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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I have never accepted my adult child’s diagnosis. I hate it. I am never thankful for the life she is forced to have and she is often depressed and heartbroken about having a body that does not work and socially leaves her behind and reliant on others for her basic needs. She is now a passionate advocate of termination where the baby has been found to have genetic problems. She has two university degrees but her disease is progressive, leaving her unable to work. I know I should be happy for her achievements but they just highlight her struggles and hardships and loneliness. I love her dearly and try hard to give her a meaningful life and experiences, but I am not happy.
Thanks for sharing your story Anon. Writing this post I was acutely aware of families facing a progressive disease as we have had amazing posts by two of our families in this situation. While I found their positive attitudes fantastic, their stories brought me to tears.
It must be extremely difficult to find the positives when your daughter is unhappy. I hope that you can enjoy your Christmas together and we send you our very warmest wishes. Julie
Thankyou Julie.
A Blessed Christmas for your family and friends as well.
Thank you so much. A Merry Christmas to you too.
I have a sister who has a profound disability and I am always looking for the positives. Not always an easy thing to do but I have a theory we are in this situation for a reason and that we are stronger for the experience Tanya
Thanks for sharing Tanya. I am so pleased to hear that you look for the positives. It makes a big difference in life in general. Have a lovely Christmas with your sister. Julie
I too have wished so many times that my granddaughter would be able to live life with less pain and less struggles. I love her dearly as she is, but would love for her to be able to do the things we take for granted, walk, run, tie her shoes, etc. She has come a long way, but I will keeping wishing, cause that’s what Grandmas do. Merry Christmas to all!
We had several Christmases where my son really didn’t get it or understand what Christmas meant. That was upsetting at the time and there was great joy when he finally did understand and enjoy Christmas