Friday, May 07, 2010

So the story begins...

I have been flooded with raw emotions lately. So much has happened in the month of May over the years. So much is happening now. And it is consuming me. Flashbacks of the past are haunting me. Flashbacks of seizures and surgeries...all the pain and suffering she has been through over the years. I cannot stop thinking about it. I am struggling. I am fighting back the tears. I am overwhelmed with guilt. I want to go back in time and fight harder (for so many different things on so many different levels) because I have learned from my mistakes. But, with everything in life, it is not until you live through it that you know better. But because it was my child suffering, I cannot help but blame myself.

I VIVIDLY remember Sophie's first cluster of jackknife seizures. It was May 7, 2006.

We went to visit my sister and her family at their condo on the lake only a few hours away from where we lived. It was Sunday and we were getting ready to leave in a few hours. Erin and I along with Sophie stayed behind while the rest of the bunch went fishing on the boat docks. Sophie had a little bit of a stuffy nose. As I laid her on the ground, she did some odd "movements". Her arms went out and her eyes slightly rolled back. She made this odd noise through her nose. I thought it was strange. And then she did it again. And again. And again. Maybe 8 times.

I picked her up and she fell asleep on my shoulder.I looked over at my sister and asked her what she thought. She did not know what to make of it. I do not know why the following words came out of my mouth. I have never seen or knew of a person who had a seizure. But I asked her if she thought it was a seizure.

Initially, I blew it off. I became preoccupied with packing things up. But once we got home, I could not stop thinking about it. So I called the pediatrician's after hour service. They said that she was probably having a hard time breathing since she was stuffy. So that was that.















10 comments:

Lisa said...

Such a beautiful little girl now and a beautiful baby back then! Julia first had her seizures right before Memorial Day weekend 2006. Memorial Day has always had a dark cloud over it since. I didn't know they were seizures at first, didn't even suspect until they started happening multiple times a day.

I have my moments where all that Julia has been through overwhelms me too. And last night it occured to me...the horrible, non-stop seizures she had in the hospital right before surgery when she was completely off her meds...that would have been her life every. single. day. if she had been born 50, 100 years ago. In fact she'd probably not be alive now. It was sobering and made me instantly grateful for the times we live in now.

Not saying any of that for any other reason than it's been on my mind.

And honey, please PLEASE don't feel guilty. Hindsight is definitely 20/20 when dealing with this stuff.

happy's mommy said...

I don't know whats going on with me either...I'm very weepy. And having dreams about seizures. Not flashbacks so much. Probably because my memory is jack. But the dreams are horrible...so real. I woke up this morning sweating. What the heck.

I've been battling guilt too. Wondering how I could have given up on his ability to learn before surgery. Why the hell didn't I push for more therapy. Why aren't I pushing for more now. It's been eating me alive too. I know exactly what you mean...

It's weird though...because I look at you and see an amazing warrior mom. Who has fought desperately for her daughter. You didn't give up when you were told no by Chugani...how many times? You kept fighting. And look at Soph today...she's breathtaking. Truly...breathtaking. I don't see mistakes when I look at you. I see strenght...courage...beauty. I feel stronger with you. I love you, Elaine. And I'm all sappy and weepy today. Ugh.

xoxo

...danielle

Anonymous said...

"12Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me. 13Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, 14I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus." Philippians 3:12-14

I don't know you, but I have followed Sophie for quite some time. And while I don't think that you could literally forget what is behind, I just want you to know that so many people that you don't know care about Sophie and your whole family. None of this is in anyway your fault and as a mother I know you feel that you should have known or done something more. But just look at how far Sophie has come and while I know she still has a long way to go hang in there and try to focus on the good. I will keep you in my prayers.

Another Mother

MJStump said...

i know it is so hard to be strong and try to skip past those days and memories that are forever etched in our minds.

we recently passed kylie's anniversary of the first day i saw something, and the day she was diagnosed. we are closely approaching the anniversary of her last seizure...i know sophie's isn't too far behind kylie's.

all of those days are tough to get through, and even the days before them...it's like they are just haunting us, as we know they are approaching.

i think as a mom we are always wanting to do so much more than what we can do...more than we even know to do. you are an AMAZING mommy, and that is so evident in all that you have done, and are still doing for the sake of Sophie. don't ever doubt that.

just look at her and you will see how Sweet and Awesome she is...she got there because of YOU and brandon and your amazing support system.

sending much love, hugs, and prayers,

jody

Anonymous said...

Oh, Elaine, there are so many things in life we can all feel guilty about but I can't imagine that you could have really done more to fight this battle for Sophie. As soon as you recognized the problem you never stopped searching for the treatment and therapies that would give Sophie the best outcome possible. Today her progress is absolutely amazing.
I hate to tell you but I do know from experience that you're going to feel guilty every time one of your children is hurt whether it's physical or a matter of having someone break their heart, or they fail at a task. Moms always take it on their shoulders....I should have been there to catch them or given them more homework help or taught them to recognize when a "friend" was really a creep or wish I had read one more goodnight story instead of turning out that light.
I'm not trivializing Sophie's plight but I doubt she could have had a better person in her corner. You and Brandon have left no stone unturned. Keep plugging away and I know Sophie thinks she has the best Mom.
Hope you had a wonderful Mother's Day.
Love,
Barb

JSmith5780 said...

Being a few years out, I can say, you will start to write over those bad memories with better ones and soon those good memories will be the ones that come to mind first. I hope this Mother's Day allowed you to create some happy moments.

blogzilly said...

Hey soul-sister, I hope you feel better. The anniversary dates suck, don't they? Especially as we struggle to see the potentials realized and they take so long to materialize. Sinead had a great term that I am adopting.

Inchstones.

So-called 'normal' kids have 'Milestones'. Ours...do not. They have 'Inchstones', and it's hard.

I'll have a good bawl today in your honor, kiddo. ;)

Susan said...

Hi Elaine,
I too do not know you, but have followed Sophie's journey thru your awesome blog. My son has LGS and is 3 1/2. You have helped and inspired me more than you will ever know. (You also inspired me to write a blog for my family and friends.) I think Sophie couldn't have asked for a better mommy or family. Take care.
Susan
I love that her helmet was pink. She was a beautiful baby with a sweet smile.

Anonymous said...

Aloha Elaine,

10 years later and I'm still doing it...the guilt, the memories, and the wishes for a "normal" life for my child. We look back and know that the time he "fell" down the stairs was a seizure, and darn, didn't I wish I was better at taking vitamins before I was pregnant. BUT, at the same time, I am telling other parents how awesome our soccer program is for kids with special needs and we absolutely LOVE Special Olympics...so, maybe that's just the way it was meant to be. Of course, I wish he was going to the high school dance and playing on his high school baseball team, but he has something else. And we love it!!

Go ahead and cry...it makes you feel better. And think of the what ifs...we all do. But, as we see you do, continue to embrace the wonderful miracles of our babies who have only half of their brains...because they are amazing!!

Hugs,
Sheila

P.S. Maybe someday we can have some sort of happy get together....Hawaii maybe???

Holli said...

Oh, man...May is crap for both of us. We started this in May too and it's probably the most difficult time of year for me (October ranks up there too -Austin's birthday). But, Sophie also had her surgery at the end of May, didn't she? Or early June. So, I can't imagine the emotions you're dealing with. I so hope you're feeling a bit better now.

By the way, I really enjoyed the baby photos. I haven't seen many of her when she was that young. What a sweet baby girl...

hugs!!