A few weeks ago it hit me that Christmas was on it’s way! – This Christmas would not be in hospital.
It probably happens to everyone at some point every year. I was at Kmart with Mr Shane, we came around the corner and there were all the Christmas decorations!
It was exciting, I love Christmas. I’m not one of those crazy people who count down 364 days until Christmas, but I love that family comes together and spends quality time.
We started perusing the decorations, I realised after a moment, that I was looking for shiny decorations that light-up.
They weren’t just my favourite.
They were Matthew’s.
Christmas was the best season for Matthew & cortical vision impairment
One of the many reasons I love Christmas, is because of the lights and shiny materials that are a huge part of this celebration. They were perfect for Matthew’s cortical vision impairment.
That realisation was followed by a sinking feeling…
This was the best time of year to include Matthew, and this year he wouldn’t be part of it.
I suddenly knew why some people hate Christmas. Another moment like I described in a day at a time.
Christmas would be quickly followed by New Years Eve. Which held it’s own awful thoughts.
Next year will be a year that Matthew doesn’t get to experience. A year that our family will have to face without him.
At this time of year there are many memories of Matthew’s prognosis, and his deterioration. Every day held a new significance.
I had a choice
To be depressed by these milestones from now on, or focus on what we loved about them.
So, I decided to share with you what we did to make Christmas work, at home or in hospital. Matthew spent over half of his Christmases in hospital.
Christmases in hospital were always unique
Our first Christmas with Matthew I recall him sitting in a tumble form. We sat in our lounge, with my entire family. Maybe Luke’s too.
He was so little, I was worried about his feeds as normal, getting all his medications on time, as well as hosting everybody.
However, Matthew loved a party!
All the family around, energy & excitement.
Enjoying Christmas with a complex child
- Work to your strengths.
Do the activities you enjoy and delegate the rest.
- Plan timings around your child’s feeds, medications etc.
Keep your family in the loop. If you’re travelling to them, be open about how the plans could change. One year we arrived an hour late because we had to stop several times.
- Decorations and set-up.
Keeping in mind any sensory issues your child might face, but also their siblings. Don’t ban everything and have the rest of the family completely miss out. It’s about balance.
We had a bag of Christmas decorations, bells, silver and coloured tinsel, coloured LED fairy lights – battery operated, a light up Christmas tree, that swirled silver sparkles and changed colour inside. Matthew loved them.
We took them in and out of the hospital each admission during the festive season. It brought cheer not only to us and our visitors but the staff loved it too.
- Christmas present shopping.
Plan ahead. Give yourself time, write your ideas down.
When push comes to shove and you have an emergency on your hands you can delegate that too.
Planning gifts for Matthew also included planning the wrapping paper to be as visually and sensory stimulating as possible. I included light up ribbon and metallic paper, as Matthew had cortical vision impairment.
- Be flexible.
Half Matthew’s Christmases were in hospital. Once, he was discharged and then re-admitted all on Christmas day. It was very disappointing, especially for his dad because we only got to spend 2 hours with this family at Christmas lunch.
- Think about what really makes Christmas special for you.
We took our children’s Christmas presents into hospital (not all of them admittedly) so they could unwrap them together.
It wasn’t as if Matthew ate orally anyway, so sitting down to eat with him was less important.
- Find out what the hospital does for Christmas.
When you have Christmas in hospital, especially at a children’s hospital can be very special. Very fun even. Our children got loads of gifts and we could have even sat down for a Christmas lunch together.
After presents and a good portion of the day, we headed to the grandparent’s Christmas lunch.
- Let go of the disappointment of what is not, find the joy in what is.
Sit down with yourself for a minute. Apologise to yourself, then forgive yourself. You want to make sure you’re truly letting go and not just stuffing the emotions.
They will come back at some point, and be much harder to deal with.
- Do the things you need, to take care of your own mental health.
Don’t leave yourself to last.
Take care of you first so you can really put 100% into caring for your complex child and their siblings. Eat well everyday if you can possibly manage it, if not try some real food supplements.
- Take lots of pictures!
Things change over time. You will always wish you had help remembering things about the different parts of the journey.
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