Monday, 14 April 2014

Doing something right

Jessica was our first child. We had planned to start thinking about having another just about the time when the doctors started saying "we think there is something wrong, but we don't know what". At which point we felt we had better wait for all the genetic tests to be carried out. The rest as they say is history and I've written about receiving Jessica's diagnosis of Rett Syndrome here..

So with all the knowledge that receiving a diagnosis of Rett syndrome provides you with, we decided to carry on and have another child. Now the fact that Rett's is not generally hereditary was only part of the decision. Would we cope? Would it detract too much of our attention from Jessica? What effect will having a profoundly disabled sibling have on the child? Of course, many families have their Rett daughter as a younger sibling to older children, and all these questions go out the window- you cope and do the best you can. But that wasn't the case for us - we made a conscious decision to have another child.

And there are many other worries; I never want Anna to feel neglected because of all the attention Jessica needs, or all the limitations having a disabled sibling places on our family life. I never want her to feel embarrassed by Jessica, or to be bullied at school because of her, and I never want her to feel that Jessica's needs are a burden on her. And while I sincerely hope that Anna will be happy to ensure that Jess is ok in later life when we, her parents, are not around to do it, that has to be Anna's decision.

It's not easy having a nearly five year old disabled daughter, and a lively nearly two year old- I can't leave the house with the two of them on my own, with Jess in her wheelchair and Anna in a single buggy. I can't even get the two of them to bed on my own: I turn the oxygen on, and while I am putting the mask on Jess, Anna will turn it off/disconnect it/change the settings etc. The other day I watched Anna  break the mobile hoist in Jessica's room while I was re-doing the dressing on Jessica's NG tube and I could do nothing about it. If I'd gone to Anna, Jess's NG tube would have fallen out.

And (no surprises here) dealing with a toddler is not easy. But this is all new to us- we have never had to cope with a child throwing a tantrum in the street because we aren't going "THAT WAY...", a child who jumps out of her cot at night, and a child who refuses to let mummy out of her sight (or even her touch) in case she disappears off into hospital again with Jessica.

It is hard to know if we are getting the balance right, between disciplining and accepting behaviours; and what is normal toddler behaviour, and what we shouldn't be too hard on her for because it must be difficult for her having an older sibling who needs so much attention and regularly takes mummy away for long spells at a time.

But Anna adores Jess. She is distraught in the mornings when the school bus leaves, and will stand at the living room window at 4pm waiting for it to return. And when she sees it, there are loud exclamations of excitement and she runs to the door, shouting "quick, quick". When Jess has arrived home she then helps me take off Jess's shoes and splints and put them away.

When Jess is upset, Anna strokes Jess' arm and says "what matter Jess-ca?" and she has now started sharing her toys with Jess, and will give one to Jess saying "Jess's toy" and then "Anna's toy". Today we went to the local Farmers Market, and there were some fruit juices being offered as samples, with a cup of straws on the table. Now Anna is quite fascinated by straws and decided to help herself. She carefully choose the colour  and then took two, and walked over to
Jessica and gave her one saying "Jess's straw", then "Anna's straw". It was so sweet.

Again, the other day, we were shopping to buy the girls some summer clothes, and Anna very excitedly saw a Peppa Pig bag, full of Peppa Pig hairbands. Before I could stop her, she had it off the shelf. I told her she shouldn't touch and to put it back, but before I knew it, she had another one off the shelve which she promptly gave to Jessica. Jess became very excited at this, and actually managed to pick the bag up. Consequently, I couldn't bring myself to be cross, and HAD to buy both bags!


And Jess loves Anna too, although half the time I think Jessica wonders what on earth Anna is doing. But tonight, Jessica was very upset going to bed, until Anna came in to say goodnight to her, and she tried really hard to give Anna a hug.

But, despite how challenging the toddler years are (and I fear they may get worse before they get better!) as long as Anna loves Jess, then I feel we are doing something right.












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