Thursday, October 22, 2009


I'm overwhelmed. Not because Ben's coming home on the vent, I'm overwhelmed because he is. I's confusing. Machines don't bother me, I've been dealing with them for seven years. I can handle a ventilator and everything else that goes along with it. I'm just having a hard time wrapping my brain around the fact that he's not weaning off the vent like all the other times. Why now? And it was only a cold...just a cold. Unless you have experienced life with a chronically ill child, it's hard to understand. Death is something I don't like to focus on or think about, but it's real and it's my reality. I can't help but wonder if his time is close...and wondering hurts. His body seems to be tiring, that left lung is so weak. "I need you!" I whisper. He turns his head towards mine and I smile because I know that he gets it. Tomorrow we make the journey back home. Back to the arms of his daddy. Back to the slobbery kisses of his siblings. Back to the comfort of his own bed and routine. Back to a brand new kind of normal.
And then we will carry on, like we always do.


ellen said...

You are an amazing mom.

Mostly Stacie's Space said...

One step, just one step. Then the next. Love you.

Anonymous said...

Hymn #85--we were just singing that this morning. We love you!

Jo Jo said...

We're glad you're going home to be together as a family.

Jenny said...

He gets it.
You're my hero.

April said...

He knows... and he loves you! I'm sorry it hurts to wonder about the future sometimes. Home will feel so good! LOVE YOU!

The Snell Family said...

We are thinking of you also. we love you both and understand your 'reality'. We will pray for your comfort and peace at home.


LL said...

I don't even know what to say.
You two are blessed to have each other...

Trina and Jophie said...

The "new normal" IS very hard to wrap your brain around. I hate it. It's gut wrenching and agonizing at best.

"I need you" has slipped past my lips more times than I can count. I feel selfish at times but I DO need him. You KNOW exactly. You feel it.

We love so much it hurts and yet we must go on. With a smile because that is expected of us. Some days I don't feel like smiling. You know those days. I hate them too. I hate looking as each day brings on "new mormals" in the form of progression. Many hear progression and to them it's a wonderful thing. Why shouldn't it be? A baby takes it's first step. That's progression and what a happy time. Our children progress and we know another small chunk has been taken from us. Another day? Another hour? Another minute? We can only guess and watch. A wacked out progression indeed.

A healthy balance is what we aim for. Enjoying every single moment yet never slipping to far away into Narnia for fear the reality of it all may sneak right up on us and catch us off guard.

Enjoy the moments but constantly prepare for the reality. It's a hard thing to do but one we must lest we miss out on the hear and now.

Your "new normal" will be found. It comes slow but steady then before you know it reality hits and you realize weeks have passed and you have already been living it.

Stay focused. Cry when you want. Smile when you want and when you don't feel like it then don't. Don't answer the door or the phone if you don't feel like it.

Be true to your emotions "Forcing" people to accept you/your son/your family/ for what it is.

"Forcing" those around be it family/friends/strangers to "SEE" and "ACCEPT" the life we live. It's so easy to give people what they want to hear. "We are FINE" "He is FINE" If one doesn't have to hear/see about it then it can't possibly exist can it? Something so heart wrenching couldn't possibly be occuring behind those closed doors and those smiles and those lives? Could it? Because if it were and I knew then I "might" have to do something about it.

It's so easy for people to go through a traumatic event(such as a car accident)for the short term. They will stand toe to toe helping the broken loved one to heal knowing there is an end to it all but, to deliberately put yourself in the path of such pain would be ludicrous. And so the world continues to go on walking through life with blinded eyes to the broken of this world.

Yes our children are broken yet we love them so much it hurts.

We want normal. We long for normal and yet we are expected to accept the "new normals". I don't want to in fact I HATE "new normals". I often find myself throwing a royal temper tantrum before God. I'm sure he'd love to shove my nose in a corner at times ;)

The "New Normal" will never get easy but, I can honestly say I truly understand and walk this path with you. Hand in hand knowing we can face what lies ahead together.

Isn't it so nice to see another walking this path? A path that often seems dark/lonely and even abandoned at times.

Trina and Jophie

shirlgirl said...

Trina, your post makes my heart ache and reading it, I know you can understand what Becky means. Becky, you are amazing, and though things will be tough for you in the beginning because this business now is "new", there will be lots of adjustments. We can only take one day at a time because that is all we have. I have to take one day at a time with Uncle David because thinking ahead of what could be scares the heck out of me. It's not easy, my sweet niece. Just know that we love you and pray for you and for Ben and the rest of your family as well. You are to be commended in all that you do for your family. Ben has been given so much love and he has given so much love back to all of us. You are both an inspiration to all who know you and those who only know you through your blog. Lots of love coming from here. Aunt Shirley