Just to Let you Know!!

[Karla]

To Everyone,

Sometimes I am overwhelmed coming to the site. When I first started, there was so much relief on my part, I had found a place to release my hurt and pain, frustrations and loneliness. Now I come to the site and in addition to having a place to find solace, I am also saddened to see that there are more members seeking to find what I had looked for.

Knowing the pain, the torment, the rollercoaster of emotions, the difficult times you will face, I am at most times lost for words. How can I say it will be allright, when I know from experience it will never be? What can I ever say that will make things better........nothing.

But what I'd like to say, is that each and everyday you are in my thoughts and prayers. I often think of all of you, and though I am so many miles or perhaps seas away from you all, I keep hoping that each day for you will eprhaps be a little better than the last.

In my own little way, I pray that we will all find a comfortable place to exist and the strength to face the new journey that our lives has taken.

love and best wishes to everyone,
Karla

[linda]

Thank you Karla, I couldn't say it better. Some days I just read and read and find such great comfort in everyones words. I find strength here - strength that not even my own family can give me. You all are more than "people in a chat room." Your my refuge when I feel like I can't climb to the top of this dark hole.

[Lyssa Sauer]

I have to agree with both of you. There are days that I just read and pray for the new families that I have seen join but also those who have been here a while. There is so much love comfort and compassion here that is hard to be found. Friendships that would have never taken place. I think of all of you and pray for all you that we will find just a little peace and strength together on our long journeys ahead. What a wonderful site and forum this is. May today be a "better" day for each and everyone of us. Lyssa

[Lindzy Foster]

thank you Karla and everyone else too, i agree, somedays its getting hard for me to post and i just come to read, but even then it gives me some strength and comfort to read everyone elses words, the smallest things make the difference, and i consider everyone here my extended "family"...i hope that makes sense...HUGS

[Karla]

Lindzy,

Many times I think especially of you and Kaydence Hope. I know it's because both Kaydence Hope and Cydney Paige had the same diagnosis. I try to go back in my mind to see if there was anything that I did that could have contributed to her TGA, I know that I was under tremendous stress, and I know that I was taken off guard finding out that I was pregnant, the doctor said that a baby's heart develops in the first 8 weeks, and I try desperately to go back to those 8 weeks to see if I caused her TGA. I even wonder if you and I may find that there was some common factor involved. I cannot believe that I could have had a baby who was ill. I am sorry for saying this, but I guess that I always thought that such an outcome could only have been if I were an unhealthy person. I know differently now, especially from this forum, that we can be perfectly healthy parents but have very sick babies. That therefore is the very problem, how do I reconcile this with my common sense of things? It gets even worse when I look at my daughter's pictures and see how perfect she looks, how could it be?? How could such a beautiful perfect baby girl have such an imperfect heart?? It is just not logical.

I also wanted you to know Lindzy that I wanted to name my daughter Hope, because she meant that to me.

Thinking of you and Darin and Kaydence Hope and wishing you some hugs!!

Karla

Did I ever share this with you Lindzy?

Our little flower,
Lent, not given,
to bud on earth
and bloom in heaven.....

[mummy2alison]

I wanted to reply to this thread and to send love to you all. I know how hard and lonely it is to go forward when all you want to do is go back and change things, make the outcome different and we can't. None of us can. I've tried it so many times and failed.

I belong to a forum here in the UK and wrote a poem, well not really a poem, my feelings to everyone there, who, without fail has supported me in my ongoing grief journey. I hate to say it out loud sometimes, but our grief is lifelong and it is only friends who "know" that really do make the difference and help us to go forward.

Its hard to be a member on a forum and not feel the extreme sadness of others on top of our own and days when it gets too much to bear, I try and step back and take some downtime to put things into perspective a little. But I always return, because I need to be able to give if I can't express my own pain. I hope that makes sense.

So here is my poem, to share with you, because there is no friend like a friend who truly knows. I hope its okay to post it here

With love and remembrance of all our precious children

Sheryl
xxxx


“Knowing” by Sheryl McMahon

There are no words you could say
That would take this pain from my heart
There are no actions to remove
This knife that is within me
Where my heart used to be

There are no words I can say
To let you know how I feel right now
No distractions that will take
My mind away from this turmoil
This deep searing pain I feel

But “knowing” in your heart
How it feels to hold you baby
The one that won’t grow up
Or do all the things you dreamt of
Is enough

“Knowing” is all I need to know
That you “know” and I “know”
The depth of the reality of this place
This yearning place I have lived in
For too many years

I have tried to walk away from it
Leave it on a bus, a train, in the car
But it follows me everywhere
And so I have learned

That my baby may not be with me
Physically in my arms
But she is forever in my heart
My soul, the very core of who I am
Never to leave

I thank you for “knowing”
How my heart feels
How my heart aches
How my soul cries

For if you didn’t “know”
My world would be a much emptier place

I am sad that you do “know” and that I “know”

I will never be able to bring back those days before the “knowing”
But I can walk your journey with you “knowing”
And share the feeling and together “knowing”
We may share some sunshine amid the tears

Thank You just for being there “knowing”

[Karla]

Sheryl,

I am so glad that you chose to respond to this thread, and your poem has captured it perfectly! You have said it all, many times or rather most times it feels like I am walking backwards, and quite frankly I believe that if I had the choice to walk backwards I would, I would most certainly like to go back to that time and place, perhaps this is one of those instances in life when a second chance would be grasped with arms wide open.

Sometimes all I want to do is sit in the same spot, many times I envision myself at Cydney Paige's bedside in the hospital and wish I could go back to that moment, perhaps there would have been something I could do differently and today the outcome would be different......perhaps, I could have prayed harder, believed more, have perfect faith and trust in God, or simply hold her in my arms and eyes, heart and soul forever, perhaps I would have gotten to see what her little legs looked like, or whether she had any moles on her back, maybe I'd even have gotten to see her smile. It truly is sad, that it's only us who would ever know, living life with a huge hole in our soul. Those who do not know will give us the "positive thinking" lecture, seeing the upside to things, the "you have to get going" talks, but what they do not know is that we do want to do all of that, but it has now become harder than ever before because we carry the weight of grief, which at times could seem to have grown heavier than the day before.

Never does anyone say. "I know it's hard and you are hurting but I'll be there to give you support."

Well perhaps one day.......

One great thing about being on this forum is the brutal honesty it allows us to express ourselves with, it allows me to express my pain, my rage, my confusion over emotions and questions that I can never seem to get answers for, and the positive from all this is that someone else's perspective on things always helps!

It also lets me write silly poetry and things that makes no sense when read afterwards......thank you, thank you.........Cheryl, Kirk, Sandy and others

Karla

[jaiew]

i'm right there with everyone. i may not write a lot of responses but i read every post on this site. somethimes i dont write because im at the same time am falling apart and i think to myself if i cant stop crying right now then what on earth am i going to say to someone that feels the same way i do at that moment. without this forum i dont want to think of what shape i would be in right now. i know im not doing great but at least i havent wanted to take an endless walk into the desert. althought right now its 115 out here and that could also be part of it:p .

i have to say thank you to everyone for helping me when i needed it

[Lindzy Foster]

Sheryl, the poem is great, so heart-breaking but expresses so much that we all feel....


Karla,

The feelings are the same for me too, I think of you and Cydney Paige all the time and just get so angry thinking that she should have had that chance to get to the United States to have her opportunity at surgery, its not fair, those people should have made all of that paperwork and everything else go faster to get Cydney Paige flown here so she could get the care she needed for the TGA, im so sorry, i just wish it were different and you were spared this pain we feel....i too wonder what it is i did in pregnancy, especially during those first 2 months that could have caused her CHD...i admit that this pregnancy was not planned, we were using protection so my body was not prepared like it should have been to carry a baby, and when we found out we were pregnant it was a complete shock, in fact i was about 7 weeks along when we found out(i dont have regular cycles and had been sick off and on so it masked some of the early symptoms) so almost the first 2 months i wasnt taking vitamins or anything so i blame myself alot....i wish they could tell us why the CHD??? and i too wonder how Kaydences heart was so messed up but you couldnt tell looking at her...that little saying is very sweet, i think i have read it when you posted it before somewhere...i thank you so much for thinking of us Karla, i know and have seen the posts that you have been struggling so much and i wish i could help, i seem to vary depending on the day...i dont think i have shared with many but we got the results of Kaydences autopsy, and it was bittersweet, as we did get some answers to why the surgery failed, we found out she was pretty much doomed after the first surgery because the autopsy found a tear in one of her coronary's to her back left ventricle that had caused blood flow restriction when the blood pooled between the layers and necrosis(blackening) of the left side of heart so that is why it would not beat on its own, the surgeon admitted to us that he believes it was his fault and done when he reconnected the coronary's after the arterial switch, the switch was also positioned incorrectly as well and when swelling occurred after the surgery it pulled on the coronarys and made the coronary rip worse and caused more hemorhaging...this was on the backside of the heart and they say they did not see it when they went back in and made other repairs and did not see it on the machines....

Karla i pray for you, for all of us, to have strength and comfort, please if you need me, i am a phone call or email away...
HUGS
Lindzy

[Mike Buckley]

Karla, I couldn't have expressed my thoughts any better. I hardly ever log on anymore. This is a wonderful place but it makes me very sad to see such heartbreak everywhere. I too pray for everybody each night. I hope God is listening. Mike Buckley

[Karla]

Lindzy,

You are so strong to have had an autopsy done on Kaydence, and to read and post its findings. I could feel myself cringing with pain for Kaydence as i read it. I go through those questions all the time. I did not want an autopsy done, maybe because Cydney Paige did not reach as far as having any surgery it would not have really made a difference. But whenever I can get myself to thinking about her having had the surgery, I wonder if it would have hurt her little body, how much pain would she have been in had she reached that far. Life has really hit me hard, I know that I reveal a lot of pain in my posts, but this is something that hardly a day passes without it being in my mind. I love my little girl so much, I was so unbelievably happy to have her, she was this huge bundle of joy for my husband, her big brother and her mommy, and I miss her so very much. I am attempting to go back to law school, and it's so hard, I have headaches everyday, my teeth are clenched all the time from stress, and I ask myself why isn't she here, cause if she were, I'd never go back to school, I'd be looking after her, chasing after her, marveling at her cuteness and sweetness and loving every minute of it. How I wish that I could get an insight into that something that is bigger than all of us, that which has control of our destiny, of our paths and our lives and no matter how well we plan, and how good we are,or how careful we are, we cannot escape its power.

Some say to me that there is always a good reason for everything, do you thing that we will ever be able to validate that?

Karla

[Lindzy Foster]

Karla,
i hope there is a good reason and i know that when i reach heaven someday the first thing i will do is to scoop Kaydence up in my arms and kiss my baby girls face holding her tightly, the second will be to ask for the answers to that burning question why??? why us, why her, why then, why everyone??? i pray the answers will be there, and i cant bare to think that they wont be...as for the autopsy, the papers were shoved in our face while we were still spending time cuddling Kaydence after she passed, there are many teaching hospitals in the area, and we discussed it quickly that if they could learn something from their surgery techniques and maybe discover why a surgery that we were told was a success ended in death, then maybe something good would come from it and we could spare another parent this pain...but we were specific in only allowing the autopsy on her heart and lungs, i would not allow any more incisions in her precious body than she already had from surgeries...and now we live with answers that haunt me, a different surgeon with a steadier hand and Kaydence could quite possibly be alive today...but what do we know? maybe other things would have happened and the transplant would have never came thru in time...but that still doesnt stop me from wishing i had more days with her..the what if's??? i try not to think too hard about Kaydences little body after surgery, after the 3rd, the night before she passed was the worst...it killed me inside to see all of the machines and tubes in her body and not being able to barely touch her for fear of upsetting a machine or causing too much stimulation...not being able to take it away and make it better, how i wished it was me laying there so that she didnt have too...they assured us over and over that she could not feel the pain, but i still wonder and cry remembering the look in her eyes that last night...she had had enough....i wish you luck with the law school, i too know the headaches, i have come to terms with living with them everyday, nothing gets rid of it.its a constant pain and dull ache in my head..and my eyes always hurt, i sometimes walk around even in the store with my sunglasses on, my eyes are so sensitive and i dont know why, and then i also do it because i feel people can look at me and see right thru my "normal" act....i hope it gets better...i know it will never go away, the pain, but i cant imagine living like this the rest of my life...cant imagine living without her for the rest of my life..i dont understand it.....

[linda]

Lindzy,

I pray we don't have questions. I hope and believe our answers will be right infront of us! Thining of you today, thanks for the PM and the thread!

[Karla]

Lindzy,

That was very selfless of you to have the autopsy so that the teaching hospitals could benefit, that is perhaps one of the good that has come out of your pain. I am sorry to have brought it up, and sorry that you had to receive it that way. You know I have been bugged by this nagging thought that the night I spent in the hospital to breast feed Cydney Paige on the doctor's advice, that in attempting to do so one of the tubes giving her medication came out. I had to struggle to get her from the crib with the tubes attached, and being short and doubled over with pain, and very little help from the nurses, it was difficult, I discovered the tube loose the next morning. I have wondered if this could have contributed to her becoming so lethargic. I wonder if I had not insisted on being brave and strong to remain to breastfeed if things may have been different.

How did Kaydence look at you that last night? For most of the time Cydney Paige slept, but that last night her eyes were wide open, bright and alert. She looked at us all, from one face to the next, especially her brother, she looked so well, little did I know that she was saying goodbye. My husband rushed us out saying we should let her rest, I heard after that she continued to look around for quite a while. That hurts me so much, I feel like I abandoned her, I wish that I had stayed all the time, so she would not have had to wonder where was mommy. I pray that she knows that I had to rest too, because I knew that in order to take her to Florida, I had to be well, and that I had to make the decision to make myself better. I wish I could have frozen that moment, I wish I knew what she was thinking, at the time though it was a really awesome feeling to be gazed at by her, it was like she was really taking us in, it was a moment of true love.

Karla