Having a disabled sibling

Published March 10, 2012 by swanfreddie

WhenI gave birth to my daughter Evie I swore i’d never have any more children(mostly down to the horrible labour) but I loved being a mum so much that within 5 months I was pregnant again.
Most people thought I was crazy having them so close together but for me it felt perfect. They would only be 13 months apart in age & I was hoping this would make them really close to each other. As they grew up they would always have each other to play with & i’m sure get up to plenty of mischief together.
When Freddie was born Evie adored him. She was still a baby herself at only 13 months old but her eyes lit up everytime she saw him. She didn’t take much notice when he had an ng tube taped to his face & never complained when we spent hours in the hospital. Or when mummy couldn’t tuck her into bed at night because she was stuck in hospital with Freddie. She always just took everything in her stride, possibly as she was too young to really understand what was going on.
Evie is now coming up to 3 & the affects of having a disabled brother are beginning to show a bit. The questions have started about why Freddie can’t walk & why Freddie can’t talk. She asked this morning if Freddie could play in the garden with her and when I explained that he can’t really as he can’t walk yet she asked why the doctors haven’t made him better yet. We sat having a drink in a cafe earlier & she was sat at the table with a nice hot chocolate & Freddie was sat in his pushchair & she asked why Freddie wasn’t going to have a drink with us. It seems now shes older she is beginning to realise that Freddie is different. She has also began to copy Freddie behaviour. She spits & grinds her teeth to copy Freddie and likes to pretend to lay on the floor & tells me she needs help to sit up like Freddie & she keeps telling me that she is a baby.
I do worry about how Freddies disability will affect Evie as she grows up. I will always be 100% honest with her(as much as I can be) about Freddie. I try to encourage her to join in with Freddies physio & have exercises for him especially designed to include Evie & i’m trying to teach her how to talk to Freddie in a special way to help them both understand each other. Evie also helps with Freddies feeding & medicines. When she starts school I want her to be proud of her gorgeous brother & tell all her friends how great he is & be able to answer any questions they have.I do feel sad that they don’t have the relationship of a typical brother & sister. In some ways Evie is like an only child & I hate seeing her playing by herself when she should really have somebody to play with her. We are going on our first family holiday in July & I no Evie would enjoy it more if she had somebody to play & have fun with. Somebody to splash in the swimming pool with or to be able to ride their bikes together.

I no Evie doesn’t get as much mummy & daddy time as what she needs & deserves & she doesn’t get to leave the house as much as she should. She has had to grow up quicker than alot of children her age & doesn’t get the opportunity to do activities that other children her age do. She is due to start playschool in September & I worry about how she will feel when Freddie won’t be going with her as he will have to go to a different school & how she will feel when she sees other children with their brothers & sisters.
As Evie grows up i’m sure there will be lots more questions & I hope i’m able to help her gain some understanding of Freddie and other children with disabilities. I want her to grow up to be proud of her brother & for them to have a relationship as strong as it can be.
As party of SWAN UK a video has been made about siblings of disabled children which features Evie & Freddie. http://www.youtube.com/watch?v=XEwu2qKuTgQ&feature=related

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2 comments on “Having a disabled sibling

  • This is a beautiful blog. I am a 24 year old with a 21 year old severely disabled sister (can’t walk, nonverbal, wears diapers, etc). She also has a unique diagnosis (Partial Trisomy 17;22) and this reminds me of my relationship with her. I also helped with her tube feedings when I was very young! We were fortunate to have wonderful parents and I have never once resented my sister or her predicament. My parents were always honest with me about her condition and let me ask questions. I think this is what helped me come to terms with everything. I was always so proud of my little sister – I wrote stories about her in school, I played with her at home, and loved helping care for her. My parents always brought me to all her medical appointments and I asked the doctors questions too. I did miss out on some things. For example, we couldn’t do a lot of outdoorsy things because it wouldn’t be safe to bring my sister. A lot of times only one parent or only my grandparents could come to extracurricular activities because someone had to stay home with my sister. We couldn’t travel much. But I definitely do not resent any of this. I have many other blessings that more than make up for the things I missed. As we’ve aged, I continue to have a strong relationship with my sister and my parents as well – much more so than most of my friends have with their families. I think dealing with this together has strengthened us. I wish the same for you and your family.

    • Thank you so much for taking the time to comment. It’s lovely to hear you have such a strong relationship with your sister, i hope that my daughter grows up to be exactly like this with Freddie. It’s very hard with my daughter being so young to understand what she thinks and feels about having a disabled brother but i do hope that with me being open and honest with her like your parents were with you that it will enable her to come to terms with everything & allow her to love Freddie for who he is. It’s very warming to hear about your relationship with your sister 🙂

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