Tuesday, 13 November 2012

A child with a disability: my sister's story

I've written before about my sister Louise and her family - particularly her youngest daughter Evelyne, who was born with Beals Syndrome.

Recently we've had a few conversations about what it's like to be the mum of a child with a disability which have made me realise how few of us (myself included) know what it's like to face this challenge every day or how to support those who face it. So, I asked her if she would be happy to be interviewed by me so we can learn from her, and she graciously said yes. Here it is:

Can you tell us a little about Beals syndrome, and what that means for Evelyne?

Beals Syndrome is a rare genetic disorder which affects the connective tissue in the body. People with Beals will have varying features of the disorder including long limbs, long fingers and toes, contractures of the joints, hyperflexible joints, club foot, crumpled ears, and scoliosis or kyphoscoliosis. It can also affect the heart and eyes.

Evelyne to most people seems like a 'normal' kid, although many have a second glance as she looks kind of different. She runs, plays, communicates well and can participate in most activities that kids her age can. She is a happy and bright kid. Physically, she has most of the features of Beals I mentioned before. The most concerning is her kyphoscoliosis. Her arms and fingers are long, but slightly bent, her legs are long and skinny with large feet and knobbly knees and she wears a spinal brace (and on occasion a cast) for her scoliosis which gives her torso a slightly bulkier appearance. Her kyphoscoliosis has continued to worsen over the past few years. She sees a number of specialists and it is now affecting her lungs. She currently wears a brace and is prone to breathlessness and chest infections. The plan is to operate, to put in growing rods, but we are hoping to wait until she is bigger to lessen the complications.

What the most difficult  things have you experienced through having a child with a disability?

There are lots of things, but here are the things that stand out the most at the moment:

- Seeing her in pain and constant discomfort.
- Seeing her struggle to do everyday things like dress herself, but yet her determination to do it.
- Seeing her desire to be a 'ballerina' and dance around the room, but her obvious awkward style and imperfect, frail little body. Most of the time she does not let it bother her, but recently she has started to become aware of her physical differences and limitations. I have found her in front of the mirror a few times recently, once trying to look at her back, she said "It really is bent isn't it!"
- Hearing her say things like "I wish I didn't have to wear a brace" or "I'm always going to be sick" or "Mummy, one day will God make my back better. I cant wait till he gives me a new body".
- Its hard when friends and family have had babies, seeing their perfect little bundle. While I'm happy for them, there is a sense of grieving.

What are some ways you have grown?

I've become more aware than ever that I am living in a fallen world. I'm learning to trust God has a plan for us, even if we may question what it is. In a recent conversation with someone from the US I 'met' online, we cried together and shared our frustrations, yet our shared knowledge that God is in control and has a plan for our little ones.

I've learned to hope for heaven where we will have new bodies with no more death or mourning or crying or pain. When Evelyne says, "one day will God make my back better" - she's right!

I've also learnt a lot about the health system!

What are some of the most encouraging things people have done to support you?

I've appreciated it when friends have thought to do little things like sending text messages on appointment days and letting me know they're praying for us. Others have offered babysitting so Jon and I could go out together.

It helps when people show they care in practical ways. A recent example is when a friend of mine gave me what she called a 'happy' bag after a particularly bad appointment. It was a bag with gourmet coffee, choccies, magazines, a recipe and all the ingredients to make it, soap and a few other little things. The acknowledgement that it had been a hard and emotional day meant a lot to me.
Now Samuel is at school, Jon's parents often come to stay with Jon and Sam so that they can do school drop off and pick up.

What things have you found unhelpful?

It is hard when people don't understand the extent of Evelyne's condition. When I talk about it, people often respond by saying: 'I have a scoliosis' or 'my kid had to wear foot braces for 6 months'. I understand people are trying to empathise, but I often feel like saying "you have no idea!" Some assume she will 'grow out of it', or have been interested when she was first diagnosed, but don't realise the long term significance or the daily issues we face.

If someone came to you and said their friends' daughter had just been diagnosed with a genetic disease and asked for advice for how to help and encourage them, what would you advise them to do?

I would encourage them to research the condition and its impacts so they understand it better.

It's also a good idea to ask the friend if they mind you asking about it or talking about it. Everyone reacts differently at first. I am always happy to answer any questions people have, and keep everything out in the open. However I know others who do not wish to make it public and would rather hide it and not talk about it. Even my husband Jon and I differ on this. Jon tends to go through periods of denial, then crashes when he realises the extent of her condition.

There are sometimes practical things like minding or picking siblings up from school when at appointments, or a meal after a hard day, which can help a lot - and will show the person in a practical way that you care.

Offer a listening ear, a friend, and continue to pray for them.

Thank you Louise! If you wish to find out a bit more about Evelyne and Beals Syndrome, Louise also writes a blog called 'Life with Beals' which you may find helpful.


alice said...

Thank you so much! I feel you've spoken on my behalf - you express how things are so well, I'm so grateful for your eloquence and honesty.


Trevor Cairney said...

Thanks for doing the interview Nic. Great questions and like Alice, I love your honest answers Louise. I'm also very thankful for Evelyne who (as her Grandad) I find a joy and inspiration. She is simply remarkable!

Alice.K said...

Beautifully honest about a difficult but also a very special time. Even when our children aren't well, they are still a very precious gift from God! Thank you

bettyl said...

That was quite enlightening. Thanks so much for the post.

Nicole said...

Glad you found the interview helpful Alice and Betty.

Belinda Finlay said...

Thanks you for sharing. Its helpful to read, and I hope that I will be able to remember and use your advice when presented with a friends who may be in a similar situation.

A.C. said...

You perfectly articulated exactly how I have felt but haven't even been able to at times admit to myself. Having a child that is different in sometimes very obvious ways can be hard. You struggle with so many emotions. From guilt to sadness, and then more guilt for having negative feelings. Especially the feelings when someone that you know has a baby it's hard to not feel grief or envy over their "perfect" experience. That has been one of the hardest things for me. I too am trying every day to trust God more and more and understand his plan.

Nicole said...

Belinda, I found it helpful to read Louise's thoughts as well. I hope I can learn to be more sensitive to her and others in similar situations!

And A.C. your situation sounds really hard. Let me know if you want my sister's email address - I'm sure she'd be happy to 'chat' with you about it.