This weekend we had the best time. On Saturday we were all up early so we decided to go on an impromptu trip to the beach. Evie & Freddie quickly threw on some warm clothes and we jumped in the car. The sun was just rising as we arrived so we took a walk along the sand watching it. Evie and Freddie spent hours building sandcastles and having fun together. Then we came home and decided to watch a family dvd. Typically Evie and Freddie squabbled over what to watch but they did eventually agree. So we snuggled under blankets with hot chocolates all afternoon.
On Sunday we decided to stay home and bake cakes. Evie choose princess cakes and Freddie spiderman. While the cakes cooked Evie & Freddie went into the garden to play on their bikes and trampoline. In the aftermoon we did some arts & crafts and then watched another family dvd before bed.
But this weekend wasn’t real. It was just my dream weekend. A normal, relaxing family weekend.
Our weekend was very different to this. It was very set and scheduled and ruled by Freddie. Our weekend consisted of prepping and administering 14 daily doses of Freddie’s medicines, endless bib and nappy changes and feeding Freddie all his meals and milk. We did physio and tried to find different things to keep Freddie entertained…which is very hard We tried to play games but Freddie kept crying and needing constant attention so we soon stopped playing them. We did put a family dvd on once Freddie went to bed but we paused it well over ten times to go and resettle him as he didn’t want to sleep. We never left the house as it’s just easier to stay home. Infact I can’t remember the last time we went out as a family.
This is a pretty standard weekend for us. It’s been the exact same routine for as long as I can remember. Medicines, food, milk, sleep at the same time every day. No opportunities to enjoy the family activities you want to. The things you imagine yourself doing with your children. I often think how nice it must be to just watch your children play together in the garden or sit with them and just watch a film together. What life must be like to not be constantly caring for a child. To be able to leave the house without forward thinking and planning. To not have to constantly be clock watching so you don’t miss medicine times.To just be able to be happy. To not be stressed and tired constantly. For life to not feel so hard.
I often go through times where I lose my acceptance of having a child with disabilities. Where I suddenly find it really difficult to manage. I often find myself watching Freddie wondering what he would of been like if he was born without a syndrome. What type of toys he would of liked and what he would of enjoyed doing. Would he of liked football and riding his bike? I wonder what his personality would be like and what his voice would sound like.
I will get my acceptance back. I will stop looking at Freddie and wanting to cry for him. For the life he won’t have. I will go back to being positive about the future Freddie has.
None of this means my love for Freddie changes. Freddie is an amazing little boy who brings a lot of happiness to our lives.
Life at the minute is just hard with Freddie. But it will get better.