Part of living with your eyes tightly shut is that it makes it easier to convince yourself that bad things can only happen to other people.  I told myself that since I followed the rules, always did the things I was supposed to do, things like that won’t affect us.  Believe it or not, but I’m a pretty smart girl, so I always knew that this reality I’d created for myself wasn’t reality at all, but I chose to keep the charade going because it made me feel safe in a world full of uncertainty.  It helped me to feel in control.  It wasn’t until my eyes were wide open that I realized exactly how wrong I was.

I knew in my gut that something wasn’t right, but I ignored it.  Just like I had chosen to live with blinders on, I chose to ignore that voice that God gives us to use as our guide.  I told myself that because he’d beaten the odds so many times over the past four and half weeks that he could easily do it again.

The moment when multiple doctors, nurses, specialists, and social workers all descended upon his room to give us the results of his MRI, explaining that they were shocked that it had come back showing complete devastation of his brain, the likes of which they’d never seen before, I very quickly realized that we were now among those other people.  When I was grasping for straws and asked if they were absolutely sure since the cranial ultrasound that had been done on his tiny little head just two weeks prior had shown healthy normal activity and they answered yes, I began to feel the weight of those other people I’d so carefully avoided.  But, it wasn’t until I left the room so I could go outside and catch my breath that I finally understood.  As I stood outside with the reality of their words crashing down around me I knew.  There is no such thing as other people.  There are only people.

I used to live my life by a very strict rule-  close your eyes to all that frightens you. It worked really well for me for a really long time.  I knew that it was selfish and that I couldn’t actually avoid bad things happening to myself or my family just because I pretended that said scary things didn’t exist, but I did it all the same.  Then one day, in September of 2007, that all change.  God ripped off the blinders I had placed on my eyes and gave me another chance to see what was happening around me. I didn’t want to see the other parents hurting.  Or the children that were seriously ill. Or the families holding vigil outside the rooms.  I didn’t want to know about the pain or the aching of their hearts, even though their hearts were just like mine; thrown quickly and unexpectedly into this state by their child’s health crisis. I thought about squeezing my eyes shut, not letting in anything He was trying to show me, but I knew I couldn’t do that.  I shouldn’t do that.  So instead I stood there, in the doorway of that cold little PICU room, holding onto His hand more tightly than I knew was possible, and I looked at all of it with my eyes wide open.

to be continued…

I work hard at living in the moment. For a while it was the only way I could get through the day. You see, when your life changes in an instance and it’s because of
something that is so rare that most doctors aren’t even familiar with it, well, you find yourself with two choices-

live in fear of everything 
because you now understand implicitly that life is completely outside of your control 
or live in the very moment you are breathing in

I chose the latter and assumed it’s the way it would be forever. As you can imagine, that doesn’t leave much room for looking back, or very far ahead for that matter, which was a tough pill to swallow for this former control freak-perfectionist-planner, but I accepted the change because I knew it’s what I needed to do to survive.

Until this year.

Just like with all things that I assume, God shows me otherwise. For the first time since loosing Samuel I decided to look back through our photos from this past year, and do you know what?

They did not make me feel sad or mournful because he wasn’t in
them.  Instead, I felt his presence in every smile, smurk, giggle, and backwards glance.  As I viewed them I was reminded of the emotions that I felt during each of those moments. And I noticed that these photos look different from the past few years.  They’re more personal.  More us.
What a gift that is!

Give thanks to the Lord, for He is good; His love endures forever.

 Psalm 107:1 

Dear God,

Thank You for the good You have filled my life with.
Thank You for always standing beside me, even when I didn’t think I needed You.
Thank You for taking my broken heart and stitching it back together with love and hope.
Thank You for never giving up on me, for never leaving my side.
Thank You for being patient with me when I am selfish and egotistical.
Thank You for not allowing me to close my eyes and heart to the world around me.

Thank You for the sunshine on my face when I feel the darkest.

Thank You for the songs of the birds when I feel the quietest.

Thank You for the little hands of my children when I feel the most helpless.

Thank You for the arms of my husband when I feel the loneliest.

Mostly though I want to give thanks to You for everything You did and still
do to bring comfort to my weary heart through Samuel’s life and loss.  It is through
that sweet little boy of mine that You showed me what true love and trust looks like.

Thank You for showing me daily all I have to be thankful for.
On this day, more than any other, I am thankful for You.

“Give thanks to the LORD, for he is good; his love endures forever.”  Psalm 107:1

I just realized that the most wonderful thing has been happening this

week.  Let me explain.  I have it on good authority, otherwise known

as the hours and hours of therapy I’ve logged, that I’m not alone in

the experience of recalling every little thing that happened between the

birth and the passing of my wee one.  Each year, between Samuel’s birthday

on August 15 and his leaving us date on September 27, I struggle with

fighting off the daily reminders about the trauma that surrounded him

on each day of his life.  For example, “this is the day they whisked

him into the PICU by taking him right out of my arms.”  “this is the

day 15 support staff members walked into his room to tell us that they

were shocked to learn that his MRI showed massive brain damage.”

“this is the day they finally allowed us to take him to hospice, and for

the first time in 4 weeks I was able to change his diaper.”

I could keep going, but I think you get the idea.

Well, this week those thoughts have not taken over my mind, not even

once.  That’s what you call progress.  Honest to goodness, hard earned 

progress.  That means that I’m winning this part of the battle.  I know it’s 

only been a week, and I have 5 more to go, but I’ll take victories where 

I can get them.  The memories of the traumatic events that surrounded 

Samuel’s days on this Earth aren’t forgotten, and you know, I never want

them to be.  They’re part of his story, our story, and a big part of what

has shaped me into the person I am today.  But I feel like doing the

happy dance now that I realized I can think of my child, especially

during this delicate time, and feel his presence in my life and the life