Slice of Rett Life: The reality birthday of a Rett child
Guest Blog from Katrina, Azalea’s mom:
Today is my beautiful girls birthday, Azalea is three years old today!!! I had plans for the day on how we were going to celebrate and make her day wonderful. I bought balloons the night before, and she had picked out what she wanted for her breakfast (strawberry rolls). I knew I didn’t want to go crazy with her birthday since she does get over stimulated so easily. So this morning Azalea had woken up and was talking in bed. I knew at that point she was in a good mood and we could get her up. We got the other kids up and took the balloons and went in Azalea’s room. Turned the light on and sang happy birthday. She had a smile on her face, and I thought to myself this is going to be a good day. I changed her diaper and we went downstairs to eat her delicious strawberry rolls she had picked out. She listened to her music while I fed her and she was doing great. Her younger brother wanted her to open up a gift, so I thought yes that would be good so she doesn’t have too much to open later. She opened up her gift which was a purple unicorn chair, and she sat in it and rocked to the music. She was very happy, until BAM! Azalea got angry! It was not a surprising thing though. This is just something that happens, she got a little over stimulated with everything. We warmed up a bottle for her, and she laid there with a blanket. In the meantime I got her dressed and ready for physical therapy. I put her braces and shoes on and she got angry again, but at this point she is furious. Being used to this, we put her in the van and put the blanket on her, pacifier in her mouth and music playing. Everything that normally helps her calm down and hopefully gets her sleep in the car. I got in the van and started driving. Azalea was still crying and screaming, but I thought to myself, “It’s OK, she’ll fall asleep.” NOPE! I got about 10 minutes down the road and she still looked miserable and was still screaming. I got to the stop light, turned around and called the therapist: “We are not going to make it today!”
At this point it hit me like a ton of bricks… A birthday for a Rett child is never going to look like a normal birthday. Being a parent of a special needs child, birthdays look different. As parents we want to make this one day, their day, to be extraordinarily special! I want to celebrate my beautiful courageous girl as she turns another year old. But in reality I need to keep the day as routine as I possibly can. If I don’t, Azalea won’t sleep well, she will be agitated, her eating food will be problematic. There will be more of a chance of her having seizures, breathing problems, and anxiety for the next few days. All because we wanted to celebrate Azalea’s birthday. Rett children want to celebrate their birthdays as much as any other child. We need a cure and we need it soon!
