Moms of Sick Kids

I rarely consider myself a Mom of a sick kid. Selene is happy and we lead a relatively normal life. But this video popped up in my Make a Wish facebook group today. For the first time in a long time, I cried myself to sleep last night over fear for Selene's health. So this movie hit crazy home.  Every single Mom that I know is a warrior. They do everything in their power to take care of their children. They pull strength when they are sure there can't possible be anything left in them.  But there's just something about watching your child suffer, about being strong for them when you don't know if you can even fool yourself.  Anyway, this gets you right in the feels. I'm thinking of all of those Mom warriors today.

Moms of Sick Kids

Ok, an update on Selene. Ironically, I meant to write a post a few weeks ago that would go something like "AHHH! NO MORE BAD MEDICINE!" I just kept forgetting to blog, or rather every time I had a moment I'd drink tea and binge watch The Killing instead.  Anywho. We decided to stop her Imatinib after fully weaning the steroids. It was glorious. For a week she danced around the house singing "I can't believe I don't have to take my bad medicine!"  I kept thinking I forgot to give it to her then would realize we had stopped it and a little feeling of relief washing over me.

We left that appointment with the caveat that we'd all be vigilant. Well, within the last week we noticed her slowing down. We noticed her body stiffening when we picked her up. Those slender little arms could no longer easily bend out of her car seat straps. I mentioned it to Dan and my Mom, both agreed they saw it all too. So we messaged her docs just so they'd be aware for our appointment next week. But they wanted to see her immediately. Our giggly Selene who always laughs and squeals for Ellen barely looked up. Another huge indicator that something is wrong. So after checking her out and some labs, we've decided to put her back on the medicine. My biggest fear, and motivator behind the tears (besides the general "I don't want my baby to suffer!"), is that this will become her normal, for the rest of her life. But Dr. Olson still believes it can "burn itself out." She's so frail and has been through so much, we are just going to hope that she needs more time to get strong and for her body to function completely like it should.

For now, I should worry about more serious things, like how she'll get affordable health care when she turns 18 and her magical PA medicaid program is up.

She was so charming the waitress made her a chai latte.

All decked out for a wedding!

Twirling

Captivated

This free spirit deserves everything <3

Enjoying Great Pappy and Gram's farm!

So much trouble in 13 years

She was super proud of her homework...then she told me she didn't have to turn it in.

Champ at the dentist! I can't say the same for Kalina.

Morning at CHOP

I was the captive audience of her Pony Show.

Heading "Home."

Every time you pull into Give Kids the World, the security guard yells "Welcome Home!" as you go through the gate. Ainsley asked why they called it home.  It really was a place filled with love. We kept encountering people all over Orlando who volunteer there. Or volunteers who had amazing jobs and just volunteer because they love it. Gah, it was so fabulous. But alas, real home was waiting.

Friday Night was their Pirates and Princess' pool party. It was chilly but still a ton of fun! There was a group of students on alternative spring break and they were so great at working with the kids, helping them do crafts, bubbles and dancing.

Merry was loving the big long Kalina hugs

This kid was happy!

Dan took a turn

She concentrated for almost 45 minutes on making these big bubbles with rope.

Oh, they also have this room set up with a video camera. You could record anything you wanted to remember your trip. Between the crazy kids and my exhaustion, I'm not sure the video is very good. I just realized that we forgot to watch it!

After that it was bedtime and to finish packing everything up!

Our last morning involved one last carousel ride and a horseback ride for for the big girls (which gave us the cowboy hats which led to one of my favorite photos of the trip.)

Our flight was easy and our ride home stylish. Our neighbors made a comment about the limo a few days later. Since we just moved in June we really hadn't shared any information about Selene. But they were super excited to see the results of a Make a Wish trip and said they'd totally donate in the future :-)

Don't throw away my Shamu!

We promised ice cream for breakfast one day!

My souvenir 

Why I ever flew with a baby in my lap is beyond me. This was smooth flying.

Mom! That's our name!

Final Days

When we hopped into that limo the first morning we didn't expect to ever get to the end of the trip. So it was a sad day when we did! We had planned to go to Animal Kingdom and then Epcot. I've been to Disney World three times now post AK and never made it! I still remember watching a behind the scenes on building the Tree of Life. But alas, my visit will have to wait. We were exhausted after a long week and I felt like there was so much in Epcot. And boy am I glad we made that decision, this was by far our best day. The heat finally broke and we had a breezy, sunny 75 degree day.

By 9:15 we had seen Daisy, Baymax, Joy, Sadness, and were in line at Starbucks. After doing everything we wanted to in Future World (but not nearly touching on half of it), we went to Norway for all things Frozen and for lunch at Akershus. It was the flower and garden festival so there was so much to see!

They could have spent hours at every water's edge. I'm going to just plan vacations around local ponds from now on :-)

I had wanted to veto our princess lunch because there was so much amazing food to try at the Festival. But Dan insisted we go and I'm so glad we did. This was Selene's first encounter with Aurora and after she graced our table Dan had tears in his eyes. I looked at him questioningly and he said Selene looked up at him and exclaimed "That was my wish!" I think it made every early morning and aching footstep worth it.

After lunch we visited Elsa and Anna. They closed down access to the room and Anna joined us on Elsa's side. The sisters were incredible. Kalina is strangely attached to an Anna doll we have and she climbed right into Anna's lap and I was fairly certain she was never going to get out. She eventually did....for an Elsa lap. It was pretty magical. I thought Anna was gonna cry at the end, probably because she saw me crying...and then she hugged me. And it was lovely.

We met a few more characters a long the way, met up with our dear friend Chris, who popped in to join us! Then when we were on the way to see the coveted Aurora, Selene fell asleep! We decided to let Ainsley meet her and she was so incredibly sweet. She asked us to come back if Selene woke up. Which she did, about 200 feet from the exit. So back we went to see Aurora.  We had to wait a few minutes for her to return from break, so we found a way to pass the time. Hint, it was Grey Goose and Grand Marnier dreamsicles.

We took the ferry back to France! 

Yumm....

So a few minutes before she's supposed to appear Dan decides to check in with the attendant. Or as I uncouthly like to refer to them, the handler.  She asked if Selene would like to accompany Aurora on the walk to her location, that was an obvious yes. They opened the gate and Aurora appears exclaiming "Selene!" She hadn't met her awake and she hadn't been reminded of her name. She gave her a big hug and slipped her hands through Ainsley and Selene's and they walked her to her meet.  The girls were head over heels. They spent another 5-10 minutes together, chatting away. It was definitively the most epic part of the trip. In the end, Aurora got up to hug me good bye. I have no idea what it is, maybe all the tears streaming down my face? Maybe they know I'm a Disney Princess at heart? I don't know. So basically, Epcot was hands down our most favorite day and the perfect way to end a magnificent trip.

"I'm four." 

twirling