Her sis­ter’s keeper

Her twin daugh­ters looked so alike, but mother’s in­stinct told Brenda Reeves, 45, that all was not as it should be...

Pick Me Up! - - CONTENTS -

In March 2002, I re­ceived the worst phone call of my life

Perched in her high chair, my 10-mon­thold Han­nah sud­denly came out with it. ‘Mama,’ she bab­bled. Her first word! ‘Clever girl,’ I gushed, giv­ing her a kiss.

Then I pecked her twin Lexie on the top of the head.

‘I won­der if she’ll have the same first word?’ I said to my hubby Richard, 28.

But as the words left my mouth, I felt a stab of doubt.

See, the girls weren’t iden­ti­cal, but they looked so alike that some­times I did a dou­ble take.

Same tufty blonde hair, same blue eyes.

I couldn’t re­sist dress­ing them in the same pink out­fits, right down to their frilly lit­tle socks.

But looks were where the sim­i­lar­ity ended.

While Han­nah was bab­bling away, find­ing her first words, Lexie hardly made a peep. Apart from at night. As Han­nah slept soundly, I’d pace the house with Lexie while she was wide awake.

All ba­bies are dif­fer­ent, I told my­self. And Lexie was such a happy look­ing child, al­ways had a big smile on her face. So surely noth­ing could be wrong. I pushed the wor­ries to the back of my mind – but as time went on, the dif­fer­ences be­tween my girls be­came more ob­vi­ous. And when they were 8 months old, that’s when I voiced my wor­ries for the first time to Richard.

‘I’ve no­ticed Lexie isn’t de­vel­op­ing at the same rate as Han­nah…’

I said one night over din­ner.

‘Me too,’ he ad­mit­ted.

So we took Lexie to see a pae­di­a­tri­cian here in New York state, USA, for an as­sess­ment.

She’ll prob­a­bly tell us we’re mak­ing a fuss over noth­ing, I thought as we ar­rived.

But af­ter our girl was ex­am­ined...

‘Lexie ap­pears to have low-mus­cle tone around her mouth and poor mo­tor skills,’ the doc­tor ex­plained. ‘I think it’s best we re­fer her to a neu­rol­o­gist to carry out more tests.’

Over the next year, Lexie saw neu­rol­o­gists and con­sul­tants.

Then, in March 2002, I re­ceived the worst phone call of my life.

‘I’m afraid Lexie has An­gel­man syn­drome,’ the neu­rol­o­gist said.

‘What’s that?’ I said, feel­ing my chest tighten.

‘It’s a rare ge­netic dis­or­der that mainly af­fects the ner­vous sys­tem,’ he ex­plained. ‘It doesn’t af­fect life ex­pectancy but causes se­vere phys­i­cal and in­tel­lec­tual dis­abil­ity.’

He told me the symp­toms in­cluded hav­ing a small head, speech prob­lems, seizures and sleep prob­lems. He was de­scrib­ing our Lexie per­fectly.

I had to come to terms with the fact that she would never speak, would re­quire con­stant care and at­ten­tion. Then, the doc­tor men­tioned an­other symp­tom that made my heart break.

‘Chil­dren with An­gel­man al­ways ap­pear to be smil­ing,’ he said. ‘They tend to have happy, ex­citable na­tures.’

I’d al­ways adored Lexie’s happy smile.

‘I’d no idea it was a sign she was poorly,’ I wept.

Hang­ing up, I looked at my girls. Still with match­ing out­fits and blonde curls. But now fac­ing dif­fer­ent fu­tures.

Would Lexie live a good life? How will Han­nah cope? Would this come be­tween them?

Heart­bro­ken, when Richard came home from work later that day, I told him ev­ery­thing.

‘We’ll take each day as it comes,’ he said, pulling me in for a hug. It was all we could do.

As the girls grew up, Lexie’s dis­abil­ity took a toll on our fam­ily as she was on a lot of med­i­ca­tion and needed round-the-clock care.

Things were dif­fi­cult but we

tried to stay pos­i­tive.

Lexie al­ways ap­peared with a smile – but on the flip­side, she suf­fered from epilep­tic fits, couldn’t speak and would have the men­tal age of a 4-year-old, even when she would be­come an adult.

It was tough watch­ing Han­nah reach mile­stones, like learn­ing to ride a bike, when Lexie didn’t – but we tried our best to in­clude Lexie as much as we could.

I was wrong about one thing. Lexie’s con­di­tion never came be­tween my girls.

They still re­mained to­tally in­sep­a­ra­ble.

A mag­i­cal bond…

The girls grad­u­ally grew up, – and while Han­nah knew her sis­ter was dif­fer­ent, she didn’t think any­thing of it. Lexie’s not speak­ing wasn’t a big deal to Han­nah.

They seemed to un­der­stand each other. When­ever Han­nah played dress­ing up, she would al­ways make sure Lexie was the cen­tre of her at­ten­tion, pulling on dresses and loop­ing colour­ful beads around her neck.

‘You’re beau­ti­ful, Lexie,’ Han­nah said, plant­ing a kiss on her fore­head.

And Lexie, as cheeky and mis­chievous as ever, would pull Han­nah in for a hug and play­fully fight with her.

‘Lexie is the best sis­ter in the world,’ Han­nah would of­ten say, hug­ging her tightly.

Han­nah started play­ing foot­ball at school – and any time she played a tough match, she’d say that Lexie was her mo­ti­va­tion to keep go­ing.

‘Lexie has to be there. She’s my big­gest sup­porter!’

But as I watched Han­nah reach her goals, en­joy school and make friends, a part of me felt guilty that Lexie would never get to ex­pe­ri­ence a life like Han­nah’s.

To com­bat that, we put in as much ef­fort as pos­si­ble so that Lexie had a rel­a­tively nor­mal life.

Ev­ery year we’d send her to an ac­tive sum­mer camp where she could meet other chil­dren with sim­i­lar con­di­tions, play sport and have fun.

Ear­lier this year, in June, Han­nah left school and made a speech, hail­ing her sis­ter as her big­gest in­spi­ra­tion.

And Lexie doesn’t need lan­guage for me to know she feels the same.

Sadly, me and Richard di­vorced in 2015 but we con­tinue to sup­port our girls as much as we can to­gether. They’re 18 now. Han­nah plans to study Oc­cu­pa­tional Ther­apy at univer­sity, so that she can help peo­ple with dis­abil­i­ties like her sis­ter.

As for Lexie, we’re still do­ing what we said all those years ago, tak­ing each day as it comes.

The fu­ture’s still un­cer­tain, but now some­thing tells me that as long as my girls have each other, ev­ery­thing will be fine. Han­nah says, ‘Lexie is my big­gest mo­ti­va­tion in life. If it wasn’t for my sis­ter and our close bond, I’m not sure what kind of per­son I’d be. She pushes me to try my best and I love her un­con­di­tion­ally.’

My sweet Lexie – we don’t need words...

Aged 4. Lexie was al­ways smil­ing

The girls were lit­tle gig­glers!

Han­nah and Lexie: a mag­i­cal bond

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