Prayers for Sweet Sweet Harrison.

The CHD world was rocked to it’s core today, as the news spread that yet another little heart warrior had earned his wings, a too young of an age.

I imagine that he is happy and his heart is healed as he plays at the playground in the sky.

I worry for his parents. I pray that they have a strong support system to help them pick up the pieces and carry on. Harrison, is not here… but he is and always will be in their hearts.

I am sad today so very sad… at times the tears have come down so hard. I am grieving a little boy who until his passing I had never even heard of. I’m mad about that… I wish I “knew” him while he was a live. I wish I had followed his mom’s care page and prayed for him, as I do all our heart “friends”

I know that there are lots of different outcomes as we write our heart stories. I usually can find comfort from the babes that a triumphant and rejoice with their families, and it gives me the strength to face another day.

Then a story like sweet Harrison’s comes a long and shakes me to my core. I let my mind go to that place that is always there and that I keep buried with memories of chalk and ice cream. Praying with all my might that my girls story ends with a Happily Ever After. Because that is what I need and want so desperately for my sweet baby girl. I want exactly what I know Harrison’s mama wanted for her beautiful little boy…and I am ANGRY that she didn’t get that.

All kids are special! All kids are a miracle…. but there is something about these heart babes… they have a twinkle in their eyes and smile that will melt your very own heart. They don’t give up.,.. they fight for each and everyday they have here on earth.

I was so oblivious to this before I had Kate. I am angry that I was so oblivious….and I am angry that I no longer have that ability.

Please as you say your prayers tonight say an extra for Harrison and his family.

Blahhhh…

I know here comes Debby Downer… I am! I am just down… and the only thing worse than me being down is Mike being down… and he is. I mean who could blame him, he is here, right along side me… trying to get through the days…waiting and waiting and some more waiting. Watching subtle changes in his little girl, our little girl reminding us that her heart is getting weaker. For as much as Katy is the light of my life…she clearly hung the moon in Mike’s eyes. I have never before seen such an amazingly, wonderful relationship than the one that Mike and Katy share. From day one they have been smitten with each other and let me tell you how happy that makes my heart! I love that they each have the other wrapped around each others fingers.

So although, I could tell you all the ways our life could be worse… and I know it could. I am reminded of what a dear friend always says when I say that…she kindly tells me that I am right, it could be a lot worse, but it could be a heck of a lot better. I suppose she is right, but when I think that, I’m reminded that maybe some of our days are long and our nights are often sleepless, but most times are days are fun, and we are busy making happy memories, and our faith is restored when friends, family and sometimes perfect strangers do nice things for our family because we are going through a difficult time.

So in an effort to take back our life, and to STOP living ( if you can even call what we have been doing living) and take back control of our days, our lives, both as a family, as a couple and individually.

It is best for all of us, but I know its certainly not going to be easy.

The kids are signed up for story hours twice a week.

A Family membership to the Y was just so kindly and generously donated to our family. I plan on making good use of that member ship.

Mike and I had a date night on Saturday… I can’t tell you the last time we did that and it was ordered by Katy’s doctor.

So expect some more fun pictures and expect to see us getting back to the old ways… I know that in any moment our whole life can drastically change… but right now I am going back to the basics, remembering how to have fun and enjoy my family.

Thanks to all our new readers…welcome!! Glad to have you. I love hearing from you and love that prayers are being said for our family all over the world.

The Deep Dark Post

I am so frightened.  Sometimes I can’t believe this is my life.  Sometimes, the overwhelmingness of it all makes it hard to breathe.  I feel like someone is sitting on my chest.  I wonder how we will ever get through this.  I wonder if we ever will.  I try so very hard to put on a brave face, and smile and enjoy this life and each and every day because I know its what I am supposed to do or expected to do.  When really all I want to do is cry, yell, scream.  I am angry, I am angry that this happening to me, to Mike , to Patrick and  most  of all I am angry that this is happening to my sweet sweet baby girl.

I don’t know how to express these next feelings, other than  Mike I feel very alone.  I feel like no one else understands or wants to understand what our life is.  Not to say we haven’t been shown some amazing support .  Because we have, and were are forever thankful for that.  I mean more like there is a disconnect.  As I said I don’t know how to explain it.  It’s just lonely.  Which isn’t anyone’s fault if anything its my fault, I have pulled a way a bit recently and hope to face the world again soon!

Mike and I have had to make sacrifices because of the hand we have been dealt.  Those sacrifices come in various forms.  We have sacrificed friends, and sadly some family because they just didn’t get it and just couldn’t understand where we are and what we are facing each and everyday.  The old saying holds true, when tragedy hits, ( I hate to say tragedy, but I guess when you are faced with the unimaginable) you really do learn who your friends are.  It has been a huge awakening to us.  People who we thought would be there for us, surprisingly weren’t.  I was enlighten to learn  just how truly selfish some people are, and you know what we are better for it.  A LOT of our time is filled up with doctors appointments and such, our time is valuable and I would much rather be spending it with those that truly love us, so that is what we do.

Sometimes like tonight, or should I say this morning  since it is 3AM and even though I should be sound asleep (sadly, I don’t think Ambien is working any longer) I wonder how we will get through this, and I find myself willing the phone to ring, with Transplant on the other end, telling us they found the perfect heart for our princess, since the heart I gave her, the heart that grew inside me was not perfect and has failed my girl, has failed us all.

And even though the thought of transplant and all its associated risks scares me, the uncertainty of when this heart she has is going to stop working scares me more.   So once again, I am forced with not choosing the best most wonderful option, but the lesser of the evil. 

But, I know tomorrow will be filled with laughter, Mickey Mouse Club House,  lipstick, and potty dances!

I know that 95% of my day will be filled with normal happy mommy joys!   Until, its time for meds, or I catch a glimpse of her G tube and I am reminded that nothing about this life is normal.

Having a bad day!

Well today is one of those days…one of those bad, bad days! I have no desire to do anything.  Katy and her special heart is weighing heavy in my mind.

This time of year is especially difficult for me, due to Kathryn’s birth. Although, being the best day of my life, and it was.  It was also a very traumatic day for me.   This year it is especially difficult, because I fully expected Katy would have her new heart by now.   We are approaching our 5th month of being listed.  Many of the heart babies I know that have been transplanted all seemed to have their new heart by the third month. 

The average wait time is 6-12 months, that said Katy’s doctor expected it by Christmas as well, purely based on her experience, since there is NO WAY to predict when a heart will become available.

Although, Kathryn continues to be stable and her medicines keep her healthy.  I know she is getting sicker, I know she is no where close to gaining the amount of weight that she needs to be gaining.  I know our days are numbered.  It’s a horrible feeling.  What’s worse is I know Mike is feeling all these same feelings, which makes it even scarier, since he is usually the optimistic… she’ll be fine member of this team.

I also know that there is not a damn thing I can do about any of this. Which makes it 10x worse.

I also feel like as much as our friends and family try to relate, try to understand, that they really have no idea just how sick our little girl is, and how sad and painful and tiring our day to day life is.  I try to put a brave face on… but our life is very difficult.  I am sick of it.  I am sick of pretending we have everything under control… when in all reality I have never felt so out of control in my life.

No one is sleeping…even though I take enough sleep meds that should put a horse down.  Mike is balancing everything… there are many days I am just useless.  It makes me so ANGRY!!!!  I want to know what its like to just be normal… I hate that I will never ever know what normal is.