Tuesday, June 30, 2015

comparison

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

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

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

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

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

Monday, March 2, 2015

What was lost.

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

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

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

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

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

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

Wednesday, January 7, 2015

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?


Friday, January 2, 2015

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. 

Thursday, March 27, 2014

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.


Sunday, December 29, 2013

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.

Saturday, October 5, 2013

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..