I love Christmas: the festivities, the traditions and the kid’s excitement that bubbles over in the lead up to the day. However, there was one Christmas I found difficult. It was about a year after BJ’s diagnosis and reality had set in. It was going to be a long road ahead and I was starting to understand how slow progress would be. I had no problem remaining upbeat while I was busy but therapy and all BJ’s activities were on a break for the holidays. It gave me time to think and with thinking came worry. Christmas can be tough for families for many reasons.
I remember that Christmas clearly. We had a lovely day with family; I received beautiful gifts and ate well. I was lucky to have so much and yet I felt empty and sad. It is rare that I feel this way but it was the realisation that what I wanted most in the world wouldn’t come in a box wrapt beautifully with a ribbon on top. What I wanted more than anything else was for BJ not to struggle with every milestone and for cerebral palsy not to affect every part of his life. Material presents seemed irrelevant, no matter how lovely.
Fortunately I moved on in my thinking and realised that small progress is a gift. I learnt to appreciate every new skill and any gains BJ makes towards a greater goal. I still wish with all my heart that life could be easier for him. I’d love to not spend time worrying about his future but as a family we celebrate his achievements and enjoy his joyful personality.
BJ is a great gift to us all. He has certainly taught us a thing or two about applying gritty determination to achieving what he wants and he spreads love around our family with his warm loving nature. His love is so great it just bursts from him and his is joy is infectious.
I’m writing this post and sharing my feelings from that Christmas so if you are struggling this Christmas you realise you are not alone. I also hope that if you are a friend or family member of a family with a child with special needs you realise that sometimes when therapy stops, it can be tough. Although it is lovely to have a break, it means many of the people who offer support and encouragement are not there, leaving a gap.
Enjoy the festivities and remember the small gains and time spent together is a wonderful gift.
I’d love to hear other people’s experiences with the break from therapy. Have you ever felt you have everything but not what you want most in the world?
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