CMV Angel Spotlight: Lacey and Ella Grace
In a special interview during awareness month, we are going to hear the story of an angel who didn't get to stay. Lacey, thank you immensely for the your strength in sharing. This is a side we don't hear often, yet a side that is none to real. Advocating doesn't always mean we share the story of those who are still here with us. The ones that we have lost are just as important, and they are reminders that this virus takes so much from our children.
Samantha: Please introduce yourself and your family to our readers: Lacey: My name is Lacey, my husband’s name is Justin. Our daughter’s name is Ella Grace.
Samantha: How did your journey begin? What was going through your mind?
Lacey: We were adopting Ella from a family member. We were so excited for her and could not wait until she was born so we could bring her home.
She was born 3 weeks early on September, 27 2019. We were in the room when she was born. She was not breathing well, was 4 pounds and her liver was enlarged. NICU rushed in and took her and said it looked like she may have congenital defects. Several hours later, they came and spoke with us and said they were treating her for CMV. None of us had ever even heard of it before. They told my husband and I that she may never walk, talk, hear, eat without a feeding tube or breathe without an oxygen supply. On top of all of that, she would be severely mentally handicapped. Ella spent 4 weeks in the NICU, getting antivirals, seizure medications, oxygen and platelets. On her 4th week in the NICU, she also got an infection on top of the CMV virus. She passed away on October 25, 2019. The virus was way worse than what we initially thought it was.
Samantha: Tell me about the support you received after your child passed? Did your physicians or your child’s team offer any services?
Lacey: Our families and friends were there for us for everything. The hospital offered for us to speak with their social worker. Ella’s NICU nurses have checked on us and we have several of them on Facebook.
Samantha: What was on your heart in the days that followed? How did you cope immediately?
Lacey: Our hearts were broken. We were devastated that our baby was gone. We also felt so much disbelief that we lost her due to a virus that we had never heard of.
Samantha: How do you take care of yourself? This journey can feel solitary, like you are in it alone even though you know there are many more out there fighting the same fight. Where do you turn to fill your cup?
Lacey: We talk about her often. We do what we can to bring awareness to CMV. We still have our really sad days, but we have each other and our families to turn to. We have faith in knowing that she is no longer in pain and that we will be reunited with her.
Samantha: A life filled with hard things can teach us some amazing lessons on love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother who has just begun?
Lacey: Going through this has taught me that you truly never know what someone else is going through. Always be kind to people. Ask them how their day is going and really listen to what they say. I’ve also learned that it is “okay to not be okay". It always helps to know that we are not in this alone and that we are always here to talk to someone going through something similar to our situation.
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today? Lacey: Sometimes life doesn’t work out how we hoped it would. Some questions we will never have the answers to. Ella Grace brought over 1,000 people together all across the United States, in prayer, hope and faith. It was a truly amazing thing to experience. We believe she served her purpose here on earth and God brought her back home when she was done.