This is the story of Lucy, written by her mother Lori. MTM founder Priyanka Saha found Lori’s blog ‘Lessons from Lucy’ when she received Lily’s diagnosis. After reading and re-reading Lori’s blog posts, Priyanka left a comment on one of them and was stunned when Lori wrote back with words of advice and support.

Lori shared her wisdom and insight into Miller Dieker Syndrome and Lucy’s story became a true guiding light for Priyanka and her family. In many ways, Lucy and her mother’s generosity in sharing their journey is the catalyst for The MTM. It is our honour to share Lucy’s Lessons with you and we hope you can gain the wisdom from Lucy that we did.

A happily anticipated pregnancy

My husband and I were overjoyed to welcome a second daughter into our family. I could already see the two of them, chasing each other at the park or arguing over who would get the bathroom first. I wondered, would Lucy be more like me or her Dad? How would she and her older sister be alike? What would they butt heads about?

I felt pretty relaxed about a second pregnancy. I thought this would be a breeze now that I knew how everything was going to go. I was going to be the laid back, easy going, second time Mom. That joyful, carefree, blissful time in my sweet little family lasted for about 20 weeks.

I had switched doctors at the beginning of my pregnancy because the practice that delivered my older daughter was no longer doing deliveries. It was a completely different experience then the blissful pregnancy of my oldest daughter. The dread began at about 24 weeks when an irregular ultrasound started to raise some concerns.

After first being told that the baby was quite active, making it difficult to get clear images, I was later told alone, as I had sent my husband on his way to pick up our oldest daughter, that they suspected a hole in Lucy’s heart. I can still remember the phone call to my husband, as I walked along the icy shores of Lake Michigan, my hands stinging from the cold as I held the phone.

Prenatal diagnosis

When heart concerns arose again, that is when I knew, from the depths of my soul, that Lucy was going to die before me.

Curiously and over time, the heart concerns lessened, but it led to many more tests and concerns about Lucy’s brain. We did further scans and were ultimately told it probably wasn’t anything to worry about. I was so far along in the pregnancy, we decided to proceed, knowing that there was no way to change the way that Lucy’s body was made and we hoped for the best.

From that point on, the pregnancy was terrifying and traumatizing. When heart concerns arose again, that is when I knew, from the depths of my soul, that Lucy was going to die before me. I hoped and prayed that everything would be okay and trudged my way through the pregnancy. By the end of it, I was having non-stress tests every other day, but we still had no diagnosis or prognosis. I would be induced two weeks early, as Lucy was on the small side and we had been prepped for a NICU stay, just in case.

Needless to say, the calm, cool, collected, second time Mom was long gone. I feared birthing Lucy and longed for it at the same time. My heart knew that Lucy was going to die and I was terrified that it would be during her birth, yet I longed to meet our little beauty.

Lucy is born

Diagnosis day was the worst.,, The silence walking down the hall was deafening. I could not feel my legs, yet they were propelling me forward to be delivered the most devastating news I would ever receive and that would change everything that I had known about life up to that point.

Lucy’s delivery was fast once things got going and initially, things looked great. She didn’t even need any oxygen. It broke my heart having her in the NICU while I was down in my room after labor. Even worse, two days later I left the hospital alone in a ride share without her.

I returned back to the NICU every morning for the next two weeks. I’d spend the day with Lucy watching her like a hawk, trying to make sense of what was happening, and then returned home to my spunky three year old in the evenings. Even though my newborn was not at home, my nights were interrupted by pumping sessions, incessant worry, and extreme anxiety.

There were lots of ups and downs in that two week NICU stay. Two days after birth, her cleft palate was discovered. From there, we tried to get an idea of how all of her other organs looked. She started to eat from a special bottle and passed her hearing test, but most of the big tests kept revealing serious medical needs.

Diagnosis day was the worst. Our neurologist arrived at our pod in the NICU and asked us to come with him. Just typing this, nearly six years later, still makes my heart race. The silence walking down the hall was deafening. I could not feel my legs, yet they were propelling me forward to be delivered the most devastating news I would ever receive and that would change everything that I had known about life up to that point.

I am no longer the same person I was before that paralyzing walk down the hall. Every person that I love, my family and close friends, lives’ were changed by the information shared in that tiny room, on that dark day in July 2015.

My husband and I held each other and wept. All we wanted to do was take Lucy home and love her. So that is what we did.

The neurologist told us that the MRI had revealed that Lucy’s brain was smooth due to a condition called lissencephaly. He went on to say that due to this condition Lucy would never walk or talk. He said that she would have difficulty feeding, maybe even failure to thrive and that she would experience seizures that would be difficult to manage.

Suddenly the walls were closing in and I was suffocating. I was nauseous and dripping sweat and I could not produce words. The medical specialists and social worker left the room, and my husband and I held each other and wept. All we wanted to do was take Lucy home and love her. So that is what we did.

Lucy’s lessons

Lucy opened my eyes to the world of special needs children and all of the amazing, warrior families that there are, fighting for their children every day.

Lucy taught me so many things about myself and about life. Suddenly, our lives had changed, and it was not going to be how we hoped and dreamed. It broke my heart to break our loved ones’ hearts. Lucy showed us how special and supportive our families and friends are. She taught us how special ordinary days are. I could go on forever about all of the things that she taught me. Lucy taught me how strong I am. She opened my eyes to the world of special needs children and all of the amazing, warrior families that there are, fighting for their children every day.

I did the best that I could to support and care for Lucy, while doing the same for her older sister. I was so devastated that we had prepared her for a little sister, and that Lucy would be her first experience with death. How could this be? What did I do to deserve this? Why us?

I tried to create as many happy memories as possible, with our sweet little family of four, all the while, advocating for my baby who had a condition that many medical professionals we encountered, seemed to be unfamiliar with.

We had several specialists to meet with, therapies to support Lucy’s development, doctor’s visits that we juggled with play dates and activities for our curious, spirited toddler.

Once you picked Lucy up, it was hard to put her down. She would draw you in with her snuggles and smile. She loved her big sister and would light up whenever she heard her voice. She and I were inseparable and would rock around the clock, as she rarely slept longer than 2 hours or so.

Even when she did, I woke up to pump, as Lucy fed exclusively from a bottle. She was just so tiny, so sweet, and so innocent. It broke my heart that her body was not made for this world.

We had a palliative care nurse visit once a week and Lucy did quite well adjusting to life at home. Lucy went on adventures to local parks and to the zoo with her older sister. She travelled to her grandparent’s house and had visits from friends. She dressed up for Halloween and went to the neighborhood parade. She went to our favorite local Italian ice shop on Sundays. She spent her only Thanksgiving, loved and held by both sets of grandparents and great aunts. She brought our family closer together, just as babies do.

Apnea episodes begin

I will never forget the tenacious earth angel doctor that came with us to have the nurses remove the tubes and send us on our way home. We were determined to take her home, love on her, and keep her comfortable.

Lucy’s overall health was good for about five months until she started having apnea episodes. I resuscitated her at home the Sunday after Thanksgiving and the next thing I knew, she and I were flying down the highway in an ambulance to the emergency room.

After trying to intubate her, only to discover her airway was too small, I asked to speak with the palliative care team. We spent 2 nights at the hospital and that is where we signed her DNR. I will never forget the tenacious earth angel doctor that came with us to have the nurses remove the tubes and send us on our way home. We left the hospital not knowing how many more days and nights we had with Lucy, but we were determined to take her home, love on her, and keep her comfortable.

It was beyond difficult for us, but we decided not to medicalise our daughter’s life. That is what we believed was best for her and our family. Lucy died at home, surrounded by her loved ones on December 12th 2015 at five months and two days of age.

What saved me after Lucy died

If you are reading this, and you too are struggling with a life limiting diagnosis for your child, please keep going.

The tribe that I have found as a result of this experience is what saved me. My husband saved me. My daughter’s pediatrician who realised I was having mental health struggles saved me. My oldest daughter saved me. Lucy saved me. My therapist saved me, EMDR therapy too. Live music and gardening saved me. Writing about the lessons I learned from Lucy saved me. Being active through exercise saved me. Meditation saved me. Feeling the feelings I was having, saved me. My family and friends saved me.

If you are reading this, and you too are struggling with a life limiting diagnosis for your child, please keep going. When you are ready to, find your tribe. Lucy taught me not only to advocate for her and my oldest daughter, but to advocate for myself.

I am proud to say that my timeline on grief for Lucy is forever.

I needed lots of time and therapy to process the trauma that my family had just been through. I tried not to put any unnecessary pressure on myself in my grief. I learned to speak my truth and in doing that, I found others that did too.

And that helped ease my isolation in my child loss, my grief, and my trauma. I also learned the difference between the paralysing effects of my trauma and the beauty of the grief that I have, and I always will have, for my sweet Lucy. I am proud to say that my timeline on grief for Lucy is forever.

This whole experience has also challenged the beliefs and behaviors that I have around death in our society. Death is as natural as birth, yet we shy away from discussing it. People think that they are sparing me by not saying Lucy’s name or asking about her, or even sharing stories about her. However, that is the greatest gift that anyone can give me. Please say her name. Please remember her. Please ask me about her.

Kids like Lucy are the special ones that can guide us if we let them. They are the ones that put everything into perspective. My hope is that in sharing our story, we can give each other the grace to make our own decisions for our own families, without judgment. We all deserve that. If I can change the stigma around palliative and hospice care, even for one person, that is also why I am here. Let us all give each other the grace and respect to do what we believe is right for us.

Lucy shows me that our souls are connected and that she is still with me. While I would give almost anything to have her in my arms every day, I’ve learned to accept that she can’t be. So I carry on every day, one foot in front of the other, trying my best to live the lessons that sweet Lucy has taught me.

You can connect with Lori and follow her story on instagram @lessonsfromlucy and read the blog at http://www.lucyslessons.com/ Lori has recently been writing a book which she plans to publish next year. We can wait to read it.

Lessons from Lucy