Maeve was born with Miller Dieker Syndrome and on the day of her birth, doctors told her parents she would die. Maeve lived for 444 days. Her mother Kirsten shares her experience of loving Maeve and learning to find happiness after loss.
I could talk forever about Maeve. The way her lips curled up so she always looked like she was smiling, the times she would shout at me if I didn't feed her ice-cream fast enough or how soft her perfect little cheeks felt against mine.
Maeve made me a mother and it was certainly a baptism by fire. The day she was born, we were told that our seemingly perfect, tiny baby was going to die. This little girl whose entire body fit into my hands, had lost a little piece of her 17th chromosome at conception and as a result, her life would be cut tragically short.
We found out Maeve would never walk or talk, would be plagued with seizures, possibly unable to swallow and would fight for her life over illnesses most kids barely notice. After her diagnosis, darkness enveloped me. My baby wasn't the baby I'd planned for and dreamed about. She wasn't going to come with me on shopping trips and pick out new outfits. She wasn't going to sit on my knees and ask me to read stories over and over. She wasn't ever going to grow up.
Since the day Maeve was diagnosed, grief has been my constant companion.
For the first month I was drowning. I desperately reached out to other mothers who could soothe my heart and tell me I would survive this. That somehow I could learn to live and even find happiness on this most terrifying journey.
A lifetime of grief and love
Since the day Maeve was diagnosed, grief has been my constant companion. I have spent every day since then living a life I didn't sign up for. Maeve lived for 444 beautiful, wonderful, heart-wrenching days and I grieved for her, and for our lost future, every one of those days.
When Maeve was born, I had an irrational fear that no-one would love her. I thought I had let our families down, not giving them the grandchild, niece, cousin they had dreamt of. But I couldn't have been more wrong. Maeve was utterly adored and treasured by everyone. She drew all of us closer together and taught us to be vulnerable.
I didn't realise it was possible to feel so much joy when grief was ever-present, but Maeve really did fill every day with her sunshine.
Maeve made all of us better and happier. I didn't realise it was possible to feel so much joy when grief was ever-present, but Maeve really did fill every day with her sunshine. I think she was teaching us then that our lives could be full and rich, despite the loss that was to come.
While we thought that Maeve would spend her whole life dying, the reality was quite the opposite. One of my happiest memories is taking her to swim in the ocean. Maeve was a water baby; she loved the bath and we took her swimming in the pool often. She struggled with temperature regulation so we hadn't ever taken her into the ocean, but just after her second Christmas she had a week of really good health and we decided to do it. I wasn't sure how she would react but it was pure happiness.
The bike was laden with oxygen canisters, a suction machine and medication, but we were fulfilling one of the simple, normal dreams we had for her, and we were so happy.
She kicked and splashed around and made her happy little sounds. After a while, I worried she was cold so I lifted her out and started to walk back in. She shouted at me and would not stop protesting. That was a big deal for Maeve as at that stage, it was rare for her to get upset over anything other than seizures. I figured she was trying to tell me something so we went back into the water and she was immediately happy again.
I love knowing that she could communicate her likes and dislikes with me, and that we gave her regular childhood experiences. That same holiday, we were able to take her on bike rides in a special passenger bike that we bought her for Christmas. The bike was laden with oxygen canisters, a suction machine and medication, but we were fulfilling one of the simple, normal dreams we had for her, and we were so happy.
It will be ok
To any newly grieving parent who is reading this, I want you to know that it will be OK. Truly.
When Maeve was first diagnosed, all I wanted was for someone to tell me it was going to be okay. I was surrounded by people who loved us, and a care team who were totally dedicated to our daughter, but it just wasn't enough. I needed a mother who had been where I was, to promise me that I wasn't doomed to a life of despair and pain.
Reaching out to these women is what saved me. They made me realise that I could love Maeve with reckless abandon, and that all the pain would be worth it a million times over.
Reaching out to these women is what saved me. They made me realise that I could love Maeve with reckless abandon, and that all the pain would be worth it a million times over. They encouraged me, shared their darkest and most hopeful thoughts with me, and made sure I was never alone. And I promised myself that one day I would do the same.
So to any newly grieving parent who is reading this, I want you to know that it will be OK. Truly. It doesn't feel like it right now, but you can survive this. I promise. Ten million mothers (and fathers) have walked this road before you. They will hold you up and cheer you on and cry endless tears alongside you. Find your people and lean on them and one day, you will feel strong enough to do the same, because of the love and strength your child has given to you.
Surviving, after.
‘The love between us hasn't gone anywhere. It didn't leave us when she did, and it never will.’
Maeve died in my arms on Valentine's Day 2018. She was 14 months and 17 days old. It was fitting that she chose Valentine's Day, the day we celebrate love, to leave her physical body. Maeve spent her whole life surrounded by love and inspiring love in others. And I've come to realise that the love between us hasn't gone anywhere. It didn't leave us when she did, and it never will. My love for her is endless and it will change and grow, in ways she never got to.
Every year on Maeve's birthday we celebrate her. We buy her a cake (I love making my kids' cakes, but I figured out that I didn't need any extra stress around her birthday), and go somewhere she would have loved.
On her third birthday, we went back to one of the places we had taken her on holiday to as a newborn, and we get a lot of happiness revisiting places we went to with her. I'm still figuring out how to incorporate her into holidays like Christmas and other special occasions. Those days can often feel extra heavy, so I've given myself permission to feel the pain without forcing myself to create new traditions before I'm ready to. Whenever we take family photos on those days, someone will hold a photo of Maeve, and it makes me happy to see she is included. I know that as the years pass, we will find new ways to remember and celebrate her, and whatever feels right to us on the day is OK.
I have learnt one thing in my grief, it is that I don't have to live in sorrow forever.
We have now lived many more days without Maeve than those we lived with her in our arms. The memories have faded, something that utterly terrified me in the beginning, but somehow it isn't as awful as I thought. It feels wrong to even write that down, but if I have learnt one thing in my grief, it is that I don't have to live in sorrow forever.
I can hold on to the happiness and joy and love and wonder that Maeve brought us. I can embrace the sadness and pain, and sit with it, but I don't have to stay there. Sorrow does not prove my love for Maeve. Her legacy is sunshine and light, and although I will forever be defined by her life, I will not be defined by her death.
Maeve has left behind a hole that will never be filled. Her absence will make my heart ache for every day I have left, but her presence is what will carry me through.
Kirsten is Maeve, Murphy and Juniper’s mother, she lives in New Zealand and you can learn more about Maeve and follow Kirsten on Instagram @kirstensf
