i'm ok...

There is nothing worse in this world than loosing your child. This I am sure of. Because if there were,  anything more painful would for sure kill you. There is also nothing I want more in this world than to have my son back. To have all four of my boys together in my arms, someday playing together, fighting together, growing up together. The pain of that never happening is practically unbearable.

BUT- I'm ok....
I'm ok because if I have to be angel mama, which I guess is what God had planned for my life- than I will say, I am the luckiest angel mama there is.
I'm ok because I had an older child when Hayden died- who quickly become my reason for living.
I'm ok because my husband single handedly planned the funeral and his final resting place, allowing me to play a part when I could- but making sure it all came together.
I'm ok because two months after Hayden died, he gave me the idea to start his legacy, Hayden's Heart. Which quickly became (and still is) my link to Hayden and my place to bury myself when anger and pain take over my body from loosing him.
I'm ok because after starting Hayden's Heart, the thousands of people who supported us while Hayden was here are now supporting us after he is gone and are the reason his legacy not only continues, but has become the amazing success it is today.
I'm ok because after 9 months of trying for him, and then 9 months of pregnancy- I finally got my rainbow- and what a colorful boy he is. I always say Hayden hand picked him just for me- gave me exactly what I needed. He gave Hudson red hair and a contagious smile- just like him. He made him a handful to keep me busy and never have a dull moment so that I couldn't slip back into that depression. And he made him the sweetest baby in the world- sweet enough to make any sad moment instantly ok.
I'm ok because I am blessed to stay home with our babies. It is a gift I have always wanted after having Jackson- and thanks to my husband working several side jobs, and all of my photography clients, I am, for now, able to be home while my babies are still babies.
I'm ok because Hayden, along with God, decided to surprise us with another perfect rainbow. Another perfect baby boy who has already proven his purpose- to also bring joy back into this family.
I'm ok because of all of the support I personally get from all of you. This past week the amount of people who emailed, called, messaged, text- all to let me know they will never forget Hayden and that they are thinking of us was out of this world. Truly incredible.
I'm ok...because other than my son dying- I consider myself lucky and blessed.
I have a husband that has as much of a passion for Hayden's Heart as I do. Who supports his family, loves his children, and tries every day to be a better husband and father than he was the day before.
I have four of God's greatest creations as my children. They make me the happiest, proudest, and busiest mother on the planet. And thanks to his legacy and to all of you, Hayden will never be forgotten. His life, fight, smile, hair, sweet face- will never be forgotten. And in his name, thousands of families will be helped, their lives will be changed, and I am the lucky mama who gets to be behind it all.
And so, I'm ok...

i remember....

I remember....
I remember the nurses wheeling you into your CCU room after you recovered from your g-tube placement and you looking at me and giving me that glorious smile for the last time...
I remember being on the phone with your home cardiologist when your SATs began to drop.
I remember hanging up on her because they kept dropping.
I remember the room filling up so fast that daddy ended up on the other side of the room as I held your hand and watched as you screamed while they tried to get your oxygen levels back up.
I remember collapsing in your daddy's arms as they wheeled you over to the CICU for an emergency chest tube.
I remember your neurologist grabbing my arm telling me it was just another bump in the road.
I remember the last time I held you before it all went so terribly wrong. The nurses begged the phlebotomist to let me hold you- saying mom can calm him down, let her hold him.
I remember holding you-rocking you back and forth- not knowing at all what was about to happen to you-because if I did, I would have never ever ever let you go.
I remember hearing you make noises in the room and asking an attending to come check on you.
I remember the code. I hate that monotoned woman's voice.
I remember dropping to the ground sobbing-screaming 'IT'S HAYDEN!'
I remember holding your hand as three sweating nurses rotated their compressions on your tiny, white lifeless body.
I remember kissing your head and watching them wheel you down the hallway having no idea what was happening and if you were going to die. I had never been so scared in my entire life.
I remember the surgeon come tell us she fixed your heart. Now we worry about your brain.
I remember feeling so hopeful. SO So hopeful.
I remember while waiting to go see you,  browsing Facebook seeing everyone change their profile picture to your picture.
I remember feeling SO MUCH LOVE and support at that moment. I just knew you'd make it through.

I remember walking into that pod and seeing a baby who looked nothing like my baby.
I remember waiting all day Wednesday for you to show some brain activity.
I remember being moved into a private and not seeing the signs that you were dying.
I remember an attending who became a friend telling us she had never seen a Glen-baby recover from  seventy minutes of compressions.
I remember walking over to you, as to prove her wrong, singing to you, talking, holding your hand, talking about Jackson- then looking back to Rob hoping he saw some brain activity on the EEG.
I remember him shaking his head no, and thinking for the first time ever that you were probably really going to die. That my sweet baby was going to die.

I remember visiting our heart friends in the CCU and her asking me if I believed your soul was still here- and answering her 'no'.
I remember meeting in the conference room with your neurologist- the same one who 36 hours prior had told me this was just another bump in the road- and him telling us there was no brain activity and there never would be.
I remember walking back into your room and laying on your bed with you. Drowning out everything around us. Listening to our music and just touching your hand and head- going far far away from that hospital room and picturing us somewhere else.
I remember my best friends coming in and helping me make some irreplaceable keepsakes and at one point realizing my chest was tingling in pain- I needed to pump milk for my child who was about to die.
I remember our family getting there and it all becoming so real again.
I remember the doctors and nurses moving you- and all your tubing and ECMO canullas, your wires, all of it- just so I could hold you alive one last time. And so you could take your final breath in my arms.
I remember thinking it should never be that difficult to hold your child.
I remember our family and best friends surrounding us as the chaplain who also baptized you just five months before was now helping us say our final goodbyes and sending your soul off to be with Jesus in Heaven.
I remember them pulling the plug. Your lips immediately turning blue. Tears falling all over my face. Thinking how in the hell is this happening right now?????
I remember trying to find the beauty in being the one person who watched you come into this world and now was watching you leave it. Like the mother tries to in Steel Magnolias. But I couldn't find anything beautiful about you dying.
I remember locking eyes with Rob as the doctor removed your breathing tube.
I remember thinking how tired and aged he looked- so full of sadness and defeat.
I remember thinking in that moment that when we started this life together this was the last thing we ever thought we would have to experience together.
I remember holding you for 6 more hours as several doctors, nurses- what felt like everyone on that floor and the CCU had made their way to say goodbye to you-and to us.
I remember the awkwardness of saying our final goodbyes to your care takers who most had become like family to us.
I remember walking out of that room and turning back one last time as your nurse held on to you with tears in her eyes and a half smile on her face trying to pretend everything was going to be alright.
I remember collapsing outside of your room sobbing- being picked up by your daddy and nurses.
I remember the pain in my chest and body as I, for the first time, walked out of that hospital and rode all the way back to our home without you in the back seat next to me.
I remember getting home and soon after getting a text from our favorite nurse who had just landed from vacation asking 'How's my little buddy'.
I remember her screams and cries on the other end of the phone- just as confused as we were as to what happened.

I remember the morning of your funeral. Waking up, putting on the same black dress I wore to my grandmothers funeral a few years back, thinking I can't possibly be getting dressed for my sons funeral right now.
I remember sobbing so loud twice in that funeral parlor that I could actually hear myself echoing.
I remember the first few weeks and months feeling my body go in and out of numbness, the pain was just too great for my body to bare.
I remember wondering if the ache and deep pain in my chest would ever go away.

I remember through all of this- the three days leading up to your death, the week planning your funeral, the first few weeks and months after you died, and even now...I remember the love and support we were and are given by people near and far- people all over this world.

I remember....and I will never forget.

another successful blood drive!!

What a moving event!!
Our blood drives continue to be hugely successful year after year. I am so amazed at how every year the Red Cross bumps up our goal, and every year we surpass it!!
This year our goal was 43 pints- and because of all of you, we hit 48!!!!

This event is always so emotional for me and I know I say that every year but this year was even more. So many more people whom I've never seen before at our events were there- and we had 17 people who were first time donors! Just incredible!!

I caught myself fighting back tears several times while watching everyone donate- so many familiar faces there- our neighbors support us in everything we do- and I heard Rob joke a few times how more than half of our block was there at one point or another throughout the night. Acquaintances and friends from Jackson's school, former students and coworkers, friends from all over town, a couple family members, Jackson's kindergarten teacher, and even a fellow CHD family heart emoticon.

We are once again so incredibly grateful to all of you for taking the time to come donate blood in honor and memory of Hayden and of all the times he received blood transfusions and was on ECMO. Thank you once again for making this part of our mission with Hayden's Heart successful- couldn't do any of this without you!!
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We had a small door prize raffle and the winners are:
- Carol Rouski
- Janet Corso
- Karen Zambrano
- Tamara Beresky
- Casey Zdarek
Please email me to claim your prize!!