Oct 18, 2020

14 Years

2020 has not quite been what I expected. After Covid 19 hit in March blogging just didn't feel right. It's been such a tough time for so many people in so many ways. 

Our family has been doing well, all things considered. We've been keeping very isolated for Ainsley's protection since her airway is still somewhat compromised due to scar tissue above her vocal cords and she already depends on CPAP for sleep. Respiratory viruses are risky for her, Covid especially.

Since I lasted posted Steve started working from home. We are so fortunate that he has a job that is conducive to that. He's adjusted to working at home and is tolerant of me pestering him throughout the day. I think he generally likes working from his "man cave" in the garage, except for the odd occasions when he's in a meeting and the garage door opens. It is nice that he's no longer late for dinner.


Evie was enjoying life in a dorm at the University of Washington but moved back home in April. Not knowing how things would be, come fall, she signed a lease for a house with friends on Greek Row. In September, rather than break the lease we moved her in. Although her learning is all remote it's good for her to be able to live more of a college life. She has more freedom than if she were living at home, due to precautions we have to take to protect Ainsley. You probably know Evie loves working as a princess for hire at kids' parties. Like everyone she had to adapt her work when social distancing was put in place. She made some video recordings for kids that were posted on websites so it wasn't uncommon to see her setup with a video-camera and lighting in full costume. Now that restrictions have eased up a bit she's worked a few parties like here as Ariel recently where she was happy not to have to wear the sea-shell bra. Her work problems are not quite typical.  She also spent a lot of time sewing and making costumes.

Adrian's school was closed back in March and and several events for him were cancelled, one after another: the State Thespian Conference trip, the Ballyhoo show of Spelling Bee, the Spring RHS show, and even the Jazz Choir trip to Disneyland. He is enrolled in the Running Start program and will be "attending" Bellevue College for his Senior Year. He went from a mid year Junior to never going back to High School! We hope things will improve enough that there will be graduations and proms this year but only time will tell. During Covid Adrian has been keeping himself busy playing board games with his dad, experimenting with new hairstyles (no better time, I'd say), playing video games and teaching himself Japanese(Kanji).


Not a whole lot has changed for Ainsley since Covid as we were already homeschooling. I was very thankful not to be making that transition during these stressful times! We did stop going to Physical Therapy and our weekly pool therapy. Ainsley's favorite thing about homeschooling is being able to wear her pajamas and bring her dolls. She likes to teach them and I find it motivates her and helps keep things fun. She "reads" to them, writes on scraps of paper and pretends that it's their lessons. I know she misses being out in the community but her health has to be our top priority. 

Recently we harvested grapes from our vine. Ainsley helped and learned to separate the good from the bad before we turned them into raisins for baking. She had a great time with her "girls" as they pretended to be pressing grapes for wine, which was a bit of an ode to Grandpa Todd's wine making painting from his days as Barrel Master at Chateau St. Michele. Sadly he passed away suddenly in July. He was so loved, and will forever be missed!

We ate and processed SO MANY grapes! We filled this bucket twice.

Ainsley made sure all the dolls tasted the delicious grapes.

Making our own raisins was definitely a learning process!

The girls also join us for reading time and even our phonics work with flashcards. Ainsley is now reading about 20 words by sight. It's slow, but still progress! 

We've been working extra hard on exercises. Although it was sad to have to discontinue therapy she has made impressive gains in the past several months. If we walk behind her she will take steps independently from point A to B. We have increased the distance gradually and sometimes she can even make it across the bedroom without falling. Most of the time though she will fall back and we catch her before she gets hurt.  For those of you who may not know I think it will be a BIG surprise. This day she did especially well and I am so excited to show you!

I am posting this on the eve of Ainsley's 14th Birthday. I am in the hospital blogging and it brings back memories though this time I am not here for Ainsley but for my mom. She had a hemorrhagic stroke but received quick treatment and is doing quite well, considering. Caring for Ainsley all these years has made me strangely well prepared to be the person to manage a medical crisis. It has been a crazy 14 years with this amazing girl (young lady, really) but boy do we love her! I think she's going to continue to amaze us, that is for sure!

4 comments:

  1. Wow!
    Time sure has flown by Susan!
    Kind of brings tears to my eyes as we have been on this journey together right from the beginning.
    Seeing her walk towards you, so impressive and boy she sure does love you.
    Love that you are giving Evie the college feel still!
    She has grown so beautifully!
    For real is that Adrian? Time has really escaped us!!

    Miss you heaps.
    I have booked an entire week off in November, my home phone is static central, I will try to replace it by then and we can have a catch up!
    I miss your voice.
    I miss our conversations.
    Love you my friend.
    Give everybody squeezes from me.
    ❤️
    Lisa

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  2. Wow that is great news I remember when I was 14 I think I was in 8th grade how time flies when things are busy

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  3. I keep checking back on your blog for an update on your life and Ainsley. I hope you have been well and I hope to read about what Ainsley has been up to.

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  4. Love this blog... and her dolls! (Just found this link again :) )

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