Grief · Helicopter Henry · Infant loss

Van

Henry love,

I think about you and all of the things that I want to say to you every day. I’ve had my hands quite full with your little brother. He is amazing. I’m sure you know that and love him nearly as much as we do. I will start at the beginning.

His birth was everything we dreamed of. He was born peacefully at home on the first snow of the year. He was 17 days early. Exactly the number of days that you were late. I will write his full birth story later. At first it was hard adjusting to having a baby in my arms that isn’t you. You boys have so many similarities. Looking at him look into my eyes while nursing brought vivid flashbacks of the incredibly precious hours that I spent nursing you. Many mornings I would wake up and see him lying in between me and daddy and it took my brain just a second to realize it wasn’t you. It was hard and confusing at first, but soon Van became a very real part of our lives. I always knew he would, but sometimes it was hard to believe that he would fit in our life as naturally as you did.

We had a lot of fear in the beginning, and sometimes we still do. Daddy and I both spent countless hours staring at Van to make sure he was always okay. We both had moments where we were sure something was wrong and we freaked out. But Van has grown so big and strong these last 3 months. He was in the 87th percentile at his two month check up. The more we see him grow the more confident we become in his ability to thrive. I still check his breathing fairly regularly and am always thinking up new ways that we could lose him, but I’m becoming more confident every day that he is healthy and safe. 

It feels so good to have a chubby, healthy baby. It was hard and sad to watch you struggle to gain weight and then lose weight. We are in love with van, just like we are with you. It still feels so unfair that you never got a chance to grow and develop. It is so strange that you are Van’s big brother, but already he has far exceeded you in the milestones he has achieved. He weighs 14lb! That’s almost twice what you ever weighed. He can hold his head up as long as he likes. He smiles and laughs at us and makes funny faces when we do weird things. Just this morning he started rolling over! I woke up and he had rolled from his back to his belly and had an arm stuck underneath of him. 

I love you both so much. Parenting a 3 month old is so different than parenting a 3 week old, and sometimes it feels better or like I love Van more because I have had more time with him. I know I will never love anything more than I love you. I love you boys equally, but differently.

You will always be my first born, Henry love. You will always be the one who made me a mother. You will always be my first experience of the indescribable joy and pride and love and purpose that having a baby brings. You will always be an incredibly special boy. And every time I practice yoga I get time alone to focus on all those things and nothing else. 

Your uncle Kyle wrote a song for you. He started working on it shortly after you died and they just released it on their new album. It’s the most beautiful song I’ve ever heard. It reminds me how special and loved you are. And how incredibly tragic it is that you aren’t here with us every day. And it reminds me that we aren’t alone in that. There is still an army of people who love you and miss you.

I love you dearly and I will see you in savasana.

Love always,

Momma

Helicopter Henry

One Year Later

Henry Love,

A week ago today your daddy and I took the day off work, stayed in bed until 11 sleeping and crying, went to lunch and went on a beautiful hike in the changing aspens. We spent the day remembering the day one year ago that you nursed for the last time, that we held you for the last time, that we got to look into your most perfect face, and that we had to walk out of room 7 in the ER and leave you forever. Far and away the most terrible day of our lives. We went home and cried harder than we have ever cried. The physical pain of losing you seemed like it might kill us too. We cried until we fell asleep and when we woke up our families and some of our dearest friends were there to feed us and hug us and sit with us and talk with us about what a horrible thing had happened. 

The next days and weeks and months were overwhelming. With floods of sorrow coming on at unexpected moments triggered by unexpected words, sights, and memories. Seemingly innocent, every day things would trigger memories of you and what we went through and I would find myself in the deep waters again. A good friend told me grief is like waves. At first they come one after another and each one is big and strong and will knock you down. Overtime the waves get smaller and slower, and every once in a while a big one will come, but you are more prepared to stand in it. I’ve held on to these words and found them to be true. I haven’t had a single day without waves, and I still get some very big waves, but for the most part the daily waves are smaller and more spread out. I still miss you every moment of every day but I am learning to live with grief and even find some beauty in it. 

I’ve been thinking a lot about my favorite song I sang to you, Let It Be Me by Ray Lamontange. I remember singing this song to you whenever you seemed sad or uncomfortable and thinking about the challenges you had ahead in your life. Surgeries, chronic illness, developmental delay, heart transplants. And I always knew I would do absolutely anything in the world for you, my sweet boy. And as I think about the struggles you faced I find a lot of grace in the fact that you are at peace. That your body and mind and heart are perfectly whole. And while I will always always wish that I could have held you longer, sometimes I think that a lifetime of grief is worth it for the pain that you didn’t have to experience. I know that you would have been an incredibly strong, brave, peaceful man; you were from the minute you were born, but I am so glad for the sorrows you escaped. 

I love you so much and I will always always be so proud of the strong, brave, sweet little soul that you were. You have changed our lives in so many ways and we will always always hold you close in our hearts. 

Love always, Momma
Let It Be Me

There comes a time

A time in everyone’s life

Where nothing seems to go your way

Where nothing seems to turn out right

There may come a time

You just can’t seem to find your place

And for every door you open

Seems like you get two slammed in your face

That’s when you need someone

Someone that you, you can call

When all your faith is gone

And it feels like you can’t go on

Let it be me

Let it be me

If it’s a friend that you need

Let it be me

Let it be me

Feels like you’re always coming up last

Pockets full of nothing and you got no cash

No matter where you turn you ain’t got no place to stand

You reach out for something and they slap your hand

Now, I remember all too well

Just how it feels to be all alone

You feel like you’d give anything

For just a little place you can call your own

That’s when you need someone

Someone that you, you can call

When all your faith is gone

It feels like you cant go on

Let it be me

Let it be me

If it’s a friend you need

Let it be me

Helicopter Henry

Happy Birthday

Henry Love,

At this exact time one year ago I was kneeling over a birthing ball trying to rock you out. I remember it so vividly. It felt like I had been in that position for 30 minutes or so, but later daddy told me it was over 4 hours. I was in some sort of trance. I was nearly 12 hours into a very intense induced labor. They kept telling me that with how strong and frequent my contractions were you would be here any time. That was not your plan. You took another 28 hours to make your appearance.


 I remember spending the entire night falling asleep in between contractions. It felt like I got 20-30 minutes of deep sleep in between each one, when really it was only 2-5 minutes. At one point daddy took a little nap and your aunt Claire sat there holding my hand. I remember her face. It wasn’t fear or worry, it was something else. Some kind of aching. I remember the sweetest moments of walking around the room hanging onto your daddy and listening to him tell me what a good job I was doing. We both talked to you through those 40 hours. We told you how we couldn’t wait for you to be here so we could meet you and hold you, and that you were being really strong. We told you all about breast milk and how much you were going to love it. 

Labor was hard. But it was exhilarating. I loved knowing that every contraction was bringing you closer to being in our arms. It was the most empowering, purposeful thing I have ever done. I remember reaching down in between pushes and touching the top of your precious head for the first time ever. There is nothing in the world like the feelings I had bringing you into the world. It was nothing like what we had planned for your birth, but it was incredible. You and me and daddy, we rocked it. We made such a good team. And on September 13, 2015 at 11:11pm we had the perfect family. You were a whopping 22 inches long and 7lb 13oz. Tall and skinny just like your daddy. You were so alert and aware. Everyone said how you looked more like a one month old than a newborn, maybe because you were 17 days late. You were so perfect, Henry love. Everything we could have ever dreamed of.

I’m sure that even if you were alive and healthy today we would have a hard time believing that a year has already passed. But because you’ve been gone there’s an added element of disbelief. Maybe it’s that I can’t quite wrap my head around the fact that we have lived a whole year without you. In so much grief. That just one short year ago life couldn’t have been better. We had all the hopes and dreams in the world. And we still have so much hope and joy and so much love and many other good things. But our family, our lives will always have a huge piece missing without you. 

So happy first birthday, Henry love. This day will always mean so much to me. The day we first held you. The day we became parents. The day we experienced the most profound love and joy for the first time. We will never forget you. You will always be in our hearts. And we will never stop wishing for one more day with you.

Love always, Momma

Helicopter Henry

Your little brother

Henry love,

I have had all these thoughts and feelings swirling around in my head for three weeks now. I have been wanting to write them down, but I don’t even know how to begin to process most of them. Three weeks ago we found out that we are having another baby boy, your little brother. 

Initially I was thrilled. I wanted another boy. I wouldn’t mind if I had all baby boys. I know I would be thrilled with a girl too, but there’s just something about little boys. They are wild and fun. I’m not sure what I would do with a little girl who wanted to play princesses or listen to Disney songs. And I just picture little boys running around our house. So when the ultrasound tech put the photo of your little brother up on the screen and told us “it’s a boy,” tears of joy filled up in my eyes.

And then almost instantly the fear and confusion set in. Maybe it was the unsolisited 3D image she put up next that looked just. like. you. But I had a moment of panic. Questions like “how do we let this baby be his own person and not feel like he is a replacement” and “what if they look exactly alike” and “how do I not put all of my expectations of Henry onto this little boy” all flooded my mind. And for a moment I wished for a baby girl. Before we found out, people often asked me if I hoped for a boy or a girl. I always said “I would be happy with either.” Because while I secretly hoped for a boy, I knew that a girl might be easier on my heart. I know any baby after a loss comes with challenges, but I thought maybe having a girl would separate the experience of this new baby from the experience we had with you enough that it would ease some of the confusion. 

And then there was choosing his name. I love your name. I love to speak it. I love that you have your daddy’s name. We didn’t have a boy name picked out, but the day we found out you were a boy we thought of the name Henry and I instantly loved it. It’s just, perfect. Maxwell Henry Perry. It felt like a big job to chose a name we like as much for your little brother. And even though it only took us less than three weeks, not having a name for your brother added to the confusion in my head and my heart. It felt like he had no identity and he was just this little baby who looks like you that we know nothing else about. 

We have named him Norwood Van Perry. We’ll call him by his middle name just like we do with you and just like your daddy goes by his middle name. Van is your grandpa’s (on daddy’s side) middle name and Norwood is his dad’s middle name. Norwood means woods in the North, just like our home, Flagstaff. Daddy has always been fond of the name Van, and I think it goes nicely with your name. It feels good to have a name for him. It helps to give him his own identity. 

And then there is the issue of him being your little brother. You are his big brother, Henry love. And he is your kid brother. But it will never look that way. Every experience that brothers should have together won’t happen for you two. And it will always look like Van is the oldest child in our family. And in a few short months he will live to be an age that you never reached. I know these are probably not things that you feel you will miss out on because you are living in complete shalom, but it breaks my heart. It breaks my heart that you won’t be here when he is born. You won’t touch him. He won’t know you. And while he is a little brother, he will never have the experience of a big brother. We are so happy that we have him, but all of our lives ha e been robbed of the joy and light of your life on Earth. 

As much as we love Van, and as much as we are moving forward in life, our family and our lives will never be the way they should be. My love for you could never decrease because of my love for Van. And I love Van because he is our son, our second born. He will never be a replacement for you, and I would never want him to be. You are both very special people and very special members of our family. We love you both so dearly. The best way I can describe my feelings about having a new baby is that he is a bright light in what has been the darkest time of our life. And we are so thankful for that. And while he has already brought so much hope and joy and healing to our lives, nothing will ever take away the pain of losing you. 

I love you so much, Henry love and I will always carry you in my heart. 

Love always, momma 

Grief · Helicopter Henry · Infant loss · Support

I ❤️ Henry

Henry love,

I miss you every day. I think about you any time something else isn’t demanding my attention. But amidst all the grief I think I am very lucky. I am very lucky to have the incredible support that I do. 

First of all, I have your daddy. There aren’t many men in the world who are really willing, let alone eager, to work out their feelings. Your daddy is pretty good at this. I remember before we were married I knew that life would be good with him because he was always willing to be honest about and work through hard things. I don’t think anything could be more important in a husband after the year we’ve had. He provides me so much love and fun and joy. Our life will always be lacking without you here, but I am eternally grateful for the fullness that your daddy brings to my life.

I also have more than a handful of great friends who have spent countless hours asking questions about you and allowing me to talk on and on about my pregnancy and birth and your short, difficult, beautiful life. I know that sometimes I tell the same stories and share the same feelings over and over again, but they always listen with generosity and compassion. And they share their memories and feelings about you too. Nothing makes me more proud than to hear other people talk about the incredibly little guy you were. These friends, along with many others, helped me raise thousands of dollars and walked with me for the American Heart Association’s heart walk. Dozens of us walked with your name on our shirts. 


The most unexpected support has come from my work friends. Many of them are more like family. I knew they would be caring and supportive, but their outpouring of love has been above and beyond what I could expect of most people, let alone coworkers. I remember my first week back to work a few of the nurses asked to see pictures of you. We sat for an hour and I got to share with them all 250 photos I have of you. A couple months later they made shirts that we can wear as part of our uniform with an “I ❤️Henry” on the sleeve. I often hear stories about how patients ask “who is Henry” when they see the shirts, and how my coworker’s share about your life. A few times I have overheard these exchanges. I have shared stories about you and your life and your heart countless times to my caring work friends. It means the whole world to me that your name and story and your life live on in this way. I know many mommas live with the feeling that their baby has been forgotten, and I am thankful to say that is not a feeling I have had to struggle with. 

So while it doesn’t take away the loss or the grief, the incredible love and support that I have has made this year survivable. These people have been a constant reminder of the good and joy and meaning in life. And most importantly they have helped give meaning and remembrance to you, Henry love. You are my pride and my joy, and I, along with so many others, will never forget you. 

Love always, Momma

Helicopter Henry

Grief

Henry Love,

Today you would be 10 months old. 10 months. I truly cannot wrap my mind around that idea. Sometimes it all feels like both the best and worst dream. And often times I do wake up from bittersweet dreams of you. Those nights are my favorite moments, where my mind dreams of how you look and what it’s like to hold you and what your personality is like. Some times I sit and cannot imagine how life is possibly moving forward and think I could actually die from the pain of it all. Most of the time it doesn’t feel real. I don’t feel old enough to have a 10 month old, let alone to have experienced the trauma of losing my perfect son. It has been truly horrendous. And I would never have chosen it, but I can honestly say that in a lot of ways I wouldn’t want to give up this experience. 

Grief is a mystical, visceral thing. It seems almost silly to name it, as if we had even the slightest understanding of what it is supposed to be like or where it will take us. There is no right or wrong, expected or unexpected. It’s all just a wild ride of crazy feelings. But in the face of this thing called grief, a person can become their best self. I think many people become their worst self, but that’s apart of it too. 

For example, I knew the first day we sat in the NICU with you that I would be a better nurse for the rest of my life. And I am. Today I left work so very proud of the care that I gave to my patients and their families during some very hard and scary moments. But there have also been days where I am sad and angry and other peoples experiences are too much of a trigger for me to set my pain aside and love and care for them. And those have been some of the worst days of my nursing career. That is to say the least of how grief has changed me. I could never have loved your daddy so much if we had not shared your life and all the pain that came with losing you. We are bonded in a way that I think most people will never know. And my friendships have been rich and deep and meaningful. I have had opportunities to be with friends during horrible times and actually share some of their grief. And they know that I know a little about what they have to deal with. 

My entire world has changed, Henry love. I can’t say that I would ever chose a world without you, but my eyes have been opened to this whole other world. A world where joy means so much. And love is rich in action. A world where I will appreciate and love my babies in a way most moms don’t get to. And a world where life means so much. I ha e you to thank for all of that. And even though I would probably chose the world where I lose my temper easily and love people half-heartedly and don’t take advantage of the time I have with the ones I love; I am truly grateful for this life where deep deep pain means even greater joy. 

I love and miss you always sweet Henry love.

Love always,

Momma

Helicopter Henry

Immeasurable love 

Oh Hnery love,

Your momma loves you so so much. And nothing can ever stop that. I know we will love this new baby so very much. Sometimes I am afraid of the fact that we will have so much longer for our love to grow for this baby than we did with you; but mostly I am afraid that my heart will never be whole enough again to care about anything the way I cared about you. The pride and joy and love I have for you is immeserable. I beam at any chance to speak of you and what a beautiful, smart, strong, brave baby boy you were. I remember driving back to flagstaff as you were flying home, and I cried the entire way home. Partially out of fear and partially out of exhaustion and partially from the stress of the whole situation, but mostly I cried out of heartbreak from being away from you for two more hours. I had no idea the grief that a human could experience, to spend a lifetime with nowhere to send so much love. 

You are and always will be one of my greatest sources of joy in this world, and I will never stop remembering you with so much love and sadness. 

I cannot wait to hold you again, Henry love.

Love always, Momma

Helicopter Henry

Little baby and little hope

Henry love,

Your little brother or sister is 10 weeks old inside my belly. It’s going by so fast for us. We had our first appointment with the midwives this week and we got to hear the baby’s heartbeat. We are so excited and already so in love with this baby. I cannot tell you how much our hearts long for you. We are quite confident that we will love this baby just as much as we love you. It will, of course, be different, but we know we will be a very happy family. No matter how many beautiful babies we have though, our family will never be complete. We will always feel the hollowness of missing you. Every family photo, every holiday, every family trip, every time someone inquires about our family, really every single day we will feel the sting of your absence. 

There is a lot of healing in moving forward with our lives through this baby, but we will never move on or forget you, Henry love. You will always be the perfect son that we desired. You will always be our cherished first born. And we will always always be proud of you. 

Love always, 

Momma

Grief · Helicopter Henry · Infant loss

Big brother, Henry

  Henry love,

You are a big brother! I so badly want to know if you know this already. There is a tiny baby that has been growing in my belly for almost six weeks now. And I tell that tiny baby all about you and how much we love you and how if sometimes we seem sad it’s just because we are grieving for his/her big brother. I put a yellow light of positive energy around our little baby to protect him/her from the affects of our grief. 

We are so thrilled to be pregnant again and to have a baby to care for, even if it’s just cells dividing in my womb. But it has been very conflicting. With this new baby coming I find that my thoughts and attention are focused so much on him/her and less on you, Henry love. I know that is a normal process when a second baby comes along and it doesn’t take any of my love away from you, but it feels like this connection I have with you that exists inside myself in the form of intention and grief and longing is fading. I find it very bittersweet. I feel strong and more like myself than I have in moving forward, but I am afraid of moving on. I never want to forget you or move on from you, Henry love. You will always be my baby, my love, my son, my first born. I know that moving forward means I am healing and that is what you want for me. You are perfectly happy and at peace and you don’t want us to be sad and grieve for you.

It is also hard to know that this baby would not exist if you did not die. We always wanted more babies. And we will hopefully have more after this one. But it is very unlikely that this baby would have existed at this time if you were still here. And I want you more than anything in this world, Henry love. But I’m afraid the time will come where I love this baby very very much and it will be hard to confront the fact that that love exists because we lost you. It is a lot to wrestle with and it is a lot to try to understand. To love this baby while still loving you. I know my love for you both will only grow and grow, I only wish you were still here to fight for my attention.

It feels like a fresh start. Like we can be two young kids, naive and in love looking forward to a new family. And it feels totally separate from our experience of grieving you. And in a way that is beautiful. It’s a story of redemption and healing. But in a way that is the saddest of all. That instead of growing up playing and loving and learning and fighting together, you and the new baby are apart of different experiences. 

You will always be connected in many ways. Your DNA remains in my body for up to ten years. Which means this baby has exact pieces of your DNA growing in his/her tiny, tadpole-like body. I am anxious to see how much this baby will look like you. In a way I hope it’s a lot, because you are actually the cutest baby to ever grace the earth. But in a way I hope this baby looks totally different. I want this baby to have a chance at being his/her own person. With no pressure to fulfill our hopes and dreams for you or the precious experiences we had with you. And so I hope this baby is a girl. So she can be 100% herself with only the love we learned from you. But I do love baby boys, so I would be thrilled with that too.
I love you forever and you are always always in my heart, Henry love.

Love always, momma

Grief · Helicopter Henry · Infant loss

6 Months Later

 
 

 
Henry Love,

As of yesterday we have lived six months without you. We have lived six months missing you every day. We have lived six months in grief and anger and confusion. We have lived six months in a world we could not have imagined. In a way it’s been harder than I ever could have fathomed and in a way it’s been easier. 

I could not have imagined such deep pain and sorrow before this. I could not have imagined life could be so grey and empty and meaningless. I could not have imagined the physical aches that the longing brings. But I also could not have imagined that I would be here – breathing, standing, moving forward. 

It hasn’t been easy and I know this is far from over. But today I can say confidently that I will be okay. There have been a lot of days where I wondered if I would ever be okay again. If my world would ever stop looking so grey. If my shoulders would ever stop feeling so heavy. If my mind would ever calm down from the thoughts of what I have lost. But today I am confident that I will be okay. I know there will always be hard days. Yesterday felt like hell all over again, but today I woke up and the sky seemed a little brighter and my shoulders felt a little lighter and I knew without a doubt for the very first time that I will be okay. I am okay.

There were months where I could hardly stand to leave the house or see anyone. I definitely didn’t want to meet new people and nothing seemed interesting or exciting. But slowly, over time, people became interesting to me again. Events and experiences  became exciting again. I began to look forward and that moved me forward little by little. And I started to feel a little more like me again. This has been the culmination of a very good therapist, the most compassionate accupincturist, some very good yoga teachers, a few healing crystals, a couple good books, countless drops of oils, and an army of people who continue to stand by us. 

I will never stop missing you, Henry love. And it will never feel okay that you are gone. But I want you to know that I am moving forward. I carry you close in my heart in everything that I do. And I still long for the day that I can hold you again. But I have a big long life ahead of me and I am determined to make it the best that I can.

I love you forever sweet boy.

Love always, Momma