Thursday, November 3, 2016

Part 2


Part 1


http://gracescdhjourney.blogspot.com/2016/11/from-beginning-part-1.html


Part 2

Holidays came and went and all was going well. But I just had an awful feeling the entire time I was pregnant with her. I couldn't put my finger on it and I never told my OB or midwives. A choice I regret. I figured I was just being a worry wort. I figured it was just my anxiety and I told myself that every visit, shes gotten bigger and her heartbeat was great, she didn't move a ton but she moved enough and I needed to stop worrying. Maybe if I had told someone, this story would be different. But maybe not. I wish I could accept that I don't have the power to change the course of her story, but its such a hard thing when in hindsight, you see exactly where things all went wrong, time and time again.

March came and it was baby time! She was due March 27, 2011. March 26 came with me being SO tired. Iain was 4 and he kept wanting me to get up, and I just wanted to sleep in, it was a Saturday and daddy was home, I kept telling him to let me sleep and go find daddy. I wish I'd just gotten up and snuggled him and hadn't been so crabby. It was the last normal day of his life.
All day I felt off and had some very minor cramps but they were accompanied by a need to use the restroom so I brushed it all off. It certainly was NOT the way labor had went the other 3 times. We put the boys to bed around 7:30/8 and I just rested. I was texting with my friend about maybe being in labor. I started timing my cramps which I wasn't sure were just cramps. They would look like they were getting into a pattern but then stop and have a large break with nothing. So I thought I was crazy. Adam called his mom around 9:30 amd asked if she would come just in case and she came around 10. Around 11 pm he came upstairs and told me I was in labor and to call my midwife. I told him no because I dont have babies at night and just needed to go to sleep. The boys all were born during the day with labor starting during the day so I was certain she would be the same. He insisted and I insisted I wasn't calling because I wasn't in labor and didn't want to bother anyone at night. He said "call them before I do, Im not delivering this baby in the bathroom"

I called and my favorite midwife was on call ( they all are amazing but I always felt a connection to Kim) and  told me to come in because she was there at the hospital anyway. Thank goodness. I went to the basement and unloaded the dryer and folded the clothes.. It was the last load and I didn't want it to sit in the dryer. ( I had worked really hard for weeks to get an amazing laundry routine down haha) Then we left. As we were driving, I started getting really strong contractions and I realized I really WAS in labor, thank goodness my husband had some sense. He sped along and I had to roll the window down because I was hot and nauseous. We got to the hospital and because it was around 11:40 pm we had to check into the ER. We had to wait, I was so aggravated because the lady was taking her time, even after I told her I was in labor. I could tell I was close. They made me ride in a wheelchair and I was very aggravated about that, I wanted to walk. We got back and they put me in triage where Kim (my amazing midwife) checked me and laughed saying "youre an 8, ready to have this baby soon?'. We started to walk to my room and I had to stop because I had a huge contraction.. Good thing the ER didn't let me walk.

We got into the room and within minutes I needed to push. I remember thinking it hurt SO badly, moreso than any of the babies before. I couldn't do it. Kim said "look you ARE doing it" and I looked down and saw my beautiful girls face and it gave me the strength I needed.At 12:07 am March 27,2011 I delivered my very first baby daughter.  Kim handed her to me, and her eyes were open, she looked right at me, right in my eyes and I panicked. I knew she was not ok, in that instant I knew my intuition had been right.Her mouth was wide open but there was absolute silence. Adam cut the cord and she made the most heartwrenching gurgle. A choking, drowning gurgle.  My nurse Ericka quickly grabbed her and within seconds the room was full of people. I heard her say she heard heart tones on the right and bowel sounds in her chest and I thought "all of that is impossible" quickly the room was emptied and I was left alone. I didn't know what was going on but I never imagined it was as bad as it was. I really thought at first that they would bring her right back to me and say "shes fine!" That obviously didn't happen.

I should mention, the hospital where she was delivered doesn't "do" sick babies, nobody under 37 weeks or with complications.After awhile Adam came back and said she was doing ok. He said that they said she would need surgery but he gave me very little details. I remembered being told that my oldest brother had had surgery as a baby and it had no negative effect so I wasn't super worried. It is interesting to me the way we actually deal with things when they happen to us, rather than the way we always would think we would. I would have assumed I would have been frantic, but I think I truly went into shock and became numb for those hours. It was a very surreal night and my breakdowns all came later. I remember he told me I should call his sister to come sit with me so I wasn't alone and I did. She came out at 3 am to sit with me.
 They had to call a neonatologist from a nearby hospital that does have a NICU and she came and talked to me. I remember she just looked grave, she looked tired and disheveled and I immediately questioned her credentials. It was all part of my ability to compartmentalize.

I couldn't even tell you her name, but if I were to see her again, I would recognize her in a heartbeat.
She started off by telling me that they had put a tube down her throat blah blah blah. That is what I heard for most of it, you know the Charlie Brown adults, that is what I heard. I just couldn't understand her words, for some reason. Until she said this which I remember clear as day. "with babies like her, we need to get her to the best place possible with the right equipment to care for her. Toledo does not have those capabilities, and the best place for her is Mott at University of Michigan. If we do NOT get her there, she WILL die" she didn't say, she *could* die, she said WILL. Then it was like a ton of bricks. I was being told that my brand new, just born, very very wanted and loved baby was going to die.

She was then tentatively diagnosed with Congenital Diaphragmatic Hernia. (CDH) CDH occurs in 1 in 1600 pregnancies in the U.S each year, 1/2,500 worldwide. During weeks 7-10 of pregnancy the diaphragam forms. In CDH, the diaphragm either does not form at all, or fails to form completely, leaving a hole. This can vary greatly by case. There is not yet a known cause for CDH, nor is there a way to prevent it or "cure" it. The organs that are typically housed in the abdomen, and kept down there because of the diaphragm are then able to migrate up into the chest cavity through the hole or lack of diaphragm. Again it varies which ones. Sometimes its just a small loop of  bowel, sometimes it is all. Intestines, stomach, liver, kidney, spleen. Surgically all of those can be put back down into the abdomen and the hole closed. The reason it is so severe however, is that because of the organs being up there, they crowd the space that the lungs need to develop. Lungs develop last and if there is no space for them, then they just don't grow. If they do grow, they are not developed correctly because of the crowding of the other organs. CDH babies have lungs smaller and sicker than preemie babies. I will get into Grace's specifics later but she was 7#4 oz which is an average size for a full term baby and her left lung was the size of a penny. At first they didn't know if she even had one.

And yet, I still thought she would go to U of M, have a surgery and be FINE.I knew U of M was amazing, they saved my cousins life when she had cancer with a slew of complications, and of course I was following along with Bowen Hammitts story and they saved him. They would save my baby girl and we'd be fine.
Adam said "it will be ok, we will be ok, this is just one of our trials and we will get through it" but that bad feeling was back again for me.

Later I would find out that my nurse suspected CDH right away, and they were able to get help quickly. She told me that a few years prior shed had a similar delivery and she knew when she saw Grace that it was the same thing. Because of her quick thinking and skill, we had time with our baby. I've always felt it was one of those "God things" that I didn't just "happen" to end up with her as a nurse (and later as a friend) but that she was "supposed" to be there.
In the CDH community, we often say and think that our babies who were lost, "watch out" for those who are here still. And medically, each baby lends something to the people caring for these babies, teaches them things that may help another baby. I always felt badly that another family before us had such a similar start but that baby blessed my family with his life and experience.

I couldn't even remember what the dr had said she had, so I asked and then I googled it. On my tiny phone. That I had forgotten the charger for, and that was rapidly running out of battery. The first thing that came up was that 50% of babies diagnosed with CDH die. I thought, "must be something else, because she will be totally fine as long as she has a surgery" and then I stopped reading. I think I just didn't want to believe anything.

Before too long the transport team brought her to me, she was going to be taken to Toledo Hospital by ambulance, and then when she was able, she would be flown to U of M. I still really wasn't grasping the severity of the situation. I truly believed she would be fine, which is amazing that we are able to put those coping mechanisms into place, rather than just break down and become a mess.
Adam went off with her, and I stayed. I waited for updates and remember he was texting that they were trying to get her CO2 levels under control and I wasn't really sure what exactly that meant or anything but figured she was fine. When you don't have experience with things, and aren't there to see, it is kind of hard to really grasp things I think.




Tuesday, November 1, 2016

From the beginning Part 1.

In the past I've participated in different things like Octobers "capture your grief" or Novembers "30 days of thanks" and have just blogged when I felt the need or desire to. None of it has ever given me so much of what I was looking for though.. Back in January I had the opportunity to tell some parts of Grace's story out loud. It proved to be much more emotional than I had imagined and I realized that in 5 years, I hadnt spoken much of her story out loud at all. Once she died, either most people already knew what had happened or didn't really much care to hear much after "our daughter died" and Im never really sure how many details people want or can handle. .. I realized so much of her story just stays in MY heart. Sometimes people say theyd like to hear it, but then there isn't time or opportunity. Other times I am sure people are curious but do not want to be rude, or whatever. I have decided that I want to write it all out. For anyone who is interested but also for me.


People often ask "did you always want a lot of kids? Did you plan on having a big family?" and for Adam the answer would be absolutely not, and for me its more open. Ive never really known how many kids I wanted and always sort of figured it wasn't my decision. But that being said, we were pretty sure our 3 boys were going to be "it". We were transitioning out of the Navy and things were going to be VERY different and we were pretty happy with our 3 boys who were getting older. We didn't have a job or house or anything lined up for when he got out of the Navy, but were working on it, its a whole process because youre basically just starting a totally new life. Not the time to have a baby honestly.

So of course a week before we were supposed to have the movers come and pack out the house, I felt a little funny. Adam had went out with a good friend for a farewell dinner and I went to Target, came home and took a pregnancy test. I still remember that one of the boys needed me so I left it on the tub and went and helped them and momentarily forgot about the test. I eventually went back and checked it out and the line was SO faint ( I was 6 days before my period was due) and I swore my eyes were playing tricks on me so I called my neighbor and had her meet me on the hill between our houses and she confirmed I wasn't crazy but that I was pregnant. What a total wrench in our plans but I was so happy!


We moved and things were a bit rough with trying to get all of our ducks in a row, and my being pregnant did complicate things but we were SO excited for this baby. I knew in my heart we were having a girl but I also had so many ominous feelings. I just felt like something was wrong, at first I was certain I was going to miscarry and then that something was wrong. I was SO sick. I had never felt so bad during pregnancy before.

We had an ultrasound at 8 weeks 5 days and I was so scared that there would be no baby. This baby was so unexpected and the timing was awful. Our lives had never been so unstable. I remember my cousin telling me "hopefully this new baby brings you the grace you need in this time"
We had the ultrasound and we both cried watching this new unexpected life wiggle around on the screen. So beautiful and so full of hope and grace.. We were going to be ok. The office we were at had very good machines, the tech was very skilled at what she did. She was just chattting and mentioned that she had not been able to locate the entire diaphragm but that it was not a problem. I asked "its ok? not a big deal?' and she assured me that it was fine because she said I was still in the weeks when it is developing, she said "it develops until 11 weeks, youre fine and it will develop!' I said OK sounds good to me because she wasn't worried at all and how importatant is a diaphragm anyway? I promptly forgot about that conversation with her until many months later.

The pregnancy went along as normal. Adam did find a job, and it was going well until one day he still wasnt home after an hour past when he was supposed to be. I worry, when someone is late I worry immensely. I texted a few times with no response and then called his cell and it went straight to voicemail. Panic. Called his work but it was closed by then. He called a few minutes later. He was in a car accident. He had been rear ended by a semi truck on the turnpike. His car flippped numerous times and he ended up upside down in a ditch. He was driving a small nissan sentra and had been hit by an 18 wheeler...
He had no injuries other than a broken thumb and a shoulder injury. He did not have anything that was to be expected out of that sort of accident and he was alive. The trooper told me that he shouldn't be alive and should be in very bad shape, that someone knew he was needed here. We had no idea how much so.

We went for our ultrasound at 19w 5 days. The provider I saw at this point was different than the provider I had seen at 8 weeks. This new provider had you go to an ultrasound imaging office for your ultrasounds, who would then send a report to the dr/midwives. They had one Saturday a month that they offered and I was so excited they had an opening because that meant Adam could go! We took our 3 boys and the tech was not talkative or friendly and we were the last appt for her day. She was pretty quickly able to tell us we were having a GIRL. We were so happy. She didn't point a lot out but at one point she had me turn onto my side, lift my hips, she shook my belly..she said she was having trouble vewing all chambers of the heart.BUt then she said "oh there they all are and she showed me. then we were finished. I had never had to do so much moving and I just had a bad feeling. I asked "is our baby ok?" and she said "I can't tell you anything, your dr will talk to you about that". I felt uneasy. But then at my next appt they said the report said everything was great. So we continued on with a normal course of pregnancy. We bought a house and we started preparing for her arrival and we started to feel as though despite a rocky beginning, this civilian life was starting to settle down and wasn't so bad....

Wednesday, June 8, 2016

Remembering

My memory has always been interesting to me. I was joking one day that I am like the Keeper of  the memories in "The Giver" I feel the memories, the emotions of my memories are always there. It is very difficult for me to remember a painful memory without actually feeling the emotions that I felt at the time. Its both a blessing and a curse I suppose. I am constantly told that I am too sensitive. That I let too much affect me. That I take everything too personally. I don't know if any of that is really true, all I know is that I can't help any of it. I feel the way I feel and I can't change it.
So with memories comes remembering dates. Knowing June 8 was coming has been gnawing at me for awhile, every single year it does. I would venture to guess that not one other person knew the significance of today. And I guess that is ok. But I have to get it out, maybe it will feel less heavy.

5 years ago on June 8, 2011 it was extubation day. After 9 incredibly long and difficult weeks Grace was breathing on her own, with the assistance of some oxygen via nasal cannula. She rocked it. It was an entirely different ballgame then. She spent the first 18 days of her life on a heart and lung bypass machine, mostly always paralyzed by medication so that her body could not try to do any work at all and finally after 9 whole weeks with a tube down her throat and tape all over her face she was free of it all. It was amazing.

I remember it all. Adam and I both went to the hospital together, and our friend Sandra came to visit and meet Grace. It was the first time we had gotten to see her since we moved from WA in 2007. Amy was her nurse that day, which made us so happy since she was her primary. It was going to be a very hot day so we had filled up the pool for the kids before we left, my mom was babysitting.
They extubated her in the afternoon and they warned us that sometimes it really doesn't last and they have to put them back on the vent. For me it was very intense. It was scary. She did awesome. Her blood gasses were perfect and she was happy and calm. We stayed for awhile and then ran out to grab some food. I remember that I felt better than I had felt in a long time. With the removal of that tube, a weight was lifted.

She was extubated and handled it amazingly and for the first time since she was born I believed she was staying. With that simple procedure, I let myself believe she was coming home with me one day. She rocked it and never needed reintubation except for when she had surgery to place her shunt and she was extubated pretty quickly.

I wholeheartedly believed 5 years ago that she was coming home and I got to keep her. I had no idea how wrong I was. I had no idea how many more obstacles and heartbreaks her life held and I was so naive to think she was going to be ok. My heart has been hurting so badly. How did she make it so long, when nobody thought she would but then she didn't get to stay? I miss her so much, I wish I knew what she would be like now.

That is how grief works, things that just sit beneath the surface and then come to a head and have to be dealt with. I love that I can remember her, and one of my fears is forgetting. But the memories hurt sometimes. It is just so bittersweet.

It was a day filled with so much hope. And I know that there is still so much hope. No not hope that shes going to be ok and come home, but hope that we have a place waiting for us with her. Hope that this life can still be beautiful even through all of this immense pain. Pain that hasn't subsided after all of these years, but rather that we have just gotten so much better at carrying with us.

oh pretty baby, I could look at you all day. First picture without tubes and tape.


Sunday, August 2, 2015

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?

Tuesday, July 28, 2015

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.

Tuesday, June 30, 2015

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.

Monday, March 2, 2015

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.