100 Happy Days · Parenting · Special Needs

Every little thing she does is magic…..

So carrying on from yesterday’s post about the #100HappyDays project, the thing that made me happy today was reading my daughter’s communication book from school. We rely on this to find out what she did at school each day, what went well or not so well and what kind of mood she was in. Her teacher is great at sharing news with us. Fionnuala's communication book
Fionnuala is not able to tell us what happened at school each day, although she is coming out with new words all the time and her communication is really coming on well. Actually she is doing great overall. Her motor skills (both fine and gross), her mobility, her speech, her understanding, everything. We had no idea how her developmental journey would pan out and while she has global developmental delay (that means she is delayed in every area of her development) and is probably like a neurotypical 2 year old in a lot of ways, we often forget that. She is just our amazing Fionnuala, developing at her own little pace in her own little way.

At times its hard to focus on the good stuff, my experience of motherhood has been radically different from what I had expected and I’d be lying if I said I don’t find it hard sometimes when I see all the things children far younger than Fionnuala can do that she can’t. But I do try to learn from her everyday. She is a genuinely happy little girl, very loving, very affectionate and at times quite a wee monkey too! She is feisty and determined and never gives up. I could learn a lot from her, I just need to remember to do so.

Special Needs

The joy of Christmas

Christmas is a joyous time for many of us, whether Christian or no.  Personally I love it, I dipped out of it for a while in my late teens/20’s, but since I have had a home of my own and gotten more into baking, homemaking and all making nice and all that goes along with it, I have come to love Christmas more and more.  When we decided to have a baby, one of the many things I was excitedly looking forward to was having an even more excited little person to share it with.  I had images of my child/ren helping to make the Christmas puddings, squabbling over who would open the next window on the Advent calendar, being too excited to sleep on Christmas Eve…… you get the general idea.

But the reality has turned out somewhat different.  I’ve written here before about Fionnuala’s disabilities and I’m not going to go over them again.  Suffice it to say that my amazing daughter is now nearly 4½ and she has no concept of Christmas.  Or birthdays.  Or any of the other special occasions we mark in our house.  So when well-meaning people ask her “Is Santy coming?” I just smile and make some insipid comment like “Only if she’s good!” or “Oh definitely, isn’t he Fionnuala.”  The child has not the foggiest idea what we are on about.  We are putting up our Christmas tree and decorations tonight and while she will know something is going on, she won’t understand.

At her first Christmas she was 5½ months old, so naturally I didn’t expect too much engagement with the whole idea.  We dressed her in a cute little Christmas pudding babygro and oohed and aahed over her as all parents do at their child’s first Christmas.  The following year she ‘helped’ her daddy put the fairy on top of the tree and I have a lovely photo of her smiling as she reached out to it. But despite knowing and understanding the level of our girlie’s disabilities, part of me still hoped that she might show some comprehension of what Christmas is all about.

At her third Christmas, I found it hard that children younger than her were beginning to get the idea that something special was happening.  Last year was her fourth Christmas and I ended up with a rotten dose which meant I spent most of the Christmas break on the sofa so I wasn’t really worrying about her lack of awareness.

So now we are approaching Christmas number five for Fionnuala.  She is attending a local pre-school two mornings a week and a special needs unit two half-days per week.  She loves both and has settled in really well.  But now of course there are Santa visits and Christmas parties….. and she still doesn’t understand.  This year we’ve begun to read stories about Santa and Christmas at home with the view to making the words familiar.  We have an Advent calendar but I’m the one who opens it every day.   The Christmas cake is made (eventually) and the puddings will be mixed tonight – and she will take her turn stirring the mix (with some help from Mum and Dad) and while she doesn’t close her eyes and make a wish, I make an extra one for her when I’m stirring the puddings.

And funnily enough I don’t feel as sad about her not getting Christmas yet as I have done in previous years.  Yes of course I still wish that she could come running into us on Christmas morning with her stocking in hand, and I wish that she was able to write a letter to Santa.  I wish that she could say “Merry Christmas Mummy!” and open her presents herself.  But – as yet – she can’t do any of those things.  And even writing that down I still don’t feel as sad as before.  I’m not exactly jumping for joy mind you, but I’m wondering if its that I have become more accepting of the need to be patient with Fionnuala’s development (and patience is not one of my natural virtues), or if that she is doing so well and is such a happy little girl that I don’t mind the whole Christmas thing so much.

Or is it that I have finally come to understand the message of Christmas (at least the message the movies portray) – be glad and happy with what you have, celebrate the joy, the love and the good things in your life, and while there’s nothing wrong with wishing, don’t let the wishfulness become wistfulness.  Maybe that’s my darling girl’s Christmas present to me – acceptance and patience mixed in with a huge helping of joy.

Merry Christmas to anyone reading this, I hope you and all those you love have a peaceful and joyous time.