Sunday, July 5, 2009

if August had never come

The phone started ringing just as I finished buckling the kids in the car. Toby's Championship Game was our destination. I hate when that happens. And I usually ignore the call. Until we're where ever we were heading and I can think again. But I knew by the exchange who it was. Dr. Neuro.



I had to take the call. Bristel was complaining in the backseat. All she could think about was getting to the ball field. Or the snack shop to be more specific. She digs the push up pops. Trevy was fine. Car rides are one of his faves.




But I kept the car in park. Cause I know myself. I couldn't focus with clarity...and drive. And we really can't afford a car accident right now. Ya know...




Anyway...




We had a looooooong (much needed) conversation. We covered lots of ground. And shared openly so much information. Making sure that we're all on the same Rescue Trevy page. I love our Dr. Neuro. She doesn't treat me like a parent. She engages with me like a friend. And with respect that I actually have a clue. Although...there are times when I just want to play the idiot. And let her take the reigns of Trevy's care. Because it just feels too heavy. Too responsibility saturated. And it would just be easier to have never learned anything about anything. But that's not who I am. And she knows it.




Of course the conversation flowed in all directions leading to Detroit. This week will be huge as she's preparing to speak with Dr. Decision from our insurance company. I left a message with our case manager to garner his contact info and the best times for her speak with him. I should hear back tomorrow.




At one point...towards the end of our chat. And after complaining Bristel had fallen asleep in her car seat. Dr. Neuro said something that melted my heart. And made it seep from the corners of my eyes.





"I just wish August had never come"





The weight of that single sentence hung in the air. August. When Trevy's IS relapsed. I've had that very thought many times over myself. I just didn't know she had too. Neither of us said anything for a moment. Me...cause I couldn't. My words were choked. Her...maybe for the same reason? But I heard her breath in deeply. Sadly. And then add...





"But it did. And now we have to move forward"





So forward we go. Because we can't rewind time. And live in July 08 forever. It's July 09 now. And now we have seizures. And insurance battles. And baseball games. With push up pops to buy.





And we just have to keep moving forward. Cause Life keeps rolling.






I don't think forward would be so bad if we only knew where it was going to lead. Ya know...






::sigh::






But we don't.







::sigh::








Oh...and I got to game before it began too! Jonathan & Toby (who wants his blog nick to be Captain Slugger) were already at the field. Being a big game and all.








And when Toby was up to bat I heard the second sentence that melted my heart that day...









"I'm gonna try to hit a home run for you, Mom!"









He big boy smiled at me. And jiggled the too big helmet. Just like he does every time. It's a cute little habit. That reminds me that he's not as big as he seems sometimes. Cause the helmet doesn't fit yet.








I smiled back. And wiped my heart from my eyes for the second time that night.


10 comments:

brendalynn said...

aww thats so awesome!! ill keep praying for you a trevvy and everyone. && tobys so cute. i dont care if hes like 8. hes adorable lol. cant wait to read the blogs to come. considering this is my way of keeping updated with you now lol.
i love you danielle.
<33333brendalynn.

blogzilly said...

Was gonna be all positive...then as I opened the comment window we had a cluster. 20 minutes later I don't have the energy for positive.

Seizures suck.

Jenny said...

That blog just melted my heart. We are almost a month without spasms now and I pray they dont return.. but hearing your story gives me hope that we can make it if they do. Thank you.

Jenny, Mom to Brady

therextras said...

Not small in a small child's life, one year. But not unrecoverable either. Esp for the Almighty.

Prayers and hugs, Barbara

~Mama Skates~ said...

love ur blog - it warms my heart! keep truckin girl - no one does it better than u!!!

xoxoxox,
sharon

Anonymous said...

I am so moved by your blog today. It is a wonderful feeling to know that you are more and a "number" to the specialists. To form a true relationship or friendship with the doctors is so calming. I can appreciate that so much. It sounds like you have some fantastic fighters in your corner. You are doing a great job!
Marcia K

baby trevor's mommy said...

Thanks Brend-i-kins! They lost the game the other night...so we have the final Championship game tonight! Yikes! I'm over the moon that Grams is sitting Trevy though...cause it was torture for him at the field the other night!

Ken...seizures always zap my optimism too.

Jenny...awwww...your comment melted my heart. I HOPE that it's over for you! Some kids make it out unscathed...and I hope that your little man! Thanks for making me feel warm & fuzzy!

Barbara...you are SO right! I just wish I knew what He had Planned for Trevy...for us. Ugh...faith is SO not easy!

Marcia...after Trevy's dx and our subsequent resignation from our non-profit in Tanzania...my hubby started putting out resumes all over the country. We really could go anywhere. And we were willing to. But Providence closed every door but the RI one. At the time we were very diappointed. Jonathan wanted a ministry position...rather than clerical. But now...a year later...so many things have become clear. Like how important being close to my mom is. And how important having a team of doctors that have walked with you from the beginning and care for your family is. Anyway...nuf of the history lesson! lol

...danielle

JSmith5780 said...

Just think how much easier this has been with Dr Neuro. Can you imagine NOT having an understanding, helpful neuro on your side??

Holli said...

I still can't get over how amazing your Dr. Neuro is to Trevy. I'm so hoping that she can shed some light on the importance of Trevy getting to Detroit for the insurance crew. I think Jen mentioned the other day how there should be exceptions to their so-called protocol where disorders like this are involved..and I totally agree. This is one tricky disorder to treat. And it takes more than one or two sets of eyes sometimes to see what's really going on.

And I think you're equally amazing for not giving up!

Colby said...

Things are really progressing...I know it is hard to contain the excitement, but I know you try...just in case...But it REALLY does sound like this time it is going to be "a Go!!!"

I am SO THANKFUL that you have your doctor/friend to guide you through this frightening maze....What a blessing she is!

I will continue to check in often to see what the latest news is...

BTW...Your dedication to your "normal" kids (Ha!) is SO inspiring! You don't let Trevor's issues keep them from being kids!

PERFECT!!!

Cyndi