Waiting. Such a innocuous word but tinged with hope. Waiting for someone, waiting for a sign, waiting for a doctor, waiting for a BREAKTHROUGH or that what you are waiting for is almost here.
Our waiting is often tinged with hope and sadness because what we are waiting for hasn’t arrived…yet. Or rather, it hasn’t arrived in a pretty package with a bow on top, it’s more like small steps that you might miss if you weren’t watching so very very closely.
You see, we have known since very early on that E has SPD. She was born (and her twin brother) 12 weeks early and on Day 3 of her NICU stay in her very preemie life, nurses and doctors were exceptionally concerned about her as she would cry or rather wail almost silently (28 week preemies can’t really cry) communicating her displeasure every time someone would touch her. She was known as “difficult to handle” which I love and now laugh as it’s just that fighting personality that has carried her through all her challenges. As a last resort before giving her meds, the OT decided to try a pacifier. It was specially molded on the nipple, and nearly as big as her face, and she latched onto like a person in LA devours carbs on her “cheat day.”
As E’s story unfolded, we would learn so much about SPD. To this day, at 23 months, nearly 2 years later (developmentally she is roughly a 7 month old due to a probable diagnosis of CP and many setbacks on her journey), she dislikes having her forearms held and bearing weight on her hands and feet ,while she loves mouthing everything and is hyper-stimulated by noise, light, activity and most sensory inputs. The amazing thing is that little by little and day by day, with each week that passes, she makes tiny baby steps of improvement. At times the waiting feels unbearable. And then out of nowhere – a breakthrough.
For 22 months, E could not sleep on her back in a crib. She slept in a chair. We tried everything to give her the boundaries she so desperately needed:
- a Zacky (a large blue beanbag hand we got in the NICU),
- a weighted blanket,
- we tied her down (literally, blankets criss-crossed across the chair so she would feel secure),
- put stuffed animals around her (it was like a zoo in her chair),
- and anything else we could think of to help her.
And then 1 week ago, I decided to try a nap on her back, “just to see what might happen.” I had attempted this one month before and it had been the kind of disaster where your child screams so loud you think that they have been physically harmed, when all they really want is the sense of being confined in order to be able to do what comes only (somewhat) naturally to them: sleep. And then in a moment, after 22 months of waiting, she slept on her back in a crib. She didn’t flail, she didn’t scream, she went to sleep.
All the moments of feeling embarrassed or saddened when someone would watch me tie her down for a nap, or the times when we were alone at night and I would apologize to her for her having to go through everything she has to go through and not be able to just go night night like her twin brother, were not forgotten in that moment for I had accepted them as they were.
But, if I am honest, I had been waiting for this moment. Or rather I had hoped I could wait for this moment.
So now, each day, as I sit and watch her in her monitor, sleeping on her back, peacefully dreaming (until she wakes up between 2 and 4 am that is, you can’t win them all). I live in these moments. Remembering where she came from, relishing this progress, accepting that I don’t quite know when the next breakthrough will be but being (mostly) happy with our mini-milestones so that when what might be a “normal” thing for every other parent or infant/toddler, happens for us, these moments will not pass me by. I will celebrate them in my heart as if she crawled for the first time, took her first step, or spoke her first word.
I still wait and hope for each of these milestones, but tonight I celebrate our little step in the right direction and this will not pass me by.
Are there moments in your child’s life you feel/felt like you waited for that may have been “normal” for everyone else, but that due to your situation you did/will celebrate and won’t let it pass you by?