Wednesday, August 29, 2018

CdLS Conference

Whew! The kiddos are finally back in school

and it's time to start doing all those things I said I would do but haven't because there were 1000 kids living here all summer and I literally couldn't hear myself think at any given moment of any given day and refereeing arguments was my #1 job and boy did I own it.. By the way, does anyone happen to know where that mom went who used to write sappy back to school posts about not wanting her kids to leave and missing them? Hmmm... weird. I'm not actually sure either.. Anyways, all those things I said I would do and haven't? Starting with updating this blog about our CdLS Conference trip! Well, actually the first thing I did when they went back to school was scrub this sticky floor because summer + 5 kids = ew. But now that that's checked off the list, to the blog we go. (And also thank-you's from Ella's Run are going out soon too! *hangs head in shame.. I ordered them immediately after Conference and had been waiting and waiting, and forgetting, and waiting for them to come in the mail until I just realized last week I was supposed to pick them up at the store. Oops..)

Way way waaaaaayyyyyy back in June (it feels like a long time ago) we were able to attend the National CdLS Conference in Minneapolis which is just a hop, skip and a jump away from us so YAYYY for saving lots of money on airfare! This was our 4th Conference which is just ridiculous that time has gone by so fast that it's even a possibility that we've been involved with this community for this long but also WOW, what a blessing that we've been able to attend all of them since Ella has been born and we learned about CdLS for the first time! We were able to drive up a few days early and stay at my aunt & uncle's cabin about an hour south of where the Conference was. It was SUCH a nice few days of getting away for our family (besides Hudson spiking a 102 fever on the drive there..). We were able to fish, boat, swim, play games, relax and just hang out together. Perfect vacation!

After a few days at the cabin we headed up to the hotel to get checked in to Conference. From the  very minute we walked in we saw people from our tribe. Families we had connected with at past Conferences, people we had previously only known online and kids we could recognize were "ours" just by seeing them and were eager to get to know! There is just such a feeling of connection and acceptance between families there it's hard to describe! 

We spent the next few days going to workshops and trying to take in all the information we could. Probably one of the best workshops was about special needs trust and financial planning. There is just soooooo much to learn and do to prepare for the future but we're taking baby steps to get there. We also met with specialists and learned things from the OT and Developmental Pediatrician that we've been able to implement at home and now working with at school as well. I am overwhelmingly thankful for these resources. Just earlier today I was chatting with the OT we saw at Conference and getting more information from her and that resource is PRICELESS. Having someone else on your team that is knowledgeable and helpful and another advocate can just feel like a huge weight off your shoulders when you're not sure where to turn or how to go about getting what you know your child needs. I may or may not have started my last email to her with 1. I love you. Professional or not? I care little.. 

On one of the evenings we were there, the city of Minneapolis even took part in Conference by lighting up the I-35 bridge purple for CdLS. Super cool!!

One of the most heartwarming parts of Conference is the dance party after the banquet on Saturday night. I wish everyone could experience it. Kids and parents and grandparents and doctors and therapists of all ages, sizes, colors, nationalities, developments, verbal, nonverbal, mobile or not, out there on the dance floor celebrating life together! What a joy to see people of all abilities out there sharing that beautiful space together. The teen boys who were volunteering at Conference and out there dancing with all the CdLS-ers?? Hand me a tissue. The whole box.

I was so surprised to meet sweet Aubrey who we had connected with through this very blog.
Her and Ella could be sisters!! 

Representing Nebraska! 

These girls. Some with CdLS. Some not. Didn't matter. 

A.J. Ella and Lauren coming all the way from California to New Jersey 

We had an amazing 5 hour car ride home (seriously!) Sunday morning with only ONE stop (can you even believe it??). Well... actually there was 2 but I'm going to choose to not count the first one that occurred before we were even out of city limits in the pouring rain for the 2 year old that someone was supposed to take potty but apparently didn't.. ahem. Anyways, the kids were so well behaved on the way home and Ella and Levi giggled and laughed the entire last hour which we were just delighted with. Until we actually got home and realized they had broken into the bag of snacks and were throwing Cheetos and Oreos allllllll over the back seat and there were crumbs literally in every crack and crevice. So that's what was so funny, huh?

We really had an amazing trip and are so thankful for all the support and encouragement and love our friends and family community shows Ella!  I have to admit I was a little hesitant about this Conference before going. I started to get a little insecure.. like, maybe we shouldn't be going to these Conferences after all. Maybe we aren't going to fit in anywhere. Maybe we've been to enough. Maybe it's selfish to go to our fourth when there are others who have never been able to attend a single one. Maybe we know everything we need to know and aren't going to learn any new information from the professionals. Maybe it's time to bow out. Step back. Take a break.

But I quickly remembered why we continue to make these Conferences a priority, why we continue to go. We go to encourage others who are just starting this journey and in turn be inspired by the ones who are ahead of us. We go to expose our children to people of all abilities and make it the norm for them to see. We go to show them love and make room in our own hearts for love and acceptance to grow. We go to grow as individuals. We go to learn about new ways to care for and provide the best life for Ella. We go to truly remember what's important and relationships and connections are at the top of the list. We go to have community with members of this club that no one ever wanted to belong to. We go because there is space at the table for anyone and everyone there and we want to be a part of it.

You know what's funny? Our kids who are younger than Ella have never asked about why she's different. We talk about CdLS openly, but they've never once asked what it means. Hudson turned 5 this summer and is a very bright and observant child. I wondered if he would ask why we were doing 'Ella's Run' this year. Why does Ella get a run and not him? Nope. I thought for sure he would ask why we went to Conference. Where we were and why we were staying at this random hotel and leaving him in childcare with these random people for the first time in his life? Nope. I thought he would notice the kids in the lobby and dining hall with obvious disabilities, limb differences, wheel chairs.. Nope. He sees no differences. And that's exactly the way we want it to be.

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