Corbin

Terri,
I have followed your page from October 2005 and found out about it from Sarah Eason, who lives close by. Her son Johnny and Jack were weeks apart and both were hypoplast kiddos (Johnny right heart, Jack left). Those were happy, heady days as she and I commiserated about meds, reflux, therapy and clinic visits.

I always your grace under pressure and how well you handled losing your child. Never did I think that we would be in the same situation, no offense intended. I always thought we would beat the odds, since we did everything they said to do and took Jack one of the best heart centers in the world. Sadly, we are now linked forever on this same journey. And it stinks. Most days I can't believe Jack is not here and my arms literally ache to hold him again. Which is ironic since he was never much of a cuddler.

We are haunted by our days in Boston and remember how desperate we were. That's why we started Jack's Heart Fund~ to help out other families in similar situations and to honor his memory.

Please don't feel like you need to donate to our fund, you have been through so much already! But if you want to, we will certainly put it too good use. We usually give out $200 Visa gift cards, so families can use them as they like.

Our address is
4305 W. 94th Street
Prairie Village, KS 66207

My prayers are with you today and always. I am so sorry our boys aren't with us and that we are on this painful journey.

Bridget

Small Hands to hold

This Baby Moves Like Jack

Jack used to get the hiccups in utero. My mom told me she never had a baby do that. Of course that isn't a very supportive thing to say. Imagine that.

This baby has the hiccups a lot too. The dr said that was a sign of a healthy baby. Huh?

I like having this baby in me, keeping it safe and sound. I don't think there is anything wrong with it I just am enjoying my final weeks of my last pregnancy. And that makes me sad.

5 pregnancies and only one child so far. What shitty percentages that is.

I should have more babies with me.....causing a ruckus and making me nuts.

Don't Follow The Light Jack

I used to tell him that in the car. I would say, "Jack, don't ever follow the light or listen to any voices that you don't know. Always come back to me and follow my voice."

Wonder if that kept him alive all those months in 2009. My voice. Telling him he could do it, to tell his heart to relax, to put all those bugs in the bug jug.

Did I prolong the inevitable? Did I cause my son undue pain and suffering? Was I being selfish?

The guilt overwhelms me sometimes. The failure is monutmental. The loss is so great.

Never in my life will I be the same, never in my life will I forgive myself.

Today I am MAD

I don't want to hear about kids getting a four chambered heart

My child is lying in a grave in Raytown, MO

I did everything they asked me to do. I wasn't a jackass mom. I took him to doctors, had the therapists invade my house, fought with insurance companies, argued with pharmacists.

I followed their instructions to the tee. I DID MY JOB!

Why didn't they do theirs?

Did you Know

That in the CICU in Boston the man comes by at 4PM sharp to clean the floors?

That the cleaning chemicals don't smell clean?

That Mass is said at 11:30 every Sunday in the Patient Entertainment Center

That the smell of Au Bon Pain permeates every single part of that building?

I miss Boston.

Today I am thinking about

The mom who is sitting by her child's bedside stroking their hand, praying that everything will be okay

The mom who is in the waiting room for a procedure or surgery to be over, as fear and pain grip her heart

The mom who exhaustedly sits in their child's hospital room, trying to find something to distract or comfort

The mom who doesn't know what the future holds, who hopes for the best, but fears the worst.