• TBC1D24

A day in the life by Brooke, mum to Ariella

Updated: Jun 25

This weekend Ariella was meant to have two birthday parties, one on Saturday with family and close friends, one on Sunday with her girlfriends from school. After prepping all week, cooking, decorating, staying up til midnight whilst not being well myself, I didn’t mind because I knew Saturday morning she would wake up to a house transformed into a Princess wonderland and she would just love it.

She wakes up Saturday morning, with a slight cold, and her body shuts down. We bring her out to see the balloons, posters, cakes, flowers ... but all she can do is cry ... can’t walk, or talk... or smile... just cry. So she went back to bed.

And the party went on, people came , and she slept in bed. She slept outside on me and Daniel for parts of it , and was awake and happy long enough for everyone to sing her happy birthday.On Sunday I thought she might improve , but the day started much the same. She slept through the first half of her friends party and then we gave her a very strong drug which helped give her energy to enjoy about 45 minutes with her friends before needing to go home to sleep again. She got 45 minutes of joy out of a whole weekend I had planned just for her. Every little detail was just for her... the Pinterest sweets, the Snow White cake , the princess cupcakes ....


I was so mad at God this weekend. Like really mad. I used some language with him that I’m going to need to ask for forgiveness for , but I didn’t care. None of this was fair. What life lesson are you possibly teaching me? What good comes from seeing my daughter constantly suffering and me and Daniel stretching ourselves physically and emotionally to the limit all the time? How is it fair that most children who get a cold can still enjoy their birthday party and would at least be able to walk and talk?I was mad. And frustrated. And so so sad.


But now, laying in bed with Ariella who still isn’t well, I’m looking at her and I still have all those emotions mentioned above, but I have a new one I wish I could have had throughout the whole weekend. Gratefulness. I look at her and I think about all of the families we know that have lost their children to this disorder.Yes, she had a bad day. And yes it’s not fair.But she had a day.She had friends and family around her who love her on her good and bad days.So God, I’m not mad anymore, I am grateful because I will take bad days any day, over no more days at all ❤️❤️

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