But it was not a nightmare. And it was today. This was not someone else's life...it was my own.
Our son...our beautiful son...was given the rare & devastating diagnosis. Infantile Spasms. Being of the web savvy generation...I immediately googled. Where I sought the comfort of community. Of information. To the very bottom of my soul I needed to know what we were up against. I needed to look the Beast in the eyes. And so found myself saturated in the journey's of other IS families. Both through websites & forums. And during those early hours...I learned two things very quickly. Two things that melted what little courage I had left. And left me a puddle on the floor again.
Every IS parent desperately wants the unimaginable. Their child to be a candidate. A surgical candidate.
and
If that miracle option presents itself? You should pack your bags & board a plane. To Detroit. Where The Brain Surgeon resides. To Chugani.
Last December we were at the tail end of our first round of ACTH. And not only had Trevor been given seizure freedom...his EEG indicated he had a focus. Although subsequent EEGs revealed it to be foci...rather than a singular focus.
But armed with the knowledge that Trevor could be a miracle brain surgery candidate...I went toe-to-toe with the establishment to proceed with testing in that direction. And although the protective passion of a mother can be formidable...I did not win at that time. Trevor was SF...and doing well developmentally so it was deemed unnecessary. But we made a peace treaty...
If anything were to change...
Over time the passionate fire in my belly mellowed into something more like the lazy embers of last night's bonfire. Smokey. Bordering on dormant...
Then change came. Again. Trevor's IS was no longer in remission. He had relapsed. And we are back to having 40 seizures a day. Only this time...the medications are not taming the spasms.
And yet...the certainty I felt just a few months ago is no longer there.
Anytime I find my thoughts drifting in that direction...I smoke the brakes. Unable to let myself imagine Trevor in hospital garb. Or Detroit. Or sterile rooms & scalpels & shaved off curls on the floor.
It makes me queasy. And the coward in me is creeping upwards. Extinguishing the passionate fire that ate me from the inside out just a few months ago. Where did the courage go?
I didn't sleep well last night. Which always leaves me weak. And today there are no flames of courage. Not even embers. There are only tears. And fears. And prayers. Begging God to let the next drug be our miracle. Jesus...please...
Just reading about another family's courageous journey to Detroit had me weeping...
And today...I just don't know where the courage has gone...
Maybe after a good night's sleep it'll return? Maybe Vigabatrin will give us a miracle and I won't need it? Maybe it's okay to be scared sometimes? Maybe it's the coming to terms with the fear that makes us strong? Maybe courage is actually faith & fear woven together? Maybe one day I'll look back at this time in our lives...and see Courage was there all along...
(This day one year ago we sat in a waiting room. For 6 hours. While a surgeon repaired Trevor's 6 month old broken kidneys...so we could take him back to Africa. Maybe the nostalgia is overwhemling me? Maybe I'll feel cowardly every October 1st?)
13 comments:
It is okay to feel scared and overwhelmed for a day or so, but you need to pick yourself back up and stand to fight again. And you will stand to fight again, that's just who you are.
While Chugani and team are excellent, don't think that there aren't other skilled surgeons out there. Proceed with Boston and only if they can't agree that sugery may be an option, THEN seek out Detroit and Dr Chugani. Never forget that Boston is at the tops of the Ped Hospital chart worldwide. I was VERY confident in the team that did Austin's brain biopsy at Children's and the PICU teams where outstanding. I wouldn't hesitate to return there.
Thank you for posting a link to Jackson's blog. He and his family definitely need all the prayers they can get at a time like this. It's true that they are one of the lucky ones (as strange as that might seem)...to have surgery as an option. And although it's a great option to have, it's a very very scary one at that. They still have a long road ahead of them (with Friday perhaps being the most stressful)...please continue to keep them in your prayers!!
((((((((((SUPER BIG HUGS))))))))))))
xoxoxox,
sharon
Wow...what emotional pictures on that blog. I know how you feel about surgery. I, too, am hoping to find an answer through medication.
Now that a "possible" focus is presented before us as well, it brings more fear than anything.
Although, to be honest, I don't hear of many parents who regret surgery. And I also agree with Jenn about BCH. I've heard many families very happy w/ their surgical outcome etc. there (although I know Chugani says their PET scans stink...etc.)
Our next step will be the 3T MRI...then BEAM.....then...we'll see.
Big hugs and much love. We are not surgery candidates at this point, but I can imagine dealing with the possibility of surgery is just heart wrenching. Our prayers are with you.
We love you guys!
-Shanna
Jen...you're right. It's not my style to stay down. I've always been a fighter. In fact...when J & I did premarital counseling the Pastor looked at me & said that the Fighter Spirit in me would be my biggest strenght & weakness in our marraige! lol He was TOO right! But...here...in this place of making tough decisions w/o promises...it just sucks sometimes. Ugh! And I know you're right about BCH. I know you are...it's just I almost wish I'd never heard of Chugani so I didn't have to second guess! *ha*
Tera...Jackson & his fam have been in our thoughts & prayers!
Sharon...I love you too!
B...so here's my deal. I think we should go have our 3Ts done together! *smile* We had to reschedule for the 19th...it's a Sunday. I'm probably jumping the gun anyway...from what I've read about Vig it's quite possible it'll control Trevy's seizures. God I hope so...
Shanna...thanks sweetie! I'm so happy that Kay is SF and you don't have to even think about it! xoxoxo!
...danielle
Since I don't have a child with IS, it's hard for me to relate. But as a mother, I can understand your worries and fears of possible surgery. Know that my thoughts and prayers are with all of you. {hugs}
Promise me that if you do decide to come to Detroit for anything, you'll let me know. We live in the area and I would love to meet you guys.
Vig worked for us. Emma's vision wasn't great before we put her on it, but then her vision did get worse. We're not sure if it was any of the medication or just the seizures. I believe her vision is getting better! We have an ophthalmologist appointment on Monday. We'll see what he says. I'm considering a 2nd opinion, but I know it's difficult with such a small baby to say one way or another.
Besides all that, I think the Vig was a great thing. Getting it was a pain. Lying to get it across the border was a stress I didn't need, but it was quicker and cheaper than mail ordering it (from what I see on the IS group). We spent just over $100 for 100 powder packets. Emma was on such a low dose that 100 packets lasted 3 months.
Um. That was long and so off topic in places. All I really meant to say was Vig is good and be strong. We're all here for you.
:)
I'm praying extra hard for you that you are able to find peace with whatever decision you make. And that the vigabatrin is the magic bullet for Trevor!
Andi- Vig isn't that much more expensive from www.mastersmarketing.com. It does take about 14 days though to get your order. In the future it may be easier than lying to get across the border :)
I am glad it worked for your daughter. It worked for my Austin also.
Has the ophth done and ERG to determine if the vision issues are cortical vision impairment or actually visual field lose from Vig? The best ERG is done under sedation but may be worth it for peace of mind. Austin ahs had 4-5 done under sedation.
Adesta...it warms my heart that you've fallen in love with our (mine & Jen's) kids enough that you follow their stories! It means the world...thanks!
Andi...your every-where-and-back-again comment cracked me up! And laughing makes me feel good. Of course we'll get together! btw...who does Emma see?
Karon...we were commenting on eachother's posts at the same time! *smile* Thanks sweetie...and btw your post was beautiful! So so beautiful! Girl...you're good with the gutsy stuff too! (((hugs)))
...danielle
Emma see's Dr. Mary-Eileen McCormick. She's a ped neuro with the Michigan Institute for Neuro Disorders (MIND).
Emma's first trip Children's Hospital (which I wasn't present for most of), she saw Dr. Chugani. That was before our IS diagnosis. At the time, I don't think she had IS, or I'm sure he would have caught it. If I met him, it was on the last day I was there and had no idea who I was speaking to and how truly important he was to so many people.
On our 3rd trip, we saw Dr. Huq. He was a nice man, but I'm not sure he realized the wonders of the internet. He just kinda tossed out that she had IS and here's what we do. No real explination and I had no idea to ask. Days later is when he tossed the Canavan's Disease at us over the phone.
In the 2 days he said that to the time we went to our regular neuro, we already knew everything there was to know about Canavan's. We had shed every tear available in our bodies over the next 7 days. And then Dr. Huq called our neuro back and said that it was all a mistake. He also called us, but we weren't home. He was very nice and really helped us get the Vig (he has a Canadian license).
As you can see, I'm long winded. And now I need to feed Emma her breakfast and meds before she eats the blanket.
We all have our moments, don't we?
Sometimes I think that it's necessary to melt in order to have the strenght to pick yourself up and go on. Kind of an oxymoron, isn't it.
Courage and peace to you, my friend.
Many hugs,
M
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