July 5, 2012

A Bumpy Month

As I sit in Bertrand's hospital room, barely a month since we were last here, I have to admit that the past month has been a challenging one.  Bertrand's health has been touch-and-go more times than I care to count.  And, the same violent virus that wrought havoc on Bertrand has left Victoria, Matthew and myself low on physical reserves.  Our emotional reserves have been drained as well.

After Matthew's blogpost about Bertrand's medical journey, I made the mistake of reading comments on the internet about our family.  Never again.  While 99.9% of the people in the world are amazingly good (and I know that these are the ones I should focus on), that remaining 0.1% is of questionable humanity.  They hurt me more than I care to admit.

More critically, the path to a treatment for Bertrand is proving to be every bit as complicated or more-so than we anticipated.  Some of the earliest possible clinical trials start in 2013.  But the feeling that we are working against a clock increases with every hospitalization and additional symptom.  More often than not this past month, I've felt like we won't make it in time.

All that said, I am grateful for the friends and family who haven't given up on us.  Those of you who've offered love, support, and let us take the time necessary to lick our wounds--thank you.  As an introvert, I am notoriously quiet when wrapping my head around big issues.  Until I can chart a path out of this hole, talking is difficult.  I promise I am not ignoring anyone.  I'm just utterly focused and, if honest, exhausted.  Love, C


  1. Will never, ever, ever, ever give up on you. Love you.

  2. I will never give up on you...or quit bothering you. That's what good friends are for. All 4 of you are not forgotten. xoxo

    Hope you get a little sleep during your hospication. What you really need is a three day nap, though we know that isn't possible.

    Kudos! Those were mad scheduling skills!

  3. I can't even imagine what kinds of things people could say about two such amazing parents. I can't believe what you've been able to do to finally figure out a real diagnosis for Bertrand. I've told you before that you inspire me, and it's still absolutely true. Sending love to all four of you!

  4. I've been reading for omd for a while, but reading Matthew's post with everything all laid out was heartbreaking, and really emphasised all that you guys have been through. Happy thoughts, hey. Hang in there!

  5. Just tell me where these mean people are, and I will take care of it :)

    You are doing your very best, and that's all you can do. I can't imagine what people could possibly say!

    Keep your heads up and keep going! You are loved by many, especially by your children!

  6. So sorry to hear you guys are having a rough month. We've also seen a very ugly side some people recently, and really, they just don't deserve one iota of your energy. You are clearly surrounded by so much positive energy and love, don't let them take any of that from you. Sending more positive thoughts your way.

  7. Ignore the rude comments! You are both great parents and its obvious that you blog to update and educate others, but NOT to gloat or feel sorry for yourself. As I know myself, it can be difficult to raise a special needs child and it takes support. Please ignore those naysayers and keep fighting the fight for your family!

  8. I love you, guys. :) You're right, and THESE are the comments that matter.

    We really are SOOOO lucky to have friends like all of you!