Monday, August 09, 2004

Where were you?

See how far we've come...
This poem was written by another parent who is a memeber of my online support group for special needs kids. I emphasize that I did not write this...

Where were you the day you got the news that changed your life forever? Where were you that fatefull day the world fell apart at your feet?

Where were you when the shattered fragments of your hopes and dreams came raining down?

Did you sink to your knees as reallity slammed into you? Did tears stream down your face ?

Did your heart break in two? Did you cry out in anquish or scream in rage?

Did you keep it quietly inside? and how did you live with the horrible ache?

How did you face another day? Do you rember that day as if it were yesterday ?

Is every detail etched into your mind?

Where were you the day your world collapsed? Did you know it would never be the same again?

Where were you the day your world caved in like mine did today ?

Many of the members responded by posting their own experience of "that day." Here is my reply:

Its been almost a year since we learned our sweet girl was having seizures. Looking back, it hasn't been just "one day" when we realized our world was forever changed. But, I think that is the way it goes when you have nothing but "normal" test results, and an "abnormal" child.

25 weeks pregnant - I was driving to work, and realized I was having painful contractions about a minute apart. Not sure why I didn't pull over and call 911, but I managed to make it home and have my neighbor drive me to emergency. Turns out, I had a kidney infection and kidney stones - the pain was causing contractions. They did an ultra sound to make sure the baby was fine - and she was! In the back of my mind I wondered - and to this day, I still remember that day and wonder...

Jenelle at 5 days old (October 27, 2002) - I was sitting on the couch watching the Anaheim Angels in the Game 7 of the World Series in the 9th inning. Our team wins and the room burst into happy screams and cheers. I looked over at Jenelle in her bouncey seat, and she didn't even wake and does not seem bothered by the noise. A feeling in my gut tells me this isn't right.

Jenelle at 10 weeks old - Her first day in day care as I went back to work. The day care provider pointed out just as I was leaving that "Jenelle doesn't smile much does she?" I brushed it off because our doctor said she would be delayed because of her prematurity, but my stomach lurched wondering “what if she doesn’t see?”

Jenelle at 6 months old – Our pediatrician finally agrees that she is not where she should be developmentally. We get the referral to the Neurologist. 3 weeks later, we are sitting in the Neurologist waiting room, watching the other children and their parents, seeing their wheelchairs, their behavior, their cries and moans … we wondered if this is what we had to expect, or if we should be thankful for what we have?

September 8, 2003 – After just sending out a positive email to family and friends about Jenelle’s first EEG, I get a call from the Neuro. Quick responses don’t always mean good news. Her EEG is very abnormal and he wants me to look up “Infantile Spasms” on the internet. He wants to see us immediately the next morning to discuss and begin treatment. He mentions hospitalizations, daily injections, something called ACTH, and that this was “not good news” at all. I was so naïve… I think “Epilepsy is good – at least we have a name, a diagnosis! There is medication for Epilepsy!” Then I search the internet and what I find is grim. I see things like “severe mental retardation”, “very difficult to control” and “short life expectancy.” I still cry just thinking about it. I mean honestly, how many times does a doctor tell you to search something on the internet so you know what to expect, rather than tell you what he knows?

September 11, 2003 (yes the second anniversary of 9/11) – Jenelle’s first hospital stay for her 24 hour EEG to confirm the Infantile Spasms diagnosis. I’m still naïve and fairly hopeful that this news isn’t so bad. I am calling UCLA to try frantically to get in for a second opinion.

October 15, 2003 – “Sleeping all the time is not a good thing, why don’t you bring her into emergency”… Jenelle’s first status seizure ending 6 days later in the hospital.

March 18, 2004 – UCLA mentions the possibility of surgery – removing half her brain! At this point I already knew the surgery existed. The first time I learned of it, I wanted to throw up - I couldn't fathom the idea of making a decision to remove half my child's brain. This time, instead of wanting to throw up at the thought, I’m actually hopeful and optimistic and realize this may be the only way to give her a chance at a normal life!

April 28, 2004 – At 3:30 in the morning, Jenelle has a 7 ½ minute grand mal (her longest ever) while in my arms while hooked up to the EEG at UCLA. Her lips turn blue. The next morning we are told she is not a surgery candidate, and that she has Lennox Gastaut Syndrome – even worse than Infantile Spasms.

May 7, 2004 – Her “special” school informs me that the Lennox Gastaut diagnosis makes her “too unstable” to be "in center" at the school. Effective immediately, they send her home with instructions to have a nurse sit with her. In my mind I know Jenelle is no different than any other day, but this is the first day my child is discriminated against because of her disability – and she is only 18 months old.

I’m sure as time goes by, I can add more dates. These are the ones that stand out in my mind’s eye today. The days I was stunned, scared as hell, emotional, in denial, angry and knew that my life would forever be different because of my beautiful little girl, who's disability and seizures are still a mystery.


Anonymous said...

I'm daughter Tammy
is 22yrs. old..
She has Lennox-Gastaut Syndrome..
she has had a long journey..
but she has retained the
adorable unique personality
she had as a little person..
people really like her..
you will continue to find
your of luck.

Emily Klare's World said...

I have a ten year old little girl with Angelman Syndrome, symptoms very similar. I feel for you and pray for you. This certainly isn't easy, but the rewards are incredible.
Emily's mom

Julia Oud said...

Hi there,

I have a four year old boy with infantile spasms.

The day I found out (when he was 2 months old)was the worst day of my life. Our plans for him and hopes and joy of our first child all got swept away.

Weeks after, I remember looking at my son and thinking he is the most special, beautiful little thing in the whole world. I could never love anything more, and four years on, I still don't.

He has come a long way, better then the grim prognosis we were given. I try not to think about the bad things associated with his condition, and I only take one day at a time. That is how I get through it.

Anonymous said...

Hello all,
I have a 7yr old son who was diagnosed at 3 mos old with infantile spasms. I remember the doctor telling me he wouldn't be normal, more than likely a vegetable and she hoped I had a lot of help because I would need it. He was later diagnosed with Lennox Gastaut. I've questioned God and shed a lot of tears, I still cry now. I dont know what or if anything else can be done but I'll cherish the time I have with my sweet boy and make it as full and rich as possible for him.