Have yourself a merry little Christmas…

It absolutely pains me to say this but I just haven’t really felt Christmas this year. We took a short break away with some friends at the beginning of December and when we returned I couldn’t wait to buy and put up our Christmas tree but that’s where it stopped. Ever since I was a child I have always loved the build up to Christmas and always imagined my children being as excited as I was, going to sleep on Christmas Eve ready to wake up and see if Santa’s been.

In previous years with Edith, because the gap between her and the other children in the family hasn’t been as noticeable, I have been able to embrace it thinking “well the other kids are only interested in the wrapping paper too” but as the parent posts of their excited children started to appear on social media, it filled me with a deep sadness. I found myself right back at the beginning thinking, why us?

We decided back in November that we would buy Edith a dolly for her Christmas present and initially I was really excited but as the day drew closer I began to think what’s the point? She will probably chuck it on the floor and just suck her hands or stretch her legs as that seems to be her favourite thing to do at the moment. I knew it was a waste of money but I couldn’t bare the thought of her having nothing to open from mummy and daddy on Christmas morning; that was my issue though, not hers. I’m not usually a negative thinker but recently it has totally consumed me. I hate being out of routine and feel Edith doesn’t thrive as well when she is.

Christmas Eve came and the next day filled me with dread. All I wanted this year was an unruly four year old pulling down the decorations and wanting to eat all of the chocolate advents on day one but instead I have a perfectly placed tree with expensive decorations and an advent of memories…pffttt. That morning we went on the Santa train at Avon Valley railway. We went with my sister and her family; Edith’s cousins. As I watched them jump around the carriage with excitement, Edith just sat in her chair restricted by her own body with anything she might like to say or do. Santa came round to the carriage, and like most people, didn’t know how to approach or talk to Edith. As he pulled out the gifts with all the kids names on they all got excited, but not Edith. She would understand but it would need to be done at a pace that’s not an option in the fast world we live in. So, like always, Mummy and daddy reacted for her. Edith’s gift was appropriate for a four year old little girl; well not my four year old, she would choke on the small plastic parts included but I would keep it anyway in a bid to cling on to some kind of memory and sentiment.

In the evening we prepared a plate for Santa and got some quick pictures with Edith before she chucked it all on the floor. We bathed her and put her into bed and I read her “The night before Christmas”. As I sat looking at the plate on the floor an overwhelming sadness overcame me again and all I could do was let it. The plate was still there Christmas morning as we had forgotten to take it away and this made me feel bad, even though Edith didn’t notice or care, I felt bad that in my own miserable bubble I hadn’t done that for her.

Every Christmas morning my entire family (25 of us or something like that) all head up to my Nan and grandads cottage for Christmas wishes and present exchanging, something I am normally really excited about but this year I was dreading it. I almost didn’t want to see anyone. I knew all the kids would be really excited to open their presents and that Edith would just be sat with us not able to join in. Once we arrived I felt better but Edith was quiet and not herself. We were going to my sisters for lunch but bought Edith home for a sleep first. She slept for 2 hours, at which point we had to wake her up so we could leave. She never sleeps for that long and I was beginning to worry she wasn’t feeling well. We arrived at my sisters and my mood started to lift. My brother in laws sister, Jo and her partner Darren joined us as well as Jo’s two children, George and Elsie. We sat down to Christmas dinner and I held the lump in my throat as I watched my little girl look longingly at everyone’s plates wishing she was involved in the eating. Edith would have a Christmas dinner, she just wouldn’t taste it.

Olive and Elsie always play together as they are similar in age and this time they did their very best to include Edith. It was really heart warming to watch two girls so young give Edith so much when she couldn’t give much back. Edith loved the attention and responded. They were patient and kind which meant the world.

As we put Edith to bed that night I felt better. Christmas Day was gone for another year and the next few days would just be family time. I feel so ungrateful writing all this down but I did start writing this blog to give a true account of life with little E. Although things are very much going in the right direction for us at the moment sometimes things can just hit you like a great big punch in the chest. If things were different Edith wouldn’t be Edith. The last few weeks have been tough and I have found myself reflecting a lot on what could/should have been but I think I’m through the worst of it now and am looking forward to 2019. This year has been kind to us, Edith has remained well and continued to move forward. We have seen off several more diagnoses’s and she continues to exceed our expectations. I have no doubt that I will face many more moments like this but it feels good to write them down, just wish I’d done it sooner.

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