There was pregnancy with all the dreams of what the child may look like or be like. The only questions in our heads were along the lines of will she like music and art or sports. Will she be stubborn and strong willed or easy going. Will she look like her brother or sister... Somehow, will she have a rare genetic disorder did not slip into our thinking.
Those dreams and expectations were buried deep when crisis time arrived after birth. Then came diagnosis and we had a new list of expectations forced on us. None of them good. None of them were on our list of dreams for our precious child.
As the years pass, the challenges and concerns change. Reflecting on the past year is awesome because I can see the challenges we have conquered. I can see how few of the things on that list we were given at diagnosis are reality. I can see the amazing things Ayden Jane can do and I can hear so much of what goes on in that little head of hers. It is definitely time to celebrate the hard fought achievements.
Then I look forward. New challenges. New territory. Based on past experience, I have every reason to think that we will rise to those challenges, but honestly there is a part of my brain that struggles with believing that. I think that is the most exhausting part for me about raising Ayden Jane. Heading into each phase of development with a gather all the forces attack mode. The feeling of always being on guard and afraid if I don't keep my eyes peeled we will fall of the track and not be able to find our way back.
Ayden Jane has PWS so she is a special needs child. She has PT and ST and therapeutic horseback riding. She has way too many doctors... But when she is at school, she is just another kid in Bee's Three's. She blends in and looks to everyone else as a typical kid. I know that is AWESOME! But it also makes me constantly feel like I am not in either camp. I'm not really a special needs mom, my kid doesn't actually even qualify as developmentally delayed! I am definitely not as foot loose and fancy free as the mom's of the other kids. I need to encourage AJ to spread her wings and protect her at the same time.
I guess I need to enjoy this birthday week coming and choose to celebrate all that she has accomplished from 3 to 4. I will have a the whole year of being 4 to attack those challenges. I know Ayden Jane can handle it and as long as she keeps working so hard, how can I let exhaustion set in. Go AJ go.