Oh To Have Those Problems Again

Funny how as moms our days are so intertwined with how our kiddos are doing. More so when you have a heart child, I think.

I wish that I could tell other heart moms not to worry, that things will be okay but what do I know at this point? I believed in my bones that Jack would be fine, that the trials we faced would make us stronger, that we would look back on them and think "how did we do that" when he was older. I always said that I would take no complaints from him when he was a teenager, because of what he went through as a baby and toddler. "What are you complaining about? Look at this gray hair that I got worrying over you. Now get out there and face the world!".

Oh to have those worries again, those problems. They are far better than the reality we face today~ a life without Jack.

The heart mom fear consumes you, it is all consuming! I pray that my reality is not anyone else's reality. Live in hope my friends, for YOU have nothing but hope~ right? Whatever God's plan is for you, it will come in its own time but you will face it with courage and grace as you have done these past years with your heart babies.

Jack keeps a lot of things real for me. I have to be a better person, not get caught up in the day to day crap that faces us. Oh! And the people who complain about fixable problems. I could just scream at the thought of it. :)

What Would Have Been

I was looking through some photos of Jack, many from birth to 2 years old. What a project he was, what a struggle we both had.

That is why this is so devestating. He and I along with Sam worked so hard to keep him alive, healthy. Making all the right decisions, or at least trying to. Then why was the biggest decision so wrong?

I used to say to him, you dont' understand all this now, but someday you will when you are out living your life.

And he isn't here for me to say that. And I am mad he had to suffer so, what was it all for?

Lord above I miss that boy.

And A Word About William

What a joy

His laughter is contagious, reminds me of Jack

Which then makes me sad to think Jack isn't here to share in the mayhem

But Will keeps us going, he is our saving grace.

So lucky to have him in our family.

"I Love Our Family"

:)

How Are You?

Everyone asks , how are you doing? We are doing okay. This is so hard. I can't believe Jack isn't here with us. We miss him so very, very much. He was such a special spirit and added so much to our lives. He went through so much to live, it is awful to think he isn't here to really live the life we wanted for him. So we are sad a lot but Will is our joy, he keep us going. He is so verbal, always talking about Jack, wanting to wear his clothes, play with his toys, etc. He still thinks Jack is in Boston with Dr. Marx, sometimes I don't even correct him. How can I explain this to him when I don't even understand it?

This is not what we had planned, obviously. We always wanted to be a beacon of hope for other parents, sort of, "look at this child, look at what he has been through and he is still here". A "we can do it, so can you" attitude. That is all lost and we are trying to make our way through it. We are not a beacon of hope anymore, rather we are all heart parents worst nightmare. That is not who we want to be, or what we hoped to be.

So that's why we are trying to spread a little sunshine with Jack's Heart Fund. Jack was such a compassionate child, in fact people would tell me how compassionate he was even at an early age. His heart fund will hopefully carry that compassion on in his memory, helping out others who were in the same situation.

I will never stop blaming myself for what happened, or stop asking myself what could I have done differently. I know so many decisions were out of my hands but ultimately I/we signed those consent forms. I pray that Jack doesn't blame me or hate me for what happened, or the pain he was in. I was only trying to do my best for him, and give him the life he deserved.

Funny, the circumstances that led us to Boston. I remember this time last year, we were so full of hope, worry and promise. We knew that Jack would be given his life back in Boston, we believed in so much. Now we don't have him and have to accept the fact that we will never know why. That is hard for an old mom like me to accept, since I would have traveled anywhere for Jack's care.

We miss being in Boston. There was hope in Boston

Mother's Day

I am not a courageous mom

I did what I had to do to get my son the life he deserved to live

He is not here

So I am not courageous

I am the mother of two boys, one on Earth, one in Heaven

Not what I had planned.

They all went on with their lives

Went home
Put their kids to bed
Got engaged
Had babies

Operated on other kids

We went home to
and empty room
a dresser full of clothes he will never wear again
toys that he won't play with

dreams that will never be

I miss you Jackers.

The Grief is Like A Blanket

It surrounds me
It comforts me

Weird I know

But as the days go by
And he slips farther away

I know that this grief will change

And when it isn't so severe, so raw

He isn't as real anymore

So the grief is like a blanket
It comforts me
It makes Jack real