Clubfeet & Other Imaginings

When I look out at the 20 students in my classroom, I sometimes wonder how many of them are in the present  . . . and how many are already eating lunch or enjoying afternoon play date or up too late studying for test.  What sets humans apart is our ability to imagine the future, to intellectually and emotionally inhabit a space that does not yet exist.  Vision is a beautiful thing. Sometimes.

And then there are those moments when, say, my husband is an hour late coming home from an evening event, with no text-planation.  By the time I hear the key in the lock, I have imagined the crash, the phone call, the funeral arrangements; I have made painful decisions about where to go, how to live, and shed a tear or two as I pre-live the stunning eulogy I will deliver.

Living in the present is often associated with Eastern religions and associated meditation.  But we also have these words from the Sermon on the Mount:

Consider the lilies of the field, how they grow; they toil not, neither do they spin: And yet I say unto you, That even Solomon in all his glory was not arrayed like one of these.

Wherefore, if God so clothe the grass of the field, which to day is, and to morrow is cast into the oven, shall he not much more clothe you, O ye of little faith? . . . Seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you.

Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.

Last month, at the 20-week ultrasound, the doctor told us that our daughter had a clubfoot.  She referred me to a high-risk fetal medicine specialist for a second opinion — and to check for other possible chromosomal disorders (which google instantly reported as: Spina Bifida, 13% concurrence rate).

In the five intervening days, I became an expert on club foot, the Ponseti method, techniques for bathing and caring for a child who would be in a cast for the first 8 weeks of her life and in braces for next two years.  I learned that Kristy Yamaguchi and Mia Hamm had begun life with this particular challenge.  I watched myself drive two hours each week, starting on my daughter’s fifth day of life, to the nearest medical clinic equipped to cast her little leg correctly.  I imagined dragging her and my post-partum self through the Texas heat to multiple appointments. I saw myself sewing sleep sacks big enough to accommodate the bar between her legs.

And when I felt I could handle clubfeet – with aplomb! – I allowed myself to imagine spina bifida, to read those blogs, to envision surgeries and my heart coming undone at my daughter’s pain.

Five days later, when the high-risk doctor found a sealed spinal column, one vision of the future instantly melted away. But when he found two “normal” feet, I was disoriented.  I had replaced one vision with another and now was returning to the original vision.  It was exhausting.

I felt a surge of gratitude that this particular challenge was not mine and hers to bear.  But I also feel a bit powerless, caught between the power of conjuring visions for the future I want to claim and the futility of trying to predict what next year, or even tomorrow, will bring.  This I know (more than I knew a month ago): my daughter will experience pain, my heart will become undone. I just can’t predict the form.

The same day the doctor gave my baby a clean bill of health, I received a long letter from an old college friend. Two of her four children have significant developmental delays, and the physical and emotional burden of care is significant. Daily victories are measured in a four-year-old walking one more step today than he did yesterday. Yearly victories are measured in a 10-year-old waving instead of hitting for attention.  I will not succumb to the temptation to say, “I couldn’t do what she does” or “I don’t know how she does it” – what choice does she have, really? This wasn’t the future she envisioned during our late-night college talks.  But I will say that I deeply admire the depth and strength of my friend’s love.  Just as I admire the strength Tracy’s love. Tenacious, beautiful, stubborn love is a vision worth embracing.

Perhaps that’s the only safe vision, though “safe” may be the ultimate irony. While struggling to “consider the lilies,” to live here now, I can allow myself to envision how much love I will feel for this baby girl, how much my heart will grow even as it sometimes breaks.  Until then (and then and then), today’s challenges are sufficient until tomorrow, and tomorrow, and tomorrow.

 

Deborah

Deborah is K-12 educator who nurtures a healthy interest in reading, writing, running, ethics, mystics, and interfaith dialogue.

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24 Responses

  1. Conifer says:

    My son was born with clubfeet — not genetic clubfeet, but the equivalent because of being breech and sitting on them so long. We didn’t know until after he was born. We did the serial casting, a surgery on one of his Achilles tendons, and braces for what felt like forever. It was hard, but he’s okay now — he still can bend his feet forward and in more than anyone else I’ve ever seen, but he can bend them just fine all the other ways, too, so I don’t worry (too much).

    We’ve had plenty of scary experiences since and he’s only 4 1/2. It can be stressful to think about, but at least kids are durable. My 1 1/2-year-old girl has fallen face first off the furniture twice today — not normal for her — and she’s fine. Kids really are pretty tough and they heal up amazingly well.

    I agree that the scariest and most stressful part is the “what if” scenarios. I do that way too much and I try not to. It does absolutely no good.

    And I’ve got to say that I really appreciate the part where you talked about how unhelpful it is to think about how you couldn’t do that or how the other person is so strong. I got a lot of that after my mother died and it really sucks to hear. It’s not comforting. Like you said, you can do anything when you have no other choice. You deal with the circumstances you have the best you can and try not to worry about the rest.

    • Deborah says:

      So glad your son is doing well, and hope that those other scary experiences have similar positive endings. When I was in the midst of research, I was relieved to learn that, because the treatment largely ends by year two, it would be part of *my* memory, but not hers.

  2. Tracy M says:

    Really, really love you Deborah. Your baby is going to crack your heart open over and over in ways you cannot even fathom, and you are going to be a spectacular mother. Thank you for sharing this, and for the love you share with me and so many others.

  3. Kelly Ann says:

    This is fabulous. I love how you express your feelings. I continue to root for you and your baby! Although the more I hear, the more the idea of being a parent terrifies me …

  4. spunky says:

    You have amazing strength, Deborah, to be able to write about something so emotional. Your child has a very good mama!!!

  5. Alisa says:

    I agree with so much of what you say. Women (and mothers) will do whatever it takes to deal with what life deals them. You may not choose it, you may only get by, or your may flourish, but you do what you need to do.

    This post catches me at a really raw time. My baby has a neurological disorder and we’re not certain what his outcome will be. 85% of the children with this disorder are severely cognitively disabled, 20% develop autism, 20% die before they reach 5 years old. Our son seems to be doing very well, but it doesn’t keep me from staying up all night staring at the video monitor, making sure he’s not having a seizure. And with my husband out of work, I have to work, rather than being home to help him work on overcoming his developmental delays.

    Yet your post is exactly what I need: to focus on the present. Thinking about the future, wondering if my child will have normal or delayed cognition, wondering if I will have to work forever, wondering if I’ll be able to care for my child, wondering about the details of who will drive him to preschool or be there when he gets home from kindergarten (assuming he’s able to do these “normal”) activities, just drives me crazy. It interferes with enjoying what we have now. We have so many blessings, but it can be hard to focus on those sometimes. I need a rest. I need to be more present.

  6. Duerma says:

    What a harrowing emotional experience! I’m glad your daughter seems to be all right for now. May she continue to grow into a healthy baby girl.

    I agree fully with you about the “I could never do that!” comments. I got that a LOT when I first had my twins, and the comment just seems so absurd. So what would you do instead? Kill your kids, put them on the doorstep to an orphanage, commit suicide, etc? Of course not. You’d suck it up and deal with the challenge – be it twins, cancer, disabilities, or whatever -the very best you could, just like I’m doing.

    So, instead of saying that, I’ll just say, you are a strong woman, and you’ll be an amazing mommy to this little girl. 🙂

  7. FoxyJ says:

    When my daughter was about eight months old we noticed that one of her eyelids had started drooping. It took us three months to get her in to see a pediatric opthamologist, and he immediately noted that the entire left side of her face is flattened and not symmetrical with the right. He referred us for a CT scan and a consultation with a specialist the following week. I spent that entire week sure that my daughter had a condition that cause her skull bones to fuse too early. We were sure she was going to have major surgery and spent a lot of time discussing and imagining the process and so on. It turns out that CT scan showed that her bone growth is normal, but her face is flattened because she likes to sleep on her tummy and always in the same position.

    She is now 14 months old, and if you look closely you can see that her left eye is shaped differently from her left, and not quite symmetrical. It’s hard to decide what to do in this situation. If we made a major intervention in her sleeping we might be able to change her sleep position, but it would also mean taking away her ability to self-soothe and majorly disrupt her sleep and ours. I find myself staring at her, trying to imagine her at age 8 or age 16. Will it be noticeable? Will she care? Is she going to spend her life upset about having a misshapen eye and cheek? It can be so hard to tell what the right choice is because future outcomes can be hard to tell. It is important to find the balance between appropriate concern for the future and needless worrying.

  8. Stella says:

    Wow. Just wow. There have also been many things in my life too that I never really knew how to handle, but we do. Siblings with drug addictions and parents with emotional/behavioral disorders. There is never a sure thing. Each day contains acts of faith. Each relationship I foster can break my heart and heal my heart at the same time. It makes me question the bigger plan–and it makes me doubt and believe in that plan over and over again–depending on the day and the trial.

    Thank you for sharing with us.

  9. mraynes says:

    I had to laugh at how you plan you’re husband’s funeral when he’s late coming home. I do this all of the time! I had to pick mr. mraynes up from the airport yesterday, his plane was about 30 minutes late and during the 30 minutes where I circled and circled the airport, I had imagined a horrible plane crash, being a young widow with three babies and planning what I would do next. I decided I was going to live with my in-laws. 🙂

    This post is really timely for me because I have a really hard time being content with the present moment. I am so focused on what life will be like when I finish school, develop our careers, or buy a house, etc. that I am missing my life today. I think part of it is a coping mechanism; life feels so hard right now with three children under four, two with language and developmental delays, trying to finish grad school and have a normal family life. I think my imaginings are me trying to picture a time in the future that is easier. But it isn’t helping me feel happier and it isn’t solving the hard things now. I think I would be a lot happier if I put my head down, got through the tough stuff and be content with my life as is. This post is a great reminder of that, so thank you!

    • MJK says:

      I cannot even count the number of times I’ve done that kind of imagining what would happen if “oh no, why is he late, did something happen to him” etc.

      Do men do this or is it a female thing, I wonder?

  10. Janna says:

    Thank you for this fine piece of writing. It bears the hallmarks of quintessential Exponent II – personal, unresolved, hopeful.

  11. Corktree says:

    I do think it’s important to consider your current experience as more important than past or future. If you can successfully live in the moment, you’ll be prepared for the future without regrets, and you also won’t dwell on what you can’t change about the past. But easier said than done.

    When we were presented with the possibility of Down’s for my third daughter, I actually don’t remember thinking about what life would be like. I do remember mourning for what I thought was lost (normalcy), but when she was in the NICU for other issues, I learned to be there in each moment with her and not think about how each day affected her future. It was too painful. Somehow I stumbled upon the magic formula without realizing it at the time – and to this day I can’t believe I handled it all so well.

    I see the fruits of that in how we’ve dealt with her since as well. Even as questions of Mosaic Downs still surface and present themselves for consideration, I no longer worry about the future. We don’t even see the need to know for sure at this point because we think it’s better to enjoy and love her for what she is, not what she could or might be.

    You will figure all that out beautifully Deborah, no matter what comes your way as a parent, and I have no doubt that you will navigate the bumps with grace.

  12. Hydrangea says:

    What a relief- thanks for sharing your story. I admire you for educating yourself right away and taking action to deal with potential obstacles. Best of luck!

  13. EmilyCC says:

    I used to think that by imagining worst case scenarios, I could plan for what I would do. When our oldest had a few problems, I tried to keep planning out what we would do. Deborah, you hit the nail on the head–It was exhausting.

    One day, my mom said to me, “Why don’t you wait to worry about your problems when they actually are at your doorstep?”

    It’s been good advice. So many of my worst case scenarios haven’t come true, and even when I did “plan” for them, it didn’t do me much good.

  14. Deborah says:

    Thanks everyone. I got testy reading through your thoughtful comments. I really love this blog and the women who visit here…

  15. Deborah says:

    Testy should read “teary” — ah, iPhone autocorrect!

  16. amelia says:

    At least your iPhone autocorrect didn’t air it’s dirty mind, Deborah. 🙂 I swear the iPhone has the filthiest autocorrect mind in the digital universe…

    Thank you so much for this piece. This is something I have struggled with for so long–with the need to live in this moment and let the future take care of itself. And it will. I must believe that if I live well in the moment I have now, then the moments that comprise my future will also be moments I can live well. I tend to do this fairly well when the present moment delivers challenges in the shape of present negatives. When I have an identifiable problem that I can put my hands on or my mind to, I am typically able to navigate it without getting distracted by considerations of the future harms that might come. And I’m very good at looking at my world and seeing that there is a great deal of beauty all around me in spite of whatever problem I’m confronted with. A major business deal doesn’t go my way? Ok. I find other places to earn potential revenue; and I still notice that the daffodils are popping out their heads. It’s a present negative.

    But when the challenge is an absent positive, I struggle much more. When there is a good that is missing from my life for which I long, that is much, much harder for me to cope with. And can send me into thinking about and longing for the future instead of just letting myself be in and enjoy the present. I don’t have kids, I don’t have a partner. Those things can send me spiraling in ways that are really destructive to my present. I imagine this is the case because it feels like there’s nothing I can *do* about these absent positives, while I usually can do something about present negatives. I can’t make the right man appear in my life. I could have a baby on my own, but I’m not in a financial position to do so (were I, I would very seriously consider having a baby on my own), so I can’t really do anything about that. I don’t know.

    I think the church generally does a positively terrible job of helping us learn to live in the moment. There’s just too much emphasis on ends and goals and getting to where you’re supposed to be, whether we’re talking about this life or the next. And culturally, Mormons are far too focused on being able to check the right accomplishments off the list as a measure of worthiness. Drives me bonkers.

  17. ZD Eve says:

    This I know (more than I knew a month ago): my daughter will experience pain, my heart will become undone. I just can’t predict the form.

    Deborah, thank you for your constant thoughtfulness and grace.

    Congratulations again on your daughter. I’m so excited for you.

  18. Kmillecam says:

    Deborah, what a beautiful piece. I have a two-year-old who was born with one working kidney and a bilateral cleft lip and palate. Honestly, it wasn’t that bad. If your child comes with one kidney and a cleft lip/palate, then you do what you have to do. It’s not even a question.

    You’re so right about your heart coming undone but just not being able to predict the form. I find it helpful to just surrender to it.

  19. x2 Dora says:

    Deborah, thank you for a beautifully articulated post on such a personal subject! Many’s the time that I imagine the worst just to prepare myself for it … just in case. It’s a protective mechanism that sometimes works. But yes, it can be exhausting.

    Really, there is no rationalizing the trials that we all receive. A blessing (or the absence of it), can be a barricade or a steppingstone. In my best moments, I take it as a lesson that I can learn to increase my empathy, endurance, resilience, etc. In my worst … well, better not to dwell on it. Anyway, thank you for breaking your heart open enough to share your story and give me the courage to do the same.

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