Happy birthday

 Today my oldest child turns 20 years old. This just happens to be the age that I was when he was born...

When I turned 20 I had already been married for 4 months and I would be a mother before I reached my half birthday. All that I wanted when I was 20 was to be a good mom. I wanted everyone to believe I was a good mom. Now all that I want for my son's 20th birthday is for him to know how deeply loved and important he is. For him to know that his very existence means so much more to so many people than he will ever understand. I just want him to know that I have been grateful for his presence from the day I learned that he was coming. I want him to know that I have always been and always will be immensely proud of him and in his corner.

My son has been a part of me, for half of my life now. Soon, I will have lived more life with him than I have without him. I can hardly remember a life where he was wasn't included and I hope I never have to know a life without him.

I used to get so upset when he was a baby and people thought I was his babysitter or his older sister.

I am his mom I would say and they would be shocked. Looking back I can understand why. I really was just a child myself. Not nearly as grown as I touted myself to be. He grew up with a mother who had not quite grown up herself. That I believe, has been both a blessing and a detriment.

I look back over the last 20'years of parenting and all of my mistakes and sins and downright failures stare my right in the face. I remember it all. The pain that I've caused my child(ren) due to my unhealed pain, the trauma that I've bled onto them, it's an incredibly jagged pill to swallow. But, God is so good isn't He? He loves me (and my kiddos) so much that He heals all of my broken places, binds up all of my wounds and reminds me that he loves me so much more than I'll ever be able to comprehend, infinitely more than I'll ever be able to communicate. He has taught me how to love. I am able to love my children because I am so very loved by God.

When you become a parent, whether it is for the first time or the 10th time, you imagine what this child will become, you have hopes and dreams and whether you realize it or not, you place expectations for what their lives will be... I have learned that no matter what, our kids will always far exceed all of our expectations. They will bring infinitely more to our lives than we ever imagined.

We think we will teach our children about life, but, our children will teach us far more about life than we could ever hope to teach them, if we are just willing to listen, to be open to it.

We have had years of hard, where nothing at all seems to be going right. Where the dark days far outnumber the light. Where every single time we feel like we might survive, we are sucked back down.

It has been a very heartbreaking journey if I am honest but I want him to know these things.

I am immensely proud of the person he is. What he has done or has not done, actually doesn't mean anything to me. He has a heart of gold.

That's what they never teach you about having kids. That all you'll care about is if they are kind, if they love well, if they see a person who needs help and they help. I am certainly proud of his brains, I am certainly excited when he accomplishes something but what I am most proud of is who he is.

He has taught me what it means to persevere. To continue to put one foot in front of the other and never give up. To decide that you are going to be who you are, and not worry at all what someone else will think or say. What a strength to have.

He has taught me to be brave. To ask for help when it is hard. To never be afraid to save your own life. He has taught me that you can find your way back from anything and from anywhere.

He has taught me the very meaning of grace.

My life is better because he is in it. And while there have been many roadblocks for him and things haven't quite gone as maybe he would have planned I hope that he knows that he's so loved and so valued he is so important and God has such an amazing plan for his life and I am so glad that I get to be a part of it. I am so glad that I get to watch him grow and get to watch him learn and I get to watch him be an amazing man. I get to see him be kind and caring and loving I get to see him make a difference even when he thinks he doesn't

It has been a complete honor to grow up with you Tyler Jacob Hall.

I hope that you never stop believing that great things are in the works for you and that you are worthy all the good things this life has to offer I hope that you know that life it is hard but oh it is so worth it and God and your mom and dad will always be there for you. 

Happy 20th birthday.

The Beautification of Grief

Grief makes people uncomfortable. 

Despite the fact that its inevitable. If you are a living human being, you will experience grief at some point in your lifetime. 

Grief that involves the loss of a child makes people especially uncomfortable. 

Thankfully, not every person will experience the loss of a child though. 

Because of our desire to not be uncomfortable, we try to make grief into something that it isn't. 

What do I mean by that? 

We beautify grief. 

We do this in the way that we speak with and treat the grieving. We do this with the cards we send and the ways we choose to show up. 

While I do think most people are well meaning, its hurtful and harmful even. 

"She's in a better place"

"God must have needed her" 

"You are SO strong"

"You are handling this SO well"

"I am so proud of how well you are doing"

"You are just amazing"

"You are going to bring so much good out of this"

" Let this be what brings you closer together instead of apart"

"You will see her again someday, focus on how beautiful that will be" 

"Your strength is inspiring"

and so many more. 

Maybe you're thinking "these are compliments and truths, what is wrong with any of this?" 

The problem is this. 

When we fail to acknowledge to the grieving parents how seriously awful what happened to their child was, we fail to create safety and space for grieving. 

We do this because we do not want to face the discomfort of the situation.

It is so much easier to try to change the perspective of the situation, or try to band aid it than to recognize the absolute awful thing that happened. 

Grief is not beautiful. 

It's just not. 

Sure, sometimes there are great things that a grieving person does, in ways like giving back and "making a difference" but the actual grief, is still ugly. 

When we always try to put a positive spin on the reality of someone who is grieving we rob them the ability to be authentic and we even make it harder on them. Because when the realities of grief show up, they feel that they must be wrong, or they feel like they have failed at grieving properly, or they try SO hard to be the strong that everyone sees that they end up holding all of that grief in, which then maifests in all kinds of unhealthy are harmful ways, and only delays actual grief work.

Grief is ugly. 

It demands to be felt. 

It can look like rage, it can look like throwing dishes into a sink to break them, throwing dishes across the room. 

It can look like walls broken in, kicked in, punched in,

It can look like being unable to rise from the floor, unable to catch your breath, being worried you might actually be suffocating from this pain. 

It can look like anger, being short or rude to people in your interactions. 

It can look like laziness, the inability to keep your home clean, your job done well or correctly. 

It can look like forgetfullness, childrens projects left undone, forms not signed and sent into school. 

Grief can make a home a battlefield.

Instead of trying to make grief beautiful to keep ourselves comfortable, lets show up for the grievers with the truth. 

"This is absolutely terrible"

"You did not have enough time with your baby"

"My heart is absolutely broken for you, I just cannot believe this" 

How does a person survive this"

"This makes absolutely no sense"

"I am so angry with you"

"babies should not die"

Grieving mothers need so much more than words that put pressure on them to be a good griever, they do not need another expectation placed on them. They need tangible help and people showing up in a safe way. They need to know that when their grief is demanding to be felt, when it can not be folded up and wrapped up in a pretty package with a bow, that is OK! Not only is it ok, it is NORMAL. 

Grieving is ugly, it is hard, it is work. 

Let us honor those in grief by recognizing that. 

Paradox

Trauma. It is a very complex thing. The love I have for my daughter is not traumatic, it is deep and real, and beautiful. And yet, so incredibly wrapped up in trauma. 

I have always been pretty good at remembering dates, seasons, etc. I can recall exact days from 20 years ago easily, so it has never been a surprise to me that I can remember exact dates of events with Grace but what did surprise me from early on was the way that I was affected by things. 

For instance, I began to realize that I struggle a LOT just before her birthday in March. and I also begin to struggle again mid July and into August. I also struggle around Christmas time. This isn't something that just stopped after a few years but has persisted into today, 11 years later. A few years ago during a session with my therapist, I was frustrated with myself for the ways I still struggle, I felt like I was failing everyone because I simply drop so many balls and my emotions become so difficult for me to manage at certain times, and she kindly reminded me that I have complex trauma. She said it makes complete sense to her. Our bodies recognize small things that maybe our brain can't even process as a trigger but it is, my body knows that its coming up to August, and that is when my sweet girl died, I do not even need to tell it that, my body has already remembered with the temperatures and the cicadas, and the ice cream and the pools... 

With her help, I have been able to be much less activated all of the time but of course my brain will always remember the dates and the significances and the events. I have a lot more work to do, but I do not stay in the deeply hard places nearly as long as I used to. I was stuck for so long, and while I am no longer stuck, I will always remember and that is ok. 

Eleven years ago around this very time I walked out of Mott for the very last time, the person I used to be. I did not yet hold the label of "grieving mother" a name that I will hold for the rest of my life. I will never not grieve, every second of my life. I had absolutely no idea that the trajectory of my life was so very close to changing forever. 

The hospital was being redone, while it was months away from completion, a new path to the parking garage had just been opened. It was shorter than the route had been for the last 4 months. I walked it around midnight, thinking how incredibly tired I was, how I couldn't wait to have my girl home. But I also was grateful, I knew how lucky I was that she was alive because there had been a lot of losses in the NICU over the last few weeks. And yet, at the same time I just felt down. I wanted to stay longer but I knew that Adam was home with the boys and needed to work the next day, so I needed to go home. 

I passed one of her Drs on the way out, we stopped to chat about how great she looked, how he couldnt believe she was still here and asked if she would be going home soon. I said I hoped so. I never in a million years imagined I would never see her alive again after that day. 

Looking back I simply cannot believe that I missed out on my daughters last two days alive because of money. Driving an hour each way to the hospital was expensive and Adam drove an hour each way the opposite direction to work each day. Our bank account was quickly dwindling and we knew that when she came home, we would have a lot of expenses and appointments etc. We had made the decision that we would stagger being with her, so on the 8th he left work and spent the evening with her and then on the 9th it was "my day". I was waiting for him to get off of work so that I could go see her but she passed before that happened. 

The next time I walked out of that hospital, it was with a cart full of my daughters things, and a shattered heart. 

It has taken a great many years, but I can see the goodness of God throughout this, and I am so grateful for His provision and healing. I am grateful that I can sit here tonight and remember this and honor this but I am not undone. I am grateful that both Adam and I had one last day with her. But there is also much regret for those who did not get the time with her. For the pictures that were never taken and the arms that never held her warm body. We never thought this turn would be taken, we didn't see this coming. 

Tonight, as I sit here, I am ok but I can remember so clearly, the weight of her on my chest, the way her mouth opened as she slept, the way she always slept with her face turned up towards mine, and her hand that would grip my hoodie strings and I wish I'd known just how fleeting those moments were, I grieve tonight, knowing I would have never gently laid her in her crib and walked away, had I known it was going to be the last time. 

My mind, and my body can not forget, but my heart swells with one beat at how sweet those memories are, and it shatters with the next, at how much they still hurt. 

Moving on.....

When I was about 20 weeks pregnant with Grace, we put an offer in on a house and later that week we found out we were having a girl. A healthy girl and new house. We honestly felt as though we'd won the lottery. Our house wasn't huge or fancy and it was older than we'd hoped for but we were ecstatic. It was great school district in a nice and quiet neighborhood, we moved in the week of Christmas 2010. We prepared a nursery for our first baby girl here and 3 months later I labored between these walls and left to birth that baby, fully expecting her to accompany me back here, 2 days later. I wouldn't return to this house for 6 days and I'll never again be the woman who walked out of these doors that cold and dark March night in 2011... But I also will never be the woman who walked back into these doors that cold March afternoon days later, with no baby in a carseat... I'll be forever changed from both and I am both saddened and grateful for that.

Over the following 7 years, these walls have watched us fall, and they've fallen with us.  They born witness to us walking back in, for the final time, with all hope of walking through those doors with the infant who was supposed to fill that lavender room, gone, totally diminished. They've watched us walk through with the ashen remains of that beautiful souls body instead. They've watched us fall completely apart as my womb bled out the promise of new life time and time again. They've watched a marriage fight to survive, daggers in the form of words spit firely out with no regard to the damage they were causing in those moments. They've watched the spirits of children be torn and damaged and broken.
The foundation of this house, and the roof of this house, have literally broken away and have had to be torn off, broken down and repaired.the two things that are integral to a home standing and being safe, betrayed us in this house. This house has witnessed pain in a way that I couldn't even try to describe for someone who had not lived in this house for the last 7 years.

But this house? Oh the redemption and beauty, and the grace that this home has seen. The rebuilding of lives that felt as though they'd never survive the trials set before them. This home has watched it's walls be filled with healthy, happy and loving new life, more than one time! This home, it has seen a marriage that has been given trial after trial, flourish and grow and beat each and every odd set before it. This home has seen healing. Redemption in every single form. This home has seen children loved and cherished and has seen forgiveness asked for and given.
When we had our foundation repaired, we carved Grace into the wet cement. It isn't visible to anyone who doesn't know it is there, but I could find it with my eyes closed. We prayed with our kids and spoke to them about how she would be in this house with us always, never physically but in spirit and we spoke of how we wanted the foundation of our lives to be about grace.

For a very long time, I didn't think I would ever be able to move from this house. If I've not made it clear, I'm not a "change" person and I don't typically make life changing choices, life usually just makes them for me. But, as our family grew, we started feeling the need for our home to grow. What we thought would fit our needs with small kids, was proving to not fit the needs of a large 5 kid family with teens and tweens. I also started understanding that this home, was much like grief.
For a long time, I didn't want to heal from grief, I wanted to wallow in it, I wanted to not forget it, I wanted to stay there because it felt like if I moved forward, I would be leaving her behind. So, the realization came, that perhaps the fresh start of a new home, that wouldn't hold the same amazing stories of redemption, but also wouldn't hold the painful reminders of a life broken, might be a good thing.
And so, last week we closed on a new, much larger, much better suited for our needs home. A home that we are looking forward to making new memories in, a home where we can honor our story of what we've lived through but where those stories don't make the home. A home that will absolutely still be a home of grace.
And today, in just a few hours, this home that helped to build us, will officially become somebody elses. What a bittersweet moment for me. I am extremely excited and ready for the things to come, but this home.. it will forever hold a place in my heart, it will always be an important part of my story and of my healing. It is, however, simply time for us to move on.

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.

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....

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.

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. 

Happy Birthday Beauty Girl

It's Grace's birthday. 3 years old. How quickly and how slowly time has passed. Birthdays are so special. The start of your life. A profound day, even if one doesn't feel it is. A celebration.
But how do you celebrate a birthday of someone who is now dead? Someone who, never got to celebrate their own birthday? Not even once? It's hard. Like everything that goes with having lost a child, it is a struggle. To be honest, each year I just want to stay in bed and cry. In so many many ways, it was not Grace's death that the grieving began, it was her birth. The losses started immediately. "This was not how it was supposed to be" a phrase that echoed repeatedly in my mind.
It is so hard to know what we should have today, how we thought it would be. To picture in our minds, what kind of party she would have? 3 is so fun. How much would she giggle over her gifts as she opened them? It's almost impossible for her death to not be on our minds on her birthday as well.

But, this is how it was supposed to be. Her BIRTHDAY is to be celebrated.3 years ago today, a miracle occurred. Her name is Grace Fenella Hall. 12:07 am, she came rushing into this world. Changing lives immediately. Of course our little drama queen was born just after midnight, on a sunday, barely minutes after we were admitted, nothing prepared for delivery, in a hospital without a NICU and with a very serious unkown birth defect. I think about her delivery often, how really it was all "wrong." But it was the way it was meant to be, even if it makes no sense. I still remember the stories in the following days, of family members telling people about her, but those people already had heard about her, having heard about her from someone else.

It is hard to accept that we only had 4.5 months with her, but the reality is, we were so blessed to have that much time. Every odd was stacked against her and she was truly the most amazing baby. She survived so much. She fought so hard. I've never seen such bravery.

I will never forget the surgeon who told me, only days before she died that he believed in medicine because he was a Dr but that Grace wasn't alive still because of medicine. He said she was truly a miracle and that there was something else about her. At her funeral a nurse told me that in all her years, she had seen so many babies and so many fight through so much but that she had never seen a baby fight and survive the way Grace did. So many times before Aug 9, Grace should have died and she didn't. Daily, miracles occurred. We get hung up on the feeling that we didn't get our miracle, the ability to bring our daughter home and raise her. But we did, we got 4.5 mos of miracles. The time she clotted off 3 ECMO circuits in 20 mins and was being kept alive by a surgeon performing chest compressions. The simple fact that she was able to survive an ambulance ride, and a helicopter ride, 3 hospitals in the first 8 hours of her life. The fact that after not being held or barely touched for 2 months, she was only happy when being held. The fact that she knew her brothers. So many miracles.

Three years ago, with the birth of Grace, my world and many others were changed. The lessons she taught me are always there. I may struggle with putting them into action in my life but she is woven into every part of my life. Her life was a blessing.

Happy birthday my beautiful girl, your life may not have been as long as we had wanted but you surely left your mark on this world. Your beauty and your grace still show today and your blessings still abound. Thank you our amazing Grace for the gift of your life on this day, 3 years ago.

Inconsistent..

My blogging is inconsistent to say the least. I was so looking forward to participating in October's "capture your grief"project, and had hoped it would be helpful to myself and maybe my fellow BLM's but what happened was pretty surprising to me. Instead of capturing my grief, quite honestly, my grief captured me. I simply couldn't do it. I am amazed that I survived October. Many moms describe grieving their babies as coming in waves. You are fine, then a wave comes rushing in, knocks you off your feet and then it's calm again. Over and over again. October was a tsunami.
I'm not entirely sure why. I think that it had been leading up for quite some time. We've had a rough year again, many (very expensive) things went wrong with our home, beginning in May and I weathered it all well I felt. I became pregnant in August and I miscarried in September and then in October one event just set into motion one of the hardest months of grief that I have had since 2011. Because of the hole I was in,  I almost lost one of my longest and closest friends, she didn't do anything but be honest with me and I ended the conversation, deactivated my facebook account and was ready to just be done with everyone. She wouldn't let me. Within seconds she reached back out to me, she extended grace to me that I wasn't willing to extend to me. Her actions, along with countless other friends, and an amazing month of messages at church slowly brought me out of the dark hole I was drowning in. I was so glad for October to be over. It really was rough.
In November, I became pregnant again. I would have been due on the last day I saw my daughter alive, 3 years later. But once again, at 6 wks I miscarried. That hole was going to be even darker and deeper than October. The first two days, I felt an anger and sadness and hopelessness that I can't even describe. Despair doesn't even come close. But instead of keeping it quiet, instead of trying to just ignore it and hope it went away, I opened up. I told some great people what was going on. Immediately they all said amazing things to me, prayed amazing prayers for me. Extended much empathy and grace to me to keep me from going as deep and dark as I could have. Reminded me that yes, this is terrible what I am going through, what I have gone through BUT oh, how blessed I am! How much love I have, not only through these 5 (big and little) men in my home and my beautiful angel girl, but my savior, who also suffered and the many many people he has laid in my path to encourage, love and guide me.
This is not my home. I wanted my Grace and I wanted the babies I lost this year here, I wanted this life with them. But I will have them, in Heaven, where I will have far more time and beauty with them there, than I ever could hope for here. I am thankful for those who have helped me remember this.
One of my sons said to me "I wish we could go back to Connecticut, to how life was there" and I have thought that for the last 3 years too. It's not just that we hadn't experienced the loss of one of our kids, it wasn't that we hadn't had hard times. But we hadn't experienced anything as bad to really break us down and crush us. But truly, we hadn't experienced the beauty either. In this coming year, I want my son (and me!) to decide that life here, our life, our beautifully broken crazy life is still good. We can be as happy as we were then. It's just going to take some work. I'm willing to do so.

Capture your grief Day 5

5. Memory: What memory do you have of your child that stands out for you the most. It may be a positive or negative memory. When you think of your child what is the first memory that comes to your mind?

So many memories, it's so hard to know which one stands out most for me. We had 4.5 months with Grace and spent so much time with her. I don't have just one memory that comes first, it just depends on the day. I do have a few that are much more prominent than others, so I will share those.

Many know, that my pregnancy with Grace was probably our biggest surprise and most unplanned baby. My pregnancy with her was filled with so much chaos, we moved 4 times, Adam left the Navy and began a new job, we had school issues with Tyler, and began homeschooling him, we bought a house. There was just so much else going on that we didn't (sadly) focus as much on her. I didn't feel like we'd prepared enough for her and I felt very overwhelmed at how I was going to handle all that we were dealing with, as well as a baby. I remember more or less, panicking when I realized I was in labor with her, thinking "oh my gosh, we are actually having another baby, this is real. I need more time, I'm not ready!"
My labor was so fast. It was so intense and painful because it was so fast. But one of my very very favorite memories will always be, when I looked down and her head was delivered and I saw my beautiful daughter for the first time, I saw her face and suddenly, every single thought above was gone. Replaced with overwhelming joy, and love. She wasn't even fully born yet and I was madly in love, and extremely ecstatic. It is such a good memory. My heart was so happy.

This memory is not so great. Even though the Dr explained to me what CDH was and what ECMO was when Grace was being transferred to Toledo to be prepared to be transferred to U of M, and her exact words were "if we do not get her to U of M, she will die" (not could, will) I didn't think she was really that sick, the whole time I was at Flower. I think I was really in shock. I had been told what was going on, but still didn't really get it I guess. I kinda thought we'd get to U of M, and either she'd have a small surgery, and we'd bring her home within a couple of days, or I also had crazy disillusions that we'd get there and they'd say " wow amazingly we were wrong! She's fine, go ahead and hold her and nurse her etc" Well. Obviously, that is not how the story goes.
We got to the hospital and parked, and went to the main lobby (which really, wasn't even close to the NICU) and got directions. They asked if I wanted a wheelchair and I declined. I had only given birth, I wasn't in need of a wheelchair to go see my baby..Uh yeah. Should have gotten the wheelchair, it turned out that from the main lobby, the NICU was quite far! I had to stop a few times to just rest because well, I had only given birth about 8 hours prior. So we get to the floor the NICU was on and we saw a door that said it was Holden NICU but it looked to us like it might be a back door, that we were supposed to go into a different door, we'd never been to a NICU so didn't know. We saw a woman at a desk up ahead and went to her and told her why we were there, and I'll never forget she said "um, youre in the wrong place. We only have healthy babies here" and the way she said it was so rude. It just hurt.
We went down the hall to the NICU, and we were led to our baby. We walked a short way down and entered a room, the absolute second we walked through that door, I realized that all of my expectations and thoughts of what was going on were completely wrong. I honestly felt my heart break. I never knew I could feel such pain. The tears immediately started just falling. Like rain.
Her nurse said "are you mom?" and I think I managed a nod. She said "come here and see your daughter" and made the dozens of dr's surrounding her, make room for us. To hold her hand, she allowed us to cradle our arms around her in her bed. I could not stop crying. I couldn't even talk. My heart was truly shattered.

And one of my absolute favorite memories will always be this..

Capture your grief Day 4. Legacy

4. Legacy: Do you believe your child left a legacy behind? It could be something very simple but meaningful

I came across this sign at Hobby Lobby a few weeks back ( still waiting to get the entryway painted so I can finally hang it!) and it is perfect. Absolutely perfect. This is what Grace left behind. I never could have imagined how much of a lesson in grace I was going to receive through her. Never in a million years did I think my baby daughter could teach me as much as she did. She may not be alive today, but for the rest of my life, I will try to live my life half as well as she did.
There are many many things I learned from her, that I am actively trying to apply to my life, to the way I raise my boys but she taught me the most about grace.
Because of her, I try so hard to "give grace" I teach my boys to "give grace". Even when we don't want to, because it is what the Lord does for us, and it is what our Grace did for everyone. She has taught me to truly see the beauty and good and love in everything. Because of my daughter, I can love my sons and my husband, my family and friends,better. Because of my daughter, I can actually truly praise God through the storms, I can do things I didn't think I could. I want to live my life like she did. Truly full of Grace.

Capture Your Grief, Day 2. Identity.

I am participating in CarlyMarie's  "Capture your grief" project for the month of October. Each day this month, there will be a different topic pertaining to grieving the loss of a baby, or pregnancy. October is Pregnancy and Infant Loss awareness month.
Today's topic is
2. Identity: What is your child’s name? Why did you chose that name? What is the meaning of their name? If they were born, what were their birth details. What were their features? Who are they?

Grace. My daughter's name is Grace Fenella. Her middle name is Adam's Grandma. She is a beautiful woman, inside and out and without her, my dear husband wouldn't be the man he is today. He has always spoken and thought so highly of her, so it was no hesitation when he wished to name his first daughter after her. Grace.. well, the long version of her name can be found here. And the short version, is that when I was pregnant with her, I was being taught about God's beautiful grace so very often, and she was just such a representation of that for us, at that time. And to this day, she is. Grace, the name, the word is just beautiful.
Grace's birth was beautiful and  a whirlwind and full of chaos exactly like her life. It was shocking, exactly like her death. She was born at 12:07 am on her due date, after we had arrived at the hospital approximately a half hour or less, before. I know it was about 11:15 when we left for the hospital but I am not sure exactly when we arrived. Anyhow, I didn't think I was in labor and finally decided Adam could call his mom to come spend the night "just in case" and I guess that was probably the only smart thing we did that night. Finally after hours of Adam insisting I was in labor we decided to go in. As we drove through the neighborhood, I realized I might actually be in labor afterall and as we drove on 23, I realized I was REALLY in labor and started telling him to go faster because I started getting worried I wasn't going to make it. We got there finally and suddenly I was having a baby! The second she was handed to me and I looked down at her, I started panicking. She was looking at me, right at me, and I will never forget the look of panic in my newborn baby's eyes. Her mouth was wide open, and not a sound. Adam was preparing to cut her cord and I remember wanting to just yell at him to hurry up already, she wasn't ok! I remember saying. she's not ok! And being reassured she was, but as soon as the cord was cut, and she still didn't cry, but finally made a heartbreaking gurgle, I knew she was absolutely NOT Ok, and everyone else did too.
But what came next, I never expected. 3 words to forever change my family's life.
Congenital Diaphragmatic Hernia. How can something so horrendous even be real?
She left on an ambulance. Adam went with her. My sister in law stayed with me. After being somewhat stabilized, she then left the 2nd hospital on a helicopter. She was not even 8 hours old and was already on her 2nd transport. I never expected that day to go that way.

She was the most beautiful baby. She had dark hair, not a ton of it, but enough. She had beautiful, blue eyes. Chubby cheeks. She was gorgeous. 7 lb 4 oz. My smallest baby. My dainty girl. But oh, was she fierce. She was a survivor, I don't care what anyone says. She was strong. A fighter. She went through more than anyone I know, and she wasn't phased. She lived out her name. She was grace. She went through all the torture, she suffered. And yet, she still loved people. The very people who sometimes hurt her (because they had to give her a shot, draw blood etc) she smiled at. She demanded they hold her,as she layed her head on their chests (which was the absolute most amazing feeling ever)  Aside from the few seconds I held her at birth, Grace was not held in somebody's arms for over 6 weeks, but just occasionally then. She was passed two month old when she was finally held daily. In those two months that she wasn't held, we kept hoping and praying soon we could hold her, we believed that our touch, being held would help heal her. Surely, there is healing power in loving touch. After those two months, we held her for hours and hours. That little girl absolutely hated being put down! I will never forget what Adam told me, after holding her for hours and hours. He said that as he sat holding her, all that time we believed that our touch was healing her, that we were holding her for HER benefit but he realized that maybe, it was the other way around. Her touch, was healing us. She allowed us to benefit from being held. And he was right. The Lord's healing grace.  There is no other word for her, she was and is Amazing.

Two years later.

I remember clearly, sitting next to Grace when she was just a few days old, and the "honeymoon period" was over and she had started having scary days and thinking " if she does die, how will I survive? How do you not die, because your baby has died?" and then again thinking the same thing when she did die. I remember thinking about the people I knew who's babies had passed before Grace and wondering how in the world, you can walk away from your baby the final time. Thinking that I'd need to be carried away..In the end, we left Grace with one of her primary nurses and I pretended I was just leaving for the night. It didn't take me long to figure out how to fake it through the hard things I guess. I remember waking up the next morning after she had died, and sitting on the front porch with Adam. It was early and our neighborhood was quiet, we needed to make plans, find a funeral home, and all I could think was "I just want to go back to bed, stay there and wake up in heaven" "I just want my baby girl" In those early days, there was so much uncertainty, "How will I do this" "how do I live without her" "how am I supposed to take care of 3 other kids, without her" "will I ever truly be happy again" It baffled me how people could lead "normal" lives but have dead children? I remember just wanting an answer "this is how you will get through this" "all you have to do is...." but of course nobody could just hand me an answer.
I remember just pushing myself to try to lead a normal life. Signing the kids up for activities, making plans with friends, etc. I remember being so angry. Just so mad. The breakdowns were seemingly endless, which is funny since that is probably so unkown to others. A trip to the grocery store, results in an anxiety attack and tears streaming down my face. I sometimes wonder how many times people saw me out in public those first months, and thought "what is wrong with that lady?!" It was so tough. I remember cancelling plans with people, and avoiding situations because I was just too tired, too sad. But then just sitting on the couch and doing nothing, because all my energy had been expended, crying and grieving and wishing things had been different. There just seemed to be no way to make this better.
I was bitter. Bitter, bitter, bitter. And I suppose, who could blame me. I went to the hospital in the middle of the night to deliver a healthy baby girl and instead ended up on a path that I never in a million years imagined I would be on. I couldn't make sense of it. I remember people telling me, that they would pray for me to have "peace that passes understanding" and though, of course I knew what that meant, it baffled me. How can I have PEACE that my baby is dead, when I cannot understand for second, what has happened? When it doesn't make sesnse that we were told she was healthy, but she wasn't and then we were told that she might die, but she didn't so we were told that it would be a long road, but that she was coming home and then she fought, she fought so hard, and she endured so much and it was SO hard and then she just suddenly DIED? I WANTED to be bitter. Why would I want to be happy, to feel joy, when this had happened?
But the thing that I learned, or really rather, the thing that God showed me, was that bitterness, and anger and resentment and all of those "ugly" feelings, do not make it easier. They make it harder. I tried to not be so angry and so bitter and I made a much more marked effort to be happy and seek this "peace". And things got better. But not totally. It was still really hard. I still had so many hard days. And my grief is displayed in ways that I wouldn't have expected and many wouldn't see as grief. So it was hard. I just couldn't see how I could ever really feel better again. How would the shift happen, where more days were good instead of bad. Someone told me they would pray for the day that having an angel in heaven becomes a blessing to me. and that made no sense to me.
But now, here I am two years out. My sweet baby girl has been dead for over 2 years now and I am in a place I wouldn't have expected. And I could feel it creeping in over the last year, but we have had so many things happen over this summer and the truth is, they have been hard. But they have truly been the Lord working in us. I really believe that. The truth is, I feel joy. I feel peace. I see how blessed I am. I am thankful. Now, don't mistake this for thinking that I am "fine" or that I am "over" anything. At the beginning of writing this post (which has taken me over an hour, since sweet Caleb has woken up twice) I was sobbing into my ice cream, while listening to Mumford and Sons because I miss my daughter so much. But, even though I miss her, I am able without even convincing myself, to understand that I am blessed. I can laugh, truly laugh. The absolute joy I feel with my sons and contentment with my husband is real. I'm not faking any of it. The calm I feel is nothing I expected. Two years later and I can say, life is good and i'm going to make it. And I'm confident of that, not just trying to convince myself and others that I believe it.This road is far from over, I will go through times of great sorrow still but I think I am finally starting to heal.
 Mama's you are going to get through this! You are going to make it and it is going to be ok. The truth is, though, the only way through this is through Jesus Christ. I firmly believe that. And I was so mad at first, so angry and wanted nothing to do with God, but learned, I can't do this without Him. I simply can't.