Final Days of Fifth Grade

Franklin Elementary School has been home to Teddy for the past 6 years. After spending his 3K and 4K years at two different schools, we were excited to settle into Franklin Elementary School for the foreseeable future. Though I was disappointed at the time (OK, I recall sobbing hysterically) to learn that Teddy wouldn't be at the same school as his older brother, Teddy was meant for Franklin.

This little guy started kindergarten wrapped in love and support.

As I searched back in time to find pictures of the early years, I was reminded of so many memories and milestones. Though I'm sure I'll miss some important events or notes, here's some of the highlights:

1. Teddy's first field trip (and all the subsequent ones). His kindergarten teacher set the bar high for inclusion, and I loved witnessing Teddy with his friends. (I also loved when I realized the school would send paraprofessionals with Teddy, so I didn't have to chaperone every field trip. Sorry not sorry for letting them attend plays with Teddy instead of me!)
2. Birthday party invitations and the chance to hang out with friends outside of school. Teddy made his first close friend on the bus, followed by others. Now Teddy's friend Brad is his only friend who will be at his new middle school. The two of them are wonderful friends, and it's so fun to see them hang out together.
3. The power of advocacy. I witnessed that in his kindergarten year when I shared my feelings on this blog, only to have them read by others in the school and then I heard from the principal. I learned valuable lessons about channeling my advocacy first to the appropriate channels and then determining how much I shared here. But I did learn that asking and advocating will open doors like the next one.
4. Teddy's first concert. He wasn't included his kindergarten year, so we engaged his team to make sure he was included every other year. In fact, he even played the ukelele at his final concert this year!
5. Elopement. This experience was surreal (particularly the circumstances unfolding when I heard firsthand what happened the next day) and is irrefutable proof that Teddy has a whole team of guardian angels (who apparently all took a break at the same moment). We got darn lucky this day, and I don't think it's something his team will ever forget. While it still didn't get 1:1 support for Teddy, it did put in place 1:1 support when outside of the school building in a safety plan. Though that safety plan never got tested fully right away because ...
6. A global pandemic shut down all schools for the remainder of the school year. And then we did a modified school year for two entire school years. (Holy cow ... I can't believe we lasted 2 years with that child in a bubble to protect him.) His teacher wore full PPE for that first year (mask, gown, gloves and face shield ... which is just insane to consider now but was so appreciated at the time.
7. A paraprofessional who asked in January or February 2020 whether we ever would be interested in childcare for Teddy, and I answered yes before she finished her question. Because of the global pandemic, she actually stepped in sooner than intended for childcare, moved in with us for a period of time, spent holidays in quarantine with us and became a part of our family. It's weird to know that this wouldn't be the case if Teddy went to any other school.
8. Beautiful art projects, including some of my favorite Christmas ornaments and homemade gifts. It's so wonderful that his team helps him to create these little masterpieces because he is truly proud of the work he brings home. 
9. Fantastic bus drivers and aides. We've made a lifelong friend who commandeered a bus to bring to Teddy during the COVID years to give him his bus fix. These ladies have always watched out for Teddy, and I've always rested easy when Teddy was in their care.
10. A DARE and 5th grade graduation ceremony where he scampered up to get his DARE certificate ... and then tried to run away in the opposite direction. After a break from sitting (riding on his chariot of a bike), he came back for the 5th grade promotion. Yet he was very particular about the magnetic toys and organizing them back in the box, so his teacher had to physically redirect him to get his certificate. Yet afterward, his teacher commented twice on how good Teddy did. Not only did that make me chuckle, it also makes me wonder what most school days look like.

Now he's a big 5th grader celebrating graduation with his amazing teacher.

This school has been home to Teddy for 6 years. While we're so excited for the opportunities in middle school and think it'll be amazing for him, it's bittersweet to say goodbye to Franklin Elementary. As I mentioned above, only one of his classmates will be joining him at his new middle school (the downfall of not being placed at our home school that feeds into our home middle school). This is one of the bitter parts because all the kids at Franklin, every grade, know Teddy by name, and most are excited to see him. I watched the kids at graduation cheer extra loud and give extra high fives to the kids like Teddy and the ones who need a bit more love (like the little boy who immigrated this year from Africa knowing no English ... funny story, Teddy's universal language of gestures and smiles convinced this kid to join him on the carpet when everyone was supposed to be sitting at their desks ... still makes me chuckle.)

This week will be a hard one for me, as mom, to let go of the elementary years. Right now it's less about the uncertainty of middle school and more about the sadness of leaving behind the friends, teachers and support staff who have embraced Teddy fully for who he is, helped him be his best and loved him (most moments at least when he wasn't testing those boundaries). 

Happy World CDG Day!

Happy World CDG Day! Today is a day to celebrate (aka raise awareness) of Congenital Disorders of Glycosylation. There are more than 160 different types of CDG, and Teddy is affected by PIGN-CDG. PIGN is extremely rare, as we were told it appeared Teddy was the 15th in the entire world when we got his diagnosis in 2015. We now know of approximately 100 cases of PIGN-CDG between research and our global PIGN community, which feels like so many compared to the handful of other families we first met virtually in January 2016.  

An oldie, but goodie for World CDG Day!

Today is about raising awareness. AJ, Teddy's older brother, is doing his part in presenting at his school. He's done this every year since kindergarten, at first with me leading the way and then him creating and sharing more and more each year. In fact, this is the first year I think he's flying solo for his presentations because I'll be at a conference presenting about building your community and connecting with others when your child has a unique diagnosis. AJ does a phenomenal job with his presentations, and he also manages to tie in his fundraiser where he's 3-D printing fidgets and dragons for research. If you're interested in ordering from him to support his fundraising, you can click here.  

Speaking of fundraising, I'll put in a shameless plug for our overall fundraising effort. We, as a collection of PIGN-CDG families, are working with scientists, doctors and researchers to research potential treatment options for PIGN-CDG. The current approach is drug repurposing, which evaluates thousands of known compounds (including medications, supplements and other compounds) to see if any of them may potentially benefit PIGN-CDG. This is expensive and time-consuming research, and it's all being funded by donations and fundraising as 100 people in the world doesn't tend to pull in the interest from big pharma. The progress we're making is exciting, with a handful of compounds that show promise to test on skin cells. Teddy provided a biopsy last year, so that his cells and specific mutation may be included in this testing phase. (Fun fact, of the 100 families with PIGN, very few are affected by the exact same mutation ... many of our kids have unique mutations that impact their overall functioning.) If you're interested in helping to fund this important science, you can donate here. 

If you're wondering why you'd want to donate, simply watch the video at the end of this post. This video represents a large number of the individuals affected with PIGN-CDG. You'll notice little doves by some names. Those are the sweet souls who we've lost, as this disorder takes our children from many of our families far too soon. 

Now, if you're still reading and wondering what in the world CDG is, I'll give you the cliff notes version. It is not Cute, Daring and Goofy, though that is what sometimes I feel is true for Teddy. Congenital means it exists from birth. This is a lifelong, genetic condition. Disorder seems to be pretty obvious, meaning that something doesn't function as intended. Glycosylation is the tricky part of this diagnosis, both to say, understand and do (for those affected). Glycosylation is how the body processes sugars on the molecular level. This has nothing to do with eating sugar but rather the building blocks of cells and how cells process those building blocks. Essentially if you think of each cell as a mini factory, there's a defect in the assembly line and the sugar block can't be added to the protein chains. These chains are what help our bodies do every function, which is why CDG-PIGN affects someone on every level. This site does a much better job of explaining glycosylation than my jumble of metaphors. 

So, there's my bit of education, awareness and fundraising for World CDG Day! Now enjoy the sweet, smiling faces of PIGN that bring so much joy into this world! (I'll try to get the video directly embedded in this post, but for now, here's the link to the reel.