I just want to know..

One of the very hardest things for me, about losing Grace, is this. I wasn't there. My baby didn't die in my arms, surrounded by love like almost every single other baby I read or hear about. I don't know anything at all about the day my daughter died. And it kills me. I wanted to be there. I want know about her day. My daughter died around 2:45 pm and I don't have a clue what at all transpired between 9 am that morning and when she died. When I spoke to her nurse around 9, she just told me that Grace was fine, that she was being a little fussy but that she was looking at herself in her mirror. She told me that they planned for an ECHO that day (which i knew) and that she had had a lot of diarrhea overnight (that i was not aware of) I knew the nurse she had, and the nurse had taken care of her before, but she was not one of her primary nurses and she didn't take care of her very often. I knew she was competent but I also knew that she was not going to do anything extraordinary for my baby. I knew that if Grace was wanting to be held for hours, she wouldnt do it. I knew she wouldn't take the extra time to be sure Grace had a matching bow and chapstick on.. She wasn't bad, she just wasn't the type to do that. I remember texting Adam that I felt like I wanted to go there, and all day long, I had an uneasy feeling. I just felt like I should go. I remember thinking a few times that I would call my mom and see if she wanted to come with me and the boys. But then I didn't. Because of logistics with the boys and Adam and her, and gas. My daughter died alone partly because I was worried about gas costs.
A few days before Grace died, a family member told me that maybe the reason she wasnt home yet, was because of my sons. She said, that they were a lot to handle, that they were not doing well with me and Adam always being gone, and that Grace had nurses to care for her, and I needed to be spending more time with my boys. That maybe if I made our home better with my boys, Grace would come home, because being around the boys was going to be stressful and hard for her. She wasn't the only one who had said that, it was said to me in a few different ways by a few different people.Nurses, and family both.  I wonder, if everyone who said that, thinks it was better this way, because this wasn't a place for a sick baby, and I wasn't the mom who could handle it all.
Because of that, I stayed home.I did all of Graces laundry so I could bring it that night.  I filled out soccer sign ups for my kids and I put them on the counter, to go register after I had put dinner in the oven and pumped. Because my kids had eaten so much pizza, spaghetti, mac and cheese and hot dogs over the last few months, I set to make them a real dinner. I breaded chicken drumsticks in panko to bake. They had liked it before and called it "Viking chicken".. I figured that it would bake and be good reheated for when Adam got home, and I left. I thought, he could feed them, without much work and then go to the pool.. All day long, I fought the urge to call and check on Grace because I didn't want to be a bother. I didnt want to annoy her nurse or the clerks. I pushed every single concern to the side and told myself that I was being selfish for spending so much time with her and with her on my mind. I told myself that everyone was right and I needed to be home. And then I got the call.
I was so dumb, I didn't realize at first that there was any urgency. However, when I hung up the phone, I knew my daughter was either dead or was dying. I remember screaming to my boys to get their shoes on and they did. I called Adams cell and he didn't answer, I called his direct line and he didn't answer. So I called the general line and it was his boss that answered and I remember being panicked by that point. At work, he was an hour and a half away from the hospital at least. He never saw it coming.

I know every last detail of my day that day. I can't forget a second of it. And yet, I know almost nothing about my daughters day. The nurse who had her that day, never came around us. Dozens of nurses and Dr's stopped by and said goodbye to our beauty girl and cried with us. Not her. People shared with us, stories of her and made us know they loved her too. But not the last person to touch my daughter alive. Months later, we stopped into the NICU while we were there for the walk to remember. There was a nurse at the desk and she told us that the nurse was there, she said "let me go tell her youre here, she can come say hi" and she never came out. We stood and talked to others for a few minutes but she never came out. She knows everything about Graces last day alive and I know nothing. Instead of me being the last person to touch my daughter alive, it was her and does she even remember her? I dont have a clue. Was the last touch my baby felt, alive, a loving one? She died in a swing, how long had she been in there? Did she wonder, where I was? So many quesions swirling around. Someone said it has to be very hard to be the nurse caring for a baby who dies and while I would agree, I just cant help but 4 years later be hurt that we were ignored. I would love to hear about my babys last day.Would a "im so sorry, she looked beautiful this morning" have been so hard. A sympathy card even.. I would love to know that it was good. or maybe it wasn't.Maybe, her day was rough, and maybe her nurse was concerned? I have no idea. Did she truly and honestly have a great day with no issues and suddenly just die? Out of nowhwere? God, I just want to know. Some people have said that it was good I wasn't there because "can you imagine how hard that would be?" well, its killer to have no idea. To go from planning on seeing your baby in a few hours to all of a sudden she's dead with nary an explanation hurts far more than it would have to have held my daughter and told her I loved her as she flew into heaven.

I know this is a little different from anything I've shared before but its weighing heavy lately. It is simply one of those things that I need to work on getting over, I suppose, because what good does it do me?

4 years

In two weeks, my daughter will have been dead for 4 years. 4 very short and painfully long years. Does that make any sense? I can't wrap my head around it. A 4th time to try and figure out a way to make this day mean something. To make this day more bearable than it is. Is it a celebration? For Grace, yes. 4 years since she could breathe, since she didn't have to be poked and in pain and the simple act of being alive on Earth wasn't torture. I can say all day how well she was doing at the end of her life, but then, I come across a video I shared on facebook and am reminded how heavy her breathing was, how much work, simply being alive was for her. She didn't deserve that. 4 years since she ran into the arms of Jesus. Since he held His hand out and said "come with me" and she did. She did. And my heart shattered. And my husband, my sweet husband who was so tightly wrapped around that amazing girls finger, from the second the ultrasound tech said "its a girl" fell to his knees and wept. 4 years since I looked at my 7 year old firstborn and watched his entire life change, in a second, and watched his innocent beautiful heart crumble as I said "Grace has gone to be with Jesus" That day and that night, every single moment of it, is still present in my mind as if it was yesterday. But it wasn't, it was 4 years ago.

It is interesting to me how each year feels different. Make no mistake, I am not saying it is getting easier as each year passes. it is just that each year, it feels different than the previous year. Some years, I have almost forgotten it was approaching. Some years, the lead up has been excruciating but the actual day has been ok. Some years the lead up says Im going to be able to get through this just fine, and then the day breaks me.

This years lead up, falls into the category of excruciating. I can tell however that I am growing in my journey because I can identify that. The sleepless nights have come, the crying after all is quiet. The searching for some way to prove she is here. The longing for someone, anyone to remember her. Remember that she was here. This year is different because this year, I am someone I haven't been before. I am the mother of a healthy, full of life daughter. For 9 months I have had the privilege of waking up each morning to Graces little sister. To the outside world, it would seem we are the parents to 4 boys and 1 little girl. But we aren't. We are the parents to 4 little boys and 2 little girls. Annabelle didn't make me a mom to a girl, Grace did. People say "how do you like having a girl now?' and I want to say, " as much as i liked having a girl 4 years ago" or ask "how do the boys like having a sister?" and I want to say "they have had a sister since March 2011."Or some say that they are so glad that we had a girl. As if, having another girl, makes Grace being dead, easier? Having another girl, makes Grace being dead harder mostly. I was pullling into my neighborhood earlier this summer and I glanced into my rearview mirror which reflects Annabelles mirror, because of the angle, all I could see were her eyes. Her eyes that she got right from her sister. The lump in my throat formed, breathing felt difficult as I remembered how badly I couldnt wait to pull into my neighborhood with Grace but I never got to.

I have made leaps and bounds in my grief and my happiness and joy and life, I can look back over the last 4 years and I can realize that where I am now, is quite different than where I was a year ago, 2 years ago, 3 years ago and definitely 4 years ago. Am I healing? I suppose that would be the correct word that Im supposed to use, but truthfully, at times, the pain is just as bad now as it was then. At times, the painful silence of one extra voice is crippling. When I am out with my kids, at a park or the pool and I glance around to count them, there is still always one missing and sometimes, it just tears me apart at times. There have been a few instances recently where I have been in the presence of girls who are the exact same age she should be, and her absence was I am sure, noted by nobody but me (even if the people knew about her) but it was absolutely crushing to me.

Sometimes I feel as though, people are probably tired of me, mentioning her, posting about her on facebook. People may wonder why I can't hide my feelings like many others, why I can't be more private about my grief. I know a great number of people who've lost children and maybe never mention them again, maybe they only do on their birthday or angelversary. That's what works for them. For me, I can't hide it. I can't hide it because I love her, I loved her from the moment I saw the second line on the pregnancy test and I will love her until I take my last breath. And, as much as I love her, I miss her. I miss every single thing about her, and every single thing that was to come about her. I will never stop missing her and I will never stop trying to live my life in a way that makes her proud and in a way that mimics the love she showed me. I still can't believe I've gone 4 years without her but I will keep reminding myself that I am 4 years closer to seeing her again.

comparison

Something that has been on my mind and heart for a long time is comparison. It is everywhere, in every aspect of our lives it seems. One place, I am constantly seeing it, is the babyloss world. It is everywhere. Grace was not diagnosed with CDH until she was born, but the majority of the babies are diagnosed around 20 weeks gestation, leaving the family to worry and wonder and prepare that their child may die. I heard many times, "at least you didnt have that stress or worry during your pregnancy" or "at least you got to hold her for a minute at birth because you didn't know" or " you had it worse than me because at least we knew, i can't imagine being surprised" and on and on and on.
Sometimes the comparing is not malicious but too often it is. I remember sitting in the NICU waiting room with our friends, who's baby was in the NICU too and another mother whos son was in the NICU too but a different room. Our friends were talking about holding their son and the other mom asked how long they had waited, and they replied 12 days ( or something around 2 weeks) and she said " 6 weeks, yeah, 6 weeks so be happy it was only 12 days" and I remember just being blown away. I didn't even know how to respond on our friends behalf. Any day that you go without holding your child is too long. 6 day, 6 weeks or 6 hours is all too long. There is no need to "one-up" someone else.

A good friend has 5 healthy children, but had some pregnancy complications with her 4th child and he was born 3 weeks early. Most people know someone who had a baby 3 weeks early and went home at the normal time and had no problems etc. But my friends son, wasnt one of them. He was placed on a ventilator at birth where he remained for a week and he spent the first 10 days of his life in the NICU and away from his 3 older brothers. Grace spent 137 days in the hospital, and never came home. Her hospitalization was much more medically complex than my friends baby. And yet, I don't care. However, very often my friend is told by others that she doesnt understand what its like to have a child born early, or that her son was fine and that she doesnt need support for post NICU. That 10 days is not a big deal and her son was "full term" so she cant relate. I call bull. My friend still had to sit by her child and watch a machine breathe for him. She still had to attach herself to a breast pump and feel totally defeated because there was nothing coming out that she could give to her baby. She still had to walk out of the hospital without her baby and tell her big boys why. She still had to leave her baby in another womans care, and just hope that they knew what he meant to her. She still had to feel all of the same things that I had to feel and that all NICU moms have to feel. It doesn't matter that it wasn't for as long as some. 1 day, 3 days or 300 days. Its all the same.

Because I have lost a baby who was fully formed ( well, sort of...) and who lived and breathed and cried and smiled and who I held and who I loved so much and who met her brothers and her grandparents and who had a name and a personality, some people say I have it "worse" than them. People have said that they "just" had a miscarriage, thank goodness it was early... or that them losing a pregnancy wasn't as bad as what happened to me..My dear sweet friends, no you didn't get a chance to meet your baby and feel your baby grow, but that doesn't mean you dont feel the big feelings that I feel. It doesnt mean that you don't feel the profound loss of the life that was supposed to join your family. It doesnt mean that you don't wonder who that baby would have been or that you aren't scared to try again for fear of the same thing happening. It doesn't mean that you don't long for that baby daily or wish with all of your heart that it hadnt happened.

Sometimes people say things in reference to the length of time Grace lived. Ive been told "at least you got to see her eyes, at least you got to hear her cry" etc etc. and also "i can't imagine having that much time and then losing her". Not one situation is more tragic than the other. I got to see my daughters eyes and youll always wonder what your daughters eyes looked like. I got to hear her cry and youll always wonder what your daughters voice sounded like. both situations are so tragic but one doesn't trump the other.

We all go through things in life, and nobody is going to go through the same thing as someone else. And two people can go through some very similar things and yet they will both handle them completely differently. Some people may say some people have it "worse" than others. Some people will say "at least" and be trying to help and others will be trying to hurt. What I want to say is that, we have to let go of the comparing. Of the saying " all that happened to you was XXXXX and what happened to me was a dead baby, I win" No, its not a competition of hurt at all. No need to compare scars. The sooner we all stop comparing and just recognize that we all hurt differently and all handle our hurt differently and learn to just give people the grace and kindness they deserve, the sooner we all can open our hearts to compassion and love and be healers to others instead of being hurters.
My pain isn't bigger than your pain and your pain isnt bigger than my pain. Your tragedy isn't bigger than mine and mine isn't bigger than yours. Different? absolutely, but no comparison is needed.

What was lost.

Almost 4 years ago I lost my daughter. My beautiful and amazing, loved and wanted daughter. Congenital Diaphragmatic Hernia and Pulmonary Hypertension stole her from me. 4 years ago, I honestly had no idea either of those two things existed. How I wish they didn't. They stole so much from me.

Grace was the only of my 6 children to be born with anything abnormal. Grace was the only one who had CDH. Grace is the only of my children to have lost her life to CDH and PPHN. And yet, CDH has stolen from all of my children and from myself and my husband.
The day Grace was born was the day CDH began stealing. Her birthday is this month, 4 years, and it hasn't stopped yet. It honestly never will. But I pray it will one day be easier.

My 3 sons were 7,4, and 2 when Grace was born. She lived for 4 months and 13 days and CDH stole those 4 months and 13 days with my sons from me. I missed out on so so much with them during that time. I will never forget how much I missed them, aching to be with them and yet, unable to be able to leave her side. When I would leave her, I ached to be with her. There was no satisfaction. Either I missed them terribly or I missed her terribly, no matter who I chose, I yearned for the one I wasn't with. My sons lost 4.5 months of their mom, and of their dad. They went from having two parents always around, babysitters were rare and mom was always home with them during the day to always having a baby sitter and never seeing mom and dad at the same time. Life became so different.
Of course once Grace died, dad went back to work and mom just wasn't the same. The mom who used to play, who used to bake and let them help, who used to laugh and take them on adventures and playdates became the mom who just sat and cried or yelled. The mom who was drowning in grief but didn't want anyone to know that she wasn't ok so she pretended that she was.

Suddenly we are 4 years out, and the 7 year old who used to snuggle up next to me is now turning 11 this week and I don't know where he came from. The 4 year old is 8 and the 2 year old is 6 and can read.. Sometimes they will mention something from the last 4 years and I dont remember what they are talking about, it is all just such a fog and that makes me so so sad. my oldest sons childhood is more than half over and I can't recall so much of the last 4 years of it, when he transitioned from a little boy to a pre teen. CDH stole his sister. His sister that he prayed for every single night. The night she died and I had to tell him, I watched him shatter. I told my son that his sister went to heaven and he's never been the same. His innocence forever gone.

I had hoped the other two would be too young. Too young for what? To feel the loss? It turns out they felt it just as proufoundly as the one who understood immediately. 4 year later and we are just realizing the effects of this tragedy and realizing that time doesnt heal all wounds, that sometimes the pain is still so present but so well hidden and you have to actually DO something to work through it. Children aren't just resilient and can't just bounce back all the time. My heart is absolutely broken watching one of my children struggle as much as he is right now. A struggle that stems from three simple letters and all of the damage that they have done to my world. To hear an 8 year old tell someone through tears " I just want her back" about his baby sister is absolutely heart wrenching. I'd give anything to take his hurt.

We didn't just fight through 4.5 months and then plan and attend our daughters funeral and then go back to life as normal except for being sad here and there. What happened to us had a sort of ripple effect. Like a stone thrown into the water, it happened and then it just continued to spread and affect our lives further and further out, until hopefully the waters become calm again.
I won't give up, I will fight for that calm. I will fight and move forward until finally my family is no longer just staying afloat, searching for the calm. I will fight because Grace fought, she never gave up because things were just too hard and just to tiring for her. She didn't stop just because she couldn't find the hope to carry through. I won't stop either. My sons deserve total and complete happiness.

The other shoe...

There is something that so many moms (or dads) that have lost a child have in common and that is that we all are waiting for the other shoe to drop. Once we've lost our babies we constantly are just scared that something else as awful will happen. Usually (at least for me) it is that something terrible is going to happen to one of my other children. Either the ones who are older than Grace or the ones who have come after her. We know we are not immune now, bad things happen to good people and the loss of a child does not guarantee that nothing else bad will happen. Many of my CDH angel moms fear being diagnosed with CDH in a subsequent pregnancy.  For most of us though, nothing horribly terribly bad does happen. Most of us still go through unpleasant things and things we'd really rather not but a great many of us baby loss moms aren't faced with something as huge as we were faced with with our babies.

But some baby loss families don't get that privilege of never again feeling such heartache. Some families who have been through so much, so much more than so many of us can imagine are asked to walk again, a path that they don't want to, that we can't even imagine.

I am asking everyone reading this to please, pray for a beautiful 2.5 year old boy named Dylan. Adam and I met Dylan's parents in the NICU, their daughter was across the room from Grace and she was such a fighter for 6 months but she waits in heaven for her parents too. A year later, we had Caleb and they had Dylan and his twin sister. This is one of the best families we know.
Dylan was diagnosed right before Christmas with a very rare type of cancer. Once again they are fighting alongside one of their children. He has already been through surgery and has begun chemotherapy, but this is going to a long and hard road for them. It absolutely breaks my heart that they are going through this and I am praying daily for them to have strength and for Dylan to overcome this, for the Lord to heal Dylan. Please will you all pray and continue to pray for this family as well?

The year is coming to an end. Another year gone by without our Gracie Girl. Another year of healing, and yet another year of indescribable pain. Another year of struggles and another year of triumphs.

She would be turning 4 in 3 short months. That just seems impossible. 

I want to blog more in the coming year, maybe it would be helpful. I have many drafts that I never publish because I think "who cares" or figure either nobody is reading anyway or if they are, they are tired of the same old story. But, maybe that's not true. And maybe it is, but maybe it would be helpful to me. 

"If I get it all down on paper, it's no longer inside of me,
Threatening the life it belongs to
And I feel like I'm naked in front of the crowd
Cause these words are my diary, screaming out loud
And I know that you'll use them, however you want to"  (anna Nalick:Breathe)

That's what it feels like, like I need to write here, to get it out. Maybe if I come here and write more, it won't be stuck inside of me, slowly eating away and bottling up until it comes out in ways that are unhealthy to me, to my family. Finding the time is difficult though. Priorities. I've been giving it a lot of thought. Perhaps allowing myself to get it out, here, is more important than making sure I get one more load of laundry in, or making sure the toys are picked up. I think I forget that I do need to be spending time working on my mental health and grief more than I do. It does need to be a priority and its usually what I push aside most often and it's just not healthy anymore. 

I hate the way grief is. I hate how I don't even see it coming. I hate how it is ever changing. How the triggers change so that I can't always know that something is going to affect me. I hate that I cannot control it. I hate how it affects my children. My sons, do not deserve any of this, they are just children. Thier innocence stolen so young. 

We've come a long way in the almost 4 years since she was born and the 3.5 since she died but we still have such a long way to go.  I don't think anyone at all has any idea how much we still struggle and most of the time, I don't think we even realize it and certainly don't advertise it.

It's time and I'm ready. I want happiness. Of course we've had happiness, a LOT of happiness in the years since Grace was born and we lost her but there's always sadness. There's always SO much sadness. I'm ready and I want to live a life, not just myself but our whole family, that makes my daughter proud. For 4 years it has been, "yes we are blessed, we have 3 amazing sons, BUT our daughter is fighting for her life" or "yes, we are blessed, we have 4 sons who we love so much BUT, our amazing girl is dead" or "yes, life is good, we are raising 5 healthy and striving kids BUT it wasn't supposed to be this way, there should be 6". I want to stop with the BUT. It doesn't mean I want to forget or leave her behind but what it means is that I feel like our grief is destroying our family and I want to make it stop. We are allowing it to become us. We've shied away from friendships because it's just easier to not let anyone in than to share our story. We've missed opportunities because we were too consumed by our sorrows. Relationships worn thin. Our grief projected onto others. This year I want to change and I want simply to be better. This is our story, this is our life and I'm ready to really live it.