New Beginnings and Sad Goodbyes

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...

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

Cheers, Jeers, and Years that end in Zero

It's only been 23 months since I've put my thoughts down on "paper." That beats the 2.5 years from the previous one. Last time I blogged, the girls had just turned 18. Now...they are knocking on 20's door. My oh my...how the world has changed since we were last here. 

We finished the Fenfluramine clinical trial at Mayo Clinic the summer of 2020 when the drug was FDA approved. (Celebration pictures above!) The girls continue to do very well with this new addition. It's really been a life-changer for them and we are thankful we were able to participate from beginning to end. Shortly after we finished that trial, we started a new one at the University of Iowa. In the beginning of this trial, the girls were given a seizure-alert watch that they wore for 6 months. We had to keep track of seizures and sleep and that information was compared to the information the watch electronically sent to the manufacturer. It was an interesting and somewhat frustrating experience. Let's just say we weren't sad when the six months were up. We continue to participate in this trial without the watch. The other portion of this study is to see if cognition changes with Dravet patients as they age. Every six months we travel to Iowa City and the girls are given cognitive testing and we complete questionnaires about how we feel they are faring in many different cognitive/emotional/physical areas. We will finish this study next summer. We did find out at our last visit there is a new medication for Dravet patients entering a phase 3 clinical trial later this year that we may participate in. We thought we had aged out when the girls turned 18, but this one is open to patients up to age 21. So...we shall see. We have a unique opportunity to help science (yay science!) given the girls are identical and also present identically in their seizure patterns. It is a commitment though. We've literally been in a clinical trial since 2015.

The girls are doing very well. Their small seizures have been greatly reduced (75%ish). Their large seizures have decreased by 25-50%, depending on the month. Their communication has increased by leaps and bounds. They are speaking like true teenagers. "You're pissing me off" is said regularly around here...and not by Matt or I! It is amazing to see how they can articulate how they are feeling. They still have some emotional outbursts, but for the most part are able to put into words how they are feeling and exactly what they want. Speaking of what they want...Lindsey wants a car. A blue car. And she wants to drive that blue car. She has it all figured out...she knows how to drive and all we need to do is buy her a car. This has been an emotional struggle for us when trying to explain to her why she cannot drive. We've tried to explain many different reasons with the last resort being she can't drive because she has seizures (because she just won't let it go!). That ends with both of us in tears when she says, "I won't have any more seizures, I promise..." Sigh... Lindsey is also very interested in being part of every conversation, whether she's invited to participate or not, and is busy, busy, busy. Her questions are never-ending and she wants to know everything. She's our social butterfly and always has a hug to give. 

Lauren has no interest in driving, or leaving her recliner in the living room. Yes, it's HER recliner, just ask her...no wait, she will tell you! And her TV, her remote to the TV, which she has mastered, and uses to watch all of her favorite shows. She enjoys playing on the computer, reading books and just chillin' by herself. She isn't a social butterfly like her sister, she's the chrysalis - in her own world, doin' her own thing. She gets hangry and has some pretty serious emotional outbursts on occasion. We're still trying to figure out the best way to handle these...it's hard and exhausting. Other times, she is the sweetest young lady you ever did meet and we treasure those times. 

They will be entering 14th grade this year at Southeast Polk. We are thankful they are still able to go to the place they love and will be really sad when the day comes that they age out at 21. That thought literally sends me into a panic... In order to participate in adult programming, they will need to transition to a different waiver program through the state, called the Intellectual Disability waiver. We've been on the waiting list for this waiver for nearly 3 years (October 2, 2018) because there is no funding available to open up the wait list. The next slot to open on the waiver is for someone who has been on the wait list since December of 2017... I can only imagine how many individuals are sitting on the waiting list...it's heartbreaking and infuriating. I just hope our girls have a slot by the time they turn 21. 

The "big kids" are doing well! They are both thriving in their adulthood and we love having them come to visit. Delaney's adopted a new kitty who literally rode to work in the engine of her boss' car one day. She'd adopt all of the kitties and puppies if she could...she has a heart of gold. She's still working at her alma mater, Coe College, and recently received a promotion! Mason has been helping out a lot this summer providing respite for the girls. He's such a kind and patient young man. How many 21 year old's would be willing to care for their disabled little sisters?  Not many... He has a very sweet girlfriend, Kennedy, and they are enjoying life together. We are truly blessed with these "kids".

Matt and I will celebrate our 25th anniversary in October. That means we've been together more than 1/2 of our lifetime. Dang... We're still going strong, making each other laugh, and doing the best we can in this crazy life we've been given. We are blessed...

As I type, I am on the eve of starting a new decade. 50...how did this happen? I just turned 40! Oh well, I'm embracing it and thankful I'm here to celebrate another year. This past 18+ months have been hard on all of us. We're living through a pandemic that has lasted longer than anyone anticipated. The divisiveness we are facing these days is disturbing. I've said this before, much to my husband's dismay, opinions are like a$$holes, everyone has one. We keep our a$$holes to ourselves, and so should we keep our opinions. Imagine what this world would be like if we stopped worrying about everyone else, and just focused on ourselves. I can only imagine... Be kind, because kindness can change the world. And Lord knows...this world needs some changing. 

Thanks for following along on our journey. Be well and love one another.

Kim