What Wasn’t

calendardatesSome days, I selfishly look back at all the time we waited for an answer to my daughter Sammi’s health challenges and see only how it wrecked my image of what motherhood should be.

I was newly a mother of two when a doctor – a kind doctor, a thoughtful doctor – told me that my new daughter would almost certainly end up in the hospital with every respiratory infection she got. Not a great idea, he said about twice-a-week daycare. Probably not, he said about baby-and-parent music classes. No, I don’t think so, was his answer to my hopeful questions about baby swimming, a smaller daycare, a playgroup. After two hospitalizations in her first five months, I believed him.

Through that first winter watched through front windows into an empty courtyard or through car windows into big sister’s preschool, my new daughter and I eyed the world with suspicion: me because it contained too many germs and her because nothing in it made her feel quite right. There was no sleep, no break, no time apart for the two of us to learn the beauty of missing each other and being reunited. There was just us, with the world outside the window unavailable.

The winter turned into years, isolated and treading water.

Then she got older, and her body’s protests came from her digestive system. No chocolate, the doctors said as she coughed and gagged. No oranges. Or tomatoes. She grew like a redwood tree – not tall but slowly. I watched her from every vantage point and learned to spike her food with oil, cream, and butter. I worried my Jewish mother heart into wrung-out puddles over her size and her nearly nonexistent appetite.

When all my worrying brought us to new doctors, they shook their heads harder than the first and said no to even more things. No dairy, they said. No soy, or eggs, or nuts, or wheat. Also: no peace for you, Mom. Hand her over; we’re putting her to sleep and looking at her insides. I paced between the hospital and the school, watched for problems,  learned to cook for the diet I called joy-free despite its ample rainbows of fruit and vegetables, its every-variety-of-bean teaching us new flavors.

My mind filled with food. My cabinets filled with strange ideas.

When the final probe led to a solution — technical and frightening – to the problem of my daughter’s and my health-dominated relationship, I was left in mourning for the years we didn’t have.

Yes, I taught her to blow bubbles in the yard, but only between phone calls to the pediatrician.

Yes, I read to her every night, but mostly to calm her down enough to sleep so that she could grow.

Yes, I kissed her little cheeks over and over, but partly, I was checking for fevers, for filled-in flesh, for reassurance that she was still here, that she was staying.

If only I had those eight years back, untainted, I would spend them in the way that every mother I watched from the windows and the edges of the class parties and the aisles of the grocery store. I would worry about my daughters never sleeping through the night, learning to read, riding a bicycle. I would get frustrated at the tedium of motherhood, and I would sleep fitfully when they had stomach flu and strep throat. I would fill out school forms and drive to soccer practice. I would tuck warm girls into beds and hold hands crossing the street and make birthday cupcakes.

If only I had those eight years back, untainted, I would do all the things I already did, without all the extra things that kept me from living in the present. If only I had those eight years back, untainted, I would look at my daughter and see nothing more than what she always was, at heart, but what’s been clouded for me all this time: I would see her as a normal child.

That’s what I would do, if only I had those years back, untainted.


 

This was written for Finish the Sentence Friday hosted by Finding Ninee. This week’s sentence is “If only I had…”

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8 thoughts on “What Wasn’t

  1. This is beautifully written. I’m so sorry that you lost all of those years but also relieved that somebody finally figured a way for you to help your sweet daughter!

  2. Hi again, I tried to find a contact form and didn’t see it but… you may know that I’ve been advocating for special needs for a while now on Finding Ninee. A friend of mine and I recently started a new contributor site called Break the Parenting Mold and would love for you to submit something. Your words are amazing.

  3. Oh Debi! This brought tears to my eyes. Partly, because you wrote about your pain and loss so beautifully. Partly, because my sister has had a similar experience with her daughter, who is now 28, still living with my sister and still requiring round the clock care due to Retts Syndrome, which is like the lowest spectrum of Autisim combined with a whole slew of digestive problems and very physical outbursts, and zero speech abilities. The digestive issues have been the most debilitating of all. My heart goes out to you. I’m so sorry for the crushing aspect to motherhood when the child you love so much is in pain and missing out on what other kids take for granted. Thank you for sharing your story with us. And, yes, you should write for Kristi’s amazing new site!!!

    • Oh, how heartbreaking for your sister, Julie! Believe me, she is lucky that you recognize her struggle and can appreciate what she must be feeling. I know we are very, very lucky to have a resolution to Sammi’s issues at least for the foreseeable future. And you: I love your writing, too! I’ve been reading your blog for a while now. 🙂

  4. I may not have had the same experiences, but I totally understand where you are coming from. I have 3 kids. Back to back. One on the autism spectrum, and the other allergic to milk and soy. I know how many bad doctors are out there. Nobody wanted to actually test my kid for allergies, but all said her head to toe eczema was allergy related. It was like the whole world was against me, and it was just me and the kids. I wish I could have my years back because it really broke me. For a while, I was perfect, but my fragile body could only do perfect for a short while. I’m sorry you went through what you did, but consider all the years you will get to enjoy now. That’s what I’m trying to focus on… Like I was thinking what I did should have killed me… The sleep deprivation. The undernourishment. The lack of me-time. What if I did die? I would miss the years to come.

    • Boy, Michelle, can I ever identify! Especially when Sammi was very little, the sleep deprivation created a terrible cycle of not having enough emotional bandwidth to effectively solve the problems I had that would have helped to ease the sleep deprivation. We do a terrible job of supporting mothers in this country period, let alone mothers of kids with medical issues or special needs. I am glad you can see your experience in enough hindsight to be appreciative of how hard it was — so validating, right?

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