Night Terrors
Fear of the night seems to be ingrained in us humans. The dark, the unknown. But for those of us in this community, I believe it takes on a different dimension.
I remember being told when Pearlsky was leaving the neonatal intensive care unit that kids “like her” typically die at night. Sometimes it is from aspiration (mostly), sometimes due to seizures (which may or may not lead to aspiration), sometimes from other causes. I tried to verify this “statistic” but it is hard to find, my guess is that this is anecdotal. But I believe it. And even if it were not a medical fact, the night is scary enough. We are not “watching” our kids, we are not awake and with them, they are sleeping. Next to us, the room down the hall with a monitor, with our ex, but it is night. It is dark. We are not watching them.
David is in a residential facility for a large part because of night terrors. His mother, who has physical custody, had difficulty dealing with the nights (and there were other factors).
If I don’t hear Pearlsky when my alarm clock goes off, or if in the middle of the night I wake up and don’t hear her over the monitor, I check. That is, after my heart skips a beat. Check for what? I check to see if she is still alive.
I CHECK TO SEE IF MY DAUGHTER IS STILL ALIVE. I fucking check every morning to see if my daughter is alive. Who does this? When did I sign up for this?
Our kids die in their sleep.
One of our jobs is to protect our kids. This is every parent’s job, with any kid. We protect them.
From bad people.
From bad food.
From bad weather.
From disease.
From death.
We protect our children, we watch over them.
We can’t at night.
And we can’t when we entrust them in the care of others.
Here is the second part of the three part interview.
For years I was terrified that my daughter would die. The doctors didn’t know, still don’t know what causes her disability, so how could they possible know if she would live or die. She’s turning 22 in less than a month.
This is terrible and I can understand the terror. “The pen is mightier than the sword” and the power of witness/a voice can not be overestimated. My child has no voice; not even one word as people inevitably ask.
I almost went into the details more…but it is too close to me. It is so hard to know that there are people ( I am reluctant to term them as such) who will take advantage of the voiceless. The most basic instinct we have is to protect our child. I saw my mother do it and I have to do my best to do the same. Read Suzanne Massie’s Journey-Chapter 12 if you can. Her son had hemophilia is not disabled in the way our children are, but it is the best description of the emotions we feel, I think. I read it when I feel really alone.
BTW, I wrote her son last year to ask him to thank her and he said he and she hear from parents all of the time.
God bless you.
Yes, it is the job of parents to protect children but it is not possible to protect them from everything. To not recognize this can lead to over-protection and the limitation of the child’s right to live fully, or to the parent bearing an undeserved load of guilt if “something” does happen.
I realize this is not NEARLY, or AT ALL the same, but, as a child, I was extremely paranoid. For no reason at all, from a very early age, throughout the day, I was certain my healthy parents would be dead. I was living in constant fear.
Today, part of me is glad for this odd obsession. As, I couldn’t possibly appreciate them more, and every day feels like I am seeing them for the first time in ages. Of course, I am also somewhat prepared for the day it does happen (as much as one can be.) I wrote and re-wrote eulogies for them, I cried myself to sleep… My mind is set. So, as much as it hurts, as disgusting and angry as it makes you feel, there’s no “fairness” when it comes to our challenges and emotions. We can only wake up each day with utter fear and agony and grab the one we were worried about and know we could never, ever love anyone as much as we love them. For that love, *maybe* we’re lucky.
Yep, I hear you. It is a tremendous worry and one that I also held and sadly, realized. My daughter, born with a rare genetic syndrome that most doctors have not even heard of (tetrasomy 18p) passed when she was 13 years of age from cardiac arrest which was likely due to a seizure. I guess, as a parent of a child – any child – it is ingrained in us to worry. However, what I would like to convey is that while concern is an unavoidable part of love, once one has done everything within their means to ensure health is monitored by professionals, you can only hope for the best and try not to focus too much on the “what-ifs” because that is time best spent enjoying your loved one. No one knows what tomorrow brings. Cherish today. <3