I've been on and off trying to think of what to do for her birthday for months. Birthday's are so hard for me. I don't like the reminder that Layla is aging and we don't know how much longer she will age. I'd rather not focus on that. I should be celebrating every day let alone every birthday. Many other parents of children with life limiting diagnosis' do these big celebrations every year, or every month and I should be there too. But for me I'm not there yet.
Age is a reminder of what Layla should be able to do if she was typical. And as she ages the developmental gap is only getting larger. If she was a typical 3 year old she would be able to ask for what theme she wanted, or where she wanted to have it. She would have her best friends there, that she plays with on a regular basis. She would be able to rip open her presents and eat a piece of cake. She could throw a tantrum when one of her friends takes her newly gifted toys. But unfortunately no matter how hard I wish it, that is not a reality. And I need to change my way of thinking in regards to her birthdays. Don't get me wrong. I am VERY much celebrating that our girl has made it another year. Many kids with her disease have not made it as long as she has. And we do have so many things to be thankful for.
Last year family and friends gathered at a big open park. We ate lots of food and played lawn games. It was honestly a lot of fun. But it was also emotional to look over to see Layla, confined to her wheelchair, unable to play along with the kids. Her skin is so fair so we had to keep her out of the sun so she hung out under the cover with the adults, as usual. At that point she was less reactive than she is now so perhaps that'll be a change for us to see.
This year I've been wrestling with what Layla would want for her birthday. I want her to really feel like the day is for her. What is something that she would actually enjoy and get to take part in? At first I thought she would probably just love to be with mom and dad. We looked in to going away for her birthday weekend. I've looked into local places we could go to for a day trip, or we could always do similar to last year with an event at a park. I'm still unsure. Lets hope I can make a decision before the actual day.
