Sunday, 10 May 2015

A Burden?

A friend of mine who blogs here wrote about myself and jess on her blog. She is very honest in her writing, and in being so honest, raised some very difficult questions. At her request, I wrote a post which she has since published on her blog:
"I have previously written on my blog here about if disabled children and those with special needs place a burden on society. However, Celia, in her blog asked if having a disabled child is a burden to me, her mother.
My daughter has Rett Syndrome. This is a condition where children (mainly girls) develop normally for their first 12-18 months and then begin to regress, losing the skills they have already acquired such as walking and talking. They end up being profoundly disabled- my daughter is 5 years old. She cannot walk, talk, use her hands or control her movements. She is fed through a tube that goes into her bowel and has her medication administered through a tube into her stomach. She has severe reflux, her spine is curving and she has to wear a rigid spinal brace, she has seizures which cause her to stop breathing, and we have to carry oxygen around with us at all times. She needs 24 hour care for all her needs and will for her entire life.
Is she a burden to us? What I will say is it is hard work being her parents. The level of care she needs, and all the background work takes up all my time, such as the ridiculous number of appointments we have, making sure we have enough feed, medications, nappies and equipment at all times. Her needs are very unpredictable- I regularly receive a phone call from her school to say they have called an ambulance for her. Equally, she has severe sleep disturbances- for example, I went to bed at 10pm last night, and Jess got up for the day at midnight. All these factors do not make for an easy life. I have had to give up a much loved career in order to care for her.
Historically, girls with Rett Syndrome were thought to be severely disabled with severe learning difficulties. However, new developments and new technology are demonstrating that they do not have severe learning difficulties, they are "locked in" and unable to express themselves due to their physical disabilities. They DO understand what is going on around them. One exciting piece of technology is the Eye Gaze computers, where the girls with Rett Syndrome can move the curser with their eyes, just as we would with use the computer mouse. There are girls in America (where eye gaze technology has been used for a lot longer) in mainstream schools sitting (and passing!) mainstream exams.
I know that my daughter understands everything, and her communication (she doesn't yet have an eye gaze device, but it has been ordered) whilst subtle, is there. She can spell her name and her sister's name, and she clearly demonstrates her likes, dislikes, wishes, choices and love for us. For example, her dad was on he the phone the other day and I had put him on loud speaker, and Jess started blowing kisses down the phone. I know she understands, and that she loves us. And we love her. Very much.
We understand Jess, and the amount of input and love we get back from her, makes everything we do for her worth while.  However, I know parents of children with other conditions who do not have the same level of feedback and love from their child- they may have severe brain damage, or challenging aggressive behaviours. And yet they still love their child, and want the best for them and work hard to achieve this. Lots of people talk about the love you feel for your child being unconditional and it's the same if they are disabled or have special needs. As a parent, we all have the same very basic hopes for our children- that they will be happy, they will achieve to their full potential and any hurt or pain they suffer in this life is minimal.
Jess herself is not a burden. However the burden of responsibility on us as her parents is huge. The effort of just looking after her on a day-to-day basis can be overwhelming, and the responsibility to make sure that she enjoys her life and is as pain free as possible, given all her various physical problems is not insignificant. We go out of our way to make sure she enjoys a wide variety of experiences. For example we are very conscious that we have a window of opportunity while she is small to do things like Alton Towers and Disney World, while she is a size that we can lift her onto the rides. She absolutely loves things like that, and it breaks our heart that we are not going to be able to take her on things like this for much longer.
The other huge task is to make sure that others around her- family, peers, school, carers etc understand her, and include her, and that she has all she needs (including correct medical management and equipment such as the eye gaze device) to achieve everything she can, and be as happy as she can be in her life.
 We are just parents, like any other parent, trying to do the best for our child. It's just, for us, it is very difficult, exhausting, lonely and heartbreaking.
Research has shown that there is a possibility that Rett syndrome may be curable in the future. Scientists have demonstrated in mice that if the abnormal protein levels found in the bodies of girls with Rett syndrome are corrected, the symptoms of Rett Syndrome disappear. This research is moving at an astounding rate and it is thought that Rett Syndrome may be the first condition of its kind to be cured.
How amazing would that be???"

1 comment:

  1. What a beautiful piece of writing x gal x

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