About a year ago, we first witnessed our little Sammy have a few nocturnal seizures. I recognized them immediately, since I'd spent some years working on the ward of the Rehab Center for Children, and some more years as a respite caregiver for Family Services. Although that helped me know what to do and what not to do; the dynamic was still sharply contrasted to caring for a patient versus caring for my own flesh and blood.
We then spent some time in waiting rooms at the Health Science Centre waiting to confer with the pediatric neurologist, or the lab technician, or the physician at children's emerg. Sam quickly went from curious and trusting to sad and wary and very, very opposed to bloodwork. We hated watching this, and felt so evil for willfully carrying him into yet another situation that involved yet another "poke". It made me feel crazy thinking about all the parents with kids who are truly sick with cancer or any number of horrendously nasty conditions that should go away and leave children alone.
We decided against treating Sam with a preventative medication until we could observe just how much of a problem this condition would be for him. I hated to think of unnecessarily medicating a little boy and taking other chances with side-effects. And for a year, we did just fine. We observed no more seizures.
Until this morning.
Yuck. what a helpless feeling to watch your little one writhe and tremor; even while utterly unaware and unconscious. It doesn't matter that I know the factual side of these involuntary muscle motions being caused by increased electrical activity in his brain. It doesn't matter that I know I can't do anything to stop it, but only do my best to keep him safe. Well, of course it does matter, but it doesn't stop my heart from hurting.
Some days by 7:25 am, you just want to call it a day and go back to sleep.
Now, Sam is going to be fine. We've already got a great pediatric neurologist, a great nurse right here in town to do his bloodwork, and a pharmacist around the corner if the word comes down for us to start him on some meds. And it's abundantly clear that things could always be worse.
So, anybody out there who might be reading this post, and lives with a sick kid or spouse or parent all the time-- Hats off to you. I think we all forget how taxing it must be.
19 comments:
praying for sam.
My thoughts and prayers are with you. May God strenghten you all.
MK
I'm so sorry that your Sam has to go through that. I'm sorry that you have to watch. Sending prayers your way, prayers for strength, healing, patience...
I'm glad that Sam has you.
That's gotta be tough.
oh ouch. praying for sam and for the people surrounding him.
What a way to start the day. May wisdom and peace be yours today.
what words can i write that you dont already know and pray for yourself?
Oh my. We are just over a year out with Rach and we are hoping to make it past the 2 year mark, which will be the point where they say she likely won't have one again. It is so awful and scary to watch--praying for you all.
Yucky, that would be SO hard to watch. I think most of us parents have to deal with some health issues in some shape or form. I hope that you can keep all this controlled for the poor fella.
Praying for Sam and your family. Hugs.
Good luck to you all, as you said, things could be worse, still heart wrenching.. hang in there, {{{hugs}}}
sending hugs and prayers to you and your little boy.
my baby had to stay in children's hospital this week. it was so scary and so hard letting them poke and prod him while he cried. thinking of you.
I've seen two of our children seizure and truly it is a scary thing to see. For one we had an answer but the other not really. count me in with the prayers. Roselle
Wow, Joyce. So sorry to hear about Sam. I was happily "yurting" at Spruce Woods for 4 days. My love and prayers go with you. As I cut grass this afternoon I will pray. Love you, Marshkies (yeah, your sis Mary)
I like the movie Fried Green Tomatoes for a lot of reasons...but mostly for the wisdom bestowed by Idgie Threadgoode..She quotes her friend Ruth in one part by saying "my daddy always used to say there was a separate god for children".
I agree with "Ruth" in that there is indeed someone larger looking out (for Sam) and all the little ones who can't take their health for granted.
And for the days, the hours or the moments when we don't have the strength anymore to think about our children's future, cry anymore tears of uncertainty or worry into the daylight hours...its nice to know that we have a God who actually loves our children even more then we do...and can carry our hearts around when life feels too heavy to bear.
love you joyce
I haven't gotten to meet Sam yet but know that I will be praying for him, you and the rest of your family.
Ramona
(and yes this is my 3rd comment today so I'll leave your blog alone for a bit now...)
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