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 naïve 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