I’ll never forget the day we got Lucy’s diagnosis. We were in the NICU, preparing to take Lucy home the next day. A neurologist showed up at our curtain in the NICU and asked us to join him in the conference room. With our attending physician and a social worker accompanying him, we knew we were not going to hear good news. However, we had no idea how serious it could be.
After hearing the words: difficulty with feeding and mobility, seizures that are difficult to manage, and a short life expectancy, all the walls caved in. Words were being said, but meaning was difficult to extract. My heart ripped in two, my stomach dropped, I felt light headed and nauseous. I asked the neurologist, “What is it called again?” “Lissencephaly.”
A short time later we were asked if we wanted to meet with a doctor from the palliative care team. Another unfamiliar term…..We were told that families with medically sensitive children almost always share that they wish they would have gotten the support from the palliative care team from the beginning. “Ok, sure…..”
The doctor that we met with could not have been more compassionate. She reassured us that typical siblings love and accept their atypical siblings just the same. That kids with this condition are able to communicate in other ways. Without knowing exactly the kind of support we would be receiving, but knowing that we were going to need help, we set up an appointment to meet with our care team at home in two days.
The palliative care physician arranged for JourneyCare to contact us for the home visit. JourneyCare and the Palliative Care Team at Lurie Children’s Hospital of Chicago saved us. I honestly don’t know where we would be right now without their care for Lucy and support of us in the difficult decisions we would be faced with.
Starting right away, we had an amazing nurse coming to the house once a week. I cannot put into words how helpful and reassuring this was. It’s pretty common to be watching your newborn at home like a hawk. Even more so when you are waiting for seizures to start.
Once a week our nurse came to see Lucy. She was compassionate and caring. And treated Lucy just like any other newborn, instead of just her patient. Most of our focus was on her weight. Lucy was born at 4 lbs 5 oz, had an incomplete soft palate, acid reflux, and failure to thrive. So feeding and weight gain were always a bit of a struggle.
Our nurse always took time to ask me how I was doing. And she listened in a way that she could always offer some sort of help. I was able to ask her questions all along the way about what was happening and what was to come. And she was honest with me. And compassionate. And empathetic. And consistent. And responsive.
And what about our oldest daughter? I was terrified of her seeing Lucy have seizures. I was worried about being able to give her what she needs, while caring for a medically sensitive baby. JourneyCare provided a child life specialist that met with V one on one, and she loved that attention. The child life specialist helped talk with V about what was going on with her little sister through play.
Besides worrying about Lucy’s health, and V’s well being, I was worried about how we would get by with only one income now. How could I leave her and go back to work? Who would care for her if I did? JourneyCare provided a social worker that made sure I was doing okay and tried to help me find sources of nursing and financial support. Unfortunately, living in a state with no current budget and income restrictions meant zero financial support for us.
I’ve thought a lot about how courageous you have to be to work in the palliative and hospice care field. It takes a special person to care for the sick that aren’t going to get better, especially the babies. Ultimately, you know what each family is going through and how things will end. And it’s not pretty. It’s downright the most difficult time in a family’s life. And yet they choose to put themselves there. Palliative and hospice care folks do the work of angels, living angels, that is. And I am forever grateful to all of them.
Our first acts of kindness on May 12 #forlandl were to JourneyCare. And the same will be true on Lucy’s birthday on July 10. #lucyslessons
Here’s how you can support JourneyCare as one of your acts of kindness, if you choose!
My name is Lou and I am a mom of two girls living outside of Chicago. I never would have imagined this, but our oldest daughter is at home and our youngest is not. She will be in our hearts forever. Lucy was an amazing soul and we continue to learn lessons from her today.