Wednesday, March 14, 2012

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!

2 comments:

  1. We lost our hlhs baby 5.5 yrs ago and ur words really hit home. Im so sry for ur loss and that u evn knw what hlhs is. Jayden was beyond beautiful and looked so good n pics. The statistics lie. We were so ill prepared for this journey. We almost lost our four mth old n jan w an evn rarer defect that our teen has also. I hate this road of chd uncertainty. I will remember u n prayer. Thx for sharing his story w the wworld. Heart hugs to u.

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