Sunday, October 28, 2012

never ending

I wish I was writing this blog about all the fun things we've been up to, like our big boys first Science Fair or my recent stint on a local TV morning show, both equally fun.  I wish I could focus all of my energies on building our dream home, as we have been trying to start...but instead my wishes are not granted.  Instead for some reason, the moment I feel...settled to any degree...bam life hits us again.  I can't lie and say it is OK, it isn't.  It is really bad in fact.  I had suspected EJ had hydrocephalus for a couple of weeks now.  At first, I just put it in the back of my mind.  Thinking HOW could ANOTHER bad thing be happening AGAIN.  So, I finally crawled out of my denial and made some appointments. I met with his pediatrician, yes my amazing family doctor that delivered him also serves as his pediatrician.  I went in cautiously and in denial, on the way there having a long conversation with my dad about the building process and hiring an architect to draw up some plans.  Ha.  So, when I told her I was concerned and we looked over his growth chart and we both saw the spike the HUGE spike in head growth.  She looked at me calmly and said, it's OK, it's going to be OK, he will most likely need surgery and a shunt will be placed going from his skull to his abdomen to drain the excess fluid and hopefully try to stop the damage that it is causing.  Wow.  I sat there calm.  We continued to discuss further details and schedule an ultrasound to verify the fluid and location and meet with the geneticist to determine how to proceed.  There I sat, discussing a life long consuming diagnosis on a Friday morning like I was having coffee with a friend.  There were no tears, no reactions, no jaw dropping.  Just life.  Our life.  Because calm and peace seems to elude us.  I got in the car to return home and about 2 miles away it hit me.  I couldn't stop crying.  Again.  It just feels like my tears no longer hold meaning.  As if they just flow down my face and I am in a fog.  I can't believe it.  Truly.  I am so tired of crying, so tired of bad news that it is almost as if I can't take it.  I can't listen to it.  I can't hear our future.  We've barely told anyone.  Why would we?  I feel as if a phone call from us is the inevitable doomsday.  It doesn't matter how many times I try to move past it, stay above it, continually life just keeps hitting us.  Hard.

So, now, well that is what we wait to find out.  We have appointments all week to determine the location of fluid, the best way to proceed, if there is such a thing.  But, I will tell you something, I would like to be wrong.  One time.  I would like to suspect something and have them look at me like I am crazy and then say, that I was in fact crazy.  It doesn't feel good to be right anymore.  It seems I need to be right about something fantastic, have a wild and crazy dream and have THAT come true.  The crazy thing about our life is it just keeps moving.  Nothing stops.  We shop, laugh, cook, eat, play, go to parties, eat sushi and watch football, it goes on.  I am trying to think maybe we will be a lucky family that the shunt works the first time and no infection develops and we can breath for I don't know three months? Is that greedy? Too much to ask, three.months.please.

I am scared to even write this, something positive.  But, I for some reason, feel like Everett is so smart.  He just is so smily and engaging, cooing and strong.  A tiny little guy, but so full of life, and knows so much more than Nolan did at this age- it seems.  It gives me hope.  And that scares me.  I want to be hopeful, in fact I am DESPERATE to be hopeful.  But, how?  How do I continue to do so, with diagnosis' that are life long.  The thing about hydrocephalus is there isn't a cure, just treatments.  So, forever we will have appointments to adjust the shunts, ensure no infections are present and there will be something draining fluid from my son's brain, for life.  If he lives.  Oh yeah, that's also part of it.  It's all so crazy and unreal and depressing.  I just want to dive into something shallow like picking out roof lines and floor plans and worry about stupid shit like how long till they finish our house?  I want to run errands looking for the perfect dining room chairs and throw pillows; not more appointments for therapies and specialists.  I know that sounds ridiculous.  But, our life the last two years is well...ridiculous.  I haven't cried again since.  In fact, I threw myself into setting up EJ's room and crib (he's been sleeping in a bassinet in our room).  It's adorable, all things gentle, calm and sweet.  I love it. I want to sit in it.  As I did with each of our babies, their nurseries were such a sign of innocence, hope and life;  I love rocking in a chair dreaming of their future; filling that space with lullabies and love.  And as only a baby can do, they give you a gift out of nowhere, our little man that has been waking up every two hours with only one stretch of maybe 4-6 hours, and he slept.  He slept 9 hours in his cozy crib.  He said to me, "thanks mama, I love my new room too."  Not to be out done he went for 9 hours again last night.  Dare I say it's a pattern?  I leave with a couple pics from his room of peace, at least there for moments of time it's safe and sweet...I like it that way.


  1. Sending strong, supportive, Wonder Woman vibes your way Grace. You are amazing. (If nothing else...Everett's room looks amazing!) Hang in there.

  2. Hi,
    I am sending you all of my love and every shread of hope I have. I can feel your desperation through this post - I know it seems like it will never happen- but you will reach a quiet peaceful not so scary place in your life again.

  3. Everett's room is beautiful...It really does look calm and peaceful. I can't even imagine what the past little while has felt like for you...I have thought of you often and always wait for posts to see how you are doing. I'm sorry about this newest issue with EJ...And I pray that one day soon there will be a calm in your world again, because you deserve it.

  4. Grace, I'm glad that you are able to write about everything. I hope that you are taking good care of yourself. When life's pendulum swings dramatically from left to right, it eventually comes back to that gentle middle space. Hopefully this happens very soon so that you can put your energy into fun things, like designing your new home. We built a couple years ago and I have much to share about our experience. Let's have coffee soon.


Come on- spill it, share it, scream it, shout it, I want to hear it...really!