Over the weekend, we went to the Hole in the Wall Gang Camp in Ashford, CT. It is truly a special place on earth for special families. We were lucky enough to participate in the first Rare Disease Family weekend. It was tremendous fun for the whole family. I think the photos will show!
Jessica never passes up an opportunity to be a cat!
Alexis relaxing after lunch on Friday.
Dad and Jessica fishing. I had hoped to get a natural photo, but instead Dad told Jessica to smile - so I got the corny silly faces from Jessica and Dad.
Alexis and Dad makes silly faces at the folks dancing in the circle!
Last day - Jessica sad about having to leave the baby dolls at camp. (She had adopted them for the weekend)
Our 'fake Chowdah' - tribute that I painted while we were at camp.
Alexis was not interested in the fish that Dad caught. At All.
And it wouldn't be all done without some videos! Sorry for the shaky / unfocused -- I have other talents. :-)
Alexis performs with Julian, the Music Director at Camp.
Jessica reads a story to the baby dolls on stage.
Kids & Matt & Julian in Jam Session in the Sound Studio before the Stage Night.
We made kites! Proof that they actually fly!!
Matt has the videos of the zip line on his phone. Jessica, Matt and I participated - but I swear Jessica made the climbing wall look a lot easier than it was!
Tonight, Jessica invited me to her Someone Special Dance at school. It is meant for the kids to invite a grandparent or parent or family friend or someone in their life who is special. Well, I got to see first hand who is the really special one.
Most folks know how special we consider Alexis, our miracle girl (who just turned 10 - a topic for a different post). But most don't know much about Jessica - other than her open heart surgery - now 4 years in the past.
But you haven't heard much of her learning struggles or her struggles at school. But let's just say between repeating kindergarten and being diagnosed with an auditory processing disorder, she's been working tremendously hard to make up for the fact that her first words weren't until age 3. Her IEP is nearly as long as Alexis' and both are making tremendous progress this year.
Let's set the stage for the night - Jessica in her fanciest dress (from Christmas party times). Me having come literally from the construction work-site, changed into a dress - as Jessica requested. We left for the dance, as we're going in - Jessica skipping and giddy. Then does some self talk (out loud) "Jessica, Calm down, don't hurt your friends when you get inside!" I echoed that's a great idea - I'm very proud of you for remembering to prepare yourself.
We danced for a little while, took a cookie and water break to regroup. Then we went back in, Jessica noticed a little boy and mom. The mom was holding the little boy because clearly he was overwhelmed. We danced some more. Probably an hour went by. We noticed the little boy crying - shoulders shaking and all. I thought - Jessica has an incredible visual memory. I remembered seeing the little boy with his mom, but I didn't remember anything about the mom. I asked Jessica if she could tell me what the mom looked like - she did say "she's wearing a gray sweater." To get us closer to finding his mom to help the boy, I said "Jessica, can you walk around with me to find his mom." I knew she would be able to figure this out quickly. 2 seconds later, we're taking the mom to her son. He was so relieved.
Jessica is my someone special. She noticed him originally with his mom. She noticed him crying uncontrollably. She used her spectacular visual memory to help us find the mom and rescue a very anxious and concerned kid. Jessica struggles with so much that others take for granted, but she has empathy beyond her years and awesome skills to be extremely helpful. I was so proud.
We returned to dancing but Jessica really didn't want to leave my side (which also meant that I had to continue dancing-no skills at that). During the last 15 minutes, Jessica's friends ran up to her and asked if she would like to dance with them. She wanted to but was extremely concerned about leaving my side. But when she finally ran off with them, she was smiling and happy. Those little girls were truly the "someones special" to my dear Jessica. Jessica was over the moon that one of the last songs was the song she had requested earlier from the DJ -- Taylor Swift "Bad Blood". I couldn't have been happier and proud that my someone special was seen as someone special by her classmates.
Jessica is fast asleep and I'm ready to decompress from a full day at work and then 2hrs of K-5 dancing!
Tonight, I put Jessica to bed - she was beside me whimpering. I asked 'what's wrong bug?' She said, "I want a baby sister". I explained that we have Alexis and Jessica and they were awesome. Then she says, "What if me and Alexis were twins!" I said "oh that'd just be silly! You are almost twins, practically!" Then we got distracted by talking about how Alexis would always be just 1 year older than Jessica.
On any other day and time, this conversation would leave my mind quickly. But it didn't tonight because tomorrow is the 10 year anniversary that we found out that Alexis' twin, Kaitlyn, had died. Probably similar weather 10 years ago - I don't remember it being snowy - just cold and wet. I remember because from the back of the ambulance, you only get to see the traffic behind you and the distortion of their headlights as go down the road.
We have the sweetest girls because no matter what scars Mom and Dad carry around, they are always happy and content with everything. We aren't without struggles, but in the "for real" - we have it good. The struggles we have might bring us down, might trip us up, and may cause us to dream up new plans. But from it all, I am grateful. Sweet kids, happy house, busy life and new chapters. Alexis is amazes us everyday - she is getting so strong and doing so well. Here's a basketball video from last week:
Evidently she did like 15 in a row until the camera came out. Silly goose! Matt filmed another one of her tonight - I'll try to get that one posted soon.
And then Jessica's sweet piano concert. You might be able to tell when she had to look back at her music to find the next note (she had it memorized until that point). Love her. She is so proud of herself. Yes, we can work on the performance - but we won't change the performance (if you know what I mean).
We were discharged yesterday around 11:30am. We got home and Alexis settled back into her normal recovery mode. She played with Piano, she played with toys. She contented herself to roll on the floor of the living room when those two things exhausted her. She visited with her afternoon PCA.
She took a bath, and then fast asleep at 6pm. At the hospital on Wednesday, she had slept hard when they gave her morphine (one of the things she is allergic too - a subject for another day). And then she woke up hungry and was awake from 10pm-midnight. Then she woke up Thursday at 6:30am. That's really not Alexis' typical sleep cycle. So I wasn't surprised when she fell fast asleep at 6pm, in the comfort of her own bed.
Especially because I was right behind her! I fell asleep at 8pm. Of course, I'm now awake because going to bed at 8pm for me is a rare treat! But to give the body 6 hours of continuous sleep after being in the ICU the night before - I already feel like a new woman. And the best part, once I go back to sleep in one hour (or so)--- my body will think that's a nap. My body loves naps.
Wanted to give you all an update of where we are. Alexis is out of school today to give her another day of rolling around and playing around. Yesterday she still had moments where her nose would drain blood - I didn't figure her school, her teachers or her classmates would consider that a 'perk'. They have excellent nursing staff, but I'm sure it's not a great day for Alexis just to sit in the medical area. So she will have another day at home to relax - then the weekend - then back to school on Monday.