Over the past three years, there have been many times that I’ve thought about me on our Diagnosis Day, the day we found out that one of the babies then growing in my belly had spina bifida. It was my 27th birthday. We were excited to find out if our twins were boys or girls. We found out they were girls, and we also found out “Baby B,” the “one in the top bunk” had something wrong with her head and spine.
I spent most of the moments after that crying as the high risk OB and my doctor husband (whose research interest is ultrasound) and doctor dad (we invited my parents to come to the ultrasound and then out for my birthday lunch) crowded around a screen full of fuzzy black images speaking words I didn’t understand. I was sobbing but trying to keep my belly from heaving too badly for them to get a good look at whatever it was that was wrong with my baby that I didn’t understand.
I spent a lot of time after that crying too. I wept for the “normal” baby I thought I was no longer having. I wept for fear of what life would be like for her and for us. I wept a lot.
But here’s the thing: when I think about what I’d say to me that day, the last thing is “Please, don’t spend another night crying.”
Yes, like that author, I wish the me in that ultrasound room could have seen not just a fuzzy black and white image with an abnormally shaped baby-head, but also a picture of my beautiful, hilarious, exasperating daughter Claire as she is now. In fact, those are the images I sought out when I got home and had some time to think. I looked for pictures of kids with spina bifida, and I found myself deeply comforted to see so many vibrant, alive, whole, happy people. It’s why I care about things like showing others what life with SB looks like.
But I also want to defend that me in that room. I want to protect the space in which I grieved. I want to be gentle with that person who felt loss and pain and worry. All of those feelings were OK. All of those feelings were things I had to process and work through.
Just like I want twin parents to know that freaking out is normal, I want SB parents to know that it is both OK to cry and important to know that there will be far more than just tears and pain on this journey, but wholeness, health, happiness, frustration, hilarity, annoyance and every other feeling every parent experiences on this crazy ride raising children. There’s space for both. Because even though sorrow may endure for a night, it’s kind of important to pass through that night so joy can come in the morning. You don’t get to skip straight to joy, though. The only way out is through, to paraphrase a line from Robert Frost.
Nothing in life is ever made easier by being told you can’t feel what you feel. And I want the me in that ultrasound room to know that.
3 Replies to “Dear me on diagnosis day:”
“Nothing in life is ever made easier by being told you can’t feel what you feel.” Yes, so much yes.
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Yes, this! There are a lot of times when the retrospectives come across as if a person is silly for feeling the way they do. I know that is not the intention but it is important to let people feel like what they are going through is valid. Having said that, I wish it didn’t have to be that way. I wish some part of the fear and sadness could be taken away by changing how our society sees disability on the whole. xo
Totally! Knowing that having a disability is not a tragedy is something that would help everyone feel less sadness and fear!
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