Thursday, September 22, 2011

Except Nicola...

Except Nicola...

This seems to be a recurring theme in my life...  there are so many things, so many trivial little things that happen...  and they just point out again again the difference between Nicola and her siblings.

Today I spent time doing all the girls hair, pig tails, pony tails, clips, bands, etc...  that is, all except Nicola.  Her hair is too fragile to be tied up.

We all sat on the floor with Alyssa...  that is, all except Nicola.  She doesn't sit on her own and had to be in her chair.

We all shared some hot chips for lunch...  that is, all except Nicola.  She doesn't eat.

Tonight I managed to cuddle all of my children to sleep...  that is, all except Nicola.  She doesn't like being held and only sleeps in her own bed.

Now, I sit here knowing that they are all sleeping peacefully...  that is, all except Nicola.  She is wracked with pain tonight and not settling well at all.

One by one they don't amount to much at all, but after a hundred little reminders every day, it gets frustrating.  Even something as simple as meal times.  Because I make all the food for the girls, I defrost a container of baby food every night for their dinner.  I make sure it's warm, add a splash of extra water and grab a spoon for Alyssa...  then I have to get a tube and a syringe for Nicola because she can't eat.  

I know that I should be grateful for the fact that she is healthy and relatively happy and she is doing well, all things considered...  but it is so hard seeing her so far behind her sisters, and they are growing more and more aware of the things that she cannot do, especially Jessica.

Last term, at school, I took Misty in for Jessica to use for show and share, so I had to sit through prayer, at which Jessica was prayer leader.  (So proud of my baby girl!!).   I sat and listened as their teacher read the story of Jesus healing the lepers...  and Jessica waited through the whole story with such a contemplative expression...  then she jumped up and ran over to me and gave me a big hug and she said "Mummy, all my friends little sisters can run around and play with them...  all except Nicola."

I nearly cried.

But then she turned around to me and said "It's ok Mummy.  I am going to pray extra hard today and I just know that if I pray extra hard Jesus will make Nicola better, just like he did for the lepers, so she can come and play with us like all my friends little sisters."

How can you respond to that?  How can you possibly formulate any kind of a response?

I long for the day that excepting Nicola will no longer be something that we do...  because when we sit on the floor and play, she will sit beside us.  When the girls run around and race, she will run with them.  When I get out dinner, she will eat with us.  

I know that that day will come...  I just wish it would come a whole lot sooner.

Is it wrong that I wish she was 'better' and able to participate more with her sisters?

Does that mean that I don't accept her for who she is?


I really hope not.  


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