When you lose a child...

When you lose a child, it's like an out of body experience... your whole life changes. You pray, pray, pray that it's not happening. You beg, plead, cry, scream and go numb...then when you think you're done, you start all over again. Its everyone's worst nightmare...but it happens...it's happens. I've always wondered why us? Why did this "nightmare" happen to us? Were we just randomly picked by God...kind of like the lottery of heaven? Were we chosen because God wanted us...needed us...to know something? I honestly couldn't say. When you lose a child, no one wants to talk about it after it happens. It's almost like, if others mention the dreaded D-word that it will bring up sadness and reminders...when in fact people don't understand that everyday is a reminder after losing a child. Everyday! Even 4 years later...there is sadness and reminders. Sure, you think you are doing just fine. You are finally feeling again, and then BAM...out of the blue, you get sucker punched....and the hurting hits hard. When you lose a child to prematurity...let me start over on this...When you have a pregnancy that, from the start, is threatened, those months of doing everything in a mothers power to protect that baby...those babies in my case...becomes first and foremost in life. They(doctors) call it "a threatened miscarriage...or abortion". But wait, I WANT this/these babies, it can't be an abortion! But nonetheless, that's what the medical term is. So you plan on weeks...even months of bed rest...anything to ensure the health of this/these babies. Then the dreaded day comes...weeks...no, months too early. You beg, you plead, you make deals with God to let them be alright...and then you go numb. Then the "out of body" thing I was talking about above kicks in....and then...then your looking at a whole new life, a new you.

In the NICU you see your baby/babies and you wonder how could something so small survive. You don't get to hold your baby like a mom is supposed to be doing...instead, you are looking at them through an incubator. An incubator with tubes and wires. There is machines for everything...including a machine breathing for your child. How can this be? Why did this have to happen. You prepare for everything...yet nothing seems to prepare you for this. There are going to be hurdles and obstacles to overcome...words you've never heard of, phrases that are like a different language. Infections, operations...this and that...so much to take in, yet you have to...you are now on the roller coaster that they call the NICU.

Then for us, the worst happened. The doctors tell you that they cant do anymore. Then you beg, plead, scream, cry and then go numb...we lost our child.

We heard it all after that..."well, at least you still have one." Or, "God has a plan for everything...it happened for a reason." Even after four years it is still being said. Sure...I have made this nightmare that we have faced into something positive because I dont/didnt want my son to have passed away without any meaning. I have turned Nicks death, our loss, Kenny's disabilities and chronic illness into helping others. I have put up a brave front and forged on...for my sake and for the beautiful lives of Kenny and Nick...but I just sometimes get sucker punched...out of the blue.

This time of year hits me hard, and to have wanted something...my twin pregnancy, my twins to live so much...even after a chance of a miscarriage at 7 weeks...even after bleeding at 15 weeks and even after bed rest at 21 weeks...I tried my best...and it just wasnt good enough. Still feeling mommy guilt after 4 years. Then to be around people (family)pregnant with or who have twins...and to top it off...play it off like I was never pregnant with twins...hits hard. DARN IT....I am a mommy to twins...just now, I have one on earth and one in heaven! I know what it felt like to feel 2 babies inside kicking and moving. I know the feeling of looking at not one baby I gave birth to, but two babies. I HAD TWINS. Its not fair, its not what I wanted....this nightmare...these feelings are not what I want, yet I have to live with for the rest of my life.

And to top it off, not only do I have to deal with that, but the fact that my son is not like other kids his age. I get to experience a whole other "bigger experience" of having my son looked at by other kids and asked whats wrong with him. I get to see how far behind developmentally he is to others. How he cant talk. How he gets frustrated with things. How he acts differently than other kids. I get to go into panic attacks every time he gets sick. I get to go on "house arrest" with him for fear of him being around people and getting sick. I get to get that sick feeling of begging, pleading, screaming, crying and going numb with him when there is a new problem or just thinking about the future. Sometimes I think that it would have been easier if I would have lost the pregnancy early on (like I thought I did) to miscarriage....but God never promised an easy life. I will never stop missing my Nick. He was alive. He was real. But as the days and years go on...the memory of the way he smelled and looked are slightly fading...which makes me sad. I remember holding him and smelling him and telling him that I'd never forget him...

Every day there is something that reminds me of him...and that something is Kenny. At the same time, my heart breaks for him too. I don't want him to grow up different from others...yet I know he will. I don't want him to die early...yet I know that is a real possibility...and I am scared and sad (there, I said it).

When you lose a child, it hurts.

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Wow, first off please accept my sincere condolences.. I lost my first child at 24 weeks, I have an incompetent cervix which in a nutshell means my cervix dialates prematurly... I never thought I would be blessed with a child again and to my surprise at age 39 I became pregnant. This time I went on bed rest for some of the time and got a cerclage a stitch to close my cervix.
I still delivered at 28 weeks 4 days.
She is now 5 years old and has CP and hydrocephalus. I am a single parent and it is very hard sometimes, most of the time but I feel so blessed to have been given another chance.
No- one could ever replace my first baby Bella and she will always be my first, but I feel just so thankful to know what it is like to be a true Mother, to have felt a baby growing inside me, the kicking, the delivery etc.... and equally blessed to have had a living child today.
My heart goes out to you and only those of us who have had and lost a child will really only understand the pain, the emptiness, the guilt, and questions. But, please continue to journal, to reach out and to know that it is true my friend that God chose you to be a parent to this angel and there was a reason he chose you!!!! God bless and keep in touch! :)

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Thank you. So sorry about your baby as well. (hugs)

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I wish I had some kind of comforting words... or an answer... or something to help...

All I can say, is how sorry I am... How strong you are to keep loving your child... to keep going on even tho your heart aches for what is lost.... You could have given up, you could have said the pain is to great... Yet you keep prevailing and moving forward... What strength and love you have... So admirable... Anyone of us, if we could, would turn back time and make things "right." I am so sorry...

You are a great mom... We are all here for you... Let us be here for you when times are rough and it is difficult...

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Hugs
We also lost a twin, though it was earlier than you lost your baby, but I have been there for many of those feelings.
Being told by people "well at least you have one"- like our other baby was nothing.
And seeing others glout over others who are showing off their twins. I want to scream, my dd is a twin too. I should be a twin mommy. Unfortunately people don't see that. They look at dd and think I just had a normal singleton pregnancy without any problems which is furthest from the truth.
My brother and SIL just gave birth to fullterm b/g twins just shortly after my dd's 1st birthday and now I also have to live with the fact that that should be my life and wondering why both their babies lived, when our son didn't.

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Yes losing a child hurts. Oh my friend I can relate to these feelings so much.We did not have twins but we did lose our firt and only child. Benjamin was born at 26 weeks due to severe preeclampsia and IUGR. He lived and fought for 4 months in the nicu. Losing him has changed me forever. I am so sorry for your pain. Sending love to you. xoxo

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@tomeckom

Thanks for sharing your story. I lost my first born four months ago in nicu. He was born at 30+ weeks and lived just for eleven days.

I truly get what you wrote. I have asked those questions a thousand times too and am still wondering why and how did I lose a baby, a loved an wanted boy, my baby.

Life has changed so much and I know things can never be the same.

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feeling everything you said!!!! i had twins too, but only one living. it is so hard..
hugs

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Big Gigantic Hugs, I will not sit here and pretend to know what you have gone through and what you are going through. But reading this brought tears to my eyes and I can't even think for a minute how heavy your heart is. You are an amazing woman and mother, all of your kids are lucky to have you. Nick is watching over you and his brothers and sisters, He knows how much you love him and that you will never forget him. YOU are what defines a hero to me. To go through what you've gone through and still push on with a positive attitude is simply amazing.

<3

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tomeckom - I've had every single thought you just wrote. It does hurt every day. It's not fair. I'm so glad to know that someone else feels the same way I do. Someone told me, "it was God's will". I don't care! That doesn't make it hurt less. That doesn't make it fair. That doesn't make it easier to hear the term "twinless twin" and know that I have to explain that to my living daughter one day. Thank you for sharing your thoughts and for validating mine. - Jenn

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To All,

Hugs and kisses to all of you who have suffered or is suffering and still enduring the pain of losing one child and watching the other child struggle to live. I read all of your post and then I went outside and looked up into the night sky and prayed to the Supreme Creator to lighten our burdens and to remove the grief and pain. I am praying for myself and my own child who was born at 26 weeks and suffers from CP. May our hearts and souls be lifted up tonight in love and light.

Eleven11

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I am at a loss for words and can't find anything that would take your pain away. Some of us just have to deal with the "why me" on much deeper scale. There are no answers on why life turned out the way it has, it just did and now we have to live it to the fullest extent possible.

I will say, however, that the more positive you manage to stay, the better it will be for Kenny. I always tell myself that if I feel sorry for myself and feel sorry all the time, then I can't push and encourage my son to overcome his challenges to extent possible. As much as I want to run away from everything and everyone, perhaps even life itself, I know that the purpose of my life is to be as strong, focused, and positive as humanly possible for the benefit of my son (who has CP) and my daughter. If I lose hope and courage, my son loses a LOT more than he already has. I don't let myself cry becuase if I do, I don't know if I can stop.

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Thank you all for your replies. I feel soooooo much better knowing that I am not alone. I honestly have been doing really really well. You'd think after 4 years, the pain would cease...and in a way it has...but when I went to my sister in laws house for my nephews birthday party and started talking to her sister in law who is pregnant with twins...then seeing my husbands brother and his wife with their twins (who just turned 3)...it really got to me. I cried and cried the whole night. I was very nice to everyone...I love to talk (that's why I am so open on my blog and posts), I love people, especially family. I understand that twins just happen...but come on....2 in the same family...so close to me and what we have been dealt with? God can give us a break...really. I am a huge advocate in my surviving twins medical problems and usually don't let things really get to me...but after Kenny's hospital stay recently, and then the doctors told us that he has microcephaly along with a very small cerebellum with an arachnoid cyst...on top of the immunologist telling us that he will need hemoglobin transfusions because he is not absorbing the antibodies to fight many of his vaccines...its hit me really hard...really hard. I feel much better today than I did a few days ago. I refuse to let this get the best of me...I have a friend who is dying of breast cancer which went to her lungs...she is my age and has kids...I see how she is living and you know what? She is making the most of every day....so I have been telling myself that if she can do it...and my Kenny can do it...so can I. I volunteer with the hospice, I bake cupcakes for the fish fries and for the NICU and peds unit at our hospital that Kenny goes to...so I can at least feel that all this IS worth something. I WANT to help others who are or have been...or will be going through what I have gone through. Nicks death and Kenny's disabilities/chronic illness, will be honored!
My heart goes out to all of you that are experiencing what I am going through. I am so sorry for your losses. What keeps me going is that we will meet again...and that they are all together...playing and watching over us (hopefully) until that time comes. HUGS and more hugs to you all. I wish I could help you the way that your encouraging words have helped me. Thank you.

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Beautifully said. I am so sorry for your loss and so sorry you are hurting. How can you not be? Sending love and hugs your way. Good on you for expressing it here, where you have a soft place to land and can validate so many others in the process. It heals us all.

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I am so sorry for your loss. Im sitting here reading your post and everyone elses replies and cant help but cry. Like Mariaangelina, I too have an incompetent cervix. Though I never did see him, I lost my first son at 16 weeks pregnant. Less than a year later I became pregnant again but unfortunately that ended in me loosing my second son at 19 weeks. I said hello and goodbye all at the same time. I was blessed with mu daughter who is now 3 and was pregnant with my 4th pregnancy and just 6 weeks ago delivered our son Dominic at 22 weeks 2 days who miraculously is still fighting and holding on.

Loosing a child is tough. The two losses of both my sons has changed me dramatically. To this day just thinking about the events gets me into tears. I've been told many times "everything happens for a reason" or "god knows why he does things" though I WILL NEVER UNDERSTAND.

You are a strong woman and your son is lucky to have you as his mommy. I hope that no matter what the outcome is for my son and our NICU journey that I could remain strong as like you have. God bless you and your family!

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Sometimes it seems like only yesterday. All these feelings, losing one of my twins, the things people said and most of all 41 years ago, the things people did not say. No one knew what I went through, they all acted as if nothing happened! Our own families were the worst. Yes, I too ended up with more twins in my family, why did a mother get to keep her cute identical twins only to never parent them and have one die accidentally because of bad judgement at 17 years? And then she got so much sympathy and support? My mother-in-law is a twin, both still living at 87 years, every time one of their family members were pregnant they said they were probably going to have twins because they run in the family, very insensitive bunch. If they would have allowed me to rest instead of helping them in their family business they would have had twin grandchildren. Our angel baby was perfect, just born too early for her lungs. These feelings that we try to bury still keep coming to the surface.

We can't change what has happened to us. We must be the best we can be for our other children, nuture them in every way we can as they grow. We want our angel babies to know they would have been part of a loving family, not a Mom too distraught over a baby lost to care for the children she still has. I am the only Mom my living children have, I can't cheat them of that. I am going to see my youngest daughter, 33, and her husband this weekend. I am so excited, I have her picture on my computer, 7 months pregnant. This is grandchild number 7 and even with twins on both sides of the family I don't get any twin grandbabies. I would still love to have twins to help care for but the baby is supposed to be a girl and she will be so loved and adored by us all!

I really feel your pain, it will always be there. I also want you to live a full and happy life!

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dear GrandmaZ - I still remember the day my baby died (we were still in hospital and my son's lifeless body in nicu) a relative told me my grief was nothing compared to hers (she'd lost her nine year old son 25 years ago to cancer). And many others said such things. Some said they've had miscarriages and its not uncommon to lose a baby. So many insensitive things and I still cannot get over them and never will. (I'm sorry for ranting here).

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Thank you for sharing. Sometimes it is tough to really know how you feel and then you read something like this and realize "yes, that is how it feels, that is how it felt". It does hurt.

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Thank you for this. You have encaptured everything that I feel... I was in the same exact situation as yours... and 4 years later, the thoughts and the pain are still with me everyday. I have gone on with my life, happily, for the sake of our survivor, Camryn... but not a day goes by where, out of the blue, I get "punched in the gut", also... a pain that can bring me to my knees... it really bothers me that no one wants to talk about... like they'll all of a sudden "remind" me that it happened... as if it is not on my mind already, every minute of everyday... I hate it that no one talks about it... I, also, have had three close friends have twins since my loss... I put on a happy face, because I am happy for them... I wouldn't wish what happened to me on my worst enemy... but I feel so cheated!!! Why do they get to keep both of theirs??? Why have I been robbed??? Why has Camryn been robbed??? Answers well never get in this life. I am so comforted by your post... it's helpful to know that someone feels the exact same way. Hang in there, and know that you are not alone in your pain.

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your amazing...I just lost my son 2 weeks ago and everything you wrote kind of happended to us. My son was a 23weeker but at 18weks i wass told i might have threatend miscarriage yet I was told to be careful or go on bedrest, they said they cant do anything for a baby born under 20 weeks and to come back or see my OB. Our luck my husband lost his job 6 months early and we just lost insurance, i was going through the whole emergency medical thing. This pregnancy was so much different than my daughter. She was fulllterm with no complications. With Joshua I felt presure and cramped alot...at 22 weeks I started bleeding and went to hospital and was told i was 6cm dilated. I went into full bedrest and was slanted on bed for 5days, my son came 12/18/2010 (my daughters 5th bday) I was 23weeks and 1day. Joshua was 1lb 4oz and had 10% chance of survival, after 93days they sent him home, I honesty deep down inside didnt want him home i was scared, he would stop breathing they said to just stimulate him so he would breathe again, i was denied the Apnea monitor and on the 4th day being home my son stopped breathing, although were trained in CPR and they tell u what to do it all happens so fast, ambulance and wonderful firefighters were there in less than 7mins. He was airlifted to childrens after being stabalized at our local hospital...3 days after lots of tests they said he had too much brain damaged from lack of oxygen. We had to take him off the vent and let him go...we witnessed his last breath and its ben hell...I just realized ive been rambling im sorry, I share your heartache and i also mourn my son....im sorry again

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Oh I am sooooo very, very sorry on the loss of your son. Please know that it honestly does get easier...it really does. Also know that you are not alone. My heart is breaking for you and your raw emotions right now. I just want to give you a hug right now. Remember all you can, hold onto every memory and let no one tell you how you should mourn. I posted this (from my blog) to help myself validate my feelings...and also let others know that this IS real...it DOES happen and it hurts..but like our children were...we are strong and we must not let their lives and passing go without some meaning. I hate the fact that many of us here have lost a child...you know...the thing that is never suppose to happen...well, guess what world, it happens. Its real and it changes a person. Not only did I lost a child...but 4 years later, I have to worry about one day, losing his twin! It really sucks. This is why I keep my blog...and post my posts in my journal here....I have a very strong connection to all of my Inspire friends. Thank you from the bottom of my heart for letting me vent my feeling here.

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