Lulu's story

Lulu's story

I have worn many different hats in my life: mom, wife, daughter, sister, friend, co-worker, volunteer. But one hat that I never imagined I would don is that of “angel mom”. I became an“angel mom” on the day that I learned I would have to say goodbye to my youngest daughter, Elizabeth ~ fondly known as “Lulu”. In December 2011, my husband Doug and I were overjoyed to learn that we were pregnant with our fourth child. At the time my other children – Catie, Jack and Maggie – were 6, 5 and 11 months old. The prospect of growing our family by one led to visions of bunkbeds, a minivan and family vacations where we were perfectly paired to go on rollercoaster rides together.

Little did we know that that joy and excitement would soon be shattered by devastating news. At my routine 20-week ultrasound, I lay patiently on the exam table. My husband was in graduate school at the time, so I was alone at this appointment – but I was not worried, because I had successfully made it past the “magic” 12-week mark, after which I assumed nothing could go wrong. Until it did.

As the technician began the exam, I chatted with her about how wonderful her job must be, sharing good news with so many parents. Little did I know that the challenging part of her job was about to unfold. She suddenly became quiet while slowly and repeatedly moving the wand back and forth over my belly. The only thing I remember her asking was, “Did your doctor recommend genetic testing?” I knew instantly that something was wrong. She left the room to get the radiologist. My head began to spin, I became nauseous and I felt like I could not see. When the radiologist arrived, she stated that there were several markers on the ultrasound that suggested my baby had a chromosomal abnormality. I did not hear much of anything after that, except for the terms “Down syndrome”, “Trisomy 13” and “Trisomy 18.” The radiologist recommended further diagnostic testing. I am not sure if I responded - but I do know that I quickly left the hospital and proceeded to the parking lot, where I called my husband and cried so hard that I could not drive home, because I could not see beyond the tears.

When I finally arrived home, I promptly went to the couch, where I pulled a blanket over my head and cried until my husband arrived home. After he put our kids to bed, he came down to check on me. I insisted that we not tell anyone about the news. My parents will be devastated, I thought, and our kids will be scared. I could barely put one foot in front of the other – how in the world could I possibly support my family while trying to process this devastating news myself? Easter was just a week away, so we decided to make our appointment for further testing to determine the diagnosis and find out baby’s gender, and then we would share our news with our parents and siblings after the holiday. I needed time to figure out how to help my children understand this unthinkable situation.

Further testing revealed that our baby was a girl and that she had a chromosomal abnormality known as Trisomy 13 – she had significant malformations of the heart and brain that suggested she would not live long after birth, if she even made it to 40 weeks gestation.

For the next 17 weeks, I went to work, cheered on my kids at their t-ball games and smiled and told everyone I felt great. Because what do people ask you when you are pregnant, but “How are you feeling?”

I was definitely in denial – but I knew it was what I needed to do in order to survive. At night I cried myself to sleep and wondered if my baby would still be alive when I woke up in the morning. My husband called that part of my pregnancy “the sentence.” It turns out she woke me up every night with all of her kicking – because she was one strong baby!

On July 3, 2012, I was given the wake-up call that forced me to face the reality that my baby would be arriving soon: we were in a minor car accident, and I needed to go to the hospital to make sure I was not injured. I was so afraid that my daughter would be born that day...and I was not ready! No bag, no clothes, no camera...nothing. I felt like I would have failed her if she were born then, because I had not prepared for her arrival. Thankfully, I was able to go home. It was then that I went into full “Mommy mode” and began to prepare for the moment that I still could not believe would soon be my reality – saying hello and good-bye to our daughter.

We finally shared our heartbreaking news with extended family and friends. Despite the outpouring of support, I found myself closing myself off from the world around me, so I could focus on that precious time that remained before my daughter would arrive. Honestly, I did not want to answer people’s questions, or feel that I had to comfort others. I had no room in my heart for that at that moment.

I spent the next 2 weeks preparing, just as I would have prepared for any of my children’s special occasions, except the details were a little different. Along with my husband, I wrote a birth plan; I signed a Do Not Resuscitate with the help of my obstetrician; I choose a special burial gown; I met with the funeral director...and most importantly, I carefully choose her name. We knew we had found the perfect name in “Elizabeth” – which means “consecrated by God.” I felt so deeply that my daughter would be a special gift whose brief life would have tremendous meaning for myself and so many others...and boy, was I right.

On July 19, 2012, my husband and I walked into Little Company of Mary Labor & Delivery Unit and were welcomed with warm hugs and smiles. Everyone knew I was “that mom”. A nurse that I happened to know from my childhood walked me down the hall to my room, holding my hand the whole way. When she asked if I needed anything, I told her I wished there was a rocking chair in the delivery room, because I knew our time with our daughter would be brief, and I wanted my family to be able to cuddle and rock her. The nurse hustled away – and returned 15 minutes later dragging a rocking chair into the room.

While I lay in preparation for my delivery, I was cared for by the most attentive nurse. When shifts changed, she asked me if she could stay so she could hold my hand during my delivery. What I feared would be the most terrifying moment of my life soon turned into the most beautiful experience I could have imagined. After a few hours of labor, my beautiful daughter, Elizabeth Marie, made her grand entrance with a cry that was music to my ears...she was alive! I had requested that she not be whisked away, but instead cleaned and then placed in my arms. Time was of the essence. The lights were dimmed, lullabies were playing, the doctor and nurses surrounded us, my family joined us and many, many pictures were taken by a volunteer photographer from a group called “Now I Lay Me Down to Sleep”. Baby Lulu was baptized by a dear priest friend who woke up and came to the hospital as soon as he heard she had been born. My children arrived, and they read books to Lulu and sat with her in the rocking chair. There were many tears, but also so many smiles. My heart was bursting with love for my daughter.

This beautiful experience continued, but was interrupted frequently with scary moments when Lulu would stop breathing. The nurse on the next shift knew to quietly check her heartbeat without my other children noticing – we didn’t want them to be scared. When Lulu had stabilized, our nurse and doctor even pushed another bed into the room so my husband and I could rest. Our nurse cuddled Lulu and walked back and forth through the room with her until we awoke. What a gift!

This little lady of ours had grand plans. She wanted to stick around and let us love her as much as possible. Little did we know that 2 weeks later, we would be bringing her home! While it was truly a blessing to bring our baby home, we were not prepared at all – so we were terrified.

We had a wonderful hospice nurse assigned to us, who guided us as we tried to carry on our lives as normally as possible, but still wondering when God would call our Elizabeth Mariehome. My greatest fear was that she would pass away while one of my children was holding her. How on earth would I manage to support them through that experience?

We made the most of our family time at home and treasured every moment with our Lulu. I had “big brother”, “big sister” and “little sister” shirts made for the kids and took their picture – LOTS of pictures! A music therapist from the hospice program spent time with my kids, inviting them to write a song and process their feelings about their little sister. We celebrated Lulu’s birthday every week with cupcakes, a candle and a visit from her cousins. We made handprints and footprints of all of the kids, so I could hang them on the wall and remember these precious moments for years to come.

As time passed, it became apparent that our Lulu would be leaving us soon. She had repeated episodes of apnea where should stop breathing for long periods of time. Our hospice nurse came on several occasions because we thought Lulu had passed away – only to have her start breathing again when I held her on my chest. She was not quite ready yet.

On the night of August 15th, the feast of the Assumption of Mary, our Elizabeth Marie took her last breath while grandma rocked her in the rocking chair. I then held her, kissed her, bathed her, and dressed her in the special gown I had picked out weeks before. She had waited until her brother and sisters were asleep. I thanked her for that.

After bringing Lulu to the funeral home that night, we came home to a very quiet house. I sat down and wrote an email to friends and family, letting them know that our baby girl was at peace. I then tried to sleep but awoke a little while later, with the sudden realization that my arms were empty.

You see, for the 37 weeks of my pregnancy, I held Elizabeth in my womb. For the 4 weeks we were blessed to have her in on earth, we always held her in our arms. And now she was gone and I felt empty – no kicking in my belly, no warm baby against my chest. My heart literally ached. Who was going to hold me? How would I survive?

In the days and weeks ahead, I was held...

I was held by the doctors, nurses and chaplains at Little Company of Mary Hospital. They called to check on me, they attended Lulu’s memorial service, and they graciously welcomed me when I made many visits to say hello, to visit the room where Lulu was born (because the building would soon be torn down), and to bring them tokens of thanks and remembrance. They were there for me during the most painful moment of my life, and for that I am forever grateful.

I was held by my parents, my siblings and my friends. They decorated my yard with beautiful butterflies, each with a special note. They wrapped pink ribbons around the trees on our block. They took my kids to the park so I could plan the memorial service. They set up a meal schedule, so I didn’t have to worry about preparing meals for my family. They left me sweet notes in my mailbox and flowers between my doors. The hugged me and sat quietly with me. They let me tell my story over and over again, and they let me cry when I needed to – without judgment.

I was held by my children. Despite the unthinkable experience of losing a sister – a baby sister, for that matter – they were so resilient. They were the reason I got out of bed each morning and tried my hardest to be strong. They still talk about Lulu all of the time. They wonder what she would look like. They wonder who she would have sat next to on the roller coaster. They truly miss her and love her, just as siblings should. My little angels on earth will forever keep the memory of our angel in heaven alive.

I was held by my husband, Doug. I know he was aching so badly inside, but he still managed to go back to work to help maintain some normalcy in our suddenly abnormal world. He came with me to perinatal loss support group meetings. He was open and honest about his grief. He was my rock.

I was held by God. After having lost a friend in a devastating fire and then my 2-year-old niece to a brain tumor, I was struggling with my faith. Where are you, God, I often wondered? How could you let this happen to me? What I soon discovered was that God was there every step of the way, his presence strengthened by all of the prayers from family, friends and even strangers. When my heart ached, I like to think that God was actually holding the broken pieces of my heart together in his hands.

Most importantly, though, I was carried by my daughter, Lulu. She was undoubtedly the strongest little baby, despite her many complications. She had a beautiful soul and she taught me that life is about being courageous, having faith, and sharing love and light with others.

I wear the hat of “angel mom” with pride because it will always remind me that Lulu’s life mattered. Her brief life is an integral part of my story. It is a chapter that I will continuously read and share with others...until my final chapter, when I can hold her again.

Susie Schultz