Tub of Stuff

Tub of Stuff that is full of Jack.

Christmas 2009 gifts that he will never enjoy
His wellie boots
His orange sweater.
His monogrammed hat.

All the things that make me think of Jack.

Someday I will open the box up and find some joy in going through those things.

Not today however.

The Boy Who Will Never Again

grow any taller than where his growth chart is now
attend school
have the tooth fairy come visit
feel the wind in his hair, the sun on his cheek
make a snowman
hunt easter eggs
kiss his mommy

I appreciate honesty. It is refreshing and welcome. However, there are so many people in our lives right now that either say incredibly cruel and unintentionally painful things to us or are avoiding us all together. For now, the best approach is to acknowledge our loss of Jack and move on. Believe me there are no words that can fill this Grand Canyon of Grief and Loss.

I know the spot most of these people are in. You want to reach out, but what in the world can you say? And to some extent, you feel "survivor" guilt, your child is alive running through your house, my child is laying in a cold grave.

I know these feelings all to well, since I have a close friend, who's son Johnny lost his battle with HRHS two years ago. He and Jack were 10 days apart in age, played together and our paths were so similar. I ached for her each and every day after Johnny passed away but was struck mute~ what could I say to her? My words were so hollow. And to some extent, I worried frantically that I would be in that same spot one day.

And now I am.

So I welcome emails and texts. I may not respond immediately but read them right away and take comfort in them. Don't worry about offending me or disappearing. There is no road map for this journey. All's we can do is our best each and every day.

Quote

"Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind." ~Theodor Seuss Geisel

Knowing Jack

It is important for me to know if Jack is okay. I don't know how I will go about finding that out, I just hope he is okay. Your job as a parent is so fundamental. Are your children cared for~ warm, safe, dry, sated? I don't know that about Jack right now. On the flip side of things, I am no longer worried about him. Is he blue? Is he sick? Is his heart failing? Those constant worries that I had for 4 years are gone, out of my system. And I dont' have them with my other son, Will. He is healthy as a horse.

I feel guilty for making such a big deal about the coumadin, now it looks so small in the big scheme of things. How I would have dealt with it, dialysis, medication, anything for that wonderful boy. He was such a delight to know, to love, to care for. A big personality. My son, my personality. Always fighting, never giving up.

I know that he didn't want to die. That is what makes all of this suck.

I am sorry Jack that you aren't here with me to live your life. I promised that you would honor and glorify those who made it possible for you to live. Guess they weren't listening to me.

Mwah.

Another Day

It is amazing how painful this all is for Sam and I. We miss our little red head so much. Everything hurts.

I talked to one of his nurses today and we both cried on the phone with each other. She never heard Jack talk although he was quite able to voice his likes and dislikes with a breathing tube. He knew all their voices, he heard them in his sleep.

She said that Dr. Del Nido thought Jack was going to be a text book bi-vent case. Jack as usual had to prove that wrong.

I miss Boston, where we still had hope. I miss all those people who loved my boy and wanted him well.

What happened?

Today I am washing Jack’s clothes from Boston. It, along with most everything else, is painful. The little shirts that he wore, pjs that he never had on in the hospital, the last pair of shoes that were on his feet give me a stomachache. Again I am crying. Where is my baby and why is he gone?

Those clothes take me back to July 2009 when we were so hopeful (or was it arrogance) that led us to Boston. It was so long ago that we were with Jack in the admissions department, watching him play, running up and down the hall between the surgical admissions office and the cardiology clinic. If I could reach back in time, I would say “Bridget, be careful, make sure this is the right thing to do for Jack.” Lord I feel guilty. We signed those consents, we might as well have been signing his death sentence. The day was warm and bright, we were so full of hope and promise. This was going to be the fix, this was what was going to give Jack his life back. Instead here it is January 2010 and my boy isn’t here. The words, this sucks, doesn’t even cover it.

I miss my child so much it physically hurts. I feel like I let him down, we promised so much and in the end he died so young.

Please don't be mad at me Jack.