Missing you

Hello my sweet boy!!
Did you see the new flowers we brought for you?  We picked them out special just for you.
We all miss you so much down here.  I wish you were still with us.  You would have been turning 5 months on Sunday!!  I know you would be smiling and laughing.  We would also be getting ready for you to have your second surgery.  Things would have been much easier then.

I cried again today.  I can't help it, I just miss you so much!!  I see your pictures up on the wall and I wish they reminded me of the good times, but they only remind me that you're gone.

I am spreading awareness on our behalf.  I know you would not want this to happen to anyone else's family.  We will be writing a book to tell your story and spreading the word about how real Congenital Heart Defects really are!!

I love and miss you so much, Jayden!!  You will never be forgotten and I will continue to share your story!!  I can't wait to hug and kiss you again.  XOXO

Love,
Mommy.

Jayden's Beads of Courage

For those of you that don't know, while Jayden was here with us, fighting - he was earning beads for everything he braved through.  Every appointment, medication, IV poke and more, he earned a bead to represent his courage.  We finally got the rest in the mail, and I am proud to show them off.  Jayden was a VERY tough little boy who went through way more than he should have, but he made us so proud and fought his little heart out!

2 months already?

...It still feels like it was only yesterday.  I can't believe you have been gone for 2 months, the hardest 2 months I have ever had to deal with.  I miss you so much, Jayden.  I hope you know that everyone down here will love you forever!!!  I can't wait to be with you again.  I am looking at your picture right now, and it kills me to think you are not here anymore.  I can't say it enough, I would do anything to have you back.

For Easter, everyone wrote Jayden letters and drew him pictures.  We had a bucket full of eggs stuffed with love!  Next, they will be going into his scrapbook.  We had his headstone decorated with Easter bunny stickers. We tried to do anything we could to make his first Easter special (even from way down here).

Today, we went on a hike with Crystal and Cameron.  All I could think about is how fun it would have been to have you there with us, in the baby backpack.  I know you would have loved walking through the water, throwing rocks and walking through the forest with us.

I hope you are having fun up there with all of your heart friends.  I  hope you are watching over all of us that love you, and keeping an extra close eye on your friends here that are still fighting.  We love and miss you sooooo much!!  XOXO

Love, mommy  <3

Today Sucked...

Today sucked…

We went out to San Bernardino today to get Jayden’s birth and death certificates.  It killed me to see “DECEASED” written across his birth certificate in big bold letters, and the death certificate pretty much speaks for itself.  No mother or father should ever have to get into their car to go pick up their child’s death certificate.  Receiving the recognition of a child's birth should be a joyous thing, but I hated it!

After that, we needed to go to Loma Linda University Medical Center – the hospital Jayden died at.  We walked through that all familiar lobby, up the familiar elevator and into the familiar ECHO lab.  I sat in the waiting room filling out forms to have his records released, the same waiting room we were sitting in with Jayden just a week prior to his death.  I looked over at the exact seats we last sat in, where we were taking pictures of Jayden making his silly faces.  I remember him looking at us, wondering what on Earth mommy and daddy were doing!!  After being charged WAY too much for his records, I was THRILLED to walk out of that hospital.

Later tonight, we went to visit Jayden only to find his things were messed with once again.  The heart-shaped cactus we bought him had been destroyed and there was dirt all over his head stone.  This is the fourth incident we have had with people messing with or stealing his things.  I don’t understand why people do that.  It is really annoying, and it is making me dread going up there.  I now know to expect the things we leave for him to be gone or trashed.  I have decided to make a sign and post it to remind people what they are doing is wrong.

One thing that did lighten up the day a little was when we were getting ready to say goodbye to Jayden, the sprinklers came on and soaked all of us!!  It was already cold, and we had just put on our jackets, only to have to take them off again and freeze!

I am excited for tomorrow.  A lot of our family and friends have written Jayden a letter made him a picture.  We filled an Easter bucket full and will be bringing them up to him.  If they are still there after Easter, I will be bringing them home and putting them in his scrapbook.

Jayden,

Mom and Dad miss you so much!  There is not a moment that goes by that you are not on our minds, or being talked about.  There is nothing we wouldn’t do to have you here with us, happy and healthy.  We love you sweet boy and can’t wait for the day we get to see you again!!!!

We Miss You!

Jayden is on my mind all day, everyday.  Why is it, as bad as I want to, I can't see him in my dreams?  I have only had one dream of him since he passed, and it was terrible!  I talk about him all the time, I never stop thinking about him and none of this has gotten any easier.

I hope you are having fun in Heaven and playing your (whole) heart out!  I love you sweet angel.
Love, mommy.

Jayden's Headstone

Yesterday turned out to be an okay day.  I was super excited that his headstone was finally finished and that it had been delivered to the funeral home.  We went up there with our friends Chris, Heather, Cameron, Steven, Sable, their daughter - Aubri and Jake's mom - Linda.  His marker turned out BEAUTIFULLY!!  I was a little worried about the black and grey pictures, because some of the others one I had seen were not as nice as they could have been.  I am happy with what we chose, because we all love it!!

March 14, 2012 - Having a Rough Night.

As most of my followers know, Jayden lost his battle with HLHS on February 10, 2012.  He fought every moment of his life, and he fought hard!!  That little boy is the strongest person I know, by far.  There are very few people on this planet who will ever go through what he did.  I am so proud of him!!

There is nothing I want more than to have him back with me, as selfish as it sounds.  I miss everything about him.  His smell, his cry, his funny faces. Everything.

We had Jayden's "Celebration of Life" on Friday, Feb 17th.  Exactly one week after he passed away.  Everything was beautiful, except the way I felt.  I was torn apart.  I could not focus on anything that was being said, even though I knew it was all good.  Nobody would ever have a single bad thing to say about Jayden.  He changed a lot of lives, and all for the better.

We cried and shared stories about Jayden.  We love him so much, and we miss him more than anything!!

I have been struggling mentally and physically through this whole thing.  Sleep does not come easily, and usually not on it's own.  I have to force myself to eat, and I get sick to my stomach.  He has not left my mind for a single second, and I cry all the time.  It has been a month, but it seems like so much longer.  It still hurts like it was only yesterday.  Honestly, this is not getting any easier.  All I want is my baby, my Jayden.

I will admit it, I know it sounds terrible... But I secretly hate all pregnant women.  I am happy for them, but my jealousy is uncontrollable!  I don't literally HATE them, I just wish I still had my baby... Here and healthy. Nothing infuriates me more than to see people take advantage of having a healthy baby.  I did everything I could to make sure I could have a healthy pregnancy, and look what happened.  Then there are people who smoke, drink and God knows what else during their pregnancy and they have healthy babies.  I would NEVER wish this on another baby, EVER but why do these things have to happen?  Why do sweet innocent children like Jayden, and so many others have to go through this?  It is breaking the natural order, children should not die before their parents.  It is not fair and none of them deserve this.

In honor of my amazing son, I have founded Jayden's Whole Heart Foundation.  We will be raising money to help families with CHD children who are currently getting treatment, or who have recently passed and are struggling financially.  We never understood how outrageous medical bills and funeral costs could be until we were forced to pay them.  We would like to help take that burden off of these families minds.

We visit Jayden all the time, at least a couple times a week.  We have beautiful flowers and other meaningful items we leave with him. If I could, I would never leave.  I want to be by his side every second until I can be with him again.   I wrote him a letter on his one month "angelversary", sealed it and left it at his grave site.  Anything to make me feel closer to him.  I wish he was still here, or he could come back so I could give him a tight hug and huge kiss!!

Tonight I am having a rough time.  I have been going through his photos, and it breaks my heart knowing that is the only way I can see him.  On my computer screen, or on a sheet of photo paper.  Why can't I look down into my arms and see my sweet baby sleeping there?  That is right where he should be.

Sorry for going on, I am just losing my mind and I honestly feel crazy.  Jayden was my entire life 24-7 for 2.5 months.  Doctor appointments, ECHOs, medication, feedings, sats, diaper changes.  There was never a spare second of the day, and I would take it all back if it meant I could have him back.

I love you SO much, Jayden.  I miss you like crazy and I can't wait for the day I get to see you again.
You never leave my mind, and I will never forget you.  You have a very special place in my heart and that is where you will stay, forever!