick ‘em. :) But it’s more than that. It seems that the kindhearted boys pick her, too, and while there are no guarantees, of course, I’m much less worried that she’ll settle. I remember who my classmates were, but I have no idea who the kindhearted boys were when I was her age – maybe they were there and I just didn’t notice because most of my friends were girls.

Cerebral palsy can be a heavy cross to bear, and I know that her life will continue to be peppered with challenges. But it can also be a gift. Unlike her able-bodied mother, she will always know who her friends are, and I believe when she finds the man she is meant to be with for the rest of her life, her daddy and I will welcome him with open arms.

Comments

  1. says

    In tears…again! I have those same fears. The future is uncertain for Carson. We have no idea right now what his abilities will be and how independent he will be as an adult. And with his special diet, if he were to live on his own, he would have to be able to manage it himself, to cook for himself, keep up with ordering all the special low protein and medical foods, and do his own blood draws. I, too, sometimes wonder if he will be able to have a relationship. It definitely has to be someone who is willing and able to help with his diet and deal with all his issues. Someone, like you said, with a kind and caring heart. Then again, he may have to live with us the rest of our lives. I don’t know what his future will be…but one thing I do have is HOPE. For now, the possibilities are endless. Thanks for sharing and reminding me of that.

  2. Jennifer says

    You bring me to tears yet again! You have a gift with words. You make me think, so hard… sometimes harder than I want. I hope against hope that I have raised my boys to be the kind hearted children you describe. I trust SK’s judgement. She’ll never settle.

  3. says

    I love, love, love this, and you know what? I can relate SO WELL. One of my best friends throughout elementary school was a boy, and he always stuck by me. If I fell and scraped my elbows, he accompanied me to the nurse’s office. If I couldn’t participate in a certain activity, he waited on the sidelines with me. If anyone dared to say anything at all about the way I walked, he was there to stand up for me. We met in first grade and were best friends until about fifth grade. Since then, we’ve drifted apart a little bit since we weren’t in the same classes anymore, but I still consider him to be one of my good friends.

    I love that part about how SK only attracts kindhearted, patient people as friends because I feel the exact same way.

  4. says

    Love, love, LOVE!

    I cannot believe you are in Calera, we are close – in Tuscaloosa! Well, almost. We are moving there this summer so my son, Baker, who was born with DS can attend RISE.

    Blessings, friend!

    • Andi says

      We actually aren’t in Calera, but my dad lives in Montevallo (even closer to you…) so when we were in Birmingham for the spasticity clinic appointment we visited them. BUT…we are still in Alabama and I did live in Tuscaloosa for a little while before I was married (and in Birmingham for several years before and after getting married!)

  5. says

    So glad she has some great friends! My daughter has CP and whether or not she’ll have friends as she gets older, really worries me.

  6. Joanne Thuman says

    Perfectly written! I have an 8 year old beauty with cp who is “confined” (just realized this is another word I hate!) :) to a wheelchair but as you described your daughter I felt so affirmed. Raven is lovable, friendly, gorgeous smile, and fearless and super difficult to understand verbally. She has always had great friends, but always one very special boy who has loved her for 2 years now and has never looked back. I, too, am amazed at the sweet and patient friends that she attracts and the ones who aren’t so patient or understanding who want to be part of the “in” crowd and be friends with Raven. God is soo good to us that way and it makes me smile. Thank you for sharing your life with everyone. I wish we lived closer and I could be your friend. :) We live in Niagara Falls, NY so if you’re ever vacationing….

    • Andi says

      Ugh, yes. Neither of my children are “confined” but I also hate that word! Makes it sound like a prison. I’m glad to hear that your daughter has great friends, as well.

      Unlikely we’ll ever get up to Niagara Falls – I hate the cold and Mr. Andi hates flying, LOL! But if you’re ever vacationing along the gulf… :)