Living

As far as Cole's primary immunodeficiency is concerned, we are still waiting for news from Houston.  While the the initial study is looking for the root cause of the nk cell dysfunction, another is mapping all of our genomes.  From what we've been told, this can take a bit of time.  

For now, we are enjoying our freedom to be outside, to go for long walks, hikes, and  even do a little fishing. It is nice to enjoy nature, the enveloping warmth of the sun, the crisp crashes awakening the sleepy pool waters, moments to savor, to temporarily pause our worry.   And it is in these moments, we are all learning lessons in living, to enjoy today, for tomorrow is filled with the unknown.  

Infusions

For the followers of Cole's Facebook page, some of this will be old news, yet I've not shared everything here, so I'd like get the blog back up to date.

After Cole's hospitalization this February, we were given two options : remicade or surgery. Neither were our idea of what we wanted for Cole, nor a choice we expected at this point in time.  In the end, we chose to try the remicade infusions.  I have to say, I was so worried initially, yet the drug itself has turned Cole into a different kid.  He has been gaining and maintaining weight unlike in the past.  He has finally hit 28 pounds, which puts him on the growth chart!   In addition, his energy level is through the roof!  Nick and I are just thrilled with how this med is working, honestly, it's almost like watching your baby take their first steps kind of giddy.

Cole did well during the induction phase of his infusions, yet the last two have not been picture perfect.  During both, Cole experienced a reaction, which can be common with remicade, like chemo, the more that builds in your system, the more probability there is for a reaction.  While both incidents were frightening to watch as a parent, the immediate action and supervision of his nurses and doctors calmed my nerves.  I truly can't say enough about these professionals and and the level of care they have given our son, not to mention the the extension of their warmth to me when I am with Cole.

I can't say I'm looking forward to his next treatment in August, when I am there, I'm a ball of nerves.  Yet, I am looking forward to my little bean reaping the benefits of a few hours of discomfort.

Beyond Before

before you judge

me

take a look,

wear my shoes

stop

think

if forced                                             

beyond

comfort,

life known

before

now

grim reality

leaving

The Bubble                                        

accept the cocoon?

flip switches of

identity, security                               

off?

epic metamorphosis

unknown tomorrows

for a boy?

                                                            or Not?

10th

Today, my husband and I are celebrating  our tenth wedding anniversary, which I must say, has been one heck of an adventure.  That said, I've always been fascinated by the notion of immortality of love, as Shakespeare has succeeded in having his muse live on forever through his sonnets.  Today, this simple post is merely an attempt at the same, in the hopes that

       So long as men can breathe, or eyes can see,
       So long lives this, and gives life to thee.
                                           - Sonnet 18 W. Shakespeare


Falling is easy
Swimming upstream        
                              dodging obstacles
Challenging.

Mountains become hills
Quicksand
                              concrete
Solid

My rock
Sun
Stars
                              dreams.

You are
Paradise
                              found
Lucky me.

Our uncertain world
perfect, clear
                              simply                  
from love



Nick, your love has been the greatest gift in the world, one which has grown exponentially as time has passed.  To love and be loved has brought me so much happiness in good times and bad, in sickness and health, and for all the days we have had together, and in all the days to come.  While our path has twisted away from the expectations we started off with ten years ago, and the ride has been bumpy at times, I wouldn't have it any other way if I couldn't have you.  Happy tenth!

Enjoy the music.

Break

I've realized it has been some time since I have really posted here.  After running into a few people who have said they've been worried something was wrong, I know I need to get back on.  Since the blue screen of death to my laptop, I've not been on the computer as much, and as much as Nick's Kindle is cool, it constantly deletes what I type into the blog as I go, rather frustrating! During this break, I've been getting my own health back in check, physically from my IBD, and mentally by reconnecting with the musical side of my life with the guitar, not to mention my little writing project, all of which have kept me busy in my spare minutes.

I promise some more updates, and pics.  If I ever get my scanner going today, I have a celebration to share with you later today!

Much love to all who keep following and supporting us.  <3