Seven years ago today. . .

I spent the next several days after her diagnosis doing what I could for Lorris, to make sure we would be ready for her arrival. 

I called to let my employer know that I wouldn’t be back to work until after.  That was hard because I knew in the back of my mind that after really meant after Lorris had passed away.  I had planned all along to stay home with her and was still planning on doing just that, for whatever time I had with her.  Also, not going back to work was an act of self-preservation.  I worked in an insurance office and dealt with the public.  It was very obvious that I was pregnant and my clients would be asking about my pregnancy and baby every single day.  Innocent questions that they would ask would be bittersweet and I knew that it would be too much for me to handle day after day while I was trying to process everything.

Please don’t misunderstand me.  I was thankful to be carrying her, but I was also beginning to grieve the fact that more than likely my time with her could be very short.  It’s a dance that not many can understand - carrying a baby you know you may never bring home from the hospital. A baby you might never hold while she is still breathing.  I felt her move inside me throughout the day and it was easy to pretend sometimes that she was going to be completely fine.

That was something else Marty and I discussed – a plan for her birth.  We knew that if Lorris survived her Caesarean delivery our time with her was more than likely going to be very limited.  We wanted whatever time we had with her to be spent with us in our arms so we agreed that after the doctors has assessed her and did some basic things that we wanted to hold her as soon as possible. We talked to our doctor and the NICU at the hospital to make sure they were on board with this and we had their full support.

We also began the process of trying to prepare our boys.  We explained trisomy 18 to them in the simplest terms possible and that Lorris was very sick.  I’ll be honest, that’s all I could tell them.  I just couldn’t bring myself to have the discussion with them that she was more than likely going to pass away. That was something I thought we would talk about closer to her delivery.  My reason was simple, I didn’t know how long I would carry Lorris.  I was 26 weeks pregnant and I if I carried her to full term I didn’t want that weighing on their little hearts the entire time.  Marty and I could handle the unknown but I didn’t know how to prepare them for the uncertainties.   I also didn’t want to put more on them than they had to deal with at that moment.

 I really thought we would have more time.  

At 28 weeks I woke to something that I wasn’t used to.

No feelings of kicks or movement from my baby girl.

I laid for the longest time that morning and moved from one side to the other, still nothing.  Those of you who have been through this know, your brain does crazy things to keep you from losing your mind.  I wasn’t ready to accept it.

The doctors had told us that Lorris’s esophagus and stomach were not connected so she was not able to swallow any of my amniotic fluid.  This made me have double the amount that was normal.  I convinced myself in that moment that her lack of movement might be because the abundance of fluid I had.  More to cushion her movement, I thought, that is why I couldn’t feel her.

The day went on and I never felt anything.  I started to grow concerned but just couldn’t say the words to anyone, I couldn’t even let myself think it.  When Marty got home from work I told him that she hadn’t moved all day but that I just knew she would soon.  At this point I had already soaked in a bath tub filled with warm water with no movement from her at all.  I had done everything I knew to make her move. Still nothing. 

Marty called Stephanie who lives right down the street from us and she came over. Bless her heart, Stephanie is my cousin, a dear sweet friend and a nurse who had a stillborn baby years before.  I can’t imagine how she must have felt when Marty called her to tell her our baby wasn’t moving, I’m sure it was awful for her, but she showed up at my door like she always did when I needed her.  Stephanie is another of my “in the trenches” friends.

When she arrived, she suggested several things to try to get Lorris to move.  Still nothing.

“Jenny, I think you need to go to the hospital.”

I just wasn’t ready.

I promised Marty if I hadn’t felt any movement by morning I would go.

As I lay down for bed that night, I prayed that God was just help me to know what I needed to do and the strength to do it. 

At about 4:00am that morning I called the hospital and talked to someone in labor and delivery.

“My name is Jenny Cummings and I am 28 weeks along with my baby girl who has trisomy 18 and I haven’t felt her move in almost 24 hours.”

The nurse in the sweetest kindest voice said, “Sweetheart, why don’t you come on in.”

Marty called his parents to come over and watch our boys while we went to the hospital.  Whatever was going on, I needed to know for sure.  It was time to find out.  

In the back of my mind I felt a little silly.  Maybe I just wasn’t able to feel the movement and she was fine. All that being said, I was still very anxious.

When we arrived at the hospital the nurses greeted me, expecting me.  They quickly escorted me to a room and strapped a wide fetal monitor around my belly.

It took a few minutes but then we heard a very fast “ba boom, ba boom, ba boom.”

“There she is” one of the nurses smiled and said “128.” 

I let out a huge sigh. I smiled and looked over at Marty only to see him shaking his head.

 “I don’t thing that is the baby, I think that is Jenny” he said.

The nurse looked confused and called a few other nurses in and they debated on what we were hearing.  The decided to order an ultrasound to be sure.

A few minutes later the ultrasound tech came in squirted some cold jelly on my stomach and began looking intently at the screen in front of her.

“I’m so sorry. There is no heartbeat.”

And with that she turned the screen around and there was the silhouette of our daughter completely still with the beat of her heart no longer flashing on the screen.

The tears flowed for both of us. Just like that, she was still there, but she was gone.

I looked over at the young ultrasound tech and thought to myself how hard it must be.  Having a job where you deliver good news day after day to mommas only to have to tell a select few the worse news of their life.

“Are you ok?” I asked her. She nodded yes but I could tell she really wasn’t.

A few nurses came in to offer their condolences.  Within the hour my doctor came in to talk with us. He was so gracious and told us both how sorry he was about Lorris.  He also gently began the discussion about how we needed to plan on delivering her. 

Not knowing exactly what was going on or how long we would be, we had asked Marty’s parents when we had left that morning to go ahead and send our boys to school.  We hadn’t got to share the news with anyone yet, and I wanted to be the one to tell our boys.  I desperately wanted to go home, I wasn’t ready yet.  After some discussion our doctor suggested that we go home and come back later that evening and that he would deliver Lorris later that night.  He wasn’t on call, but he said that he wanted to do that for us so we could go home for a while.

Marty made some calls to our close family on the way home.  We made one stop before picking up our boys from school - the funeral home.  Marty’s parents met us there and helped us make arrangements so the funeral home could pick Lorris up from the hospital when we were ready.  Making her arrangements was something that made me feel good, like we were still doing everything that we could to take care of her. 

Then we picked up our boys and told them that Lorris had went to be with Jesus.  They had a few questions, but handled it well and we took them home where we could all just be together.  After we got home, our family arrived one by one to surround and encourage us, doing things that we didn’t even know we needed.  

That evening, August 19th 2011, exactly two weeks after her diagnosis we headed to the hospital to meet and say goodbye to our little girl. I felt a calm that I can’t even begin to explain other than it was a God given peace and comfort like I had never felt.  We had a waiting room full of people there to love and support us waiting for her delivery.  

When I delivered my boys by c-section I had been completely awake during the surgery, but for this delivery the doctor had suggested that perhaps it would be better if they put me completely out.  I think he believed that it may be easier on me. 

I woke up in recovery with Marty with me.  He kissed my forehead and told me I did great.  Then the nurses asked if we were ready to meet our girl. 

They put Lorris in my arms and at 28 weeks she was absolutely whole, complete and beautiful. I immediately noticed her head full of dark hair and she had sweet bushy eyebrows.  I examined her, pulling her pink blanket back that we had bought for her and counted all ten of her fingers and toes. She was tiny, weighing just over a pound but perfect none the less. She was wearing a white gown that the hospital provided.  A group of volunteers made the tiny dresses just for stillborn babies. Marty’s parents and our boys joined us in the room and Maxton held her.  We had promised him early on that he could be the first to hold her since Noah was the first to hold him when he was born.  After the boys had some time, the nurses (they were angels) slowly shuffled the waiting room full of our family into our tiny recovery room so they could meet our little one.

I’ll never forget the love that filled the room that night. It was enough to take your breath away. We all spent time holding Lorris, soaking her in. I don’t know that there was a dry eye in the room. 

The nurses told us to take our time but to let them know when we were ready for them to take Lorris away and call the funeral home.   I realize now that because I was coming out from under the anesthesia my mind wasn’t completely clear, that’s why my memories are a little fuzzy.  I am so thankful that Marty’s brother Brad picked up my camera and took some pictures for us, they are absolutely priceless and they help me to remember.  If I had that night to do over again I would do it different.  I would have waited to send her back.  I would have went to my room after I was out of recovery and spent a little more time with her. Maybe then my memories of her would be a little clearer. I guess every mom who has ever lost a little one wishes for that, just a little more time.   However, I remind myself it was just Lorris’s body that we were holding- her soul was already with Jesus.

We said our goodbyes to Lorris in the surgery recovery room. 

Later that night as they wheeled me up to my room and moved me to my new bed the emotion of the day caught up with me and I began to sob uncontrollably.  My nurse crawled up in the bed beside me, wrapped he arm around my shoulders and said over and over, “its ok."

I composed myself long enough for my boys to come in so I could kiss them and say goodbye so they could head home with Marty's parents. Marty stayed with me and never left my side. I had just survived the unthinkable,  I had delivered my baby girl, stillborn.  Little did I know that God, in the process, was also delivering me.  It was going to take some time for me to realize from just how much.  But thats another story, that is Life after Lorris. 

Lynn

I work for our local health department as a family support worker in the HANDS program. This means I spend my days doing weekly home visits with amazing mommas from the time they find out they are expecting until their little one turns two. One of my favorite topics to cover with them is parenting with empathy.  Empathy is a term many people aren't familiar with and It helps them to understand when I pose the question “Have you ever lost someone that you really cared about?”  Most, if not all of them have experienced some type of loss. My next question is to ask them that if someone were to approach them after their loss what would be more comforting to them?

“I am so sorry you lost your mom, let me know if I can do anything.” (sympathy)  OR

“I am so sorry you lost your mom, I’ve lost mine too and it was one of the hardest things I’ve ever walked through. You miss being able to talk to her and wish you could just call her or see her one more time.  It really hurts right now, by I promise it will get easier with time.” (empathy)

They always agree, the second response is the one that means more and touches them at a different level.  It makes them feel more understood.  When we are hurting, empathy is a balm that helps soothe our heart because we feel like someone understands exactly what we are going through. Empathy makes us feel less alone.

I say all this because today I want to tell you about someone who gave me the gift of empathy when I needed it most.

As people began hearing about Lorris having trisomy 18 a friend of mine reached out and gave me the name of someone just a town away who had a baby with the same diagnosis as Lorris just a few years before.  As soon as I found out about her I frantically began searching for a way to contact her.  Turns out, she had already heard about me and was looking for me too.   

Lynn was a gift, one of many that God would bless me with during that time.  We connected for the first time over the telephone.  While we talked that day Lynn shared with me, ( a complete stranger) the story of her sweet little baby boy James Frederick.  Just a few years before, he had been diagnosed with trisomy 18.  He had passed away right around his due date and was stillborn.  She shared with me how they found out about his diagnosis, her pregnancy, her journey, his death, his delivery, and her own delivery into the life she and her family now live.  A life of joy and hope. 

I shared with her the emotional roller coaster we had been on the past few months, our diagnosis, my fears, my confusion, my desperation. I poured my heart out to her and this stranger quickly became my friend and biggest cheerleader. 

Lynn filled me with encouragement and assured me that there would be a day beyond all of this.  I’ll never forget her words, “Jenny God has picked you and Marty for a reason.  He wanted you to be Lorris’s parents, the two of you, and he’s going to get you through this.” She told me how their son had changed her life, the way she lived and loved and said that even though I couldn’t see it now that Lorris was going to change our lives too- for the better. 

Before we finished that first phone call she asked if she could pray with me and she told me to call her anytime day or night.  She promised that she would be calling in the days to come.  When our conversation ended I knew beyond a shadow of a doubt that she was in this with me for the long haul.  Sure enough, she did exactly what she said she would, she called me, checked in on me, spoke life to me, and poured into me with her prayers. 

She had lost her son and even though she was a few years out I could tell that her feelings were still fresh.  But here is the thing, when she heard about me she chose to relive every single bit of it to help me, a stranger.   She could have chosen to keep it to herself, knowing that it would just be too hard, but she didn’t and for that I am so grateful. Not only did she reach out to me she committed to walking through it with me and lived that out in the days and weeks to come.  She created a space for me to be honest and open about my fears and she related to me in a way that no one else could because she had walked through it herself.  Every single time we talked she asked me how she could pray for me and offered an encouraging word.

Lynn modeled to me something I will take with me all my days.  She showed me what it looked like to "go into the trenches" with someone.  Not because we were already friends and thats what we were supposed to do.  No, she showed me what it is like to say, "I don't know you, but I'm climbing in with you because that is what I'm called to do."  

Friends, if we have lived any time at all we have a story.  We’ve all walked through a rough patch, maybe because of circumstances completely out of our control or perhaps we made some choices that caused us to have to learn some lessons the hard way. Regardless, we possess the ability to give someone out there a tremendous gift.  

The  example Lynn set is the main reason I’m writing about our journey.  What I want more than anything is to be there for a momma who deperately needs someone to jump in the trenches with her so she feels just a little less alone. 

Not Compatible with life

We made it through the weekend and headed to our appointment Monday morning. 

Honestly, I was just holding on to any kind of hope.  In the back of my mind I just kept thinking, that this could not possibly be as bad as it all sounded.  I thought maybe our doctor would have better news than what we had read online, perhaps a scenario where we would bring our baby home with some health challenges but home none the less.

I should back track and let you know that over the weekend someone had given me a copy of Angie Smith’s book “I will carry you” and I had started reading it.  In “I will carry you” Angie Smith tells the story of carrying her little girl who had a prenatal diagnosis that was incompatible with life.  Her story is a beautiful one and I  ended  up reading it three times.   It was such lifeline to me.  I wasn’t very far into it at the time but I remember her talking about her doctor who gave them the news of her little one's diagnosis.  She mentioned his dry sense of humor, cut to the chase bedside manor, yet tender compassion as he treated her. His name was Dr. Fortunato

We started our visit with a short ultrasound and afterward we were escorted to a room where we were introduced to none other than the same Dr.Fortunato.  

He began by asking us if we had any questions.  I wasn't sure where to start so I began with the most pressing.  

“Can you tell us about her condition and maybe help us know what to expect.  We have two boys and we are trying to know how to prepare ourselves and them for what Lorris’s condition could be like.”

I will never forget that moment and what he said as long as I live.

“Your daughter will not live.  Trisomy 18 affects every single cell in her body. I wish I could tell you something different but I can’t. Her condition is not compatible with life.  She will either die before she is born, while she is being born, or shortly there-after.   That is what you need to prepare for.”

He went on to give us a short list of things that he could see on the ultrasound that supported what he had just told us.

Angie Smith wasn’t kidding. He had just put it to us exactly like it was.  

I could not believe what I was hearing.  It all felt like a big lie, a nightmare that I just couldn’t wake up from. Dr. F hadn’t given us even one ounce of hope for our daughter coming home from the hospital alive. There was no good news to be had-none. 

We left his office knowing two things.  We not only needed to prepare for our daughter’s birth, but we also needed to brace ourselves and make preparations for her death and we had no idea what order those two things would happen in. 

So my sweet husband walked me from that office out to our van with his arm around me and said, “Jenny hon ey, what do you want to do now?” 

What do I want to do now?  A list of things came to my mind- scream, beg and plead, fall apart. 

I paused and thought for a moment.  I was Lorris’s momma and I was going to spend whatever time she and I had together taking care of her.  I wanted to do anything I could for her, big or small, whatever that might look like. 

So I said, “Lorris is going to be really small and she needs something  to wear when she is born. Maybe a gown for a preemie.  Can we look for something?"

There was a world of things that I couldn't do for my little girl, so many things I couldn't change. Buying her something to wear, now that was something I could do.  

So that's exactly what we did.  

The call that changed everything

I will never forget the day we found out that Lorris had trisomy 18.  

We left the specialist’s office on Monday morning after the doctor told us that Lorris showed many signs of Trisomy 18.  I had an amniocentesis before we left that day that would let us know for sure.  He told us that he would have the initial report back on Friday and that he would be calling us.  

On Friday August 5th my boys were both in school and Marty was traveling home from a meeting out of town. My family knew I was supposed to get the results and I think they all had a plan to make sure that I wasn’t alone when I did. Throughout the day I had family stopping in and then Marty’s mom and dad came by just before lunch.  They were with me when I got the call.

Even though I was expecting it,  my heart still jumped into my throat when the phone rang. I looked at the caller ID and was surprised to see that the number wasn’t from my specialist’s office but from my regular Obstetrician.

“Jenny, this is Dr. Gass. The maternal fetal medicine group called me and gave me the results of your amnio. They wanted me to call you because they thought that it might be easier hearing it from me. I’m so sorry, but the amnio results show that Lorris has trisomy 18.”

The rest of the details are sketchy for me. I remember hearing,

“I’m sorry.”

“They want to see you Monday.”

“I’m so sorry”

Marty’s mom was standing right beside me when I answered the phone. I’m sure she knew before I could even tell her what the Dr. had said. As soon as I hung up she hugged me, it was all I could do not to fall apart. I called Marty, I hated for him to find out while he was driving but there was just no way around it. He said he would be home as soon as he could get there.  Marty’s parents stayed with me until it was time for them to get the boys from school.  They, along with Marty’s brother Brad and his wife Erin had already planned on taking the boys to a baseball game that night and we decided that they should go ahead as planned.  Taking them for the evening would also give Marty and I some time alone to talk.

Before he got home I had looked online and all the information about Trisomy 18 seemed so hopeless. More often than not mothers wrote about their little ones in past tense referencing the day they got their “angel wings.”  Baby after baby died before their first birthday, often before they were even born.  Occasionally I would find a little one that was beating the odds who had lived beyond their first birthday but not without severe medical challenges

Looking back, I think that is when my grieving officially started.  The life I had imagined for Lorris was not going to happen, it was going to look completely different. 

I just had no idea how different.

I’m going to be completely candid with you.  I was heartbroken, but I was also scared to death. 

Scared of her dying.

Scared of what her life would look like if she lived.

And if I’m being completely and totally honest it was hard to say which scenario was more frightening to me.

I was terrified that I did not possess within me what was needed to deal with any tiny part of it all, let alone all of it.

When Marty got home that evening he sat for the longest time not saying a word.  I can’t imagine what that whole day had been like for him.  Being on the road, getting the news, knowing the reality he was coming home to must have been heartbreaking. He couldn’t find the words to comfort either of us so he sat in silence for the longest time. I finally climbed up in his lap, cupped his face in my hands and the tears flowed for both of us.  We sat like that a long time in the dark of our living room. 

One thing I remember Marty saying was, “Jenny honey, Lorris isn’t going to live, you know that right?”

My response was, “We don’t know that for sure, let’s wait until Monday and see what we find out.”

Looking back on how things unfolded later with her birth, I really believe with all my heart that Marty just knew.  He wasn’t being negative, he just knew.  God gave him that.

Our boys were going to be arriving home soon and we decided we would wait until after our appointment Monday to tell them about their sister’s condition. I couldn’t prepare my boys because I wasn’t even close to being prepared myself.   

the Next thing

Marty and I were driving home from Bowling Green tonight and as the sun was going down in the distance I said something out loud that I have been thinking for a couple of months.

“I’ve really let myself down.”

I knew I needed to explain.

“My blog, at first it was so easy to write our story until one day it wasn’t for so many reasons.”

I had written about everything leading up to our daughter's diagnosis and then. . . well then life happened, I got really busy with life and work and when I had moments of stillness I didn’t want to clear my head to write to finish telling her story.  It never seemed like the right time.

Then June began and I took some time to remember and to write and it began to pour out again word after word.

I sat in the car tonight talking to Marty about the busyness of life and how sometimes the words come easy and sometimes, well not so much.  I finally mentioned that I just didn’t know how to pick back up again where I left off and he said with such wisdom, “Maybe that is a blog post in itself?”

Maybe it is. 

How do you start again?  Maybe you can relate? You started something some time ago only to lay it aside for a season, but you sense with everything inside you it is time to pick it back up again.  How do you start again when the enemy wants more than anything for you to leave it laying right where it is?

Well, you just start where you left off, with the next thing.  Just do that next thing, whatever it is don't over think it. Friends don’t beat yourself up for a season that you temporarily put away whatever dream or goal you had.  If God still has placed it on your heart, if it’s still there, pick it up again, go for it.  

A restart isn’t failure.

Tonight I am doing that next thing and picking back up where I left off.  When I started my blog last August I wanted to finish telling Lorris’s story before her next birthday and I am going to do just that.

If you are new to the blog and want to catch up from the beginning you can find my very first post here or if you would like to read my last post the click here

 See you very soon!