It's been 22 months since my last post... So many ups, downs, laughter, and tears since then. Changes, lots of changes...and where to begin? From where we left off, or where we are now?
Now it is...
On May 18, 2023, after 17 years in the Southeast Polk School District, L&L had their final day of school. We were blessed with many amazing teachers, associates, nurses, bus drivers, school friends, and many others who made a positive impact on their lives. I shed a lot of tears that day...both of pure joy and pride to sadness and fear. Sad that it ended and fear of entering the "adult" world. We knew each day when they got on the bus to school that they would be loved and well taken care of. It's hard to let that go...
It took us a while to convince the girls that they would no longer be going to school. We told them they were adults now and will get to do adult stuff. Lindsey asked for a red car...again.
From the beginning...
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To the end...
And now to where we left off...
In my previous post, the girls were just turning 20 years old. They are now 21 (can you believe it?!?!) and only 111 days until they turn 22. You may ask how I know how many days until their next birthday? That's because we ask Siri almost every morning "how many days until October 3?" It was 300+ days when we started... Also in my previous post, we'd been waiting 3 years for a slot to open on the intellectual disability (ID) waiver. In October '22 they turned 21, we were 4 years in and still 1000 deep on the waitlist. With the end of their school days imminent and no services available for them post-school, Mom put on her advocacy hat and made some noise. Thankfully just before Christmas, we were notified they had a slot on the ID waiver and doors were opened for their future. Unfortunately, those doors were met with more waitlists for adult programming... So we went on more waitlists, dug deep for more patience, prayed for divine intervention, and waited.
Last month, we went to visit one of the adult programming centers (aka day hab) and really liked it. We were elated when they said they had an opening for both girls! L&L will start at their "new school" on June 26th. We are hopeful they will have great experiences, meet new friends, and thrive as they enter this new phase of life.
Last summer, we decided it was time for the girls to have some new experiences and signed them up for summer camp at Easter Seals. For 20 years, they've always been with caretakers in our home. It was safe, and we had control. This was a huge deal for them and US! Loosening up those apron strings and sending them to camp was not easy. But, oh boy did they have fun and oh boy did we worry about them! They did great and had their best summer ever. Swimming, horseback riding, crafts, meeting new friends...all good stuff. Last fall, we loosened those strings a bit more and sent them to Easter Seals for respite weekend. We dropped them off on Saturday morning and picked them up on Sunday afternoon. This was huge for us, and so exciting for them to have a sleepover at camp. And I'm not going to lie, it was good for us too. Did we worry about them? Every minute! But, as they get older and seek more independence, it was a good place to start. They just started summer camp again this week and are having a great time and still continue to go to respite weekend once a month.
We also finished up our 3rd and final clinical trial last summer. This final one was different and did not involve medication. At the beginning of the trial, the girls wore seizure alert watches and we had to keep track of their sleep and seizures. It was cumbersome... and thankfully only lasted a couple of months. The remainder of the trial included visits every 6 months and the focus was on measuring developmental delays/cognition in patients with Dravet Syndrome at different age levels. Every visit we had to complete multiple questionnaires. The girls also met with a psychologist and underwent cognitive testing. Again, cumbersome, but important. It was interesting to participate in the clinical trials (yay science!) and to see two of the medications receive FDA approval. One of those medications has been a game-changer for our girls and has given them a greater quality of life. For that we are eternally grateful.
Unfortunately late last year, Matt's mother and my father passed away within a couple of weeks of each other. Jean's health had been declining over the past couple of years and on November 30th, she and John were reunited again in Heaven. Although her body was failing, her mind was sharp and we enjoyed many visits with her in Greenfield. Jean was a mother of 12, full of faith, and I admired her so much. I hit the jackpot with her as a mother-in-law! We all miss her greatly, but rejoice she is whole again and finally in Heaven, where she longed to be.
The girls always made a grandma sandwich and she enjoyed the snuggles and games.
My dad went to bed on December 8th and passed away in his sleep. If you knew my dad, you know his life was full of challenges. What a blessing for him to leave this Earth peacefully. Mason and I had breakfast at the Waveland Café with him the morning of December 8th. It was the day before Jean's funeral. He was in good spirits and we had a great time together. I asked him if he wanted to go to Jean's funeral with me and he said, "yes, but no." We talked about going to Costco the next week for some cookies. He got out of the car and said "love you, bye" like he always did. Although I didn't get to give him his final goodbye, I am thankful "I love you" were our last words to one another. He was one of a kind. I miss him every single day and still can't believe he's gone. After losing a parent after an extended illness and one suddenly, it is so much harder to not have that closure. I am sure Mom was there to greet him with open arms and probably said, "what took you so long!" I'm glad they are together again.
No caption necessary...
A song that's been on repeat on my Spotify is "'Til You Can't" by Cody Johnson. Take a listen and make note of the lyrics below...
You can tell your old man you'll do some largemouth fishing another time
You just got too much on your plate to bait and cast a line
You can always put a rain check in his hand
'Til you can't
You can keep putting off forever with that girl who's heart you hold
Swearing that you'll ask some day further down the road
You can always put a diamond on her hand
'Til you can't
There's a box of greasy parts sitting in the trunk of that '65
Still waiting on you and your granddad to bring it back to life
You can always get around to fixing up that Pontiac
'Til you can't
So take that phone call from your momma and just talk away
'Cause you'll never know how bad you wanna 'til you can't someday
Don't wait on tomorrow 'cause tomorrow may not show
Say your sorries, your I-love-yous, 'cause man you never know.
If you got a chance, take it, take it while you got a chance
If you got a dream, chase it, 'cause a dream won't chase you back
If you're gonna love somebody
Hold 'em as long and as strong and as close as you can
'Til you can't
Until next time...
Kim
