Ainsley's Biggest Supporter

November 24th was a hard hard day. This is from someone who's had a lot of hard days. Unexpectedly I received a call that Monday that my birth mom was in the hospital with an acute case of Pancreatitis. Overnight things took a turn for the worse and by the following day she needed dialysis for kidney failure if there was any chance she would live. I wanted to give her that chance but other family thought it was futile so the medical team withdrew treatment. We gathered around, held her hands and waited for her to pass away, which she did after a half an hour. I am no stranger to tears at the side of a hospital bed but this was different and truly was the hardest thing I've ever been through in my life, probably for everyone involved. For that reason I encourage everyone to consider creating a Living Will. 

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.

She was there to celebrate the birth of all 3 of my children, starting with Evie.

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.

A Boo Humbug Halloween 2015

This year while driving carpool one afternoon I confessed that I was feeling "Bah Humbug" about Halloween to which Adrian replied "You mean Boo Humbug?"  I thought maybe it was a new saying these days. Like "same" which comes out of my kid's mouth 100 times a day now. Adrian hates Halloween so I thought it was his new thing, but I guess he came up with it on the fly. Now I'm making it mine.

2015 was a bit of a Boo Humbug year. We have a lot of traditions that the kids love and sometimes it's a whole lot more than I want to do. This year I'd been busy trying to wrap up some projects so as Halloween approached we still  had no costumes by the week of Halloween. (Except Evie who'd bought a Merida dress when we were at DisneyWorld in June.) I didn't feel like decorating.  We hadn't carved our pumpkins. Adrian had been asking for weeks to leave us on Halloween and go out with friends and I was a bit bummed at the thought. October is my favorite month but I wasn't feeling it for Halloween this year.

I don't think you'd be able to tell by the pictures so that is why I'm telling you. Sometimes I think there is a real danger in our modern world of making things appear to be easy and picture perfect. The truth is that sometimes (maybe even a lot of the time) we have to do things we don't feel like doing. For me when I do it usually turns out that I'm glad. We pulled it together for Halloween at the last minute and in the end we all had fun, even me.

Ainsley heading off to school Friday morning as Little Red Riding Hood. Evie wore this costume two years ago. I was so happy it fit! If you remember Ainsley was Red Riding Hood's granny that year. This cape was mine when I was a girl. I made the basket for Evie when she was 3. 

Friday night Adrian went off to his school's dance. I was feeling a little under the weather and hoped to snuggle on the couch with Ainsley to watch a Halloween movie. Ainsley insisted on carving pumpkins with Evie and Steve.  With the beautiful pumpkins we'd been given by Remlinger Farms it would have been a terrible waste not to carve them. We had planned a fun night of appetizers and family pumpkin carving for Wednesday but I'd accidentally given the kids permission the prior week to go "booing" with friends.  That's how things were going this year. Boo Humbug!

Etching Harry Potter into the pumpkin.

As I prepared the seeds for roasting Ainsley decided to play under the table.

 Adrian came home from the dance after having a nice time but didn't want to carve pumpkins.

Ainsley was having fun (I swear) though she would not smile for a picture. My seeds got knocked on the floor.  I was done and went to bed and we left 2 pumpkins uncarved. Boo Humbug!

The finished pumpkins the next day on Halloween.

 

Evie's awesome "Harry Potter casting a Patronus pumpkin".

Ainsley's (with help) on the left and Steve's on the right.

Steve put out all the decorations this year with a little help from our kids. I was quite thankful not to do it. It turned out we had 25 Trick-or-Treaters (way up from 1 last year) making it more worth the trouble. Steve puts out scary music so it is quite atmospheric for the few brave kids who come. 

The "graveyard".

Our giant spider lair, with ravens and bats.

An inside view of the spooky dining room. I love that we found a use for our Medusa pinata.

 It sits at the dinner table with the skeleton and mummy baby.

Ainsley stole pumpkin seeds while I tried frantically to help Evie fix her hair. She'd neglected to set it in rag curlers the night before as planned (remember I'd gone to bed) so it didn't have enough time to dry properly, since her hair is so long. Then we quickly sprayed it orange. Poor Adrian. He did a good job holding his temper in check since he was supposed to already be at a friend's house, and was ready and waiting on time. We needed to get the group shot before he left for the night. 

I suppose he'll/we'll laugh about it some day. 

Boo humbug.

This may be our favorite joint family costume (though it's pretty hard to top the joint Harry Potter costumes): Characters from the hit show "Once Upon A Time" from left: Merida, Captain Hook, The Evil Queen (note the heart in hand), Robin Hood, and Little Red Riding Hood with the Big Bad Wolf.

The girls ate mummy dogs with mac n cheese and mulled cider before heading out trick-or-treating with Steve around our neighborhood. No soup baked in a pumpkin this year. 

Evie begged. Repeatedly. I refused. Repeatedly. Boo Humbug.

Penny went out trick-or-treating for a bit as the Big Bad Wolf but was a nuisance so they brought her home and we hung out. She was equally annoying at home barking every time the doorbell rang. Barking dogs are a pain in the ass on Halloween. Boo Humbug.

The girls with their piles of candy. I LOVE that Ainsley is now able to eat candy and really enjoy that part of Halloween.  She picked M&M's as her first candy to open this year.

Adrian had a blast with his friends and came home with the biggest bag of candy you've ever seen!

I hate the amount of candy Halloween brings into the house. Boo Humbug!

We had store bought mini pumpkin bundts with pumpkin and caramel butter pecan ice cream.

Like they needed more sugar. Boo Humbug.

Ainsley had an awesome Halloween and ended the day perfectly by falling asleep in front of the fire. 

Here is a video to kind of show how trick-or-treating works for a child who is non-verbal and in a wheelchair (although Ainsley's doing great in her walker it's just too much walking at once). 

For those with AAC users: Here is the "Quick Replies" page of her AAC device, which I  programmed for temporary use. The buttons are easy to find since they are orange and are quick to access on this page, making it easy for her to interact socially during the holiday. 

Life with child who is medically complex with special needs is hard, everything takes some extra effort, but it's really worth it to see your child be able to participate fully in life.

Ainsley Turns 9!

For Ainsley's 9th birthday, on the 18th, we spent the day at Remlinger Farms. When the kids were younger we used to take them there in the fall to get pumpkins because their fall festival is so much fun! This year my sister Leah suggested a pumpkin farm outing so we decided to wait and do it on Ainsley's birthday since it is pretty close. Evie and Adrian are a bit old for this place but they still had a great time! It was fun to spend time with cousins Issabella and Owen. At age 4 &5 they are the perfect age for the rides and special fun at Remlinger Farms. 

The grounds are expansive and this is just a glimpse of the property.

We started with a train ride around the grounds.

There are so many scarecrows around the property. It's so fun for the kids.

A pair of unlikely friends.

They had a blast riding the antique cars. The word is that they were retired from the Seattle Center. Ainsley had a blast driving our car!

Couldn't resist this photo op for my girl who loves dinosaurs. 

I love the message! We love old fashioned fun!

Grinding corn.

Feeding the animals.

E&A have a little thing about who is tallest. It won't be much longer that Evie can pretend she is taller, though Adrian is only recently turned 12. I love the way they are together.

The kids were sweet riding the rides with Ainsley. 

Evie was a rockstar climbing the wall! 

Ainsley tried crawling through the hay maze but didn't love the feeling of the hay on her hands but she made her way through walking with Steve. We couldn't do the corn maze out in the rain with the mud and wheelchair so the hay maze had to do. I was proud that she went in the hay pile. A lot of kids with sensory issues wouldn't get near this place. It was a sensory experience like no other! 

 Auntie Sarah was such a great sport playing with the kids in the hay pile!

After Remlinger's we went back to the house for cake and a bit of food. I thought Ainlsey would get a kick out of the 2 foot sandwich. We kept it simple and it was a great day for our special girl. All week she'd been pointing to a picture of the cake on her Courduroy's Birthday book.  In this video you can see just how happy she was about her cake! *(The bakery let me come back after hours and write the message on the cake since they didn't have someone to do it. I was so glad we went to the trouble. It was her favorite color, yellow. Perfect!)