Made of Gray

A Letter to Caleigh on Her 10th Birthday

Raising the Rare ChildHolly D. GrayComment

Dear Sweet Caleigh, 

Today you turn Ten. You're a pre-teen now and you are so completely excited to have that title. I've spent the last month trying to convince you to stay nine forever. As stubborn as ever, you jumped ahead another year.

How is it possible that a decade has passed? I'm still trying to wrap my brain around it. You blew past early predications and continue to stretch the rules. You break barriers and will forever be our strong girl. You push when Daddy and I are tired and ready to quit. You push and survive when your body is tired and complicated. You keep everyone on their toes at all times. You made me a mom ten years ago and you continue to make me a better person everyday. 

Every time I look at your sweet face, I see my tiny fragile NICU baby. Your flowing curls, soft pale skin, and beautiful brown eyes amaze me. I see all the knowledge and wonder in those eyes. Your'e the smartest kid I know. As your mom, I feel every feeling you have. Each movement, expression and sound speaks to me more than any verbal words could reach. I feel that we are connected on a level very few understand. I know when your sick, sad, overwhelmed, exhausted, happy and excited without a single word. You are growing up so unbelievably fast, but we will always have this unwritten connection. 

Mommy and Daddy are forever proud of you. Keep giggling, sassing off and moving mountains. We love you, pumpkin.

Happy Birthday! 

I LOVE you, 

Mom

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Spring 2017

Raising the Rare ChildHolly D. GrayComment

How can it have been six months since I last posted? Maybe this is the season of Caleigh's blog? Maybe this is the growth and privacy we all crave in an over saturated internet life. 

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The truth is that graduate school is more responsibility, time commitment and emotion than I had envisioned. After completing the first year of my MFA program, I left for 16 days in Italy. I wrote a proposal and it was accepted giving me the grant money to travel with. I've never been away from Caleigh that long. Cue the Mom guilt, but it turned out to be a magical trip with art history, gluten free food, architecture and cultural growth. I took more than 2000 photographs and I can't wait to edit them. With amazing supports here at home, Caleigh did great while I was gone. We are so lucky to have a team of people in place that care about her wellness and happiness the way that they do. 

Now for the updates...

This April we traveled back up to Boston. The CAIR team loved how well Caleigh is growing, absorbing nutrition and thriving. The short bowel syndrome surgery of last summer continues to be a success. Our memories are fading and life is continuing to move on from that time. Caleigh still takes a one week round of antibiotics for bacterial overgrowth every month. They've cut her calories by 5% and have suggested trying to wean her off of the Nexium. We haven't started the wean, but summer looks like a nice place to start. 

Endocrinology is still watching Caleigh's growth, bone health and puberty with no changes. 

We saw orthopedics in Boston for the first time this April. We've known that Caleigh will need hip surgery for several years now, but we wanted a second opinion on the procedure. What we discussed varied from the options here in Texas. We have an appointment this June with our local orthopedic doctor to go over the differences and help us make a decision on the location of the surgery. Boston would look like a month stay and home, well, it would be at home. It was suggested that the surgery be complete within the next 6-9 months. 

That's Boston. We went to a Red Sox/Cubs game while we were in town. The weather was perfect while we were there and Caleigh loves traveling to Bean Town. She loves talking about Boston and it truly is an adventure to see her doctors. She doesn't dread it and neither do we. It's a warm comforting feeling. 

Fun highlights that have happened since December:

1) Caleigh received her second powerchair. This is the M5 Corpus. It's fancy, smooth and fast. It had been 7 years since Caleigh got her first chair. We had so many issues with joystick access and over the years tried many different solutions without much success. The new chair has its own challenges so far, but Caleigh loves to move on her own no matter what that may look like. We even have a large hole in our wall courtesy the new chair and its 9 year old driver. 

2) Caleigh played Miracle League baseball again this Spring. I have a feeling that this will be a constant in our lives for a long time. She loves everything about it except the sun in her eyes. 

3) This winter was illness free! We had such a mild winter here in North Texas and Caleigh stayed well the entire time. 

4) Caleigh continues to go to horse riding once a week and Dad has really picked up the transportation and volunteering portion of that activity this year. Go Dad!

5) We wait, discuss and hold our breathe on legislation, current bills and our crazy healthcare system. Big changes started back in November with Texas contracting out children's Medicaid. It's been nerve racking to think about. Trump's proposed Healthcare bill that passed the House would be devastating to Caleigh's medical care, but I try not to think about it everyday. We will take it as it comes. We've experienced cuts to Caleigh's MDCP budget, and therapies so far. I'm hopeful that more doesn't come our way. 

Things have moved fast and typical with no hiccups during the first part of the year. We're sticking around the house this summer working on projects, swimming and relaxing.

I'll say it again on here, but Instagram is my method of social media. A quick photo of our girl or anything art related seems to be what I can put out there right now. Two years and counting until my degree is complete. 


ONE DAY

An ongoing series of waste collections from medically fragile individuals over a 24 hour period. 

Last Fall I started the One Day Project. I'm asking those of you with medically fragile children or family members to collect the waste from a 24 hour period and send it to me. With this shipment I then curate a photograph and installation. I will send you a print of your One Day and postcards that can be mailed to anyone you chose including your representatives. My goal with this ongoing project is to have hundreds if not thousands of these portraits. Please visit my portfolio for more information on collection and shipping details. 

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A Christmas Vacation to Disney World

Traveling w/ DisabilitesHolly D. GrayComment

Back in March, when we were thinking about taking Caleigh to Disney World, we looked no further than Caleigh's Nanny Lisa. Her gig has been as a Disney Travel Agent for several years and she truly knows and loves all things Disney. We set our sights on December and she took it from there. I seriously didn't look at anything until we pulled out of our driveway two weeks ago. The frazzled planner in me loved that! 

When we started planning for Disney, Caleigh's surgery wasn't even a thought yet. We were still coasting along and the family flu event in April hadn't happened. I had finished applying to grad schools and the thought of having a fall semester didn't cross my mind. Little did we know how packed 2016 would get. 

Caleigh's love for Disney comes down to three things... Phineas and Ferb, Tinkerbell and the new live version of Cinderella. 

For this vacation we booked five nights at The Art of Animation Resort at Disney. We actually ended up getting to Orlando early and Lisa helped us get an extra night at our resort instead of staying outside of Disney. 

The first day we went to Hollywood Studios...

Caleigh was disappointed that the castle and all things Disney Princess weren't actually at Hollywood Studios. Unfortunately, there was a private event happening at Magic Kingdom that night and access to the park would be limited. Caleigh was a bear all day. She was interested while we were on the Toy Story ride and at the Sing Along with Frozen, but in between was rough. The Toy Story ride was completely accessible and Caleigh was able to stay in her wheelchair. For the sing along with Frozen we were put on the first row dead center. The snow, songs and sweet smelling fog were in our face. My advice would be to hit up Magic Kingdom the first day if at all possible. We didn't know what Caleigh's expectations were. I was chalking it up to another gem of the nonverbal barrier, but I was talking to another mom the next day and her daughter had the same let down as Caleigh. We weren't alone. 

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The second day we went to Magic Kingdom... 

For each day we decided to drive our car to the different park areas instead of riding the bus. I wont get into my issues with needing to leave the scene and not wait on anyone else (control) but that's why we drove. For Magic Kingdom, you still have to park and be shuttled either by monorail or ferry to the entrance. We chose the monorail. After an hour of being stuck on the track just off the un-boarding area, listening to people lose their minds, bang on windows and freak out; we were manually removed from the train by having the door pried open and then climbing over the seats. So much fun with a wheelchair. 

Main Street was packed with everyone taking photos in front of the castle. We were able to change and take Caleigh to the restroom in the baby care area, and later in the first aide area for more privacy. We headed to Starbucks and used our snack credits on coffee at least twice a day for the rest of our magical visit. Lisa set us up with some wonderful fast passes. These are scheduled times to show up for a ride so you don't have to wait in the stand by line. Tales with Belle was the first experience. Caleigh seemed to enjoy it, but didn't really like the spot light. We ate lunch and headed to Main Street to find a spot to see the parade.

The parade on Main Street... crowded was an understatement. It was nuts, but we got a front row seat to the 3pm parade. By the time it showed up Caleigh was yelling, red and hot. The sun was beating down. Everyone was so hot, children were crying and it was so crammed there wasn't anywhere to go. 

As soon as the parade passed we headed to first aide where we stripped Caleigh down, gave her iced pedialyte and tried to get her cooler. We stayed for a little over an hour. It could have been worse. I'm glad the first aide area was there and so close to where we were sitting. Tip: Don't sit in the sun waiting for the parade. 

Our second fast pass was The Seven Dwarfs Mine train. The mine train was the highlight of Caleigh's Disney visit. If she could stay on the ride and go over and over she would have gladly traded everything else. She was pumped. Fast, bumpy, dark and scary are her thing. I'm pretty sure I haven't been on a roller coaster since Caleigh was born. Laugh all you want at my crazy face. It was hilarious! Caleigh loved it. 

We had dinner reservations and then went to the Under the Sea Ride. By this time it was dark, the castle was lit up and we were trying to decide if we were going to stay for the fireworks. We used Caleigh's guest pass to put in for another ride on the Mine Train. While we were waiting for our time she rode the tea cups, dumbo, goofy's barnstormer and it's a small world. Rides are her thing. We finished the night with the Mine Train and then hurried out of the park and on the ferry (not the monorail). Caleigh was asleep and Eric and I watched the fireworks as the ferry pulled away. It was a perfect way to end the night without the crowds. 

The third day we went to Epcot...

After a fun filled day at Magic Kingdom, the adult filled experience of Epcot wasn't on Caleigh's to-do list. I see Epcot as a great place to shop, eat and check out the Epcot ball. What, no mine train today? Caleigh wasn't impressed. She rode the Finding Nemo ride, and then we ended up skipping the spaceship earth ride. We walked around for a few hours waiting for the Frozen experience ride. When we went to check in with our fast pass we were told it had been down the entire afternoon. Bummed, we headed to our dinner reservation and luckily they were able to get us in a little bit early. We ate at Coral Reef while divers swam in a giant aquarium. We left Epcot just after dark and got to bed fairly early. 

On the fourth day we went to Animal Kingdom...

I woke up on this day with my best energetic go getter attitude. The disappointment of Epcot wasn't going to follow us to Animal Kingdom dang it! Our first fast pass was at 9am riding the safari. We hurried, grabbed our Starbucks iced coffee and headed in. The safari was nice but totally scripted down to the "Oh, look at the elephant! It's perfectly positioned for you to take a photo." As it eats from the perfectly positioned tiny bit of hay. We're spoiled having the Fort Worth Zoo and Fossil Rim so close to our house, but I imagine those without access to wildlife would be super impressed. Caleigh enjoyed the bumpy truck ride and that's what counts. 

Our next pass sent us to the Lion King show. It was a fun, choreographed dance, singing and had some major theatrical special effects. Caleigh enjoyed it as well. We ate some yummy food in the Africa area and then headed to Dinosaur. Caleigh loved this crazy, dark and scary ride. We rode it twice in a row. By dinner Caleigh was worn out and very particular about the characters coming up to her. She didn't like it. We had dinner reservations where Mickey, Donald, Daisy and Goofy walk around to each table. Caleigh wanted autographs, no touching and no photos. Very specific. We left after dinner and got in for an early night of sleep. 

On our final day we went to Disney Springs and Magic Kingdom...

Caleigh's day started out with an appointment at Bibbidi Bobbidi Boutique as a gift from Mrs. Lisa. She loved every single second of this. We brought her own Cinderella halloween costume, she chose her hair style, makeup color and had her nails painted by the Fairy God-Mother's in Training. Caleigh loved this SO much!


Pampered and princess like we headed back to Magic Kingdom. This time we chose to take the ferry over. Good choice. 

Our last day at Disney World was pretty magical and moved fairly smoothly. We knew where things were, back ways and where to avoid the clumps of crowds. Caleigh met Tinkerbell and she actually enjoy the interaction. They talked about their matching hair buns and the importance of fair dust. It was cute and very quick. We showed up to Flight of Peter Pan over an hour late for our fast pass, but they let us get on. It was a great ride and extremely fast. It took longer to get Caleigh in and out of her chair to experience the whole ride. 

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We headed towards our third fast pass which was Pirates of the Caribbean. We got hung up with the parade, but it didn't take too long to pass by. Pirates of the Caribbean was very well thought out and the quality of theatrics was pretty impressive. We transferred Caleigh into the boat with us. While in the area, we went to the Tiki Room and enjoyed some Disney nostalgia. Right after we got off the ride we headed back to the Mine Train and got Caleigh's guest pass. The wait was two hours. So they gave us a time to return. 

We went and got Caleigh dressed back up in her Cinderella gown. After the over heating incident, we convinced her to take it off during the day and change back into it for our dinner at Cinderella's Castle. When it was time to go into the castle for dinner, we were ushered straight to Cinderella for a photo. We were then called up to the small dining room. This reservation is incredibly difficult to get. Lisa made some magic happen here. They were incredibly helpful with all of my dietary restrictions and the food the entire trip was fabulous. Gluten free and vegan waffles every morning, yes please! Nothing different in the castle. They introduced Aurora, Ariel, Snow White, and Jasmine and then the princesses went from table to table taking photos and chatting with the kids in total character. It was adorable. Caleigh wasn't too interested in the meet and greet other than seeing Ariel. 

When we were finished eating, we headed straight back to the Mine Train and Caleigh got to ride it one more time before we headed back to the ferry for the evening. It was a good end cap to our trip and we left at just the right time. 

 

I was really impressed with the accessibility of the parks, the rides and the kindness of everyone. The guest pass worked after all the fast passes where used up and you could only have one out at a time. Some of the smaller rides let us on right away when we asked, but the rides like the Mine Train had to go by the standby times. We barely waited in any lines for rides. We waited for the restroom, photos and food longer than the rides. It was perfectly planned. 

I'm so glad we experienced Disney with Caleigh at this age. We're blessed to have the funds and the time to do things like this with Caleigh. We've never had so many family photos taken either! Lisa planned this trip perfect for us and I'm so excited that we got to experience each park for a full day or more. Caleigh loved all of the princess attention and especially the salon pampering. If we go back it will definitely be during a cooler month, and we'll keep to Animal Kingdom and Magic Kingdom. For the cost, the Boutique is a must stop for any little girl.

With Caleigh it's good to have a down day in between with some swimming, shopping or a movie day at the resort. Caleigh's impatience was disappointing and I didn't expect for her to be bored if we stopped moving her chair for any reason. With short bowel syndrome and feeds there was a lot of breaks. She was overtired and overstimulated the majority of the trip. In my mind, our first visit to Disney World came with a vision of how that should look. That's my hang up and of no fault to anyone else. There were wonderful magical moments, but just like everyday life, I'm reminded often that I need to adjust my expectations and dreams as a parent, no matter how magical or dreamy a place can be. 

We packed up, walked around the resort lake that last morning and then headed out of town. 

Caleigh woke up at the beach the next morning...

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Fall 2016

Raising the Rare ChildHolly D. GrayComment

August...September...October...November...December...

My first semester as a graduate student was intense, but so completely rewarding. The extra time that I had outside of school was spent with Eric and Caleigh. Updating the blog came in last place. I didn't learn to balance my time or learn how to do it all and I imagine that I won't figure that out in the next three years. I've learned so much about myself, my artwork and how that relates to my advocacy. I've made some lifetime friends and colleagues that just get my quirky artist ways.  

Cinderella via madeofgray.com

September was spent with a home nurse that wasn't a good fit for Caleigh or our family. She was there because we needed her there during my first month of classes. I honestly don't remember a lot about this time other than a terrible sense of mom guilt and an unhappy Caleigh. 

October brought us Caleigh's new nanny. The transition was a rough one due to the habits of the previously mentioned nurse. Nanny R has a child development background and stuck to her guns. It took a good two months, but they're now in a great routine. Caleigh dressed up as Cinderella for Halloween. She's loving the live version of the classic tale. There was glitter EVERYWHERE and I'm still finding it. My mom guilt lessened by 75% in October. Lets be real... it never really goes away. 

November is when I really dug in and started working on my art and not just spending my time on the bureaucracy of grad school. We took Caleigh to see Dr. Yngve in Galveston for a follow up visit. She was due for this back in June, but we were in Boston and a little preoccupied then. Caleigh's hips are exactly the same as last year. He suggests waiting another year for any decisions on hip surgery since she just had huge surgery this summer. We're good with that. We'll see the CP clinic in Boston next time we're there to get another opinion as well. Post-op for that kind of surgery will require several days in the ICU. So we want to make the right decision as to where. 

We put in all the paperwork for new manual chair seating and a completely new powerchair. We received the toilet chair that we ordered back in March. It's making life so much simpler and definitely safer. Since returning from Boston, Caleigh has really grown. It feels like we are needing to adjust and order everything new. 

December has started. How on earth are we already into December? I finished my first semester, I survived and I'm loving it. Caleigh had an appointment with her orthopedic doctor locally and he agreed on everything Dr. Yngve suggested. We've been in contact with Boston since we got home. We'll be planning a trip up in the Spring. Caleigh now weighs 57 pounds and is 45 inches long. Almost 4 feet tall! I'm 5 foot, so....

More to come in the next week!

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