God’s perfect gift

3rd December 2016

‘Your daughter is special… she’s going to be a world changer. When the world shuts her out, she won’t take no for an answer.’

This is what the stranger in line behind at us at the pizza place says. I’m a little taken aback. Charlee is one year old and is the happiest, most pinch-able little girl on the planet. I can’t picture her doing anything, except loving someone to death.

That was one year before the doctors told us that Charlee had a genetic deletion of her FMR1, FMR2 and IDS genes – a deletion big enough to have killed her if she had been a boy.

Sometimes Fred asks me: ‘Why can’t Charlee talk?’ or ‘Why does Charlee scream?’ The only explanation I have come up with that he can understand is that your body is like a puzzle and sometimes there can be some missing pieces. I don’t particularly like that explanation, because to me nothing is missing – she is perfect, a perfect reflection of God’s grace in my life.

A gift of love

Charlee sees the people that most of us would pass by. She befriends the elderly lady that no one sees come into the church; she holds the hand of the little girl in a wheelchair waiting with her mum; she blows kisses to beggars and paints a smile on sad faces. I think she is amazing.

One Sunday we piled into the car with friends and headed to the children’s ward at Mulago Hospital. Mulago is the largest government hospital in Uganda and is very over-populated and under-resourced.  I was afraid of what we might find there, but Charlee marched fearlessly in and started talking to mothers, praying for babies and fitting right in.

‘Charlee’s disabilities don’t limit her, they make her perfect – just the way God intended her to be’

She was very alert in taking everything in. A mama with three-month-old preemie twins was more than happy to let Charlee hold one for a bit. She has been in the hospital alone since their birth and specifically called us back to pray with her, even though she is a Muslim. She just needed someone to care.

Charlee and a friend spent time with a sick boy who was tucked away in the corner. They stood there with him and held his hand, even after his dad said, ‘It doesn’t matter.’ These little girls see the hope in the situation.

A little guy, Matthew, was one of the only babies here alone. Every time we walked away, he would cry, so she would go back and kiss him, and then we would move on and she would go back and kiss him…

A gift of hope

The greatest gift I received last Christmas wasn’t something I could unwrap or tuck away under the tree – it was a Christmas party for a group of special needs kids.

The plan unfolded between us, a small Ugandan Baptist Church and two other MAF staff and their families and everything fell very effortlessly into place. I was so excited, I could hardly contain myself!

The day was truly beautiful. When we arrived in the little room at the church all the parents and kids were already singing and dancing…  pure joy on their faces. The caregivers went around the room and introduced themselves and their children through a translator; most of them referring to these kids as ‘their greatest blessing’ or ‘my gift from God’.  Something that was so amazing to hear in a culture that can view them as rejects.

Every family received a bag of groceries stocked with soap, salt, sugar, milk, dried beans and peas, maize flour and other supplies to feed the family over the next week or more. The best part of it all was that every child received a wrapped gift.

There was one girl who was carried in at the very end. She had missed all the food and festivities, and even all the presents had been given. Charlee didn’t hesitate – she took the last gift – her gift – over and gave it to the girl.

A gift of joy

Being a parent to a special needs daughter is, well, special. I would have never chosen this for my family – or for Charlee – but now that’s it’s here, I would not ‘un-choose’ it either.

Days can be hilarious, or hard, or humbling… I rejoice over the small things (dressing herself is fun, yet ‘make-a-huge-mess’ new skill!) or get upset at the comments people feel at liberty to speak, just because she’s not your average almost-seven-year-old… but mostly our days are filled with joy. I’m convinced that more joy passes through her heart in an instant than some of us experience all year.

She’s taught us to be gracious, understanding and compassionate. She’s taught me that anyone can be a warrior, if they need to be. And most importantly, she’s shown us that everyone has something real to offer. Charlee’s disabilities don’t limit her, they make her perfect – just the way God intended her to be.