Saying goodbye to 2016, the year of my daughter’s birth.

img_3914-12016 is nearly over, and it feels as if it has just begun. Weren’t we ringing in the New Year at midnight on January 1, 2016 not that long ago?

On that day, we were sitting with our backs against the headboard of our bed in a hotel just twenty minutes outside of Philadelphia. Our faces were swollen and splotchy from several days worth of unending tears. We watched the ball drop in Times Square on the television, feeling so removed from the jubilant celebration we were witnessing. We wondered how anyone could possibly be smiling at a time like this.

But they didn’t have a clue. Heck, all of our friends, and even many family members still had no idea what we were facing.

10. 9. 8. 7. 6. 5. 4. 3. 2. 1…

There was a pause and silence between Brian and I for a split second before we realized we should give each other the obligatory New Year’s kiss.

Then we both looked down at my pregnant belly, “Happy New Year, Aria!” We whispered in unison.

A stinging sensation flooded my body.

Oh, it hurt. I wanted so badly to give Aria more joy, but I had nothing left. We were so heartbroken from learning a few days prior that our fight, her fight, was almost over. Not because she was getting better, but because she was getting worse.

This sweet, precious, innocent girl was dying before her life even had a chance to begin. It wasn’t fair. It wasn’t right.

In a completely unexpected turn of events, she was born the day after New Years, and she only stayed for an hour. It was not an easy start to the year.

It’s strange, I thought for sure I would be grateful to be rid of this awful, wretched year – the year that took my sweet baby girl. But I’m sad to see it go, because 2017 changes a lot of things.

You see, it made me feel close to Aria whenever I would say, “We have a daughter, but she passed away at the beginning of this year.” The last time I held her was still less than twelve months away, so she didn’t seem so far. Saying the words, “She passed away in January of last year” just sounds so long ago.

The only solace in this is that I know firsthand that time does not end love, and it does not change the fact that I am her mother, and that my husband is her father.

2017 will not be the year she learns to run on a playground, but it is the year she continues to be my beautiful firstborn child. And so will the next year, and the year after, and so on for all of eternity.

Although I still think tears will fall the first time I have to say she passed away last year.

To every grieving parent who may be reading these words; I know this time of the year is incredibly hard, and I want to commend you on having the strength to survive it. I wish you all the best in the coming year, and hope it is much better than the last. Happy New Year.

Sharing Grief

“Maybe their sorrow over two children that never came should have brought them closer. But sorrow is unreliable in that way. When people don’t share it there’s a good chance that it will drive them apart instead.” -Fredrik Backman, A Man Called Ove

The second night after Aria left this world, I laid in my hospital bed with tears streaming down my cheeks, my freshly shattered heart filled my chest with an indescribable pain, and I thought for sure it was all over. It felt like I had been sentenced to a hopeless life of suffering separated from my sweet, beautiful daughter. I felt more pain than I ever realized a human could bear. It wasn’t even purely emotional, I could feel my spirit breaking within my body. Every inch of me ached with sorrow.

If you had given me the chance to leave it all behind and join my daughter in heaven, in that moment, I probably would have accepted it. In fact, I’m quite certain I told my husband, Brian this many times that night.

Truthfully, the only thing that tethered me back to earth was the sight of him. Brian had been doing so well at consoling me, but as my heartache reached new heights it was all becoming too much. Frustration was transforming into rage, and it was beginning to bubble up inside him as he watched me fall apart. For him, handling his own pain was something he felt capable of, but watching me hurt was not something he felt equipped to handle. He had just lost his daughter, and now he was losing the habitually optimistic woman he had loved for nine years. And there was nothing he could do. He was furious that this was not something he could fix. He’s always taken pride in being able to take care of me and fix my problems, but now he felt totally helpless. It was killing him.

As hard as that moment was for the both of us, and as weird as it is to say, I am thankful for it.

Seeing him so broken pulled me back from the ledge I was on, and made me feel a sense of purpose – something I thought I had lost when my daughter passed away. I had to shove my pain away momentarily so I could focus on loving him. We ebbed and flowed like that for a long time. I would break and he would carry me, then it would become too much for him. Then I would scoop him up, and bear the weight for a moment. That cycle repeated over and over again.

This is why I am thankful for shared grief. If we hid our feelings from each other, we both would reach the edges of despair without anyone to pull us back. We need people to know where we are with grief so they can keep us going.

Most often, that is something done between my husband and I. But through this blog, and the huge social media community of grieving parents, I often feel that encouragement coming from all of you. Most of the time, it isn’t as heavy as this. Usually, it comes in the form of reminders that my feelings are valid, or to not feel so guilty about smiling again.

When we feel connected to a community of others who are grieving our loss alongside us we feel supported, loved, understood and purposeful. But without it, grief can be such an isolating and hopeless place.

So that is why I share my grief with all of you. Being this open keeps the light of hope nearby. I want to encourage you to share your grief as well. You don’t have to be as public as I am. Even if you are only comfortable sharing privately with a counselor at this point, share it. It is not a journey meant to be walked alone.

Looking back, and hoping forward.

There are so many things I want to say, but it would take hours to write it all. So I’ll try to sum it all up in one post.

Yesterday marked one year since we met our team of MFMs and fetal surgeons at the Children’s Hospital of Philadelphia for the first time. That first meeting in consultation room #2 was not a good one, and it still weighs heavy on my heart.

I keep thinking, “At this time last year, I was having a Fetal MRI.” or “Meeting with Dr. K” or “Crying in our hotel room.” And so on and so forth. It is strange to be out shopping, knowing exactly one year ago I was sobbing in my husband’s arms, as my sick baby girl moved around in my womb. It is still so hard to comprehend how I ended up here, almost one year away from the last time Aria kicked in my belly, or the last time I held her in my arms.
img_3848After I sent this photo to my Dad with the caption “One year ago…” He replied with, “Do you think you could have ever imagined what the next year would be like?” To which I replied, “Not in a million years.”

And there are so many different meanings wrapped up in my response. Even with all the horrible things our doctors were saying, I never wanted to believe in the possibility of a future without Aria alongside us. I never dreamed that I would become a bereaved parent. I never imagined the magnitude of pain this loss would bring, or how endless grief actually is. I never knew that heartbreak could bring such immense physical pain. And in the moment Aria’s heart beat for the last time, I never imagined I would ever know joy again.

And yet, laughter still finds a way to fill the walls of our home. Brian and I still dance around in our kitchen. I still attempt to embarrass him in public with random antics. He still does the same silly things he’s always done. We still talk about our daughter daily, and happily reminisce on our fondest memories of her. We look at pictures and gush over her adorable little nose. Such a contrast to the days when I feared I would never be able to look at pictures of her without crying. I wouldn’t say I am “healed” or “better”, just different.

Beyond all of that, I never dreamed Aria’s name and story would be known by hundreds of people all over the globe. I never fathomed that she would inspire people so much that they would help us give sixty children Christmas gifts in her honor. I didn’t know that her legacy would eventually become the catalyst for a project that honored the brief lives of over fifty babies.

Never in a million years.

And so as 2016 comes to a close, and Aria’s first birthday inches closer, I can’t help but wonder what unfathomable goodness the next year may bring. That is my hope and prayer for the coming year. Dear Lord, let it be good.

Grandma Lee

Today, my sweet Grandma Lee was laid to rest.

Walking through the last two weeks has been hard on my already grieving heart. I’ve let go of a lot this year, and now I’m releasing even more.

When my Grandma was first hospitalized, there was great grief as I feared she may not recover. I cried as I told Brian one of my biggest fears, that none of my children would ever meet my grandma while on this earth. For several days, I begged The Lord to give us more time. When she was entered into hospice care, I felt an unexpected shift in my heart.

While I was overwhelmingly sad that I would never get to play Scrabble with her again, or help her bake a peach pie; an unexpected joy grew. I realized that very soon, my Grandma would be meeting my Aria. She would be holding my baby girl in her arms. Oh, how the thought of that moment made my heart sing. I know how much my Grandma loved being with her grandkids and great-grandkids. I always loved to see how much her face lit up when we came to visit. So I knew my Grandma would be very excited to see Aria in heaven.

It’s never easy saying goodbye, but it is the hope of heaven that keeps me going. For now though, I’m really going to miss her.

I love you, Grandma. Thank you for everything.

Even still there is joy.

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There’s a scene I’ve seen played out in countless movies and tv shows. Someone stands outside of a home, longingly peering into a dining room window. A warm amber glow radiates from inside as a cheerful family gathers around the table for a dinner that parallels Norman Rockwell’s iconic Thanksgiving painting (Freedom From Want). There is laughter. There is joy. It is a picture perfect moment. The outsider watches innocently while longing to have that moment in their own life, although they feel it is totally unattainable. Always just beyond the glass.

My life has often felt that way in the months that have passed since losing Aria. It’s such a challenge to avoid getting caught up in comparing ourselves to others. Social media makes this even harder because people often choose to only share the good and none of the messy stuff. It’s heart wrenching to scroll through dozens of seemingly “perfect” smiling family photos when you’ve been crying for your lost baby all afternoon. It’s also incredibly isolating.

Theodore Roosevelt once said “comparison is the thief of joy”, and he is absolutely right. It’s so easy to forget that every single one of us is broken. It is an unavoidable consequence of living in this world. We are all bound to be hurt in a major way. That’s not pessimism, its reality. So if you are feeling broken, please know that you are anything but alone. This whole world is hurting alongside you.

But one of the keys to finding joy is to shift your focus to the things you do have. The things that continue to make life worth living despite the things that break us. These are often hard to see when grief is raging the hardest, but I assure you they exist.

For me, I am grateful for the opportunity to have had Aria at all. Although I wish she could have stayed, I would rather have had her for a moment than to have never had the chance to know her. I feel honored that I was entrusted with the privilege of being her mother, as I know this was a task not just anyone could do. She was given to me because I had the strength to fight for her, to never give up on her, and to love her relentlessly for all of her days and beyond.

I am also grateful because my list does not end there. I have found so many beautiful things in this world over the last year, many of which are you – those who have chosen to follow our story and support us through this. You have been the light that shines on the path we are walking through life.

I’m broken, and my heart still bleeds, and yet I have joy. It’s miraculous and beautiful. It’s something I never imagined would be possible just under one year ago. I pray you find it too.

Changing my perspective…

I looked at grief as such a burden for so long. It’s heavy, messy, painful, and such an exhausting journey to walk through. I often wished I could finish grieving and walk away from all the turmoil it brought into my life. But as I rambled on in counseling one day, I had a moment that completely changed my perspective. I realized that I grieve this intensely because of the immeasurable amount of love I carry in my heart for Aria.

This brings me back to a memory from my childhood. One day, I lost a much loved stuffed bunny rabbit named “Benny.” I was so upset. I slept with him every night and didn’t know what I was going to do without him. However, this version of grief only lasted for a brief amount of time before I was ready to move on from Benny.

You see, this was the grief I thought wanted after losing Aria. I wanted it to stop hurting. I wanted it to stop infiltrating every single part of my life and altering it forever. I didn’t want to carry this pain every day for the rest of my life.

But the truth is, the only way to end grief is to end the love that caused it in the first place. But when you have lost a loved one, that is something you simply cannot do. This kind of grief cannot be cured. I grieve this hard because I miss my sweet little girl with every ounce of my being. It is because I love her, I miss her, and I want her to be here.

So somehow, I have started to view this grief as a privilege. I grieve because I love her. My heart aches this much because I am the only person in this world who was given the great honor of being her mother. I carry this grief because I once carried her.

And the strange thing is that once I stopped constantly viewing my grief as a burden, there were many times it stopped feeling like one. As the tears would well up in my eyes throughout the day I would think, “This is because I love her.” And that made it all worth it.

It has taken so much time and work to find myself here, and it is an understanding of grief I never thought I would have. Even though I know it will always be present in my life, I am grateful that it is ever changing. Yes, I will always wish that she were still by my side, and that I never had to walk this journey with grief in the first place. Yet, I am learning to embrace this grief, and somehow thrive within it.