I wish I could

[Karla]

How i wish I could go from December to January on the calender instead of January to December. If I could then I would get to go back in time, then I would get to hold my girl one more time.
How I wish I had a second chance to do the things I now know about getting an air ambulance to take my darling out of Trinidad for surgery.
How I wish I did not have surgery for tubal ligation on the night before I found out the seriousness of her condition, if I did not I would have been stronger to look after her and to make all the preparations to get her away for surgery.
If I had another chance I would have demanded the sleeping nurse get up and fix the malfunctioned equipment, without fear that she would have ignored Cydney Piage.
How I wish that I could have done more for my darling, hold her closer, never leave her side, please how I wish I had one more chance.
I miss and love my little girl so much, how could I have not known that something was wrong, where was my maternal instinct? How did I miss it? I really don't know how to go on without her, I know that each day comes and I must get up and move but I really don't want to. I want to throw a tantrum like a kid and say no I do not want to go. I wish it would work and my heavenly Father would give in and let me have my way, even let me have her back. I am tired and weary, I feel persecuted by all the insensitive comments I get, such as "You must have done something bad in your past life and you are paying for it" "It's better that she died she would have been a vegetable" "if you had gone to Jacksonville for surgery, she would have died anyway and you have have lost all your money". I can't take that anymore, someone please tell them to shut up!! I wish I could hide from the world, in addition to my pain from losing my daughter, I have to face the insensitivity of those who are supposed to care. I know that they most of the time are well meaning, but it hurts, maybe I should print grievieng parents wish list and circulate them. I love my girl and I wish that she were here, but she's not and I have to put all my energy into getting through each day, could the world be a little more patient with me?
Thank you all at NILMDTS, for this forum, you do not think I am mad, or scary and I know that you would not shun me, but would have given me a big hug instead, thanks so much.
KArla

[Tammy]

Karla,
:o (((((((((((BIG, HUGE HUG!!))))))))))))):o

If I could give you one, I really would. My heart aches with yours, I had seen Cydney Piage's picture, she is so very beautiful. If there was something I could say to help ease your pain, I would say it. I wish there was something.... anything I could do. We are here for you. As hard as it is to do Karla, you can't blame yourself. Sometimes it is so hard to understand why things like this happen. I too, have questioned God's intentions many times and I still do. But they're questions I will never know the answers to, and that is the hardest thing.

As for the insensitivity of others, "You must have done something bad in your past life and you are paying for it" "It's better that she died she would have been a vegetable" "if you had gone to Jacksonville for surgery, she would have died anyway and you have have lost all your money". I can't take that anymore, someone please tell them to shut up! -- GIVE ME THEIR NUMBER, I'LL TELL THEM!!! ;) UUGHH!!! Comments like that really get my blood boiling! I'm so sorry you have to endure such ignorant people~ I think you have a great idea, printing out the Grieving Parents Wish List.... I would do it and send it to them. Why can't people be more compassionate and understanding?!
If I may quote a comment from Kirk; "Every village has its idiot..." Sounds like you have to put up with a bunch of them.
No matter what, you have friends (family) here that understand. We will do our best to help you through those rough times. And you know what? You help us too. We know we can count on you for help when we need it most, we know you will understand. Thank you for being there for us.

[Deb Stoner]

Karla,
MY wish is that I could bring Cydney back to you--all of our babies back. I do not think you are mad or scary and please know that all of the feelings you described in your message are very normal for a grieving parent. I, too, remember wishing people would just shut up! I hated hearing hurtful comments. I remember sitting in my bed, just screaming and holding my head because I didn't know what to do with myself and I just couldn't stand the pain and guilt that I felt. I was so mad at myself for a while, thinking, irrationally, that I did something to my baby. Everything just hurts, it just hurts-physically and emotionally. Before Marah died I used to think when someone said "my arms ache to hold ______." that it was just a figure of speach. I did not understand that the ache is very real. It is astounding to me how much emotional pain and physical pain can coincide. I'm so sorry Cydney cannot be in your arms. I hurt for you. Please know that I read your posts and think of you and your sweet girl as you are beginning your grief journey. You may want to think about looking for infant loss support groups in your area. They can be very helpful. Also, MISS foundation offers online support for parents. I think it takes telling your story over and over again, if only to be able to say Cydney's name, that a little glimmer of light can begin to peek through the darkness. I'm glad you're able to share here.

[Cheryl Haggard]

You know gals, I have been doing alot of surfing on the world wide web lately, and let me tell you, there are alot of world wide idiots out there. I have come across some sites that have "blogged" about nilmdts and parents who choose to photograph their precious babies, and the comments are just as insensitive as the 'shock jocks' on the radio station. Do the comments bother me? Yeah, a little. Do I feel sorry for the people who find pleasure in making these kind of comments? Yeah, alot! These people must really be missing something in their lives. To joke insensitively about our little innocent babies... One thing I have come to realize, from meeting and talking to you, and others that have experienced this loss in their lives, NONE of US would ever wish this heartache on another human being. Not even those ignorant or insensitive enough to make and turn our heartache into a joking matter...

I have people in my family, who still make insensitive remarks. I have people in my family that don't mention Maddux. And yes, that hurts. One sent a card, saying that they were thinking about me...I don't want them to think about me. I want them to think about Maddux. (Just tell me that you are thinking of Maddux, and that will mean the world to me.) Just mentioning my son's name, means the world to me. Let's me know that you care. So, does that make me ungrateful? To them, yes it does. It makes me unsensitive to their feelings. Well, this isn't about their feelings...But, again, it's not about me, or (us)...It's about our babies. Letting us know that our babies still mean something to them...

So here we are: We have to take a stand. We have to let other know exactly how we are feeling. And we can do this in a compassionate and caring manner. We can't be silent. We just need to let others know how we are feeling. Why it hurts us to hear comments like:
"You must have done something bad in your past life and you are paying for it" or "It's better that she died. She would have been a vegetable." or "If you had gone to Jacksonville for surgery, she would have died anyway and then you would have lost all your money".

Let's talk about priorities? I would have given my last pennie, if that would have made Maddux better. I know all of us would have. Life is not about how big your house is, what type of car you drive or if you are wearing the newest and trendiest clothing. Life is about being the best person you can be, raising our children with these values, and making a positive difference in this world. That's what each person's priority should be.

Karla, If I could make this better for you, I would. Believe me, I would. We all would! We may not be able to make it better for ourselves, but we can start by making it better for others...

We have to try...

[Deb Stoner]

Cheryl,
Funny that you replied today to this thread. I was going to email you today as soon as I got home. I think Maddux was trying to talk to me today. Really, I do! I know that sounds crazy, but, here is what happened. The kids and I got in the car today and on the way to a friends I heard his Pooh song. (Which I thought was odd because I rarely hear that on the radio anymore.) Then we went to an outdoor mall/sprinkler fountain for the kids to play in and I heard it again blaring from an outdoor speaker. I know you're not going to believe this, but then we went out for pizza and I heard it AGAIN! Wild, huh? Hi to little Maddux and all his pals!

[Cheryl Haggard]

I believe it. Let me know if you figure out what he is telling you...

[Rick Donovan]

Karla - My heart goes out to you and so do my prayers! Know that when someone says something insensitive, it is usually because they are the lucky enough to have never felt "The Pain". I have come to let those comments roll off and simply say "thanks for thinking about us". It's hard for them to understand our pain. I was lucky enough to know our daughter for almost eight years before she left us, so our friends and family all have great memories of her that we share/laugh/cry about together. I too have had those thoughts - "I should have known something was wrong sooner," "How could I have missed that...", but I have learned to trust that God has his reasons and that everthing is as it should be. Know that God has given you a brief glimpse of the purity that awaits us all! Even though I miss Tiffany's physical presence, I know that God has given me the gift of his love, manifested in the short life of a truly remarkable little girl!

Deb - There is a name for this - Synchronicity - and it is good that you were able to recognize that someone was trying to tell you something, even if it was just to say hi from the other side! Most people don't realize that these things are going on around all the time, but learning to recognize it and understand the meaning is a true gift and the more you look for the coincidences the more you will find them!

[Cheryl Haggard]

Rick, I just read your introduction above in the photographers section. Thank you for sharing Tiffany's memory with us here. Know that my heart and thoughts are with you and your family also. I always like to think and say, that when we meet another parent that has lost a precious child, that our children are meeting eachother in heaven also. I also like to think and joke that Maddux would be quite a 'handful.' So, I hope Tiffany won't be snoockered into anything...
Thank you also for your quote below...

Trust that God has his reasons and that everthing is as it should be. Know that God has given you a brief glimpse of the purity that awaits us all!
I truly believe this with all my heart, and usually this lessens the pain. But I still have days, even knowing this, that my heart aches longingly for this awaited time.
Many blessings to you Rick...
Cheryl

[Rick Donovan]

Cheryl,
I am sure that there is nothing about trouble that Maddox could teach Tiffany :D That girl got into more trouble than the other three kids did combined! She did have this twinkle in her eye that usually bought her way back into good graces. It's funny how the things she would do to make me furious, are now the memories I remember the most. Looking back now, I realize that she must have known in her soul that she was not here long-term, because she lived each moment with such passion; each day was another grand adventure!
Our family takes two days a year - the day she was born, and the day she died - and we celebrate "Tiff Day". There is no work, no school, it's just all play, all day. It's our way of honoring the way she lived her life and celebrating the fact that we got to share it.

[Cheryl Haggard]

Our family takes two days a year - the day she was born, and the day she died - and we celebrate "Tiff Day". There is no work, no school, it's just all play, all day.

Rick-What an amazing and incredible way to honor her memory and her life...
Thanks again for sharing. What an inspiration you are...

[Karla]

Everyone,
It's so great to read all your encouraging remarks. I am really in a dump these days or to quote Scott Hays "I'm in a funk", everything hurts not to mention the horrible fights I have with my 13 year old son. I hurt even more for Cydney then. We fight all the time, I am the one to see that he studies etc, and I see all the time, his dad he's just there to give him all the love and what ever he wants even if he did not deserve at the time, spoils him rotten. Wouldn't I love to be the popular parent too, but if my husband supported me a little on the discipline lines I would be popular too. My kid is not bad he's great but as you all know we must be on top of things to keep them in line and that takes two parents, my husband knows that he should step in a lot of times but it's easier for him to give in and avoid the whys, buts and everyone else does it. After a fight I feel so alone and hurt, I could just imagine having Cydney to wrap my arms around and smother myself with her sweet unconditional love and innocence. I love my son and husband deeply but I do not believe love for my son means letting him have his own way all the time.
Deb, I would love to have a support group to join, but here in Trinidad, you don't have those things, there are lots of reasons why. The culture is different, baby loss is given very little attention. There is no counselling offered in the hospital, people even expect you to leave the baby for the hospital to take care of. I would have killed anyone who dared to suggest that to me. I did a beautiful service for my daughter and I am thankful that I had the strength to do it. Thanks to my great friend, Kennedy who did her service and got his friends to sing such beautiful songs for Cydney. In Trinidad you are expected to grieve as long as your child lived, if the baby was stillborn well you go home and pretend that you did not carry a baby for nine months and delivered him or her. That period in your life did not exist. My sister did not think it was important enough to cancel a trip abroad for Cydney's service, but later on did so to attend MY FRIEND"S DAUGHTER"S WEDDING!! Now she wants her daughter to name any baby girl she may have 'Cydney'. I really want to run from them all. I gave one sister a picture of Cydney, the next time I visited it was the same place I left it, I felt so hurt I wanted to take it back. I feel like I have to remind everyone that she was here in this world, she was a person here even if for a brief time, but she was here and there must be a reason why and there would always be goodness from her short stay, I feel privileged to have had Cydney, to be her Mom, I hurt very much but I thank her all the time for blessing me and choosing me to be her her mom. I wanted to put her picture in thank you cards, my sister said that was too gory and no one wants to be reminded. I think they are all weak and pamper themselves from reality, they have no strength and guts. As Cheryl said why shield our children from death it happens and eventually they will have to face it, but here are adults who wants to be shielded! Thank goodness for the internet, I found you guys and other sites, I will log on to MISS, can you send me the link, Deb?
Thank you Cheryl for forwarding my initial mail to Kirk. Kirk you have a life long friend in Winston who is looking forward to your project of Cydney. I know how much pain we are all in, Winston and Willie are hurting, but imagine 13yr old willie can say that he's a man and so cannot talk about his pain or cry. I wish Scott could talk to them.
I am so fed up of the insensitivity I wish I can retreat somewhere away from everyone who has never been through this. I know that it's hard to expect them to understand after all only experience brings this wisdom and we are not looking for members, but with all we have to deal with we have to let the comments slide too. A good friend of mine said to me "Cydney did not work out so put it behind you and move on, continue studying etc, etc" Well I cannot speak to her since, Cydney is not a contract or any such thing, and as for studying, yeah I study all the time, what life would be with her. Well I have rambled on, I am one big confusion so forgive me if I have gone on too long or on too many different trains of thought. I am just so angry that I have to feel like a freak, the one who had a sick baby, who did bad in her past life, Huh!!! Anyone of you guys want to adopt a Trini? I would so love to leave this island, which, Cheryl is beautiful because of the beaches, but the human resources are horrible. You know that we, as a small island did reach the worldcup soccer finals, big hype, all the players got a million dollars each, but in the hospital 2 babies are dying because they cannot get surgery for conditions same as what Cydney was born with. You can read on this page:http://www.trinidadexpress.com/index.pl/article?id=160973272.
This is so heartbreaking for me. That baby has the same condition as Cydney, and with all the wrangling he would not stand a chance. They did not help me, no one even contacted me to offer me any financial help to get her abroad, and the doctors dragged their feet, I trusted them thinking they were making the arrangements with Jacksonville hospital asap, but they weren't, every minute counted for Cydney and they moved so slowly. If I knew that, I would have done it myself, I now have the experience, but I hope that I will never need it, but I hope for these parents that things would work out. I wish I could say to them not to wait on the doctors to make the arrangements, but I do not want to intimidate them, my situation might scare them more.
Well I'll stop now, I have rambled on for too long. Please take some time to read on baby Ezekiah and pray for him
Karla

[Deb Stoner]

To Karla and anyone else who is interested in additional support, you may find the following site helpful:
www.missfoundation.org

[betsywpa]

Karla,
I just had a grandson who passed away from Potters Syndrome. While it was my daughter who lost her son, I lost my grandson who I did get to hold but will never have the memories that I do with my other ones. I understand your frustration because I watch my daughter go through the same things. While me and my husband are her strongest supporters along with her husband, my ex husband, my daughters father is a total butt, excuse my language.. He called her in the hospital to see if she was okay but never once asked about the baby that they had to take from her at 23 weeks because he had no kidneys. It was heart breaking for her. I still ache for her and the baby. He didn't once ask anything about Aidon not how much he weighed, anything. He didn't even show up at his funeral. She is so mad at him she says she will never talk to him again. It hurts when someone doesn't understand your saddness. I read an article in a bereavement paper my daughter got at the hospital. It was written by a woman who had lost a child during childbirth and she was talking about how people didn't understand why she was so sad. that the child didn't have a life and no memories. She said even though the child didn't have its own memories she had memories for it. What she was going to do with it, how she was going to teach it things, what the nursery was going to look like, how she would rock it ,etc. So yes maybe that baby meant nothing to those around you but to you, you carried that baby and held that baby and talked with it everyday while you carried it and formed a bond that can never be taken away from you. Hold on to the good memories that you have about your daughter and remember that no one can take those away from you and when people are ignorant about talking about her just remember that you always can turn to those around you that do and they can help you. Talking about her is okay, if they choice to avoid it that is there loss. They are the ones who are avoiding it not you. They are probably the same people that turn there heads when they don't want to be witness to something also. Don't give up, you are strong, you just went through the toughest thing in life you will ever have to deal with. I never dealth with anything like this before and I have found strength in the strangest places. If nothing else talk to yourself about your daughter and about her memories. If people think your crazy oh well. It beats ignoring the subject. Stay strong and things will get better. God Bless.