We don’t want to be here today.
And yet, we knew this day was coming.
2 weeks ago Evie came into this church for the very first time.
It was for her dedication and many of you joined us on that happy occasion.
Little did we know it would also be her last time at church.
When we were in hospital, some people – when they heard about the age of our other kids, and heard about the nearly 5 year gap between Evie and Alethea.
They asked us: “Was Evie an accident?”
Evie was no accident.
She was planned.
Teresa and I had been umm-ing and ahh-ing about whether to try for a fourth child.
And in the end, the decision was: we’d try before Teresa turned 40.
Never in our wildest dreams were we expecting to bury that same child BEFORE Teresa turned 40.
Our precious Evie was a fighter. There’s absolutely no doubt about that. She fought through 38 weeks in the womb. She fought her way out during birth. In the time it took me to park the car with the kids, after dropping Teresa at emergency, she’d already come out.
She fought to breathe on her own – unassisted. A miracle in itself.
And then she fought through 3 subsequent trips to the hospital. All centred around breathing.
Evie fought bravely for 77 days.
But at the same time, 77 days was nowhere near enough.
We were greedy.
We wanted more – 770 days. 7,077.
Even 78 would have been better.
But the God who numbers all our days…..decided that 77 would be the number for Evie.
And of those 77 days, only 32 were at home. In her own cot.
Evie spent more time in hospital and at a wonderful children’s hospice called Bear Cottage.
While we were at Bear Cottage, I came this quote on their wall:
“We can’t add years to a life. We can only add life to those years”
Right from the get go, we knew we couldn’t add days to Evie’s life.
It hurts so much knowing that I’ll miss out on watching Evie take her first step.
I won’t hear her first word.
There’ll be no toilet training.
Evie won’t get to ride on the back of daddy’s pushbike.
No 1st day of school.
I won’t get to hold her hand to cross the road.
Or give her piggy backs.
I’ll never get to carry her on my shoulders.
I’m not gonna be able to take her out for milkshakes like I do with the other kids.
There’ll be no braiding her hair with my fat fingers.
Mind you, speaking of hair, we won’t have to remove nits.
I’ll miss out on driving her to netball or dance performances.
No driving lessons for that matter.
Today will be the one and only time I’ll walk her down the aisle.
Even though we couldn’t add days to Evie’s life.
We tried our very best to add life to her days.
It was ALMOST a privilege to wake up every 3 hours through the middle of night to feed her. That was like our daddy-daughter date. Our hang out time.
I’ll never forget that tight grip of her tiny hand – wrapped around my finger.
Rubbing my nose along her cheek that chubbed up more and more with each day.
I’ll never forget praying with her.
Reading a Psalm to her. Reading stories.
Singing songs like Be Strong and Courageous to her.
Stroking her hair.
Smelling her skin.
Bath times were our thing!
I’m already missing the cuddles, holding her skin to skin, close to my chest.
I’m missing the squeezy hugs.
Now I can’t give you answers for WHY God decided Evie would have a short life.
But I know for sure, that something that God has taught me has been the truth of these words in Psalm 63:3
Psalm 63:3 says this:
Because your love is better than life, my lips will glorify you.
As much as I wanted Evie to have a long life.
God wanted me to taste and see just how wide, how long, how high and how deep his love really is.
So that today, as hard as it is, my lips will glorify the God who gave us Evie.
I asked our kids what their favourite memory of Evie has been.
Maddie said… Everything.
Elijah said… hugs and holding her skin to skin
Alethea: poo-namis. Poo-namis that result in a change of nappy, her outfit AND her wrap.
When we were leaving Bear Cottage on Sunday, we each wrote a note to Evie on a little cardboard butterfly:
Alethea wrote all our names on it.
Elijah said: “I love you more than anything in the world. Your big brother Elijah:
And Maddie: “Evie – we love you and we will miss you. Evie is magnificent, cute, a gift and special”
Ever since we heard Evie’s diagnosis back in January, the impossible prayer point all along has been.
Number 1 – Evie would make it out of the womb alive so we could meet her.
Number 2 – Evie would get to blow out her first birthday candle.
In the end, God decided to say “Yes” to one and “No” the other.
But that doesn’t make him any less God.
We take great comfort that God himself is no stranger to the pain, the aches we’ve been feeling these last few days.
He’s been in our shoes.
When his one and only Son died on the cross.
Jesus himself – when he wept over Lazarus’ dead body - shed the same tears we’ve cried since Friday.
Even though God didn’t prolong Evie’s life.
We know with absolute certainty that he has the power to resurrect it.
Coz that’s exactly what he did with Jesus.
And as people who trust, follow, believe in that same Jesus, we know that what happened to Jesus will happen to us.
Death is not the end.
Ever since Evie died on Friday morning, I don’t think I’ve cried more in my life.
I’ve woken up, and straight away, the realisation that Evie is no longer in my room not has caused more tears.
And the tears are still there.
I’m not done yet.
Today, tomorrow, and for a long time to come.
But we don’t grieve and mourn as those without hope.
I’ve said all along, I wouldn’t have been able to do this journey without Jesus.
I would’ve fallen apart a long time ago.
I always thought Evie was a celebrity in her own right.
She’s been the most prayed for baby here at church.
Her Facebook group has 623 members.
Some of you here today wanted to be her Facebook friends before Teresa and I!
It’s been a privilege to share Evie with you.
Along the way, we’ve tried not to do pretend.
So please don’t think of us as super-Christians.
Instead, look to the Jesus who has smashed sin. And defeated death!
We know that Evie’s death has hit some of you harder than others.
Maybe it’s brought back memories of a child you’ve lost.
Maybe you or your own kids are sad and grieving right now.
We’ll be praying for you in the weeks and months ahead.
It’s been my absolute privilege to be Evie’s dad.
And even though I’ll have one less child to physically celebrate Father’s Day with this Sunday.
I’ll still be a proud dad of Evelyn Talitha Peiwang Lee.
But for now I hand her over to a better dad. Her heavenly dad. Her perfect dad.
A dad who can give her a resurrected body.
The God who loaned us Evie for 77 days, has now taken her back to be safe in his arms.
Until we hear we hear Jesus say “Talitha Koum”, we’ll forever miss our gorgeous girl.
I remember the day we discovered the term “Trisomy 18” and how crushed we were that our little girl had a genetic disorder and was classified as “incompatible with life”.
She would either not make it to birth or not make it to her first year. She would have severe mental and physical disabilities if she lived. We were crushed, angry, in denial, and felt at times that there was little to hope for. Even now, I feel frustrated and upset because we haven’t had enough time with her!!! We’ve been crying out every day to God to help us because we feel so much pain and we feel hopeless and weak and helpless.
But at the same time, God’s been so kind to us every step of this journey.
Whether it’s the blessings of paediatricians, doctors and nurses, midwives, therapists, volunteers – even the cleaners - that have supported us through this journey. Some of whom are here today. From Westmead, Westmead Children’s Hospital and Mount Druitt Hospital.
We’d especially like to thank the Palliative Care team at Westmead Children’s Hospital. And the wonderful team at Bear Cottage in Manly.
The professionalism, care, commitment and tireless hard work of all these folk makes them heroes in our eyes.
We’d also like to thank each and every one of you. For journeying with us every step of the way. Whether it was
Kind words written
Blankets knitted & crocheted
Feeding our chickens
Feeding our kids
Picking up our kids
Visiting us in hospital
Hugs and tears shared
Sending us texts and facebook messages
You being here today, supporting us and one another, is something we thank God for.
Evelyn’s life has impacted us deeply, and we hope that in her own way, she has brought you some joy too. Here are some things we’ve learnt:
We’ve been learning not to plan ahead too much but to make the most of every moment. Evie’s diagnosis meant that we’ve had to put our hopes and dreams for our daughter’s future away, and focus on enjoying our child for the day that’s in front of us. We arrived for our breech birth at Westmead hospital with nothing prepared (no car seat, no cot, no nappies). She came out in a huge hurry, 5 min after we arrived at the hospital. She emerged bottom first, and needing no help to breath or cry. What a miracle!
Evie’s living has reminded us daily that she is precious, valued and loved. Her inherent value and worthiness is NOT because of how healthy she is or what she can do, and its NOT because of what she’s capable of in the future. She is precious, loved and valuable because she is made by God and loved by Him. The quality of her life isn’t found in her potential – its found in God, who made her, who knows her thoroughly and who has taken her to be with him after a short while here.
God never says oops. He never slips up, he never makes any mistakes. There were errors in Evie’s genetic makeup, but she’s NOT a mistake or error. Her 77 days were precious, beautiful and memorable. Her features and mannerisms were adorable, from her crazy eyebrows, overlapping fingers, almond-shaped eyes, soft hair, pointy nose and lips. She gave us daily, hourly joy and we marvelled every day at the things she was able to do and achieve by God’s kindness: to breathe every breath, to have a strong heartbeat, to consume food, to lift up her head on her own, to graciously accept the shouting and jostling when her siblings fought about who got to carry her first. Our family loved her passionately and will continue to love and miss her.
We’ve learnt not just with head knowledge that God loves and cares for us. This has been a year of extreme stress, ever since we heard about Evie’s Trisomy 18 diagnosis in January. The last 2 months have seen us in and out of hospitals, doctors and juggling syringes, tubes and medications. When we’ve felt alone or overwhelmed, our God has provided just the nurse we needed to provide comfort or care, the perfect message from the Bible to soothe us, or relief in suffering for Evie and for us. We’ve experienced moments of laughter and celebration with each weekly milestone. God knows us and loves and actively cares for us. In the busyness of normal life, its hard to keep remembering that, but we have been made acutely aware of these realities over our Trisomy 18 journey.
Each day, we said this to Evie:
Daddy loves you, Mummy loves you and Jesus loves you most of all.
Evie, we ache. I was your mummy for only 77 days on the outside but I loved carrying you in my womb even before that. Mummy now has an empty womb, an empty car seat, empty bassinet, empty arms and a hollow heart. I will miss your little hand squeezing mine, your irregular heartbeat and deep breaths against my chest as I held you. I wish I had more time, more opportunities to feel your soft hair against my cheek, to breathe in your baby smell. From the time you were born to the last time I held you yesterday, I’ve been trying to memorise every look, the way you feel in my arms, every detail. I already miss singing to you and praying for you daily.
But here is why we chose your names:
Evelyn – our wished for life,
Talitha - our little girl,
Peiwang – hope… Dear Evie, our hope is sure and certain, even as we ache.
Jesus loves you, and you’re free from this unwell body now. Eternal life with your Saviour Jesus in now yours and you are safe. Jesus has defeated death. We are ever so thankful to God for 77 days with you, for the privilege of caring for you and sharing the world with you. We’ve had our last bath, last change of clothes, and last cuddle for now. But we will see you again because our hope is in Jesus Christ and the resurrection.
Evie’s diagnosis from the beginning may have been “incompatible with life”
But our God isn’t restricted by medical opinions.
Instead of incompatible with life, he’s declares loud and clear that Evie is “compatible with the life that really counts. Eternal life”
So many people - family and friends - love you, Evie. Daddy loves you, Mummy loves you, Maddie, Elijah and Thea love you. But Jesus loves you most of all.