three... impossible.

09 March 2015

This week Hayden would turn three. I remember Jackson as a three year old and it was so trying but so fun.  I remember thinking the terrible two's weren't so terrible- that three's were so much harder- but so much more to enjoy together. Every stage my children have gone through has been my favorite. I feel like most parents would agree- and feel that statement doesn't make sense if you aren't a parent.

Three would have been a big year for Hayden- likely he would have his Fontan this summer and with high hopes of all going well, we would finally be on the other side of this whole nightmare for a few years. But instead, I am still very much in the thick of a very different- never ending- nightmare. One that still often consumes my thoughts in very different ways than it did 2 years ago. I find myself now consumed with what he would be like now- what he would look like- how he would behave- what would his personality be like- would his red hair determine his behaviors like they already do his baby brother- what would our family be like- what it would be like to feel so fulfilled and fully happy- what the three of them would be like together- would he and Jackson spend every afternoon and evening entertaining Hudson together- and then my mind goes to that place that I just can't help- Hudson wouldn't be here if Hayden were. Then the world becomes silent and everything around me stands still. What?? Hudson not here? Rob and I wouldn't have tried for another baby for a long time if Hayden were still here- not because we wouldn't want more kids- but because we had discussed it and agreed that we would wait until Hayden was through his Fontan and stable before having more. We knew how hard it was to be split as a family and didn't want to add another baby into that mix. So then my mind gets all messed up thinking about a life with Hayden and not Hudson- and visa versa- and it just gets way too complicated. And thats what I call a total mind f*ck.  Because as much as I feel like I'm still dying inside without Hayden here, I just can't fathom or imagine a life without Hudson. It is the strangest most difficult thing to explain. Mind f*ck.

Hayden would be three...and that seems impossible. I still see him as a 5 month old. I see him as the baby of the family- although in less than four months he will once again be a big brother and will be the second oldest child of our family. But to me he will always be that baby- so picturing him as a three year old is sometimes difficult. I have some very close friends with kids in that three year old range and I find myself gazing at them trying to change their face and hair to look like what I think Hayden would look like now. I watch their legs move and run and study their gestures and abilities. How they eat- play- talk. I often have to snap myself out of my gaze and bring it back down to reality before I get too overwhelmed with it all- and it is so easy to get overwhelmed with it.

I assume this will pretty much be my life going forward. Watching kids who are his age and fantasizing they are him- or that he is there interacting with them. I often still can't grasp that my child died- that he is never coming back- that I will live a very long life without him. It is so damn overwhelming and the reality of it all can sometimes hit me so hard out of nowhere that its crippling. I've heard from other grieving mothers farther along on this journey that those feelings never leave you. And I get it- but I hate it. And can't for the life of me figure out why us. Why Hayden. Why me. Even if my brain starts to process that thought I shut it off- no reason I can give myself or God can give me will ever be good enough to explain or give closure to this hard to explain, excruciating pain. And it is so hard to explain. Any mother reading this- or parent for that matter- take one whole minute- just one- and picture your life without one of your children- with one of your children dying. Never coming back. Dying. Close your eyes for one minute..............    If you truly allowed yourself one minute to visualize that life I bet you are internally in pain and in tears. That was one minute of your life- you can go back to your reality where all your kids are alive.  I can't ever go back to that. Ever. So that pain you felt for one minute (which was probably the longest minute of your life)- that is my reality forever. Thats the best I can do at explaining this pain- and I hope with all I have thats the closest you'll ever get to feeling that.

This week Hayden would be three- his past two birthdays I have spent at home crying 90% of the day. Barely breathing for huge chunks of it. Functioning just enough to care for our kids but nothing more. But this year we are going to try something different- and it might be an epic fail- but I think its worth a shot. A few weeks ago I started really thinking about his birthday and of what he would enjoy these days- what kind of party we would be planning- how active he would be- and I started smiling through my tears picturing us celebrating another glorious year with him. And then it hit me. He wouldn't want me to be crying on his birthday. My guess is he'd rather me remember his birth as a celebration of our first meeting and do just that- celebrate it- enjoying the day together as a family the best we can. So this year thats what we will do. We will of course blow our bubbles up and release our balloons like we've done the past two years, and I am sure there will be tears- but there will be laughs and smiles too. We will spend his birthday celebrating him the entire day- celebrating our family and all we have survived together.

3rd annual pa golf tournament- honoring mason moyer and family

08 March 2015

Meet Mason!! Mason was born in November 2012 with a severe heart defect, Tetrology of Fallot. He has a heart healthy twin sister and they live with their parents in Milton, PA.
Our 3rd Annual Pennsylvania Golf Tournament will honor this cutie and his family- we hope you can join us! We are hoping for another beautiful day of raising awareness and funds for Hayden's Heart, for CHD and for the Moyer family!!

Event Details:
Date: Friday, July 31st 2015
Place: Wynding Brook Golf Club
           201 Harveys Lane, Milton, PA
Time: Registration 8am
           Shotgun Tee off- 9am
Price: $85 single, $340 foursome

There will be a complementary luncheon and an awards ceremony immediately following the close of the tournament at The Sticky Elbow in Williamsport PA.

Please see the forms below for registration and sponsorship options or
email to register or for more information.

Paper Registration for individual or foursome

Sponsorship Cover Letter

Sponsorship Opportunities

Sponsorship Form


2nd Annual NJ golf tournament honoring siblings charlie and brooklyn auskings!

We are so excited to host our 2nd Annual NJ Golf Tournament honoring two very special heart siblings, Charlie and Brooklyn. Both children were born with Tetrology of Fallot with pulmonary atresia- a severe congenital heart defect. They have received their care at CHONY (Children's Hospital of New York) and now reside in Lincoln Park, NJ. For more information on this amazing family please visit their website:  

Last years outing was a great success for our first year and we are anticipating an even more successful tournament this year! Please see details on the event and how you can help make this event even more successful for this very deserving heart family!

Event Details:
Date: Friday, July 17th 2015
Place: Preakness Valley Golf Course, Wayne NJ
Time: Registration- 8am
           Shotgun Start- 9am
Price: $150 individual, $600 foursome
Early Bird Registration in by June 20th- $125 individual, $500 foursome

There will be a complementary luncheon and awards ceremony immediately following the close of the tournament at the restaurant on premise.

Please see the forms below for registration and sponsorship options or email to register or for more information.

Paper Registration for individual or foursome

Sponsorship Cover Letter

Sponsorship Opportunities

Sponsorship Form

3.12.12 - 8.16.12

copyright 2012 - 2015 hayden's heart inc. 501(c)(3) all rights reserved blog design by Madison & Mi