Watching her lie intubated and sedated in the hospital bed reminded me so much of Ainsley's first 5 weeks of life. We didn't understand why she was having stridor (the doctors didn't know) and thought each time we extubated that she would breathe okay on her own and we would take her home and go back to a normal life like we did with our other 2 babies. I never dreamed that she would require a trach to live and yet that was the position we were in. It was hard but we lived that way for 7 years. Our life would never be "the same" and yet it is rich because Ainsley is in it. She does require a lot of special care but she is worth it. Life is precious. A trach is technically life support. Would you allow yourself to be trached to live? I think this is not what most people think of when they consider being kept alive on life support. Some medical treatments are not what we want but we do them when we have to. My sorority sisters and I have a motto. "We can do hard things, even when we don't want to." In 9 years of managing the medical care for a medically complex child I've learned that doctors are just people. Their opinions are based on their experience, education and personal bias. Those things influence the words they choose, treatments they recommend which affect the patients they treat in profound ways. So many people think doctors know the answers but the truth is they don't always and like other people sometimes they're right and sometimes they are wrong. I've learned this so many times over from personal experience and then again and again from the stories of others like us over the years.
Joanne was Ainsley's biggest supporter. She loved Ainsley so much and told me many times that she checked the blog every day. I think she was disappointed when I went long periods between posts so often when I posted it was for her. I never really know who is reading these days, but I always knew she was and it won't ever be the same. If she were here I hope she would be happy that I wrote this blog post, sharing a bit about her, our relationship and hers with Ainsley and the kids. I haven't talked too much about her publicly. She and my father were teenagers when I was born and she gave me up for adoption believing she was giving me the best chance for a good life. We found each other nearly 21 years ago and had been in each others lives since. Ironically she lived just a few miles away from my adoptive mom. Out of respect for my adoptive mom and to avoid confusion I never called her mom until the day she passed, when it was too late for her to hear me. But she was.
She helped me plan my wedding. We went from store to store looking for the perfect dress and when I couldn't find what I wanted she made arrangements for her mother Jeanne's life long friend, Howard Blair, to design and make one for me. She went with me to his dusty old house filled with antiques and Persian cats for the numerous fittings. We smoked cigarettes and chatted for hours at his dining room table listening to his horror stories of gowns he made for debutantes and I learned the merits of Fels Naptha. He nearly didn't finish the dress and dyed my veil and shoes in Kool Aid in an attempt to match my gown and was then a bit indignant when I didn't wear them. We laughed about those days so many times.There were so many good times over the years (although we look a little sober here). These were the pre-digital days when you didn't get to see how you looked instantly. There are so much fewer pictures from those days. That's her 2nd husband Tom on the left.
When Ainsley was born the next day October 19th was Steve and my 10th wedding anniversary. I will never forget that she brought us flowers and a cake to celebrate because she knew we were stuck in the hospital and what we were going through was so hard. She put on a brave face but I knew she was having a hard time that night because of what we were going through. I appreciated her effort so much.
In 2008 she went with us on our first medical trip across the country to Cincinnati.
An avid dog lover, when I decided to get Adrian a dog for his 10th birthday, she helped me find a non-shedding breed, located a local breeder with puppies, came with me to meet her, and was part of the elaborate plan to surprise him on his birthday. It was so much fun!
I love this picture of them and how you can see the beautiful shade of blue her eyes were.
Now I think of her every time I look at Penny.
I love this picture so much of Joanne and Tom helping Ainsley hunt for Easter eggs.
What great grandparents!
That day Steve rushed over from work and we called the kids as soon as they got home from school so they could tell grandma how much they loved her and would miss her. Sadly, Ainsley didn't make it home in time. Later I tried to tell her but I don't know if she understands. Every December 23rd we gathered at Joanne's house for Christmas. Ainsley would always put a bow in Grandma's hair. It's going to be hard this year. It breaks my heart in so many ways.
The last time I was at her home it was a beautiful day and we were celebrating Tom's son's wife Jen's baby shower. Joanne was an avid but reluctant gardener, much like me. We were alike in certain ways. We both left work to be home with our kids because we wanted to be there for our children in ways our own mother's weren't. She worked at Merrill Lynch as a broker and I as an Accounting Manager. Home and family was important to her, like it is me. We were particular about things and did our research. We could be serious but also loved to have fun. We both liked to stay up late and sleep in. When she wasn't at home you would often find her at the casino or traveling. When she was younger she was a ballet dancer like Evie. I regret that she never saw Evie dance en pointe. I'm sure she always thought she would come next time. She and Adrian loved to play Margaritaville in the garage, they had a bit of a rivalry and she was amazed how good he was at it. She was so proud of all her grandkids and had a special place in her heart for Ainsley. Not having her in our life will leave a hole.
This is the last picture I have of us. Evie took it that day at the shower. My (half) sisters Rene and Erica are on the right. We will all miss her so much. There was so much left I hoped we would do.