Dreams

The other day Brian was helping me in the kitchen as I prepared dinner when he looked at me with glistening eyes and said, “What would she be doing now?” He didn’t have to specify who “she” was or what exactly he was asking, I already knew.

“She’d be talking. Not a whole lot. But several words by now I’m sure.”

“Would she be walking?” He asked.

“Walking? She’d probably be running by now.”

I watched the corners of his lips turn up just slightly, like his proud smile was some kind of secret he was trying to keep inside of him.

This pride we feel is an interesting thing, and not easily understood by those who have not been where we are. To think about all the growing and thriving she could be doing right now if things had been different brings so much mixed emotion. The most apparent and obvious are the negative ones, the pain, the longing. The ones that form tears in my eyes and an ache in my heart. But there’s a pride in imagining her growing up, and the joy that would have brought.

Sometimes, for the briefest of moments I pretend it was all different. I ignore the fact that she never came home from the hospital and let myself imagine what it would be like if she were racing around the house with our dog, Lana in tow. My ears fill with the symphony of tiny footsteps and excited squeals. I close my eyes and watch her black hair bounce in the air as she plays. Oh, it feels so good to imagine how those curls have grown since the day she was born. I sit there in that joy for just a moment. And then…

The weight of the world falls back onto my shoulders, and reality floods all my senses like a rising tide, washing all my dreams away.

But that imaginary joy, it still left its mark on me. A hope for what is to come. On that day when that little girl turns around and sees me standing at the gates of heaven. One sweet day.

Until then, I will do my best to thrive here. To build something beautiful from the wreckage that became my life nearly eighteen months ago. And I’ll dream, because no amount of anguish can take that from me.

I’ll dream about life on this earth. I’ll dream about growing old with my sweet husband. I’ll dream about having more babies. I’ll dream about having a farmhouse with a bountiful garden. I’ll dream about finally living next door to my best friend. I’ll dream about holidays surrounded by family.

But most of all, I’ll dream about her until I won’t have to dream at all.

Sometimes, there are answers.

For a few weeks I’ve been struggling a lot with “what if?” What if I had gone to Philadelphia sooner? What if I had pushed my doctors in Florida harder? What if I had told them to put all of the tubes in Aria’s chest and head at birth? What if I had told the doctors to keep fighting?

And then my ultrasound and MRI images from the Children’s Hospital showed up on my doorstep.

As I scrolled through the images one thing became abundantly clear. Aria had no lungs. I mean, technically she did. But when Dr. K said, “She has a small sliver of healthy lung tissue.” It really was just a sliver. A tiny little line of lung tissue pancaked on the side of her chest, smothered by a massive tumor. Seeing it clear as day in those images was both jarring and oddly calming.

She didn’t have lungs. They said it to me a thousand times, but to see it with my own eyes…

You know, some things are just not in our hands, no matter how convinced we are that we’re the ones in control.

It is also not lost on me that Aria lived over an hour, surviving on an underdeveloped, sliver of lung tissue. Maybe we could come up with a bunch of scientific reasons as to why she was able to live for so long, maybe it was God breathing life into my little girl. Either way, it was a miracle.
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Celebrating Easter Sunday when you feel stuck in Saturday.

Today is the second Easter since our daughter was born. The second Easter since she passed away. My second Easter as an empty nester in her mid twenties.

It’s a difficult holiday because of all the things I wish I could do: the egg hunts, the pretty frilly dresses, the big baskets left by the Easter bunny, the children’s books about the resurrection.

But it’s also a hopeful holiday for a grieving heart. Hope because Sunday came for Jesus, and Sunday is coming for me.

It’s hard because there are so many times when I feel like I’m stuck in Saturday. Good Friday feels like it has come and gone, but I’m in the in between phase. Still on earth yet missing my daughter who has gone to heaven before me. I’m still waiting for my own day, when I can hold her in my arms again. And while I try not to live that way, just wishing each day away until I can see Aria again, it is the hope of that day that keeps me going.

While we were still in the hospital after giving birth to Aria, Brian and I had a conversation about Easter and what it meant to us. I said to him, “If there is no heaven, I’m done here. If I don’t have the hope of seeing Aria again, I don’t want want to live another day on this earth.” In this moment, my faith was being rocked and shaken harder than ever before. Was my faith going to overcome my pain? Was I going to keep trusting in a God who was allowing me to lead an earthly life filled with so much agony?

Somehow, despite so many prayers that look a lot more like me screaming angry frustrations at God, I’ve grown to trust Him more than ever before. I’ve leaned on Him in the moments when I’m walking through more than I can handle. He hasn’t always rescued me in the way I wanted, but He has carried me through. I know this because I’m still here, and without Him I wouldn’t be.

I don’t know where you may be in your life today. I don’t know if you are like me, and your heart is hurting in an unimaginable way. But I do know that Sunday is coming. All will be made new. Every tear will dry. And this is why I celebrate. This is why I hope. This is why I live.

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I’m scared of feeling relief.

I posted two days ago about picking the day we would pack up Aria’s room. I haven’t been able to stop the topic from swirling through my mind ever since.

I felt strange after setting the date. I liked the certainty in knowing when that day would come. I could prepare and brace for it, and that felt like a good thing. There was also a lot of sadness as I thought about the reality of never seeing Aria’s room again. It’s the place I run to when the sadness overwhelms me and I need to feel close to her. It is the only place on this earth that I feel totally surrounded by her, and to lose it is incredibly tough.

There is some part of me that looks forward to the day we will pack everything up. I have known for over eight months that this day was going to come. I have spent a really long time dreading this day. It’s been a huge dark cloud that looms over me every time I walk past her room, or spend a few minutes sitting in her rocking chair. I have to constantly remind myself that much like Aria, this room would not be here forever. So a part of me looks forward to no longer having to walk through life fearing this day. I want to let go of this because I have carried it on my back for so long and I just want to feel a little lighter.

But how can I want this? Seeing all the hope we had poured into her room get packed up into cardboard boxes is going to shatter my heart. How could this ever be a good thing?

I guess what I am trying to say is, I feel like letting go of her room is a lot like letting go of her. I know that is far from the truth, but it’s a tough feeling to shake. I don’t want to dishonor Aria’s memory, and I don’t want to distance myself from her. I don’t want to be happy about letting go of something so connected to my memories of her.

And yet… I have hope. I have hope that packing up and starting over in our new house will bring us a lot of joy. I have hope in the possibility of a few of Aria’s things eventually finding their way back into our home, to be used for her future siblings. I have hope that doing all of these hard things will bring us one step closer to a brighter future.

Aria’s Story: The day we left the hospital.

I was discharged from the hospital four days after delivering Aria. I needed to be closely monitored to make sure all of my symptoms of mirror syndrome had resolved, so I was in the hospital a bit longer than normal. Once my labs showed my liver was functioning again and my blood pressure was in a normal range, we were free to go.

Honestly, I was really afraid of leaving. The doctor on call that morning commented that I was probably sick of being stuck in the hospital, but I would have stayed longer if I could. Stepping out of the hospital doors meant I couldn’t hide anymore. I had to face reality and I wasn’t sure I could.

As Brian packed up the room, the lead doctor on our case came in to say goodbye. She hugged me tightly and reassured us that we were not going through this alone. Then she said the most important, and meaningful thing anyone has ever said to me.

I want you to always listen to your heart. You followed your heart with every decision you made for Aria, and every time, you were right. Trust your heart.

I have replayed those words in my head a million times since that day. They have brought me through so many moments of doubt.

After she left, Brian and I stood in the room and wept. For the first time, we understood that Aria was gone, and we had to keep going without her. We looked around the room, replaying each memory of our daughter’s brief life. Once we got ourselves together, and started to exit the room, Brian stopped. “I want to pray for the next family who uses this room.”

The Special Delivery Unit at CHOP is only used by mothers carrying babies with birth defects that need specialized and intensive care or fetal surgeries. Although they perform life saving miracles on a daily basis, they endure many losses. We were just one of many grieving families during our stay. We knew my hospital room would house more families in our situation in the future, and we prayed they would find peace. Our hearts ached as we thought about the parents who would soon know the pain we were feeling. We wished it could be different for them, and their precious babies.

As we walked out of my room and into the hallway, I cradled a colorful bouquet of flowers in my arms. I had decided that if I wasn’t walking out of here holding Aria, I was going to carry something beautiful in her honor. We were stopped every few feet by nurses, given tearful goodbyes, and warm hugs. We were told to send Christmas cards, and repeatedly reminded that we were not alone.

Somehow, we managed to walk out of the hospital and to the car without completely breaking down. Brian started the car and said “Ok, Aria. We are going to do this. We are going to be strong for you.”

As we drove away from the hospital, the sun shined on my face. It felt like a warm embrace, and it was then that I fully realized that Aria was still with me, and always would be.

When past and present collide: On new beginnings and old wounds.

Brian and I spent all of Labor Day weekend on a mission to find a house in Texas ahead of our move in a few short weeks. We went from house to house, trying to shorten our long list of prospects. Finally, we brought our list of over twenty homes down to two. They both had pros and cons, and were such similar houses that it made the choice incredibly tough. Brian loved certain things about one house, and I loved certain things about the other. We had reached a fork in the road.

As we picked each house apart, room by room, trying to determine which would be the one, the stress of the entire weekend began to well up inside me. I was so afraid of choosing the wrong house. This is such a big commitment, and a huge decision. I didn’t want to do the wrong thing. There was something so familiar about this feeling. I had been here before, only a million times worse.

The last few times we made major, life changing decisions we were sitting at a conference table across from our team of doctors and nurses, while I was nearly seven months pregnant. We were sifting through so many different options, trying to save our daughter all while protecting her from any unnecessary suffering. We tried to make the best decisions we could as we fought for her life, but despite our best efforts – we still lost her.

So here I was, sitting across from my husband talking about floor plans and paint colors, trying to tell myself this wasn’t the same, but the stress felt so familiar. I looked Brian in the eyes and asked if we were doing the right thing as tears began to form in my eyes. He immediately began to change his tone to a happy, confident one. He told me he was excited, this was good, and we were going to make the right choice.

I tried to stop the next sentence from escaping my lips, but I couldn’t hold it back. “But the last time we thought we were doing the right thing, Aria didn’t make it.” I knew this wasn’t the same, and I didn’t want to ruin Brian’s joy by bringing it up, but I felt like I was sitting in that conference room all over again.

With the utmost understanding and compassion, Brian grabbed onto my hands, and assured me this was not the same. He said it multiple times as the tears fell from my eyes until he could make sure I was really hearing him. This was not the same. Our story was not going to take another horrible, unimaginable turn.

The next day, after a much needed night of rest, we both agreed on a home and confidently put in an offer. The nervous hesitation still lingered around me, but as soon as we heard that the sellers had accepted our offer, joy exploded.

I’m excited that we will soon be the owners of our first home. I can’t wait to start unpacking, decorating, and making it our own. This home will soon be a place filled with many wonderful memories, and I am so ready to begin.

I have heard it said before, that there will come a day when the pain and trauma of your past will coexist with the joy of your future without negating it. I have a much better understanding of that phenomenon now, and I’m grateful for it.

It’s still tough to leave Florida, because we began our journey with Aria here, and this place holds so many memories of her life. But we will always carry her with us, and leaving here does not mean leaving her behind. She is still just as much a part of this new chapter as she would have been, if she were still in our arms.

We are still the Rose family of three. Two on earth, and one in heaven, ready to take on Texas.

To my friends who are struggling…

I have learned so much about the world through my journey with my daughter, Aria. I have been to hell and back, and experienced things I never imagined I would. In these moments, I interacted with people on a regular basis who had no idea what I was going through, and that really opened my eyes. I guarantee that I have unknowingly interacted with people who are fighting through difficult times on multiple occasions.

But even though I may not know who is struggling right now, or what they are dealing with, I want you to know I still see you.

I know there are days when it’s a struggle to leave the house. I know there are times when it takes real courage to strike up a conversation with someone. I know you are tired. I know you feel defeated. I know you can’t always see a way out.

But you can do this. Breathe in, breathe out. There is a reason that your heart continues to beat without first asking for your permission. You are here. You have purpose. Keep going.

I am no stranger to rock bottom. I called that place my home for a long time. Maybe you are there now. The good news is there is always a way out of that place. You just have to keep moving, keep on searching. You will find the light again, I promise.