Most first time parents say the same thing, and get more than a handful of surprises when their child comes into the world. But, for special needs parents, it isn't anything at all like that. It could probably be best described as getting a child in a language that no one understands.
It felt like I had been reading all of my prep work for a baby in English, then I was given a child who spoke Mongolian, or Aleut. Sure, I took classes in German and Spanish, and as an adult learned some Japanese, Welsh, Korean, and am conversational in Italian, but I know absolutely nothing about Mongolian or Aleut.
So, I have a baby communicating in a language I don't speak, and I look around me for help. Friends, family, doctors, all of them offering their translation of what my child is saying. All well meaning, intelligent and helpful, but none of them speak the same language as my daughter.
Eventually my daughter does "something" that makes doctors think she can't learn "English" and misses one critical milestone after another. Therapists are called in, they still don't speak her language, but they have seen children like her for years.
Things like that go on for a few years, until finally, I learn the language my daughter speaks. I come to understand her, not the other way around. My understanding of her is the only bridge I can build to connection. I had to go through the process of education and learning, not her.
That's all a big complicated analogy that might only make sense to me, but it's taken me a long time to come to terms with what our journey means. I didn't understand for so long, and am still desperately trying to see the world through my daughter's eyes. I am desperately seeking a journey to understanding her.
Which gets me back to the point of this. Last week I saw a doctor myself to rule out a genetic disorder that both Luciana and I share mild symptoms of. It is as far as we know, the only condition that would outrightly rule out her having Cerebral Palsy caused by Static Encephalopathy, which is a big word for brain damage. Chances are much higher now that our daughter suffered a stroke sometime near her birth.
That's been the hardest part to process for me. It's been four and a half years and I've been unable to confront or reconcile what happened. I've learned in that time that many moms of children with special needs deal with some form of post traumatic stress disorder, and I can certainly understand and imagine I do as well. It took me three and a half years to watch the short clip of my daughter being born, and it was only because we were compiling information for neurology.
I still can't find the words to describe what happened in total. Tears still well in my eyes when I think about the full five minutes it took my daughter to breathe after they pulled her from my arms. The haunting silence of a labor room with a baby that isn't crying is something indescribable. A full ten minutes passed in that silence before she cried out loud and our real journey of parenting started.
Now, four and a half years later, we have a joke around the house about the days, weeks and months that followed. It started with Luciana asking us a few months ago what she was like as a baby. Off handedly one of us answered, "You just cried and cried and cried unless you were getting mama milk". That was entirely the truth of it. We had a baby that screamed, constantly, in Aleut if you will, and nothing seemed to help.
So many people disbelieved us. Doctors said it was any number of things, colic, fourth trimester, indigestion, or just a "normal" baby that wanted to be with her mama. None of them were there when we held a screaming newborn for hours. None of them were in the car when we couldn't go more than a few blocks because her screaming was so incredibly painful to hear in a closed space. None of them were there, laying flat on their backs with a sleeping infant on top of you in bed, because that was the literal only way she was comfortable.
A few years ago I met another mama of a girl who had CP, and the one thing we shared was that we had the most incessantly crying children when they were younger. That, we gathered, was due to some amount of pain they must have been feeling at the time. It made perfect sense to me, their bodies weren't doing what they wanted, all was new, uncomfortable and frustrating.
This week though, with the knowledge that my girl likely had a stroke at some point, I began to look into pain related to strokes, and the flood gates opened.
"Stroke Pain- https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/chronic-pain/types/stroke-pain.html
A stroke keeps blood from reaching the brain and leads to brain tissue damage. About 10% of people who experience a stroke eventually develop severe pain that is called post-stroke pain, central pain, or thalamic pain (after the part of the brain typically affected).
The onset and character of this pain is highly variable. It can arise days or years after the stroke, can arise after a major or a minor stroke, and patients describe the pain they feel in many different ways including (but not limited to) burning, aching, and prickling. Many different body parts can be affected, including the face, arm, leg, trunk or even an entire half of the body.
Common characteristics are that the pain is constant (although there is also often an intermittent stabbing component), and is more likely to occur if the stroke occurred in the right side of the brain. The pain usually gets worse over time and can sometimes be aggravated by temperature changes or movement."
It all came together there. I knew she was in pain, it's just one of those things I've always known, but to know that there is documented pain that occurs after a stroke, and not one doctor thought this was a possibility hurt me to my core. We could have done so much more if they would have sent her for an MRI early on. If the hospital had taken her to the NICU, if we weren't sent home 36 hours after having her. All of it and none of it makes me so upset that no one saw.
So I'm writing this today, in hopes that maybe, just maybe, another new mom reads this, and it helps them. An infant crying for hours upon hours is not normal. Don't take no for an answer. Don't make the same mistakes I did.
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