Our Week in Orlando--CdLS Conference 2016

It's becoming obvious that I don't handle change well. 

Me 2 weeks ago: "I don't want to go to Florida. Why did I even plan this trip? It's too expensive. And stressful. And hot. Is seeing our CdLS family even worth it? Specialists Schmecialists.. There have been so many awful things happening in Orlando lately. I just want to stay home in the Midwest with my corn fields where it's safe and quiet. There's no alligators here. I like my home. And my animals. I like my life. Why would I even want to leave? Maybe we shouldn't go.."

And then me on Sunday: "I NEVER want to leave Florida. I'm going to become a millionaire and buy a house on the ocean. I love the ocean. All our CdLS family can come live with us. Let's stay on vacation for all the days. There are no bills to pay! No chores to do! No house projects waiting for us! We'll lay around by the pool all day and look at the palm trees. I'll deal with the alligators. Where is home? What does my house even look like? Do I have a house? Do I even know how to cook? I have no idea.. Who cares? Tra la la la.."

Is it just me or does everyone feel this way after going away for a few days?

I faintly remember going through the exact same thing 2 years ago during the California Conference..

Anyways, we spent last week in Orlando for the CdLS Conference and had such an amazing trip!  The kids did SO well on the plane.

I think Ella was sleeping on JJ's lap during this picture.

We left a few days early and were able to spend some time at the ocean on the Gulf. When we asked the kids what they wanted to do in Florida, spending time on the beach hands down ranked #1 far far above than anything small and insignificant like, say.. Disney World. (And FAR less expensive too! Win-Win)

Pure joy.

It did not disappoint.

You can see shell-obsessed Charlie in the background.. That kid wouldn't have left a single shell in Florida if he had his way.
Our bags were considerably heavier on the flight home..

Sand castle fun

The sunsets weren't too shabby either..

We were at Clearwater Beach so we also went to the Clearwater Marine Center where the movie Dolphin Tale was made and created after. The kids were pretty excited to see Hope and Winter, the dolphin who had lost her tail. And I love the inspiration and correlation between so many kiddos with CdLS who have limb deformities as well.

We were the very first people in the center and the sting rays were so playful right away in the morning! It was amazing to see them so interactive--splashing the sides of the glass and wanting attention.

 

Since our hotel for the Conference was on SeaWorld property we had the chance to do some fun SeaWorld stuff too. Ella LOVED the dolphin show. 

She was so fun to watch--her face was total amazement the entire show.

Giraffes had better step up their game or dolphins just might take over Ella's favorite animal spot!!

 And now on to the BEST part of the week. 

Yes, even after all the fun 'extra' stuff we got to do, the absolute best part was when the CdLS Conference started. It was nothing short of amazing! 

Ella & Addison

 It was so exciting to start seeing CdLS families showing up at the hotel and popping around every corner. 

Ella's BF Payson

We were able to reconnect with so many friends from past Conferences.

Sweet Eva

And make so many new ones as well!

Meeting Micah

This sweet girl has a brother with CdLS and loved on Ella all weekend.
She whispered in my ear at the Banquet on the last night

"I wish I could be Ella's sister.."

Levi made a few friends as well!

Oh, and some pretty cool people got some pretty cool awards too.. Just saying.. ;) 

The older boys loved reconnecting with friends they had made in California. I love watching them build relationships as well and I know I've said it before but I think it's so so important for them to have other siblings of CdLS-ers that they can talk to as they grow up and face different challenges. 

I am so excited to watch them grow and have opportunities at upcoming Conferences to volunteer and interact with other CdLS families even more!

  

We had some really great consults with doctors as well. The OT remembered seeing Ella in California and couldn't believe how well she was doing. She had her run down the hallway and kept exclaiming over and over "Oh my gosh! Look at her trunk rotation! I can't believe it! Did you see her trunk rotation??" Seriously. Over and over and over. Crazy OT's.. Apparently it is pretty rare for someone with CdLS to have the fluid movement Ella does when she walks or runs. And also not to have any restriction in her arms or wrists. She was able to give us some good tips for strengthening her hand muscles so she is better able to grip her pencil and push harder on her paper to write in school. We also met with a Special Education Coordinator who reviewed Ella's IEP and reaffirmed that we are working with a pretty great school and are getting her the services she needs and also gave us a lot of helpful information I will be reviewing over the next few weeks! It was crazy to look back at our Speech Session from 2 years ago and see that our therapist told us that she believed Ella would not only someday be able to say her name, but read it and write it as well. I remember being so excited to hear that.. I had no idea that day would already be here! I can't wait to see what she does in the next 2 years! There are quite a few different research opportunities at Conference (and some really exciting new breakthroughs we were able to learn about!). One of the booths we stopped at we were already signed up with the registry through our local hospital.. and then we realized that the guy was from our local hospital. Small world!

My heart was so full over the weekend seeing all the CdLS kiddos and their families. It's just an amazing experience being in a place where kids who are sometimes looked at or treated differently by the world are not only accepted, but treasured and cherished and loved beyond belief. There is no 'your kids' or 'my kids' but instead they're all our kids. We celebrate together when someone reaches a milestone, we laugh together, we cry together when we lose a baby too soon, we encourage each other when we're down and hold each other up when we think we just can't do it any longer. Even though CdLS means something different to every family, no matter where you're at in your journey, it's inspiring to know someone has been there before you and can help guide you through it. We are so very blessed to have the welcoming and supportive community at home that we do, but this Conference is truly the one time where families can get together and feel normal, where everyone instinctively 'gets it' and where your everyday conversations about therapies and specialists and medical devices and communication apps are everyone else's normal conversations as well. The doctors and specialists are wonderful and so so important to meet with, but sometimes it's the families who have been through it who can provide the most help.

I've sat down so many times to write this post this week, but it's been hard. We have been struggling a lot adjusting back to real life. Ella has been having some very difficult behaviors (one in particular resulting in a doctor's visit for Hudson..) :( Apparently the Behavior Specialist should have been part of our consults last week.. She has been acting out and regressing in areas and I'm hoping it's in part attributed to sleep deprivation and disruption in schedule. I've felt many times this week I've reached my breaking point. But then I remember. . .

I remember the brave mamas who shared their stories and their everyday struggles with me during our mom's small group session. I remember how every behavior we talked about there was someone who could say "My child used to do that too and here's what helped." I remember the inspiring couple we met who raised their own family, and has now adopted and is fostering 8 other children right now, 2 of who have CdLS and who drove 1500 miles to be there (with those 8 kids..). I remember the selfless couple who already has one child with CdLS and couldn't make it to this Conference because they were saving their money to adopt a little boy with CdLS from Ukraine, who sadly just passed away this week before they even had the chance to hold him. I remember the strong mama who unexpectedly lost her sweet girl only a month ago who was able to come to Florida and love on her CdLS brothers and sisters. I remember the man who passed away this week who was the oldest living person with CdLS in the US (unfortunately only in his 50's) and the adventures his mom would post about. I remember the panel of young adults with CdLS we heard at Conference and the inspiring ways they are living independent lives. I remember the stories and the pain. I remember the joy and the love. I remember that I have a community who has been through it, is going through it and is there for me when I need it.

I feel so thankful that I was able to be filled up with so much love and inspiration last week. It makes all the difference in the world. The only bad part about Conference is that it lasts only 4 days, every 2 years. I loved meeting and connecting with every single person and I only wish there would have been more time to connect with even more. For me this was the best Conference yet. I am finally at a point where I'm not worried about what Ella is going to be like. I'm not comparing her to others to see what she's doing and what others are doing. I'm not racing around to find every answer and stressing out over every test. I've settled into a groove-- it's about who Ella is, not who I want her to be. It's about treasuring the time we have, not worrying that it's not enough. It's about welcoming others into our community and supporting them in this journey. It's about loving on those babies and counting down the next 730 or so days until the next Conference.. :)

Thank you thank you for everyone who helped make this trip possible!

Goodbye Florida.. We miss everyone so much already.

We can't wait for Minneapolis 2018!!!!!

*Another HUGE shout out to Grandma and Papa for coming along with us again. Our trip would not have been nearly as fun or relaxing and I'm not convinced all 7 of us would have even made it back together if not for you being there! 

Happy Anniversary

Can you believe we've been married 11 years?

11 years since I stared into these green eyes and pledged my forever "I love you's". 

You still leave me speechless.

Sometimes I watch you deep in thought and wonder..

I wish there was someway I could tell how you really feel about our lives together..

I guess I'll just have to assume I still make you feel like flying.

or falling..

AmIright?

Seriously though.. 

I really love our lives together. 

 As these boys get older I'm so thankful they have a dad like you to look up to.

A dad who takes them hunting.

And fishing.

And fishing.

And fishing.

And fishing..

Sliding.

 And water sliding.

Swimming,

batting,

and boating.

I'm so glad I get to wake up to a quiet house and find notes like this. 

Our daughter is so lucky to have you. (Even if she looks a little unsure here..)

We all are. 

(Lucky to have you. Not unsure. Mostly..)

You coach us.

You teach us the value of hard work.

You love life with us.

Most importantly you love us well.

And we love you back.

More than you know.

 Even if you do tip our swing set over flat on its face 

(And my garden shed too, but who's keeping track, really?)

Oops.

Oh- and thank you for remembering to make me sweet homemade Valentine's so I can cross out your name and regift them back to you since I'm not the greatest gift giver..)

Here's to a lifetime of memories that's only just begun!

 Happy Anniversary!!

Potties and Big Girl Beds and Sleeping all night.. OH MY!

In addition to all the big changes and successes at school, Ella has been doing some pretty awesome things here at home too. A few months ago (it actually might have been before Christmas time.. I'm not really sure) Hudson started climbing out of his crib. It wasn't a big deal, but when Daddy got home and I told him what happened he promptly said to him "You need a big boy bed! Let's go get it out of the attic." And proceeded to spend the next hour disassembling his crib, moving it to our room for Levi, and getting out the toddler bed while I simply stared with my mouth gaping open. I was not prepared for that. Well, when Ella saw all the excitement over Hudson's new bed, she decided she wanted one too. Since we had an extra at Grandma & Papa's house, Daddy and Ella drove and got her bed (which made it all the more exciting for her) and put hers up too. (Me, standing with mouth still gaping open) And then of course that same Daddy left for the rest of the evening, leaving me to put 2 toddlers (and 3 other children) to sleep in brand new beds for the very first time. Thanks.

We had tried Ella in a big girl bed a few years ago, but she just wasn't ready. She wouldn't stay in it, wouldn't nap as long and only if I laid next to her until she fell asleep. This time she was ready though. She did pop out a few times, but I put her back in and she eventually stayed put. Now she pretty much always stays in her bed after we lay her down and goes right to sleep (maybe after a few rounds of singing "Twinkle Twinkle" so sweetly to herself).

That being said, Ella has pretty much always come to our bed sometime in the middle of the night. We've tried putting her back to her bed, but she immediately pops out and comes back to ours. This has gone on for hours on end before we finally gave up. We've tried laying by her in her room to get her back to sleep, but usually wakes up again anyways. We've found out she can outwit, outlast, and outplay us any day of the week. It's generally just easier to let her come sleep in our bed, especially if its 3-4am. BUT the past 2-3 weeks she's decided to sleep in her own bed every single night, ALL night long. (I hope I'm not cursing it by writing about it..) Whether it was because we decided to sleep train Levi that week and let him cry for a few minutes a couple nights and she just decided she didn't want to come in and have anything to do with that, or what.. I don't know. And I'm still fully aware that it could change at a moment's notice, but for now all five children have actually slept through the entire night multiple times during the last few weeks for the first time in... ever.

And perhaps one of the very most exciting things to happen is ELLA IS POTTY TRAINED!! Yes, I just said that. For the most part at least.. During the school year Ella would follow the same potty schedule as the rest of her class. She would go in the potty at the same time with her aide. Sometimes they would just go in and just look at the potty and turn back around, sometimes she would sit for a few seconds, and then wash their hands and go back out. We really let her set the pace. But for the last 2-3 weeks of school there started to be a few times she actually went potty, then it built up to a few times a day! About the 2nd week into summer break I decided to see what would happen if I just put her in big girl pants, and she did AMAZING! She didn't have an accident the entire first day. What did the trick you ask? M&M's. That's it. Every time she goes potty she gets 2 M&M's and gets to give 2 to her brothers and they all cheer and give her high fives and thumbs up and tell her good job. We're already almost through a 3 lb bag. I'm hoping to phase it out over the next few weeks, but I'm not sure she'll let me or not..

It's been about 3 weeks now that's Ella's been in big girl pants I think and she does have accidents occasionally, but for the most part she is doing so so good. Needless to say I'm a little nervous about flying across the country with her, but she has been wearing big girl pants everywhere for a few weeks now.. to the store, church, camping, and the girl even peed off the side of the boat for Heaven's sake, so I'm hoping we're good! We are so so proud of her!

Preschool Year

Last year at this time I was worried sick about Ella starting preschool. Who would her aide be? Would she be nice? Be able to understand Ella's speech and sign language? How would Ella handle being away from me so long? Would she be exhausted? Would she nap? Would she fit in? Have friends? Learn anything? I was excited for her to start, but terrified of letting her go.

I had no idea how amazing the year would be for all of us. Ella started off attending school just 2 mornings a week and by the end of the year she had built her way up to 4 full days of school a week. She can recognize and say most all her letters (and points them out EVERYWHERE we go). She knows most of her colors, some numbers, and can write her name. (!!!) Her speech has accelerated so much, and she has become SO social. Her aide was amazing and I feel so confident that she is spending her days surrounded by people who truly care for her and want the best for her.

She had such a wonderful preschool experience and we are so excited that next year she will be moving on to... Kindergarten!! There are a lot of factors that went into our decision to move her on instead of spending another year in preschool and a lot of pros and cons both ways, so we're praying this is the best decision for her.

Ella's teacher sent me this video shortly after school got out and I wanted to share it with you all. Sorry for the terrible quality--I couldn't get it to upload directly from the disc, so I had to record it with my video camera from it playing on the tv. But you get the idea! She has grown so much and we are so proud of her.

Jibber Jabber

Sometimes I forget how far Ella has come in her speech. The progress seems slow and grueling and the day-to-day differences are hardly noticeable. She is nowhere near a typical 5 year old's speech and I long for the day that she comes home from school and tells me all about her day, who she played with at recess, what she ate for lunch, what made her happy, what made her sad.. instead of me having to read it from a communication notebook with her teacher. HOWEVER, the progress definitely is there. There are days her little jibber jabber mouth just won't shut off and she has no quiet voice, especially in church. :)

Last fall I posted a video to a friend's Facebook page of Ella wishing her CdLS BFF Payson 'Happy Birthday'. I was surprised to hear from friends who watched it and were so encouraged by listening to her improved speech that I promised I would soon share more videos of her talking..... That was 6 months ago. Oops. In my defense I honestly have been trying to take videos of her but it's been so hard for a variety of reasons. 1) Her talking is so normal now.. I don't really think much of it. Just like the dirty dishes in my sink, it's just always there and not something I even think about recording.. 2) Whenever I start to record her she almost always instantly stops talking and wants to watch herself on the video and 3) I swear some little boy is ALWAYS running around naked in the background!

I did manage to get a few videos though and put them together here. Enjoy!

P.S. Ella had surgery this morning for her 2nd set of tubes and an adenoidectomy. Thank you for all the thoughts and prayers! Everything went great-the doctor discovered her 1st set of tubes from 2 1/2 years ago were actually still in place (he couldn't see them previously), there was a lot of granulation tissue around them, and fluid build up behind. We're hoping this helps immensely with fluid drainage and improved hearing in the future!!

Gymnastics 2016!

Ella had her Gymnastics Recital last night and of course I'm a little biased but she did SO GOOD!

Ella has grown so much over the past year and I am so proud of her! Last year I went in to every lesson with her and stood by her side, helping her with all the moves. I knew the routine she was going to do because I was right there next to her every time they practiced. This year she was such a big girl and went in to all her gymnastics practices all by herself so I had no idea what they were going to do. I was BLOWN AWAY during the very first part of the routine when they stand in line and she actually popped up and down when she was supposed to! It's one thing to stand behind your peers and wait your turn doing what everyone else is doing, but it is totally another thing to remember part of a routine and do your own thing right when you're supposed to do it!!

This girl just continues to amaze me!

Normal yet Not

I had all but written this post in my head about feeling 'normal' lately. I had planned to apologize for being such a terrible blogger (again-I know) but the truth was I just hadn't been feeling like there was much to write about. The first few years of Ella's diagnosis of CdLS were so hard. Every day brought new questions and fears. I had so many emotions, so many questions, so many tears, so many what-if's, so many things to process. I had a lot to say and sort out. And say it I did. This blog and everyone who reads it has been an amazing outlet for me. It has helped me get through some really dark and difficult times and celebrate some incredibly exciting times. But over the past few years, something has begun to shift. Those fears about us never being a 'normal' family have all but diminished. Well.. kindof.

I haven't had much to say lately because things just feel normal. There isn't much to write home about.. or in my case to wring from home about. Ella is talking so much more, but it has been such a gradual process, it just feels normal. She is doing amazing in school, but has been since the beginning of the year so now I just expect it. She still loves gymnastics, but it's her 2nd year so I'm not so shocked by it. She is bright, funny, stubborn, silly, and lights up our life. Just like our other four kids. I don't look at her and see anything or anyone different than anybody else around here. Our days revolve around school and homework and family meals and playing and disciplining and teachable moments and bedtime routines and movie nights and sleepless nights and memories in the making and all that stuff that is just daily. For the first time since finding out about CdLS, I was finally able to say.. Life is really normal.

And then I woke up this morning and saw that Ella's sweet CdLS sister Annabelle passed away last night after a routine sedated procedure. That's the 2nd CdLS angel in our family to gain their wings this week. Winter is always so hard on our babies and this year has been no exception. My heart breaks on a weekly basis for families that I've never met in person but are connected to by heart. I've had a particularly special place in my heart for Annabelle ever since her mom reached out to me after reading the blog shortly after her diagnosis. I've loved watching her grow from a chubby little baby into beautiful little 2 year old girl whose smile was absolutely radiating.

Today has shook me as I am reminded again that although our life does feel so normal, it's still not. It's like we're stuck in the middle--hanging in limbo of living our daily routines yet still straddling the proverbial fence when it comes to our children's fragility. We have one foot in the 'typical' waters of life- going to work, parent/teacher conferences, kids basketball games.. and one foot in the murkier waters of the constant stream of friends with babies in ICU, life-threatening surgeries, and the constant unknown. I know no life is guaranteed, even a typical one. I do positively know this. However with CdLS or many other genetic syndromes, the chances are just so much higher. That's our reality. And we have to live with it and witness it every day. Ella's life has exposed me to so many rich things-so many wonderful people and experiences. But it's also exposed me to suffering and loss so much more than most typical parents would see.

So here I am. Feeling normal, yet not. Feeling thankful, yet heartbroken. Wishing CdLS didn't exist so these families wouldn't have to say goodbye to their babies so soon, yet feeling blessed by the amazing things it has brought into our lives. I feel stuck in the middle of this crazy beautiful life and a little unsure of which direction to turn.

My friend Christie said it perfectly. Our "normal" is really so far from normal. It's not normal to see a friend lose a child nearly every week & wonder if/when it's going to be your turn. While most days I love our "normal" because it's unique & it's ours & it's something we wondered if we would ever have, sometimes I wish we could have a different "normal".

Please keep all these families in your prayers.