Looking back over the second year a lot of good has happened.
- First and foremost Ainsley has done really well. She has recovered from her hip surgery and is now after 10 months finally able to put some pressure on that right hip. That has lessened my fear that she might never walk. She is crawling around the house and even if it IS at a snail's pace it is so wonderful to know she can get to where she wants to go with a little patience and perseverance.
- She's developed a sense of curiosity and is really playing. Her world is opening up to her and I know that she will not live a bored life.
- She started special pre-school at the birth to three center. She has great therapists who really care about her progress.
- We've developed a good relationship with her new pediatrician who we love even more than Dr. Schuette who'd been our pediatrician for all three kids for almost 7 years before she retired from the practice.
- Despite our somewhat anti-climatic trip to Cincinnati and their frightening diagnosis of bronchiectasis her lung health seems to be unchanged and is as good as it always was.
- We applied for the medically intensive waiver program and got rushed through the system. This gives us funding for in-home nursing that our insurance would not provide. We found a great nurse who's working out well. Having her care for Ainsley just two days a week gives me the help I need to restore some normalcy in our lives.
- I'm slowly learning to trust that after being there for every procedure, surgery and doctors appointment, after hours and hours of research on the internet and with the collective support of my friends on the pediatric trach support group I know far more about Ainsley and her needs and conditions than any specialist who has read her chart.
- I've come to accept my status as a mom of a special needs child and realize that it's not so bad. It could in fact turn out to be a joy as well as an opportunity to reach others with a message of acceptance and gratitude.
- I've come to realize that this is not my identity but only a part of my life.
- And I've come to recognize the issues Ainsley has will be with us forever. Some may resolve but I'm realizing that it is likely that she'll always be special. It's okay because she's an important part of our family and makes us special too.
So this year I feel her birthday will really be a celebration with far more joy than sorrow, just as it should be.
Happy Birthday to you,
ReplyDeleteHappy Birthday to you,
Happy Birthday dear Ainsley,
Happy Birthday to you.
2 years old Congratulations!
Warmest Regards,
Lisa Pedersen
Felt compelled to wish her a happy birthday as it is so close to the twins special day.
Happy second birthday Ainsley!!! Grandma loves you and can't wait to see that big grin you always flash me. You make everyones life special.
ReplyDeleteHappy Birthday Ainsley. May you continue to make strides this coming year. You are one special little girl who, I might add, is the stylin'-est kid I know - always dressed to the T's!!
ReplyDeleteSusan, you are a remarkable mom who clearly will go to the ends of the earth for Ainsley. All your children are blessed to call you "mom".
I hope you have a wonderful day!
Ann