“No matter how good or bad you think life is, wake up each day and be thankful for life. Someone somewhere else is fighting to survive”.
~Unknown

As the holidays get closer, I can’t help but to look back on last year and how the holiday season felt for us. We were devastated beyond words and hopelessly overwhelmed with facing what should have been a season of joy and instead was a painful reminder of the child we lost. While we had an understanding family, who was very good about helping us to honor Jack, it was still incredibly hard to make it through. We found out we were pregnant with Jack on Christmas Eve, 2009 and it was a real blessing because it happened not long after my Uncle Carl had tragically taken his own life. It was as if life was renewing itself and healing our hearts. And I think Jack did bring healing in his time with us, which is the first thing I am thankful for this year. That he came at a time when our family needed something to be happy and excited for. I am thankful he gave us 23 weeks and 5 days of hope.

I feel very thankful that we got to spend almost two whole days with our son, while he was alive in the NICU. Many, many of my friends never got to see their child alive or in some cases, at all. We are very fortunate that we witnessed the miracle that was Jack. Literally, the smallest baby I have ever seen and he was beautiful. Even now when I think about him I am amazed and in awe of his beauty.

After Jack couldn’t stay with us, I thought I would never be thankful again. For anything. I felt like I was going to die right along with him. But now, I am thankful that I held on. That even through the pain, sadness and shere agony of those weeks and months, we somehow survived. I am thankful my husband was able to help me hold it together and that we as a couple were able to grow, instead of part. He is a great man, whom I respect more than anyone in this world.

I think I am a more giving person too since everything that has happened and I am thankful for that. During 2010 I gave to more charities than I ever have before and we founded Jack’s Day, to give back to other bereaved families. I thought that somehow by giving of myself to others that I would myself be healed of my wounds. And I think to some extent, it has worked. I’m not ever going to be completely healed, I will always carry a hole in my heart, but that hole is not so wide open anymore.

And then there is Owen. I thank the powers that be every second of every day that I have that boy in my arms. I love him to a depth that I didn’t know still existed within me. He is my reason for living and breathing and for waking up every day. We were terrified throughout our entire pregnancy, it was white knuckled all the way, and I am so, incredibly thankful to the medical team who co-managed us to get him here. And to the NICU staff who saved his lungs and his life, there isn’t an adequate enough phrase to thank them enough. The doctors and nurses in the NICU are miracle workers, every single one of them. They do a really hard job and just like with Jack, sometimes it’s really tragic. I admire their strength to see that kind of loss on a daily basis.

In the end though, I think what I am most thankful for is for our family. Our whole family both extended and not, have been terrific to us as we went through our pregnancy with Owen. Between having to move while on bedrest and then taking care of our house while Owen was in the NICU. To me not being able to work full-time for months due to bedrest, to the stress of both trying to buy a house and having to put our sweet Zoe to sleep, they have all been there. Thank you, each of you, for your help. I can only hope that one day we will be able to repay the kindness and love that you have shown us. I know we are family and that is what family is for, but not all families are as great as ours.

So with that, Happy Thanksgiving everyone. I hope that you can think of a few things you are thankful for, no matter what you are going through or where you are at in this life. There is always hope, remember that.

~EH

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“A strange thing is memory, and hope; one looks backward, and the
other forward; one is of today, the other of tomorrow. Memory is history
recorded in our brain, memory is a painter, it paints pictures of the past and
of the day”- Grandma Moses
I was looking at pictures today of Owen because we got a free book from Shutterfly after redeeming our diaper points. Anyways, it came out great and I’m really glad I finally ordered it. But it got me to thinking of course, about Jack. And so I decided to look at all of his photos. When I did, I came to the realization that, the images we have of him will never change. We will never see him evolve into anything but the tiny, beautiful being that he was on this earth. And while I am still humbled by the fact that we got to be with him while he was alive and he was so small, I am still sad that we don’t have more to remember him by. I know the NICU he was in prohibited picture-taking, due to the flash bothering babies. But why I didn’t think to take pictures with him after he died, I don’t know. Probably because we were in shock and probably because everyone else was too. It’s one of the many things I go back to, wishing I could change. I wish I could have stopped my water from breaking and I wish I would have known to take more pictures. At least we have what we have and, that’s more than many people get. This is what we call ninja grief. When the sadness unexpectedly rushes back into your heart and you feel heavy with grief.
~EH

In My Dreams….
By: Emily Hughes

In my dreams I see your eyes,
Their beautiful …deep color…
I hear your voice, so sweet and clear,
A laughter like no other.

In my dreams I smell your scent,
Of soap and lotion sweet,
I feel the softness of your skin,
The suckling as you eat…

In my dreams I touch your hair,
It’s thick brown delight,
I lay you down in your crib,
To sleep sweet dreams at night.

In my dreams you did not die,
No indeed, you’ve only slept.
I know I took you home with me,
You are the baby that I kept.

In my dreams….

 

Previously, I have written about the time leading up to Jack’s death and the first moments we spent with him after his passing. In honor of Pregnancy and Infant Loss Awareness month, tonight I have decided to write the remaining piece of his story. While I have a link to his general story above, I wrote that when we had just come home and I couldn’t bring myself to go into detail. And so, if you care to read this, then I thank you for remembering with me tonight.

 

Jack Everett Hughes~May 10th, 2010

After Dustin made it to the hospital and we went to the NICU together to see Jack, I remember watching him hold our son all wrapped up in a blanket wearing his little white gown. I can’t remember what he said, all I could keep thinking is “this isn’t how it should be”. Eventually, after we both cried for what seemed like eternity, they wheeled me into a room with Jack in my arms so we could have time with him and our extended family. My parents and Dustin’s mom all got to hold Jack and privately say goodbye. I would later return to that room when I made our first memory box delivery to them.

During the time that everyone held Jack I don’t honestly remember much. I don’t remember leaving that room and I don’t recall where they took Jack after that point. I was wheeled back to our room (I was in a chair since I had just had an emergency classical c-section) and made it back to our bed. More family and friends were told about Jack’s dying. To this day, I don’t know how everyone found out. I know I called Dustin and I think I called my co-worker Randi but I don’t remember talking to anyone else. The chaplain, Ms. Portia Lockett, came to our room to discuss the arrangements we would make for Jack. She showed us the options we had and told us we could do a service for him in our hospital room, since I would still need days to recover from the surgery. We agreed to that plan and we were convinced that donating Jack’s body was the best thing to do. The service was set for later on though, I don’t know now if it was morning or afternoon.

People came to sit with us in the meanwhile, they rotated through the room and eventually filled it. My sister-in-law gave me the shirt off her back so I wouldn’t have to wear a hospital gown for Jack’s funeral. A gesture I will never forget. The balloons and things in my room from the mother’s day the day previous were gone somehow. Maybe just pushed aside so I wouldn’t see them, I really can’t be sure. I was on so much medication for pain and I really hate that some things aren’t clear to me anymore.

Dustin I think was as in shock as I was. I remember feeling so badly for him that I had to call him and tell him about Jack. He had just gone home after being with us for so long and I knew it bothered him that he wasn’t here for us then. We cried so much that day, waiting for the service. I don’t think I have ever cried like that for anything or anyone else. It was the kind of crying that didn’t empty you out. It just made you sore and sadder.

Finally it was time for Jack’s service and by then our close friends, co-workers and family were there in the hospital room. The chaplain brought Jack in the room in a little bassinet. He was dressed in a little blue outfit and he had a little blue hat on. He also had a teddy bear and bunny rabbit with him. They placed Jack in my arms and by then, he was already cold. But I didn’t care. I was holding my baby, whom we loved more than anything. I looked down at him and all I could was say I am sorry. I felt guilt for my body failing him, for my water breaking too soon. Dustin held him too and we both tried our best to memorize his little face and hands. We were never told we could undress him or bath him. Something I will always regret. No one took any photos of us as a family, another thing I wish we had done.

The service itself went quickly it seemed and everyone prayed and expressed their sympathies to us. I don’t remember the words that were spoken. I just remember sobbing.

And when everyone left, they let us be with Jack for a little while until it was time to give him back. I didn’t want to give him back and I know Dustin didn’t want to either. And when he was gone, there was an overwhelming feeling of true emptiness. Just the day before, I had sung my son to sleep inside his isolette. He turned his head to listen to my voice. And now, we had just given him to the chaplain to be taken to the morgue. My heart couldn’t believe it.

We were eventually discharged from the hospital the next day, after being given sleeping pills to help us through that first cold night. Dustin wanted me home just as badly as I wanted to leave. But I knew in my heart leaving, meant leaving Jack. And that broke my heart even further.

When we finally went home I think the shock began to wear off, and the process of true grief began. Eventually, we discovered that the hospital did not cremate Jack’s body as planned. They actually lost track of him because his death certificate was not signed. And thanks to that mistake, we were able to change our minds. The good people at Howe-Peterson funeral home cremated Jack for us and we were able to eventually bring him home (about a month after his death). We didn’t know there would be any remains at all until the people at our new found support group told us there should be. The hospital gave us the impression that there would be nothing left, so that was why we opted for donation. Every time I walk by Jack’s urn I thank those people for telling us the truth.

One of the people we met in our group, Chandra, had lost her daughter in a similar fashion and way as we did Jack. She and her husband were kind enough to buy Jack’s urn for us because at the time, we could not afford one. We are forever thankful to them.

Jack’s story did not end with his death. It was because of the few items we received after his passing, his blanket, clothes and stuffed animals, that we were eventually inspired to start Jack’s Day: The Giving Project. Now, through the help of our support group, Jack’s legacy lives on as well help newly bereaved families create memories. It has been a healing journey to help others in need. And now that we have our rainbow baby Owen, the healing continues. But no matter how much time passes, we will always remember Jack.

~EH

 “…And tonight, just for a little while, that means that I welcome my old friend Grief back into the room and together, tissues in hand, we sit and talk for a little while.”
-Sharing the Journey-

I’m certain by now, people think I’m stark raving mad for continuing to talk about Jack and our loss.  Everyone is entitled to their thoughts and until you have walked in my shoes, I can’t expect you to understand. I don’t expect anything from anyone anymore because I know for everyone else, life has moved on and in their minds, our lives should have moved on too. That is the funny thing though about suffering the loss of a child. The loss never goes away. We don’t have memories of our children to help us ease through the moments of loneliness or emptiness. Or we have very few of them to call on. When you loose a grandparent, you can sit and reminisce about all of your times with them. But when you get only two short days to be with your child that you worked so hard to grow and love, well again, I can’t expect you to understand. And really, we were lucky. SO many people don’t get to meet their children when they are still alive.

You don’t get asked questions that constantly remind you of a loss. People don’t say “how many grandparents do you have?” every time you sit down at the hair dressers chair. But I get asked how many kids I have. And every time I have to wrestle with the answer I want to give. Do I want to tell them about Jack? Do I share him with this stranger? Or do I take the easier route and only mention Owen? When I opt for the latter, I feel shattered that I have disregarded Jack’s precious life. When I do share him I risk getting the responses I dread. Things like- “oh I’m so sorry, at least now you have your new baby” and “oh well he is with God now watching down on you”. Really, a simple “I’m sorry” is good. Don’t try to take away the pain with words, it won’t work.

I guess tonight I am really missing Jack. It’s nights when I lay Owen down and watch him sleep that I feel inside of me this knowing. A knowing that there should be two sleeping boys in my house. That I should have a toddler to chase and to wake up in the middle of the night. That Jack should be there, poking at his little brother with curiosity. It literally feels like I am torn to pieces inside. I want to enjoy every moment, every second of Owen. But with my entire being, I still whole heartedly miss Jack. And with every new thing Owen does I think, “would Jack have done this too?”.

Then of course there is the paranoia I think that comes naturally when you have a rainbow baby after a loss. So while I am missing Jack, I am constantly afraid of loosing Owen. It’s disturbing I’m sure, but when I lay Owen down at night, I whisper to him “please don’t die”. Oh yes. That is my reality.

So I guess to conclude I would say please don’t judge someone based on what you think you know. I don’t post things about Jack or pregnancy and infant loss just to bring you down or remind you of something unpleasant. I do it to raise awareness and to help keep our sons memory alive. And if I bother you, well there is always the very easy option of unfriending or blocking me. I won’t be offended.

~EH

 Piglet sidled up to Pooh.
“Pooh,” he whispered.
“Yes, Piglet?”
“Nothing,” said Piglet, taking Pooh’s paw, “I just wanted to be sure of you.””
~Winnie the Pooh

We all have our friends that we’ve come to lean on during times of stress, times of joy and times of sorrow. Whether they be people we know in person, or someone we met on a social networking site like Facebook. These are people who have helped us in one way or another.  They may have held us when we cried, or “LOL”ed with us online, no matter what- they were there.

So what do you do when your group of friends experiences sadness after sadness? How do you help them? That is what I am asking today. Due to our unfortunate luck, my husband and I fell within that 1 and 4 chance of a pregnancy ending in a loss. We have a lot of friends who are the 1 in 4 too. And it seems that lately, the odds have just not been with our friends yet again.

I’m so saddened and heartbroken for these women. To have to go through a loss once is cruel, but to have to endure the repeated heartbreak again and again is inhumane. I just want to reach out and hold these women. But there is nothing you can do to take that pain away. All you can do is be there, just like they were there for you.

I want my friends whom this post is dedicated to know that your children’s lives were not in vain. Each of them has had an impact on my life and on my heart. They will not be forgotten.

To those who read this and have had the good fortune not to be the 1 in 4 who experience a loss, I hope you take away this message. No matter what your friend is going through, don’t give up on them because you don’t want to cause them more pain. The pain is already there. Be there for them and just listen to them. Let them process what is going on in their lives with you. Believe me, when they have had some time to learn how to live again, they will thank you for it. When I think of the friends who were by our side when Jack died I think of two people in particular. Amanda and Robbie. They didn’t just say “call us if you need anything”, they made the effort to check on us. They came over and they asked us to come out with them. I remember going to visit Amanda after a time when I had stayed awake for 36 hours straight because I was delirious with my grief. I spent the hours before our visit, going cemetery to cemetery, crying for all of the babies who had no one there crying for them. And when I got to her house, she didn’t judge me when I told her where I had been. She said I looked really tired. But she never said “holy crap you’re nuts!”

I hope that this post reaches the people I’m thinking of tonight. That they know how sorry I am for their losses. And I hope that our friends know how thankful I am for having them this past year.

Thanks for reading.

~EH

Not having a lot of free time to write these days, I think has been hard on me. So much of my emotional well-being revolves around being able to put down my emotions into written words. So today, while Owen sleeps, I’m taking advantage of the time.

I feel like my mind is slipping. Maybe its being tired from work and the baby, or maybe its stress because we need to move again soon and we’re paying so many medical bills. But I genuinely feel like I can’t get footing and find the solid ground. Just when I think I have a handle on one thing, something else happens and I’m lost again. It seems like the very best part of my life right now is Owen. And I am very thankful we have him. Other things though don’t seem to be going as well I had hoped. I am trying so hard to do everything and to not disappoint anyone.

I suppose my heart is mending as time has gone by since Jack passed, but it hurts still all the same. With everything going on, there are still constant reminders of him being gone. From the stupid Fiber One commercial with “Jack’s cereal” to today when everyone talked about last years event and how awful the weather was. Last year when my work held this event, it was the day Jack was born. I am very aware of what the weather was like that day. I didn’t need to hear it over and over and over again.

Then there are other things, more personal things going on that I won’t write about here. But needless to say, I feel like the biggest tool in the world and I am ashamed of myself. I just don’t know what to do anymore. I feel lost.

All I want is to make my family and friends happy. To be there for those in need and to help those who ask. Why I am struggling to do this, when it seems so simple, is beyond me.

Meanwhile, I keep having recurring fear of having someone else I love die. I don’t know why, maybe because we have Owen at home, but I am so ultra paranoid now that its bordering on not good. I honestly think that if I have to bury one more family member I’m going to go stark raving mad. And that I won’t recover from it. There is only so much a person can handle. I also fear that I will die, leaving the ones I love without support and without my love. This thought truly breaks my heart.

Last but not least is my relationship with Jack. I feel like I don’t get to do things for him anymore without being pulled away. For example, I was planning to drop boxes off to Hutzel last week. The same day I had a pediatric apt for Owen. I had no idea they were going to give Owen shots and that he was going to feel ill from them. What kind of mom am I that I don’t know when my own kid is going to be vaccinated? Lord help me, I don’t know why I planned to deliver anything that weekend. I suppose its a live and learn sort of thing but still, I felt awful that I didn’t get to do the delivery. It’s during those acts of giving that I can reconnect a little bit with him. I don’t know if other baby lost mommas feel this way, but lately, I feel like I can’t touch Jack’s being anymore. What a terrible feeling that is.

Well thanks for joining me in my pity party. I appreciate your reading and willingness to listen to my rambling emotional post. I just needed to get it out. Maybe now, I will feel better.

~EH

 

A poem for you baby boy in honor of what would have been your due date, August 31st, 2010. We love you always.
Love,

Mommy

 

You Were With Me
By: Emily Hughes

When I sat in the hospital,
And the doctor gave me the news,
That your heart had stopped beating,
That was when I knew,
You were with me.

When I cried myself to sleep,
And my milk came in,
And there was no one to feed,
And my heart was wearing thin,
You were with me.

When I had empty arms,
That didn’t hold a child,
An empty crib in the room,
My anger went wild.
You were with me.

As the holidays past,
And the special moments came,
And we didn’t have our baby,
And it just wasn’t the same,
You were with me.

As I sit now with your brother,
And I sing to him your song,
I know you’re both my sunshines,
And I know that all along,
You are with me.

As we’ve had our rainbow baby, I’ve found my grief journey taking a different direction. New things come to mind as well as new triggers. Ninja grief-as my fellow SHARE group members call it. And I find myself missing Jack, more and more. It has been almost a reopening of the wound that has taken so much to begin to heal. Not at first, but once we were at home, in the quiet times especially. Actually experiencing all of the things we’ve missed out on with Jack has been so very hard. And we’re not even that far out. I can only imagine how the holidays will feel.

Some folks feel like we should move on now that we’ve had Owen. That Owen should somehow fix the gap in our hearts. But that is not fair to him. It is not fair to place that kind of weight on a human being who had no choice in being born after a sibling who happened to become an angel. Jack has big shoes that I expect no sibling to fill. Just as he has made an impact on our hearts, Owen has certainly made his own and I love both of our boys with equal respect.

Today, I had an interesting and humbling experience. We went out to dinner for my father’s celebration of his 20th year working for Ford Motor Co. and I brought Owen with me. Many people paid attention to him and asked questions about him, which caught me off guard. Why? Because I am so used to people changing the subject when I would talk about Jack. No one wanted to ask about Jack and people quit asking anything at all after a while. I honestly am not used to people actually wanting to talk about my child. I actually laughed on my car ride home because it feels so weird to me. How screwed up am I?

I guess the main point of this post is that, while we have Owen whom we love, we also still have Jack. He is not an elephant in the room to be ignored, but a permanent member of our family. And when we have Owen’s newborn photos taken this weekend, Jack will be included because anyone else would have their babies picture taken with their siblings too. We are also continuing to do Jack’s work, through the Giving Project (albeit at a slower pace) and we already tell Owen about his big brother. And obviously, I am continuing to write (at a less frequent interval!). So here we are, our happy little family. One mom, one dad, and TWO special little boys.

~EH

Just two short days after my last post, we delivered Jack’s little brother Owen at 34 weeks gestation. While it was a scary experience again, it was not the same as it was when Jack was in the NICU. This time the tone was positive and encouraging, because Owen was so much further along and a great deal larger (6lbs) than his brother. The staff knew that we would get to take Owen home one day and they were right, we did take him home two weeks after he was born. We love having him home with us and in many ways, I think Jack is happy he is here too. Just the other day we had a random sunflower appear in our backyard that no one planted and I like to think it is Jack’s way of smiling at us, welcoming his brother home.

I don’t know if we will go on to have any more children or not. I only ever really wanted two and I feel very honored to have gotten two of the greatest boys ever. And in many ways, pregnancy has been so physically difficult for me, I’m not sure if my body could do it again. But only time will tell I suppose. Right now we are focused on being the best parents we can be to both our angel baby and now, our earth baby. I do plan to continue blogging, but I can’t say how regular I will be about it. I’m going back to work soon and with Owen, free time is limited. But I’m sure I will find my way back here every now and again. I have a lot of poems still in my head that are beckoning to come out too. Until then, thank you for reading and supporting me as we have walked this path called grief.

~EH