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.