This one experience I had this past February keeps resonating in my mind......and has been for months. It comes to my mind most often when I'm going through a hard time. Whether it be Ava struggling physically, or me struggling emotionally to wrap my heart and mind around what has....and is.....happening to every person in this family because of Ava's disability. When I'm struggling to try and accept what her future may.....or may not hold.
When I'm feeling sorry for myself..........because NOBODY could possibly understand what we go through. The sleepless nights, the YEARS of no sleep.
The crying.
in my car.......on the phone to my husband......and as I lay down to sleep......with my 2 year old next to me because she can't sleep alone......because she might die in her sleep.....from a prolonged seizure.
The guilt....that I'm not doing enough.....that I haven't done EVERYTHING THAT COULD POSSIBLY BE DONE for my daughter, to help her live a normal life. That I'm not smart enough to understand all the in depth medical terminology tossed around me on a daily basis.
God....why couldn't you have picked a Harvard Grad. to take on this job *LOL*
Nobody mentions.......the guilt.
So I've gotten totally off track from the story I wanted to tell so here it goes:)
: and how cool would it be if the people involved in this story actually read this and freak out thinking how such a thoughtless statement.....affected someone else right down to their core:
When Ava was in the Pediatric Intensive Care Unit this past February with Flu/Pneumonia (caused by aspirating due to a 45 minute status seizure), then a case of life threatning sepsis, we ran into another family in the ICU lounge. Their son was in critical condition after suffering a bowel obstruction, and emergency surgery. Their son had Cystic Fibrosis.
We had seen each other for over two weeks...here and there....and we shared bits of information with one another while we were passing through. On our last day in PICU, after 21 days in Intensive Care, I ran into them that morning.
We exchanged e-mails (of course, I lost the teeny, tiny, piece of paper I shoved in my bag) so I was never able to contact them, although maybe they still have my e-mail:) We got to talking about friends and family, and I said "I struggle so much because nobody in my life REALLY understands what we are going through, and how hard this is....day in and day out".
He turned to me and said....so simply "I would never want any of my friends or family to ever understand what this life is like. I would never wish them to even live one day like this."
It just hit me like a brick.
This man, as his son was fighting for his life, still, never coveted the one thing I can never get off my mind. The reason I'd just rather walk around angry and bitter, because nobody understands. Whatever they say, do, or don't do (my major complaint) is just always wrong. All wrong.
So when I get in this mode, my heart takes me back to the PICU lounge. Over, and over again. Until one day..I'll finally just get it.
It will be one of those moments that I get an overwhelming peace, and know in my heart.....I can just let this go.
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7 comments:
That's beautiful - thanks for sharing.
I came to your blog by way of the keto Yahoo group. It's tough to find blogs of families dealing with epilepsy in children who don't also have other severe health issues, so I'm glad to have found you!
My little girl started having seizures in late May (age 2 and a half), so we're sort of just starting down this path.
All the best to you!
B...OMG. I have two VERY strong emotions right now. One..why the heck did check on B's blog anyway! and Two...OUCH!
What powerful words...that story totally needs to be told! And as much as I'm love-HATING it...I really really needed it. I've been struggling with the same thing...especially as Trevy's seizures are back. And I've been fighting the bitterness (especially towards family)who look at him and see *normal*...while I look at him and wonder what's lurking. I know the peace will come...every now and then it actually seeps into my heart. And I truly hope that one day...I can say (and mean) the same thing...
(((((hugs))))))
...d
oh ps. Except for DHS employees...I may wish something even worse on them!
Fawn, Keto was a very good therapy for us, and has provided us with some very good seizure control at times. I hope keto helps your daughter...it has been love/hate with us.
D.....
I love/hate my post as well *LOL*. I really wish his statement didn't affect me the way it did. When he looked at me with the utmost sincerity, I felt like he could see though me.....almost like I stole a cookie out of the cookie jar. *LOL*
I hope some day I can be in that place. His statement "convicted me"...and I'll never forget it.
Wow, the memories your blog brings back. Not that *ours* is totally history, but things are so much better for us now. The Blue Jay (as I call her) is 15 and I well remember a time when she was 3 or 4 when I felt so helpless, so useless and so unable to cope. Ironically, that was just before we started the keto diet. We did something like 9 drugs pre-diet (that never so much as put a dent in her seizures). We were then on the diet for about 6.5 years. It was the ONLY thing that gave us any control up to that point. At first, we went almost 2 years seizure free, then lost control, regained it and went 1.5 years seizure free.
Well, too late to make a long story short but ... she's been off the diet for four or five years now, we have FINAlLY found a med that works for her (Keppra, thank you Lord!) and although we continue to struggle with other issues (developmental delay, autistic spectrum disorder) life is soooo much better.
So I write all this to tell you two things ... first of all, as hard as it may be to believe right now, you can never give up hope. I found it ridiculous when pple tried to tell me that the Blue Jay might "grow out of it" and although that hasn't happened, at least we have found something that worked. Never, ever give up!
The second thing is about the keto diet. I don't know who your neuro is or what centre you go to, how well-trained they are in the diet. But I do it's absolutely CRUCIAL to find someone who really knows what they are doing when it comes to the diet. Unfortunatately, many don't. And they will be the ones that are the last to admit it.
No, the diet doesn't work for everyone but when it does work it truly is a like a miracle, a gift from God. And yet I have seen way too many kids shuffled off it too quickly without enough effort put into fine tuning. Are you on the keto diet group on yahoo? It is a large group with a wealth of valuable info. It was my home for years.
As I said, the Blue Jay is no longer on the diet but I still belong to a different email group called the Keto Cafe. Although many of our kids are no longer on the diet and we have become close personal friends that discuss anything and everything, we are always happy to welcome new parents who are trying the diet. There is a weatlh of knowledge and experience there too. We all know how you feel, where you've been ... you're welcome to drop by if you like and let us know your daughter's stats (height, weight, ratio, etc.) and we would be happy to try and help. There are few things worse than feeling like you're fighting those monsters alone.
http://health.groups.yahoo.com/group/KetoCafe/?v=1&t=search&ch=web&pub=groups&sec=group&slk=1
Anyway, all the best to you and your family. She is a beautiful little girl.
Wow...that post really hit home. I am so there with you. I hope someday soon that we will all be able to find peace in our hearts.
Hello, I stumbled across your blog by googling 'digitrace for my 3 year old,' and boy was I suprised to find someone put into words exactly how I feel right now. You see as I type this my daughter is in her room struggling to fall asleep (and trying to ignor me popping my head in every five seconds to check on her) because this is her first night wearing the digitrace. We have been two months seizure free (knock on wood) but we are making sure she isn't having any while she sleeps. She is prone to going into status e. as well and her last episode last august (07) lasted 5 hours and she almost died. It has taken us a whole year to get to this point because most of the year she was having seizures 5-6 times a day. She also suffered bilateral strokes during her birth which is why she now has the medical conditions she has. I hate status e. I hate worrying about it, I hate thinking about it. I see you have a community of people going through the same things. It's awesome that you all can share your experiences together. Ava sure seems like a very strong little girl with a heart of gold. (On a side note my youngest daughter's name is Ava as well!) I hope you didn't mind me stopping by, feel free to visit me at my ste although it has been a while since I wrote anything with all thats been going on but I hope to get back into blogging soon. Take care!
xoxo
Shannon
Wow!
Thank you for sharing this and helping the rest of us to deal with our emotions,our resentment, our guilt and gives us some further insight.
I hope your angel (girl in disguise) is doing well.
Hold each other close.
Mrs. RWB
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