Thoughts of a sleepless brain at 4 am
We are slowly coming out of an over two hour seizure. This has not happened for a long long time, this one was bad; she became cyanotic, a first. I so maxed out her meds that I won’t even tell you how much she got. The doc on call says that is the only thing, besides basic life support, they could do either. The blast of cold air in the middle of the night, on our way to the van seemed to have turned it around, go figure. We stayed home. It is now more morning than evening, I slept about forty-five minutes before this started.
Is there any lonelier place on earth than holding your kid for hours while she is seizing?
If He won’t fix my daughter, could He at least put us out of our misery? Does that make me weak?
Dead would be nice. The love of one woman prevents that.
Do tears make me less of a man? Does it really matter?
It’s late. Or early. And I probably should not post this. Maybe I’ll take it down. Maybe nothing matters.
🙁
You are alone with Pearlsky while she is seizing, but there are people out there who care when they find out it has happened.
I don’t know if that helps but I couldn’t think of anything else to say that MIGHT help.
🙁
I’m awake because I’m on a different time zone. Do you want to skype or gmail-chat?
You are loved. Tears make you more of a man. You know this.
My heart breaks with yours. I pray for you and Pearlsky.
Thinking of you. You matter. Pearlsky matters.
Brutal…thinking of both of you.
SD, all I can offer is that your pain is witnessed. Maybe that makes a difference. I hope so.
You know, it is cold, cruel, biological bullshit. I wish there was something remotely like divine intervention, whether it be in repair or allowance. Instead, you are stuck with only the hollow, fragile words of a friend, frightened and concerned about two people he loves dearly even though he only knows them in spirit.
Be at peace.
“Is there any lonelier place on earth than holding your kid for hours while she is seizing?”
Maybe. BEING the seizing person; awake, aware, trapped inside, unable to communicate or to move that arm which *hurts* in that position, is pretty freakin lonely, let me tell you. Even in a busy ER with six people working on you.
Sorry. You asked. But I have not been the parent of the seizing child in that scenario, so I have no comparison.
Before anyone freaks out, I am told that it is unheard of to be awake during a “grand mal-type” seizure, so those of you out there who have “seizey” kids, my experience in not theirs.
You both matter dearly, you held your beautiful daughter as she needed you most and it would have been the only thing she wanted at that time. I’m sorry to hear you both had to go through this and I wish there was someone to hold you when you needed it too xx
It matters. She is so blessed to have a Daddy like you. I always feel better after I cry. Crying is so not a man or woman thing. It’s a human thing. I hope the two of you are getting some rest. You are in my heart and thoughts. Thank you again for sharing.
I don’t know what to say. I acknowledge your pain and sorrow? Virtual hugs.
I don’t know. I only know that last night must have been a hideously awful night for you. I so hope you’re resting now, or will get to soon.
Less of a man?? Hardly.
Holding a seizing child? Sucks beyond words. Even in many , many ways, beyond holding a child with cancer. I know, because I have done both.
That you have the love of a woman , someone other than Pearlsky, because I know she loves you too, makes a difference. In all of this. It just has to.
Thinking of you and sending virtual hugs and other good stuff, yes even prayers , across the miles.
I wish there was something I could do to make this situation better.
I don’t know what to say other than that completely fucking sucks.
If a two hour seizure didn’t make you cry, then I’d worry. I’m glad you have love to keep you here. I suspect there is at least one other woman who also loves you and wants you to stay, even if she maybe thinks you’re sometimes an ass. As your teenage daughter that’s part of her job.
I hope the rest of your day, and your year is nicely boring and uneventful.
Take care of you.
((hugs))
And more ((hugs))
Well, damn. I didn’t know you had written this, that you’d gone through this. I’m sending my love now, though, for what it’s worth. Lots of it.
I hate that I’m always speechless when you are going through a harder than usual time. You always know the right thing to say – even if you are confirming my fears that I have gone bat shit crazy.
I’m sorry. I’m thinking of you. For what it’s worth, I’ll light a candle for you at church tomorrow.
Never alone, I am always here. And I think men who cry are strong enough to know that it doesn’t make them less manly to FEEL. And that is reason number 133 of why I adore you.
I found your blog through another one…I’ve read through the whole thing.
Every child should be so lucky to have a father like you. I hope my husband will be as great a dad as you are (we have 1 ‘normal’ baby and another one on the way).
You, sir, simply amaze me.
There’s nothing I can do or say that can make it “better”. Just know that there’s one more person out here in the ether who thinks you’re pretty neat-o and the world would be a blacker place without you in it.
I hope this is better late than never but, from reading all of this feedback and from knowing what I do about you, there are many people (like me) who love you enough to care that you stay around and many more that know you are strong and as manly as you need to be.
XOXO