Saturday, January 17, 2009

A reminder awaiting me in my Inbox ...




The other night before heading to bed,I checked my email.There,a new message.Subject:Infantile Spasms.An email from a frantic mom, seeking support,for her son who had just been diagnosed with Infantile Spasms.In that instant,as I read her email,I was immediately taken back to this time last year.Well,almost this time.February the 5th to be exact.The day Zoey had her first cluster of seizures.A day that changed our life and most especially Zoey's life, forever.I composed an email on the spot.Shot it off to her and sat back.I hoped my words were enough.I hoped my advice helped.Mostly I hoped that whatever direction she and her son were heading,I hoped they found his miracle.I have to say,that from February the 5th, until Zoey found her miracle in the drug Topamax,those days were the most difficult and the darkest.Yes,even darker than the fight we wage now against leukemia.It would be difficult for me to explain the exact reason I say that and probably even more difficult for you to understand.That is unless you are a parent of a child who has suffered or still suffers from this catastrophic form of epilepsy.Infantile Spasms is a thief who comes quietly and without warning.It silently robs your child of milestones they have reached and most especially those they have yet to make.Infantile Spasms is a rare disorder and it is tremendously difficult to control and it is just,for lack of another suitable word,just plain ugly.For Zoey,I can say,without a doubt in my mind, that the delays you see in her right now are not due soley to the fact that she was born with Down syndrome,or that she suffered a stroke in utero.Or still yet,that she spent 6 months of her life,flat on her back,g-tube fed 20 hours a day,awaiting heart surgery, as far from adequate amounts of oxygenated blood coursed through her tiny body.No,I blame Infantile spasms,as does her neurologist,Dr.Donald Shields.Infantile Spasms is an insidious disorder and the reminder that came to me the other evening was actually not what you might think.I did not dwell in what was or what could have been.The email did not elicit immediate bitterness and resentment.Instead I was filled with such gratitude that Zoey has found her way out of that darkness.Out of the haze and fog that encased her for all of those months.I will never ,ever forget that dark time we passed through and I honestly can say that the memories of the long,heart wrenching days of failed medication and escalating seizures is certainly hard to erase from my mind.Pictures I look back at of that time,are adequate reminders.This blog is a reminder as well.I started this blog after her seizures began and it was a lifeline.It continues to be one.I have met the most amazing children and families.Most of which will forever be part of our lives in some way or another.One amazing little child is Sweet Sophie and her mom Elaine.Right before we were released after Round 2,a package arrived for Zoey at the hospital.In it,this darling onesie and pair of babylegs.We can't thank Sophie and her family enough for their love and support and ongoing prayers.We feel blessed that through the darkness of Infantile Spasms we found the light of their Sweet Sophie.We have to always remain hopeful,always.We must always see the light that shines before us.And yes,sometimes that light is that of an oncoming train.But we still continue to search.I thank God daily for the beacon of hope I find in these children.That even during the darkest, most senseless moments,the hope I find in their journeys,lights my way.

"From within or from behind, a light shines through us upon things, and makes us aware that we are nothing, but the light is all." ~Ralph Waldo Emerson

22 comments:

Jaxsons Fight said...

I'm so glad you were able to help that mom. I'll never forget when one neurologist said that his siezures were infantile spasms. I looked it up online and it is devastating to read about. He is also on topamax, after he finished his ACTH therapy.

Jaxsons Fight said...

I just saw that you are in So Cali. Where do you live? My hubby is from there and his aunt lives in Simi Valley. We go down almost every year, and plan to move there when my hubby finishes school. We are coming down April 3 - 15. We need to get together.

Jaxsons Fight said...

Wow, that would be so fun. Does she have to be inpatient when she has her treatments? What hospital do you take her to? We were going to check out LA childrens. We've been to CHOC and we weren't impressed. My husband just said we should go to chuckeecheese in Simi Valley. We are going to Disneyland the 11th-15th.

Reagan Leigh said...

I LOVE that outfit!! Just precious. Unfortunately we still live in the nightmare that is infantile spasms. But we find hope in watching other children receive their miracles of seizure freedom and we wait (usually impatiently) for Reagan's miracle to come. Someday our lives won't be ruled by seizures. Someday Reagan's mind will be clear and she'll be able to reach milestones. I just wish someday would come a little sooner.

Kristy said...

How often can I tell you that Zoey is beautiful?!?! Everyday perhaps?? I love LOVE LOVE her outfit!! Zoey looks so happy and cute and her hair looks so silky and pretty...no need to cut it at all I think!! Lots of love over the blog. Always thinking of you and the princess!! xoxo

Jeanette said...

The outfit is almost as precious as Miss Zoey. You are truly a blessing to be able to reach out to that family and provide some experience and comfort. Just knowing that they are not alone and seeing that there is a light at the end of the tunnel is HOPE. Blessings to you and the ministry that you provide!

Jennifer Mezines said...

I learned of Zoey's story from my friend Elaine....Sophie's mommy. Elaine ordered the little onsie from me, and I was so glad to make it for her. I have been following her story for a while now. How lucky she is to have you....and you her! She is precious.

Ruby's Mom said...

It's such a blessing to get to read your blog.You are such a strong woman.You give me hope that I will be able to make it through whatever may happen in the life of my little Ruby.I love all the pictures you post of Zoey,she is beautiful.

Judy said...

I see a modeling career in Zoey's future :) She looks darling!

Mrs. Hefelfinger said...

I second what "Judy" said - when this is all behind you, Zoey needs to model and have her own line of clothes (g-tube friendly) like the Olsen twins. She is seriously one of the most gorgeous kids I've ever seen!

Mia hat eins mehr said...

I just wanted to wish you all the best for the upcoming days. I am with you.

Love
Claudia

Jamie said...

I am in instant love with this kid! I stumbled to your site thru another that reads mine etc etc..lol My Madison has been battling seizures for a year..she is pretty delayed..does not have downs syndrome like Zoey but shares the same unruley beautyfull hair!AND the Infantile Spasms when she was younger...I guess not much to say but she is so pretty...squeezes my heart she does. :) Madie's Mom (CT)

kathleen said...

Heather, you must tell me where you shop for your little star. I have three grandchildren that I love to shop for!

The VW's said...

I agree that seizures have got to be top on the list of what has been most difficult to watch Gavin have to go through! I am SO thankful that his have gotten under control! For awhile he was on 3 meds for the seizures, but thankfully he is now only on Keppra and so far it's working. I was always so anxious during those months, having to watch him seize and not being able to do anything to stop them! My heart goes out to all those still affected by them!

Again, Zoey has put a big smile on my face! She is just too precious for words!

Kele said...

I am sure your words helped that mom, I know I don't know what I would of done without you when Pres was in the hospital. Sometimes I feel I haven't even come close to repaying you for that time.
Good luck tomorrow!! Love to you all!

Anonymous said...

Love her new outfit! That is a thought - a modeling career - Zoey's own special line. Hey, the girls did TV commercials so maybe Zoey will "do her thing"

Hope the weekend was great with everyone home.

Thinking of you all this week with the big trip back to hospital

Take care

Bluebelle PS(very cold here in CNY MINUS 14 wind chill here Saturday. Oh well, January in Syracuse! Remember those days Heather & Mark?

Anonymous said...

My friend, Jennifer, sent me your blog today. It made me cry, your description of the darkness of Infantile Spasms was spot on. Thank you. My son, Tommy, suffered from Infantile Spasms. We went through the merry go round of medications for 4 months before we found seizure freedom with ACTH. We have been seizure free for over a year and med free for 2 months. We are grateful for every seizure free day and we know we're not out of the woods (he has focal cortical dysplasia).

Tommy will be 2 next month. He walks and talks and is catching up to his peers! When Tommy was first diagnosed, I wanted nothing more than to hear a success story. My name is Kerry and if anyone wants to reach out to me who is suffering from this, please contact me at kerry_youker@yahoo.com. I'd love to help.

Anonymous said...

The Light shines through Zoey and her family. Thinking of you today, Monday, with lots of love and mega prayers. xo Christi Harman

Cjengo said...

I am so glad Topamax worked for your little girl. So far it seems to be slowing Jude's, but they have not stopped all together. Your daughter is just precious!

Cjengo said...

ps ~ My great great {however many greats} ha. grandfather was Ralph Waldo Emerson that is my maiden name. I love that quote of his.

Sophie's Story by Elaine said...

Zoey looks so adorable, as always! Thank you for the kind words. Even though we are still battling seizures on a daily basis, we are no longer in that deep dark place. It is still hard but it is hard to stay in that place when Sophie is so incredible happy most of the time...as you know with Zoey. It is amazing how strong our little ones are and how much they teach us. I hope things went much smoother with admission this round.

jotcr2 said...

Couldn't agree with you more. Infantile spasms cause a lot of delays as well as Down Syndrome. Sheena regressed to new-born skills when she was riddled with Infantile Spasms at 6 months to 1 year. At 3, she is now doing just great. Congrats on the new success.