The Ugly Brown Chair

I’ve been spending a lot of time resting in this ugly brown chair as I recover from surgery; it’s the only place I can get comfortable.  As I sat there last night, trying to sleep, I had a vivid flashback to the other times I would sleep in this chair. 

We bought this chair almost 6 years ago now. After we found out we were having twins, I knew I needed a big comfy chair because I pictured myself spending hours rocking and feeding two babies. We went to the store to pick one out and I remember not caring at all what it looked like but knowing that it needed to have wide, soft arms. I sat in the showroom of the store with my growing belly and put my arms up as if I was holding the babies and thought, “this will be perfect”. 

Before I knew it, the chair wasn’t needed anymore as the babies had come into this world too early and now Mary was gone.  There was now only one baby and he was stuck in the NICU.  The months that followed their birth, I reluctantly ended up in the chair.  I slept in the chair many nights as I set my pumping station up there. Without a baby home to feed all night, I would still be up pumping every couple hours and calling the NICU. I would lay in the chair wide awake at 4 am and stare out the window wondering how this was our life.  I wondered how anything would ever be ok again.  I cried. Oh, there were so many tears shed in that chair.  

Today, there is pain in my belly from a missing organ.  Five and a half years ago there was pain in my belly from my missing babies.  Although no physical wound then, the pain now is nothing compared to that.  

I’ve realized most of my worst nights have been spent in the ugly brown chair. There have been many nights of pain, both physical and emotional. When Walter came home from the NICU, I spent the first few weeks sleeping in this chair in his room since the line from his oxygen tank wouldn’t stretch far enough for him to be in any other room.  I’ve stayed up in the chair with a sick baby propped up on my chest all night. And now I sit here as my kids try to gently snuggle with me and help bring me snacks.  This chair has seen a lot of pain but also a lot of recovery... a lot of hurt but a lot of love.  So. Much. Love. 

Infertility... Again

I had expected it since we walked through our journey of infertility to get pregnant the first time, but dealing with infertility after losing our daughter seemed extra cruel. Although I anticipated we would probably have to go through fertility treatments again once we were ready to conceive after Mary died, a part of me thought that surely we would get a free pass. Surely things had to be easier this time because we’ve already experienced the worst pain we could ever imagine when our daughter died. There’s no way the added stress/disappointment/sadness of infertility could be added onto that.

Just yesterday I was going through photos on my phone and found countless quotes and verses that I had saved to stay positive and to help give me strength during those horrible days. Yes, we had walked that path before– the waiting, the hope, the disappointment, then doing it all over again every month. Somehow, looking back, our first infertility experience wasn’t as tough. Although sometimes bleak, there was still hope and promise for an incredible outcome. Facing infertility after loss is a very different story.

Our hearts have already been broken more than we ever thought possible and each new cycle is a new little tear in a heart that is barely being held together. The whole struggle is extra hard after loss because, well, a big part of us knows that getting a positive test does not mean we get a baby to keep at the end of it all. But don’t we deserve a chance? Don’t we deserve to feel that life growing inside of us again…just to be filled with life again? As much as we may have been destroyed by loss, we would do it all over again for a chance at that incredible love that exists only between mother and child.

As devastating as it is, facing infertility after loss is the ultimate declaration of bravery and of love for all of your children. You have had your heart broken before, yet you continue to endure the pain every month because you know that it’s worth it. You know that the mother’s love you have in your heart needs another child here on this earth to pour into. That is one of the bravest things any woman can do.

Choosing To Embrace The Now

I have spent most of the last 2.5 years wanting to go forward or back in time. I was living in the past; wanting to go back to before Mary died, before our world crashed down. I was living in the future; I wanted to move, I wanted another baby, I wanted a lot to change because I didn’t like where I was. What I wasn’t doing was being present, therefore I couldn’t help how low I was feeling.

Since our rainbow has arrived, I have slowly and consciously been able to start to bring more focus to the now. In that, I have found a slightly new sense of peace.

What is my “now”? I am the mother of micro preemie twins (one that fought so hard and is here with us and another that fought so hard and is in heaven) and a sweet baby boy. That is my life right now no matter how much I would like to change that. No matter how many times I replay those days and weeks leading up to Mary’s death, I can’t change it. I can’t continue to live in the regret of all the things I would’ve done differently. Missing her hurts and it will continue to hurt. I know that won’t change. It will hurt and my heart will be incomplete until I’m with her again. I have learned to accept that as our now and live with it.

Focusing on what I have and the family we are now has helped tremendously to lighten my heart. I know that however I say this it’s not going to come out right, but I really think I’m doing ok. Of course, I get sad thinking about all of the things we’ve missed getting to experience with Mary. When I focus on right now… Right this moment I have a sleeping toddler on my lap and a little baby falling asleep and I close my eyes and feel Mary here. When I stop thinking about what I want next or what I wanted then and I focus on right this moment…I feel her light, her spirit, her strength and her beauty and I’m ok.

Learning to Parent While Learning to Grieve

Learning to parent a medically fragile baby while also learning to grieve as a bereaved parent was beyond confusing and overwhelming. I know that I am not alone in being a parent of a “twinless twin”. When my babies came into this world 15 weeks too early, we were instantly shoved into parenthood. We were terrified and unsure what this new world would look like. Unsure how to be good parents in the NICU, we were eager to listen to doctors and nurses and learn all we could. When our world crashed down two days later with our daughter’s death, we were suddenly forced into a new kind of parenthood; one of both bereavement and medical uncertainty.

Becoming a parent is a beautiful learning experience but these are not the things I wanted to learn. I didn’t want to learn about PDAs and ROP and CLD and brain bleeds and ventilator settings. I certainly didn’t want to learn about burial options and gravestone choices and memorial cards but this was my intro to parenting.

I thought I knew what kind of mother I would be and this is definitely not it. Being in the NICU while one baby fights so hard for his life after you have just watched his twin die in your arms is devastating. The fear for any parent in the NICU is huge but once you’ve seen the “worst case scenario”, that fear is exponentially greater. Each step forward was coupled with great sadness and grief and each devastating moment of loss was paired with pride of reaching new milestones. The dichotomy of these highs and lows constantly existing at the same time is so difficult to understand.

There is no way that this rocky beginning didn’t affect me as a mother. I’m constantly full of anxiety when it comes to my surviving twin’s health, “Is he ok?” “Is that normal?” “When do I take him to the doctor?” I know that a lot of first time parents have these thoughts but for us who have lived through the worst, it’s just… Different. It’s more real. The fear and anxiety is for a reason. We are walking around with fragile broken hearts and know that we can’t take another loss like that!

The three times that my son has slept through the night (he’s almost 2.5 years old), I did not welcome the extra sleep…I was terrified. Is he breathing? Is he alive? I have great anxiety being away from him or having someone else watch him (even if for a very short time). I know that these (maybe totally unfounded) feelings stem directly from having lost our daughter.

The start of our parenting journey was, well, pretty traumatizing. It changed me as a mother. It made me more fearful, more reclusive, more frantic. It has also made me pray more, appreciate more and love more.

Uninvited Hospital Guest

Although there were a few similarities– labor spontaneously started early (this time at a much later/safer gestation) and labor progressed insanely fast– I wanted everything with this labor and delivery to be different from last time.
I wanted new doctors in a new hospital.
I wanted to call family on the way to the hospital to let them know we were about to have a baby.
I wanted to feel like my baby was ready to safely enter this world.
I wanted to have a name prepared to call him when he came out.
I wanted to have the house ready and a hospital bag packed. One thing I unintentionally packed in that hospital bag was a whole lotta fear!

The thing I wasn’t expecting was that, oddly enough, there was more fear this time. Although I went into labor at exactly 25 weeks last time, I was strangely calm and not very fearful. I knew my babies would have some hardships and struggles, but the thought of death really didn’t cross my mind. Sure, I knew that there was a 50/50 chance of survival, but I wasn’t going to lose a baby. That wasn’t my story. That happens to someone else, not me. Oh, to be that naive again!

This time around, I was in the delivery room so afraid. Why? I don’t know! I guess because now I am the woman whose baby died. That is my story now. It’s my reality and it happens. It happens in the most traumatic and unexpected way. Was that going to continue to be my story? Would I be the one people say “oh, did you hear… She lost ANOTHER baby?” I now know that most awful and horrendous pain of birthing a baby you don’t get to keep…the pain of saying goodbye. I couldn’t do it again. How could I handle that? That was where the loads and loads of fear came from.

The first time around, although I should have been afraid I wasn’t because I wasn’t exactly sure what to be afraid of. This time, however, I know what every second feels like. I know the heart stopping moment when the doctor tells you the baby you created is dead. I know what the days, weeks and months following feel like and how peeling yourself out of bed is the greatest daily victory. I know the intensity of the pain and I couldn’t even imagine having to stack that onto the pain that already exists in my heart after losing my daughter two years ago.

Although this birth was clearly less traumatic, the fear hung out and slept with us (ok, I didn’t sleep, but my husband did) in the hospital. It lingered in the curtain and in the beeping of the fetal monitor. It crept through the room with the most irrational stories of freak accidents and things gone awry. That was until that final push and the doctor placing a crying baby on my chest. He’s alive and he’s here. He was ours and we can keep him. We will bring this one home! And we did! The next afternoon we brought home a new beautiful life! As disappointed as I was at myself for not keeping the fear at bay, I did my best and that is all any of us can ask for!

The Badge of Bereavement

I wish there was some way to distinguish a fellow loss mother in public.  There should be some sort of symbol, a badge if you will, to easily share with the world that, despite your smiling and happy demeanor, you are hurting inside.  It would be sadly but proudly worn.  It would symbolize the strength of a woman who has been through the worst kind of heartbreak, yet is still standing. 

Ok, let me set the scene.  I'm taking my son for a walk through the neighborhood and spot a cute young couple walking toward us about a block away.  Of course, I play out in my head what they're thinking/talking about and it goes something like this 
Wife: I love you!
Husband: I love you too!
Wife: Awwww, look...cute baby. I can't wait to have babies with you.
Husband: Me neither, let's have one!
Wife: ok, yay! 

And naturally, I see the rest of their story play out.  They go home and start trying and five weeks later... Positive pregnant test!

Just as I'm starting to get really annoyed, I see them see me and they quickly turn the corner.  Hmmm. 

Maybe the site of me walking around the neighborhood with a cute baby in tow hurt them.  Maybe they've been trying to get pregnant for the last year or two.  I just want to scream at them from afar, "We have tried for years to get pregnant and this one right here... is our surviving twin, my daughter died.  I know pain!"  Instantly, I flashed back to my feelings when I would see the same thing and I would've turned that corner so fast too.  I don't know why but when I have worked so hard to make a baby (or two) seeing another family with a healthy little baby just feels like a punch in the gut.  I imagine them getting pregnant on their honeymoon or worse yet... "Omg, we weren't even trying!".  Barf. 

Now having lost my much sought after, much loved and much desired daughter two days after she was born, seeing families with babies is like a double punch in the gut... And then a stab and twist with knife.  The pain I feel when I see other people's happiness is embarrassing.  I don't want to feel so awful, but I do believe that pain just comes with the territory of suffering through such an incredible heartbreak. 

However, if I know a woman is part of this (awful, yet totally supportive) club known as bereaved motherhood, I would have such a warm heart at seeing her happiness with a healthy child in her arms.  It just seems easier knowing that a woman "gets it", that she will never take one second with that child for granted, that she knows happiness through the pain, that she will always hold and kiss that baby as more than just one baby.  

This life of a bereaved mother is one that I would never wish on anyone. It is more pain than should ever be allowed in any lifetime.  However, when I know that someone else is unwillingly part of this life too, their happiness is my happiness.  

So, there's my predicament.  I don't know how to make the instant gut-punch subside when I see a woman with a baby (or super pregnant belly) unless, of course, she is wearing her badge of bereavement.  

Living For Her

Mary didn't get to live her life.  
As much as I hate everything about that sentence, that means we need to live our lives for her. 

It hurts so much that we don't know all that much about her.
We'll never get to know her favorite food (I'm guessing chocolate like her brother). 
We'll never get to meet her best friends at school or her favorite teachers.
We'll never get to see what sports or activities she would do (although I just know she would love to dance).
We'll never get to see her get dressed up for her first school dance.
We'll never get to see the man she would pick to marry.


What we do know...
-She was BEAUTIFUL!! She had so much dark hair (just like the rest of us) and the cutest dimple chin!
-She was so patient and sweet!  We got to see her on ultrasounds every week and Walter would be kicking her and punching her and she was always so calm. She would usually just put her hands up to block her face.  
-She was tough!  Although so kind to her brother, one day she did finally kick back!  Now, I wouldn't normally condone violence but I was very proud of her for that!  
-She also fought so hard!  Every week in my belly she had less and less fluid but she held on so we could meet her and although much too brief, she held on for a day and a half.  
-She is loved soooo much!!!

I hate that she was robbed of this life, that we were robbed of her precious life.  

Since she can't be here, we are going to fight so hard to make sure that her kindness, beauty and love is shared with this world.  
We are excited to see random acts done in Mary's memory in hopes that next Sunday, on the anniversary of the worst day of our lives, the kindness, beauty and love shared in Mary's memory will make the world a little brighter. 

YOU ARE

You are my strength. You are my hope. 

You are my future. You are my past.

You are my light. You are my shadow.

You are my peace. You are my sorrow.

You are my day. You are my night. 

You are my heart. You are my spirit.

You are my dreams. You are my memories.

You are my kiss. You are my embrace. 

You are my baby. You are my forever.

I love you, sweet girl! 💜 - Mom

Day 27: Signs

One of the many signs that make me think of Mary is bumblebees. I never really liked bees (who does?) but the week after Mary's funeral I visited her grave every day. Every day there was this little bee hovering just above the grass that wouldn't leave Mary's little area. I think with her dark hair and yellow cardigan, it's only fitting that she sends us signs as little bees. I feel her in everything, though. A change in the breeze, the sun peaking out from behind a cloud, really anything beautiful I see as a sign from Mary that she's happy, having fun and watching over us.

Day 25: #SayItOutLoud

Losing a child is different from any other loss.  It's not the loss of good times or a wonderful past or present.  It's the loss of a future. It's the loss of your hopes and dreams. It is having your future in your hands and having it slip away. It is the loss of innocence. It is the brutal awakening that a healthy pregnancy does not mean you get a healthy baby. It is the loss of everything you thought you knew... Because parents are not supposed to bury their children.

Day 24: Artwork

The first is a beautiful piece of "art" that my dad made. He made me a special wooden box to keep Mary's things in. We had so many keepsakes and her hospital things that deserved a special home. The bottom photo is some of the wonderful drawings that Mary's cousins made for her. They are so special to us.

Day 23: Jewelry

I have a few wonderful pieces. First, my ring that has 2 emerald hearts on it (the babies' birth stone). It's beautiful and my parents gave it to me right after Mary passed away. I alternate between my 2 necklaces (depending on my mood). The first one "forever in my heart" with an "m" inside was given to me by my dear friend. I love wearing it. I also received a broken heart necklace with Mary's name on it from August Wings. The other necklace was given to me by my mom's cousins while we were still in the hospital. I like that it has the babies' birth stone and tiny footprints for each of them. There is also "faith" and "family" tags that share everything that is important to me.

Day 22: Words

These words continue to stick in my head. No matter what I do, "I carry your heart with me(I carry it in my heart)" are the truest words that I could ever say to Mary. Though she isn't here with me physically, my heart is full of love for her. "You are whatever a moon has always meant and whatever a sun will always sing is you".

Day 21: Honor

I bought a ton of the "Mommy, Please Don't Cry" books since they brought us so much comfort. Knowing what we were given at the hospital when everything was so raw and unreal, I think this book would have been nice to receive. I wrote a special note and "in memory of our sweet girl, Mary Glen" in each of the books and gave them to the NICU to give to other parents who lose a child. I feel good knowing that Mary's memory will live on by bringing other people even a little comfort and peace that their little one is in such a wonderful place.

Day 20: Hope

I hope this gets easier. I hope we can learn to live with Mary in our hearts instead of in our arms. I hope we can keep her memory alive and make her proud. I hope no one else has to go through this. Unfortunately, I know it will happen so my hope is that they can receive the support needed to find the hope to get through this.

Day 19: Support

This has undoubtedly been the worst time in my life but I am thankful for the support of my family. My husband has been there to laugh with me, cry with me and share memories. The grief share emails have also been very helpful. I have found a tremendous amount of support from you ladies. Just knowing I'm not alone and can go to people who know what I'm going through has been so helpful!

Day 18: Release

Oh, so many feelings I need to release. Every day is a struggle getting past the hopelessness, fear, regret, jealousy, anger and guilt. The two that are probably most prominent are anger and guilt. I find myself constantly getting angry thinking, "why us?"! I hate that none of these feelings were ever on my mind 5.5 months ago.

Day 17: Time

It has been 168 Days, 6 hours and 16 minutes since we lost Mary. 14,537,760 seconds have passed and I have missed her in every single one. Some days it feels like just yesterday and other days it feels like an eternity since I last saw her/held her/kissed her.

Day 16: Seasons

Spring will always remind me of my Mary. The babies were born in early spring (although they were due in late summer). The day we came home from the hospital everything was in full bloom. Our tulips were up and our beautiful flowering tree was so pink! The world was full of so much color and beauty and life when we were not.

Day 15: Wave Of Light

Today is the day to create the wave of light across the world by everyone lighting a candle at 7pm for our angel babies.  It was hard, but I felt her. We talked to her and told her we missed her and watched the flame burn for an hour. God, I miss her so much! I don't want to have to light a candle for her, I want to hold her!