Between hope and fear

One in thirty three children are born with a birth defect (or so I read someone quoting an article what wasn’t actually linked, so #grainofsalt). This can range from webbed toes to microcephaly. Sometimes these are detected during prenatal care, while other are discovered after birth. That period of time when you find out something may be wrong and you find out what it actually is hangs between hope and fear. For us, that period of time was 9 days, less an hour.

Thankfully, Li’l One’s diagnosis was neither life threatening nor life long.  He (not that we know the sex of Li’l One but based on the fact this condition — along with another one that resolved itself — occurs more commonly in males than females, I’m defaulting to the masculine pronoun) has what those in the medical world refer to as: “bilateral congenital talipes equinovarus” and those of us who don’t want to have to google it to copy & paste it every time we write about it refer to as: “two clubfeet”.

Even more fortunate is the fact that we know that this condition runs in the family. Li’l One’s uncle had club feet, and Li’l One’s dad has some Achilles tendon issues, so while this condition can be a marker for something more serious, we can safely assume the issue ends at the feet. But still, to know that your child will be in casts for the first few months of his life, followed by boots attached to a bar for 24/7 for another few months, and having to keep wearing them at night until age 4, you feel a sinking feeling in your stomach.

I felt powerless for the 9 days, less an hour, that we knew something was wrong but not what it was. And now armed with about as much knowledge as one can have after a week of near-constant Googling, forum reading and Facebook group creeping, I don’t feel I have any more power. Even once we meet with my doctor, discuss it with our pediatrician, and be referred to a pediatric orthopaedic surgeon, we just have to wait. There is nothing that can be done until the baby is born.

Except grieve. As minimal as the concern is in the grand scheme of things, there are  things that I was looking forward to that may never happen.  This child will never wear footie pajamas. Babywearing — the one thing that I was counting on to maintain my sanity as I tried to snuggle a newborn while keeping up with a toddler — will be difficult, as best, and potentially not permitted. Even the few things I thought I already knew how to do, I’ll have to re-learn, like bathing a baby with casts on both legs, buying clothes that will fit (and permit easy diaper changes) over braces, and even, based on the research I’ve read, holding my own baby. We will have to willingly subject our child to discomfort and pain, continuous streams of doctors’ appointments, and medical devices all in the name of health and love.

Scott and I agreed that we were going to be as optimistic as possible facing these upcoming challenges. We were going to be thankful that our baby is healthy, and will be born into a happy, loving home. Whether it’s willful denial, bottling his emotions, or mental fortitude I just don’t have, Scott is doing a better job than me at staying positive. For me, I will be spending the next 19 weeks still hanging between hope and fear.

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Categories: The new identity | 5 Comments

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5 thoughts on “Between hope and fear

  1. Sending love from Christian and I ❤

  2. All the love and good wishes to you mama. You are doing the best you can in the circumstances and you are going to be the best mommy to this little one. You’ll learn and adapt. You have knowledge, so it won’t be a surprise at birth. Make sure you take care of you in these 19 weeks, the rest will come. ❤

  3. Sending you love and my thoughts. You wrote your feelings so beautifully. The first thing I thought was, oh I’m so happy it’s nothing “serious.” But then I read all about the losses you will be grieving and the struggles you will be facing. It is serious and I’m glad your baby is being born to two such strong parents and into a loving family.

  4. shaunaceyb

    that baby, boy or girl, is so very lucky to have you two for parents.
    sending all my love and strength for you xoxoxo

  5. I’m sending love and prayers your way. Finding out that anything is wrong with your child, no matter how small, is gut-wrenching, and while thankfully this is not life-threatening, it is a big deal. It sounds like you will be well equipped to help your little one, and he is very lucky to have parents like you who are already so focused on how to improve his quality of life. Take care!!

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