Friday, June 05, 2009

SOPHIE'S ADVOCATE

This will be my final post and I will give Elaine her blog back permanently (with one suggestion, you may want to update the header in the beginning of the blog). My brother and I teased her relentlessly since the success of the What is That Beeping post…she even changed the password. Jealousy in my view :) We would count the number of comments telling her that she would never beat my record. My brother told me never to post again and go out as a one hit wonder. Hopefully this post sets a comment record…to honor the real reason Sophie has been given this opportunity at a better life.

I had the hopes and plans of writing this post for some time now. Hold on while I leave my man card at the door (man I wish so many co-workers didn’t follow this blog now). Ever since Sunday May 7th, 2006, at 11am to be exact, Elaine has been fighting. As I mentioned before, I handle difficult situations by assuming the worst and hoping for the best. When we held each other at the hospital the first night when receiving the news that the MRI was “clean” (we found out later on that in fact it wasn’t as we repeated the test in Detroit), Elaine proclaimed “our baby girl is going to be alright” with tears of joy pouring down her face. I, on the other hand, was thinking to myself, “heck with that, this is just the beginning”. This was the first of multiple times that this same embrace (and thought process) occurred. In many respects, we were both right.

But Elaine believed what she said and there was no way that she was going to let any doctor tell her otherwise. I must admit, this whole support group and blogging thing seemed pointless to me…a complete waste of time…depressing… There was a time when I resented this community for taking so much precious time we could be spending as a family. You guys were stealing my wife from our marriage (to be fair, we found two…VERY SHORT…opportunities for our marriage that resulted in Elsa and the baby boy…but I digress). Carpe Diem, right!!! We were dealt this sh*tty hand but lets enjoy the days (at least the seizure-free parts of them) that we have together. Maybe I had a right to feel this way; however, I couldn’t have been more wrong. This community is what took us on this journey that has brought us over a week of seizure free days.

I (selfishly) don’t want to leave the impression that I gave up, because I didn’t. I never once told Elaine no when she found a “new” or “experimental” idea from her research, or advice from someone we never met in Hawaii, or a drug not FDA approved, inter alia. I never told her my inner feelings that this is all for naught. My support was in the form of “sure, when is the flight” (and every once in a while, “how much does that cost again”)??? It didn’t matter. I was prepared to try everything…everything that Elaine discovered. The main lesson I have learned SO FAR in this journey is that no doctor will be your advocate and no doctor knows everything. All but one doctor told us that surgery would never be an option. Elaine found that one doctor. YOU MUST BE YOUR CHILD’S ADVOCATE!!!

I feel remorse as I write this, because I know that not all children can be given a chance, regardless of the finances and resources available. We were dealt this hand but it is far from the worse hand we could be dealt. However, each journey is unique to the person on it.

After about 6 months of Sophie’s infantile spasms, I did not shed a tear feeling sorry for us (in fact, I had to repeatedly remind myself that Elaine and I are NOT really going through it, it is Sophie). Don’t get me wrong, I have cried frequently (usually in the privacy of the shower or my car ride home…people next to me must of gotten a laugh) but it wasn't because I was sad. Rather, it was ALWAYS when Elaine had another PLAN to stop Sophie’s seizures. Each time, I let the thoughts of happiness and joy of giving Sophie a better way of life creep into my head. Once reality set in (usually only took 2 minutes), the tears would stop. Is that perverse to cry about the POTENTIAL happiness???

Back on point, as we held our breath when Dr. Chugani and Dr. Asano walked into the waiting room, we clutched each other’s hands. Receiving the positive news and not really knowing yet whether Sophie would wake up without seizures, we both cried those long-awaited tears of joy. I said to her “YOU DID IT!!!” whiling sobbing like a little girl of course. She generously replied “WE did it” but I appropriately corrected her with “no, you did”.

It has been a long journey and I am not na├»ve enough to think that there won’t be more twists and turns. But in this moment, I couldn’t be happier. I love you Elaine. Thank you for watching over our sweet Sophie!

Brandon

20 comments:

Krissy said...

I'm so glad that you're looking at a new journey that hopefully will be seizure free!

Anonymous said...

A family, and each individually, we are all blessed to know. The Colemans.

Anonymous said...

Brandon, don't stop posting. Your contributions are very important as an extraordinary dad. You are "smarter than the average bear", Yogi (Daddy Brandon.) Lots of Boo Boos need your strength and perspective. Your thoughts enlighten many. How each of your family members have maintained your amazing senses of...strength, sensibibility, humor, charm, witt, perseverence We would enjoy seeing a picture of Debbie with the family as well. Sophie is in so many people's hearts. Bless her. She looks "touched by an angel."

JSmith5780 said...

Brandon it's been a pleasure to emread your posts. Please guest post occasionally.

I, too, wonder why it's generally the moms blogging and using support groups. Do we have a "different" connection with our kids? Do we care more than the dads? I don't think so. I think it's that we aren't afraid to put our emotions out there. Women have long been seen as the emotional, weaker sex. Men are strong. Why should they need to admit for the whole world that they can't "handle" this on their own. And that's where most dads are wrong. Coming into the blogging world and support groups isn't like that. It's finding a family that is living the same nightmare and GETS IT. We are all here for each other. For good and bad. I almost feel sorry for those that don't have their own cheerleading squad behind them. It makes us all stronger. I am glad we have all been here with you on this journey and that we've been your support. And just because Sophie is doing so well doesn't mean we are all going to leave now. We will continue to be here with each step forward Sophie makes. Cheering her and you all on.

blogzilly said...

Absolutely...Jen is right. A guest post now and again would be fantastic. You're a good writer, and your take on the situation is unique to you and interesting.

Great to meet you. I wish I had taken more time to talk to you both. Frankly I was intimidated (I think...not sure if that is the right word) over the magnitude of everything.

But yeah, guest blog for SURE.

baby trevor's mommy said...

I swore to myself that I wasn't going to comment on THIS post. I'd leave my comment on a different...Elaine written...post!

But then I started bawling...and couldn't see the keyboard to navigate elsewhere! So yeah...thanks for that Brand-io! Ugh!

And even though I'm cussing you for making my eyes all puffy when I've got places to go today...

I still love you...and your family. And am SO incredibly moved by all that has happened this past year. What an amazing journey...

And I'm SO happy that you're startin a new chapter...

(((((hugs to the girls)))))))

...danielle

Anonymous said...

Very well said! You have been through a lot and finally you have something to be happy about... a new journey, a new outlook for Sophie's future.

I have truly enjoyed reading your blogs and seeing this through your perspective.

I can't wait to see the family next month. And I can't believe there's going to be a little boy in house! Colin is going to love to teach him to play ball :-)
and Nicholas will teach him to play trucks and trains.

- Erin

Sophie's Story by Elaine said...

Blogzilly...I think you have motivated my husband to enter the blogging world. Although Brandon would read my posts, he never ventured elsewhere. While we were in the waiting room during the first surgery, I had him read some of your post. He immediately LOVED them. He got your honesty and sense of humor. So thank you for bringing him into our world. It was great meeting you and maybe someday, under better circumstances for all of us, we will have more time.

Holli said...

If this IS your last post, you went out with a bang!

That was such a touching and emotional post...leaving me in tears!

When I read blogs, I always wonder how the "other half" is dealing. Until blogzilly, I had never read another daddy's prospective. It's refreshing and inspiring to see how involved you have been!

You have a precious family that has so many new opportunities to look forward to now!

blogzilly said...

Thanks Elaine, that's awesome. I got the impression that Brandon was someone I would dig a lot in 'real life' if I met him outside of this IS crap world. I liked him a lot, and I hope he continues to blog, he's got 'the gift'. Hell, it's a free Internet, he can always start his own blog... :)

Hope Sophie is on her way home with you all soon.

Adesta said...

Brandon, I think you should guest blog occasionally...ya know, give Elaine a break now and then...wink wink...lol

Congrats to all of you on Sophies successful surgery. I'm so happy for all of you.

Anonymous said...

It was so nice to "meet" you from all the way over here in Hawaii:) Darn it all, that we are meeting under these circumstances. When we met little Alex and Emma over ten years ago in the same hospital, under the same circumstances who knew that we would continue to be such good friends. You have met people that "get it" and they will be a part of your life forever.

You all now have another fan who will follow your post faithfully. Little Sophie has captured my heart and I will continue to keep her in my thoughts and prayers.

You are right, it will be a tough journey ahead, but you've made it through the toughest part with flying colors. Now it is watching Sophie advance slow and steady...and we will all cheer her on and support you during it all.

With much aloha,
Sheila, Trevor and family

Anonymous said...

Many a tear has been shed by many a person along with the Coleman family. Now they are for different and wonderful reasons. Thank you for sharing the amazing journey. Here's to a future of good twists and turns. Oh, and I'm glad to see that Latin lesson stuck, inter alia.

CB

Heather said...

Although Zoey entered this world with a hand full,or rather a boat load of issues,separate from IS,It was in fact the horrific world of IS, that had me diving head first into blogging.In one moment I was not alone.I continue to journey daily with the most incredible families and their amazing children as they navigate this terrifying path.Your beautiful wife outstretched her hand and her heart to me a long time ago and I have been blessed ever since.I thank you Brandon for lending her to me and thank you as well for the unselfish sharing of your very sweet and your very courageous Sophie.Your have done an outstanding job standing in for Elaine and you should be proud of yourself as well.This is a joint effort and without the love,support and understanding of our counterparts,we would be lost.May God continue to cover you in His grace and carry Sophie as she journeys forward towards better days.Love from California.

PS.I still think you should move here!!!

Jackson's Blog said...

Another great, and very sweet post Brandon! You both are wonderful parents! I am so happy Sophie is seizure free. I had a feeling when Elaine told me that they decided to present Sophie's case again and she wasn't even expecting it...that things were happening for a reason. Everything fell into place beautifully...timing and all. I hope soon you all will be going home! Such an exciting time for you all...and with your newest addition arriving soon! ;-)

Anonymous said...

Brandon, it take a lot stronger man to show his true emotions than it does to hold them back. If you don't let it out once in a while you might go crazy. But Elaine is right, It is because of you both that Sophie is going to have a whole new life to look foward to. Thank you both for all your hard work and for giving my great niece a second chance for a wonderful and seziure free life.

Love ya lots, Aunt Tammy

Colby said...

No,no,no...You MUST NOT STOP! Don't leave Ken alone with all us women!!!

I have SO enjoyed your posts this last week....Your words create such a feeling in your readers...Where will all that talent go if you stop? So we all expect to see you from time to time....Deal?

Now, one other thing....I just adore the way you speak of your lovely Elaine....She has helped me so much with her gracious comments...This young lady who is only a little ways into this seizure world...Helping "an old pro" like me!! It is especially touching because of my own personal experiences with Colby's father...Oh how I had craved to have my husband share this world with! But things turned out much differently than I had hoped...Now, you guys have it...Cherish it and protect it with everything you've got....

I'll be waiting to hear from you again....

Colby's mom, Cyndi

Anonymous said...

17 postings and counting. Brandon, the silent blog partner for so long, has come forth and won the hearts of so many. No surprise for those who know him. The entire family so remarkable, with a remarkable and inspiring story they have shared.

Anonymous said...

Hi Brandon,
I really enjoyed reading your blog. Incredibly honest and open to yourself. I somehow know that you are very smart. But as you said, you are not much of an open book. Reading this blog, it truly helps me know you better. A very talent guy, a good and kind husband and a devoted father (with a preference to boy, but I do not blame you. With 3 daughters, you just need a “balance” in your house).

Most of all, you are an EXTREMELY lucky man as you have an amazing wife, Elaine. I meant to tell you that a long time ago, but never found a good chance…She is the light and the backbone of your life, your children and your family.

Congratulations and enjoy your journey…

Love,
Rongrong

Anonymous said...

I wouldn't worry too much about your man card, you couldn't have had too many points on it anyway, everyone knows Elaine wears the pants... just kidding Brandon.

On a little more serious note, I think we're all amazed at the strength and perseverance both of you have shown to make it to this point in your journey, to see how hard you fought for your little girl. We'll all be here cheering for Sophie for each step she takes and praying for you guys. Have a safe trip home.

Ed