The Not So Empty Nest

Tonight I am avoiding what I should be doing in the HomeSchool Office. I'm in purge mode. Clutter is on the chopping block. Digital too. I was deleting some old e-mails and ran across one from an old friend. She'd moved out of town before Ainsley was born and I am afraid I am really a different person from the one she knew. But I sent her an e-mail anyway. That lead me to an e-mail that warned of a password breach which led me to my blog. I honestly haven't opened it in so long I was a little worried it might not be there anymore.

I found some of the most hideous comments you can imagine. The kind that makes you seriously doubt humankind has any hope. They were automatically blocked, thank God.  To the guy getting off on the ancient video of my child having their spica cast removed who's sending vile sexual comments this is to you: I see you and will be praying for your soul. Please reevaluate. Is this truly how you choose to spend your life, being THIS person?  Ainsley is beautiful and amazing and what you write is a reflection of you but has nothing to do with her so it doesn't hurt us, but does tell me everything about you.

That's to explain why I was in the comments that Blogger filters out. But there were also a few repeat comments from one of you asking for an update. I really did leave you hanging with my "Where Do We Go From Here." post and that photo of her in the hospital bed. I scanned my drafts hoping for something light I could post real quick. Yeah, that doesn't exist.

In my drafts there was.....

The Trainwreck (That one would have been highly entertaining but long.)

Sweet 16 (That's an oldy, and would've been a goody, but is way too old now!) 

2018 What Happened? (Oh my gosh!!!- The half written posts are fascinating glimpses into things I've forgotten. So many details I wish I'd recorded because my memory doesn't actually work on it's own. And how am I going to get credit with Adrian for calling all over the city to find a Where's Waldo hat for him at the last minute for Halloween if I don't even remember I did it?! And I don't document it on the blog.) I need all the Best Mom Ever credits I can get. 

Anyway...life....it has been happening and slipping through my fingers. There is way too much to cover but how are we? Hanging on. Ainsley is still trached, awaiting a few surgeries before we can even consider getting it out. The ptosis surgery was bumped from December to February. Her airway is still questionable anyway and the trach could be here to stay. After this many years I'm much more tolerant of it. Or I'm worn down. Or both. 

The super short version is I lived with her there in the hospital for 2 months. In addition to the airway trauma She'd got a bad case of Rhabdomyolysis and lost a lot of muscle and the ability to walk. Did supervised Dysphagia therapy to be allowed to eat. They tried to hold us hostage until we got a home nurse for the trach but I wasn't having it. We broke out in May. We did months of in-home therapies. Because there was no nurse to attend school they sent a teacher home to us.  Eventually we got her back into school, there was a bad nurse and a broken tailbone. It was rough. 

There was an airway reconstruction. G-tube surgery. 8 teeth extracted for braces. Craniofacial surgery. A terrible Esophageal Manometry procedure where a probe was mistakenly put down her airway for 20 minutes. Things. Lots of them. Suctioning. Lots and lots. That's the short version. The long version will have to wait for when I write a book. Which is never going to happen, BTW.

In 2024 she turned 18 and we used a lawyer to get guardianship. Later we applied for her disability Social Security benefits, WA State caregiving pay now that she's a disabled adult. It's a whole thing.  If you have an adult disabled "kid" you know and if you don't you have no idea what you're missing. I'll leave it at that.

Despite it all we persevered, and she GRADUATED!!! And YES I have pictures for you!!!

I will say that it's bittersweet. In May I was at a dinner party where two friends both had daughters attending  prom that night...beautiful in their dresses...going off to college. Proud moms as they should be. I cried in the bathroom. 

But we take our victories for they ARE victories. I sent Ainsley back into school despite my reservations about the 1 and only available nurse. We managed to get all the Oceanography projects done, so she met the qualifications to get her diploma, just barely. We could easily have asked for her to go back to high school next year but didn't. I asked and Ainsley wanted to attend graduation. (I showed her video so I was sure she understood what it meant.) She sat patiently for hours without complaint. The school made sure she could participate so in June 2025 she "walked" in her wheelchair, with a nurse, across that stage with a smile on her face. I was so happy for her! 

I took her for Senior Portraits so she got to have that experience in the studio. They turned out BEAUTIFUL! I got the canvas to match Evie & Adrian's which completes the set. My 3 amazing kids. Each unique and loved for being exactly who they are. I think of the quote by Charlotte Mason, Children Are Born Persons. I wish I'd learned about her earlier in my parenting. I think back to a comment when Ainsley was 2 at Boyer Children's Clinic; a nanny there said Ainsley moved with a special grace, like a dancer. And I see that in these pictures. Despite her disabilities she was born a person with this quality that has nothing to do with the thousands of hours of therapy she's received. 

I will always teach her at home and do home therapy for physical, speech and AAC. But there's a huge relief in completing the legal requirements and doing it solely because I want the best for Ainsley. 

What will adulthood bring for Ainsley? All I know is our nest will never be fully empty though I am preparing for that phase whatever it looks like. Being a mom has been the greatest honor of my life. I tried to create a happy home that was beautiful and full of love and creativity despite our challenges. Evie & Adrian are still living together in an apartment in Seattle and are doing well. Although I'm happy they're using their wings I hope they will visit home often. Ainsley's enrolled in the Transition Academy program through LWSD that she qualifies for until she's 22. It's kind of a "vocational program for the intellectually disabled" and as such it's optional, is how I'm looking at it. She's not loving it but I'm hoping she will continue to give it a try. I feel a huge sense of relief that we met graduation requirements so we could opt to be DONE and structure life any way we choose.

Thank you for caring about my dear girl. Although she is not loving her circumstances she is strong and resilient. She gets it from her mama. She will be okay and I will try to update more often. Here are those pics.