Hello to everyone.  I haven't posted in a while because, frankly, I can't find words that are poignant enough to describe this past week.  We were humbled to be featured in two newspapers.  And the emails we've gotten as a result of those articles - as well as the emails and calls from friends and co-workers who knew Don and Cody were running - have overwhelmed us.  We feel flooded with encouragement, prayer, support, and love.  The best part is, Cody Graves deserves to be known.  And by tackling this marathon - we feel that Cody has been introduced to many many people who otherwise would never have known him.  That is fun for us.  We've been the captive audience to his heroism every day - but now we receive emails from total strangers who say Cody has inspired them.  We receive emails from other runners in the marathon who ran next to Don and Cody - who saw the "Running For Cody" sign Don wore - and who came to this website.  We are touched, honored, and blessed to have been contacted by so many wonderful people.  Thank you.

Don has recovered quite nicely from the race!  No injuries - he still has all his toenails!  Just a bit sore is all.  We looked at the official race photos yesterday - of Don and Cody crossing the finish line together.  It was a tearjerker moment for us. 

This week we got "back to normal" and kept Cody's therapy schedule - Don went back to work after a week off.  I finally cleaned the house.  :)   And we got on with our "other' marathon - our life! 

It's interesting after you experience the adrenalin rush of a marathon like that one - plus all the attention that follows.  It was so nice - and still is - but it is also very very clear that marathon or not - we are still the parents of a very sick little boy.  He's been having 15'ish seizures a day for the last week which is really upsetting.  He's having some sort of body pain that I can't identify - gas pain?  Headache?  Muscle ache?  Growing pain?  Not sure but it has him screaming off and on - and it has me in knots. 

We went to the play gym this week to try to get him out in a big space with lots of swings, trampolines, and big gross motor stuff to do.  He spent about 3/4 of the class laying on my lap.  I'm not sure why.  He seems to just wilt when we walk through the doors to this gym.  I used to try to get him to "buck up" and play because after all I was paying for the hour - and it was supposed to be his time to "do stuff!"  But these days, I follow his lead.  And after laying on me for 15 minutes  I'd get him to try an activity.  And he gives it his best shot - climbing up the ladder to the slide and sliding down.  Then lay on mom's lap.  Go kick a ball twice - then lay on mom's lap.  Swing (giggle, laugh, smile) then sit on mom's lap. 

I'm not sure why, but right now my heart feels extra tender toward Cody.  Probably because of this new "mitochondrial disease" diagnosis and all my research about it.  My poor boy's little body just doesn't produce enough energy to keep him functioning.  Now that I know that, it explains so much.  But it makes it so hard to watch him battle it. 

No one else at the gym would have known that I wiped tears away about every 10 minutes or so.  No one else knew that as Cody slid down the slide, I braced myself against the wall - against a wave of grief.  Other special needs moms know - some days just hit you like a ton of bricks.  Out of nowhere you watch your child trying so hard just to kick a ball - and it moves you so deeply - that you are almost knocked over.  You have to grab something to hold yourself up.  And it's such a mixture of emotions....pride....fear...pain....anger....deep deep love. 

Don and I both are struggling with this mitochondrial disease news.  Although it finally explains why he has catastrophic seizures, autism, gastro issues, behavioral issues, sleep problems, and more....it also tells us that his little body is really sick.  His problems aren't just from seizure or medicine damage or side effects.  The problems go right down to his very DNA.  It makes him all the more a hero to us. 

He's been up at 4am for the last 2 days so this weekend has just been a series of spelling each other for naps.  The house is a mess again.  Dinner needs to be made.  A week of therapy needs to be prepared for.  But I wanted to sit down and update the site - and mark this moment.  Because although daily living hasn't changed - and the challenges of seizures, sleep, and such have not changed....WE have changed.  We banned together as a family and tackled something bigger than ourselves.  We may not be able to control Cody's disease - be we CAN control what it does to us.  And this little Graves family will not be beat.  We will get up together at 4am if that's what it takes (it's a small house - when Cody's up - everyone's up!)  We'll push forward and press on.  We won't let this disease define us.  Our definition rests in God alone.  And in this Christmas season, we rest in that.  That Jesus birth revealed the very Savior who we lean on this Christmas.  We may not understand why we have been give this lot - this terribly sick child.  But He said yes to it - and that is enough for us.  We trust it is for our good - and that He will redeem it daily for His glory.  That doesn't mean it isn't crushing - it doesn't mean we don't wince with every blow.  But every blow - every seizure - every sleepless night - drives us further into the bosom of the One who made Cody for His great pleasure.  This boy was given to our family and we receive him with awe and wonder.  And we will spend this Christmas month rejoicing in Cody - our sick child....and in Casey - our well child...and in our family.  It's not a typical family.  It's not a Hallmark card family and we will not enjoy a Hallmark card Christmas.  But this Christmas will be ours nonetheless - because we WILL enjoy the real meaning behind this holiday.  Celebrating the birth of the Christ child within whom all things have meaning.  We trust Him with this trial - with this grief.  We pray for that miracle for Cody - for restoration.  And we wait in expectation of either that miracle - or the provision to endure without it.  Because regardless, every day with Cody is a miracle.  He's alive.  He's loved.  He has a brother, mommy and daddy - and we are the family God chose to create.  And we are grateful.

with love, Shawna