Made of Gray

Raising the Rare Child

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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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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Finding Home Again

Raising the Rare ChildHolly D. Gray2 Comments

After forty nine days on the road, inpatient and outpatient we are finally safe at home. We've been home for five days and I've struggled to form words for this post or my personal journaling. I'm going to try tonight so bare with me. 

Finding Home Again via madeofgray.com

The first night at home our air conditioner went out and we spent the whole night awake and warm. Luckily it was cloudy and somewhat cooler. It was repaired before 10am the next morning. It was definitely a lovely welcome home present. 

Caleigh is doing so well since her surgery. She is happier, sleeping better and in less pain than before the surgery. She is no longer on her ulcer medication, Sulfasalazine. She doesn't need the pectin added into her daily formula to slow down the feed and control the symptoms of dumping syndrome. As of now, she doesn't have any symptoms of dumping syndrome at all, but we are keeping an eye on things with frequent glucose checks. We are still treating the yeast infection she has on her abdomen due to a very leaky g-button stoma. This isn't surprising due to the month plus on strong antibiotics, but it's uncomfortable to say the least. 

Our outpatient time in Boston was spent at the Wingaersheek Beach , Plymouth, Castle Island, and walking the neighborhood; especially the Reservoir across from our condo. It wasn't all fun and games though. Caleigh had some really hard days and nights that first week out of the hospital. It was a great plan to stay in town for extra time to heal.

By the time we had our clinic appointment, Caleigh was doing well enough to travel home. The trip home had its up and downs. We traveled through Skyline Drive in Virginia's Shenandoah National Park, shopped in Asheville, NC and visited Georgia's World Aquarium during the week it took us to slowly drive home. I hope to share more from these adventures soon. 

Eric eagerly went back to work for the first time today. Caleigh had an eye appointment and picked out new glasses. She's been back to OT and the Chiropractor. We've had the powerchair and stander worked on and we've had lots of family visiting. My to-do list is two pages long. So we've jumped back in feet first. 

Everyone is asking me how I'm doing and I really can't find a word for it. The closest thing I can think of is numb. I feel numb and much older. I look extremely tired and I know I do. I feel like we lived in a bubble of near death only to be spit out happily on the other side and expected to carry on as usual. It's surreal and numbing. Ask me a detail about our time in Boston and I probably won't remember it. My brain and my body wants to forget the pain. Where I used to store the information and tiny details, I now forget them within the week at hand. I have the worst memory. Maybe a coping mechanism? Maybe it's a symptom of PTSD? Maybe it's CTSD? It probably doesn't need a label. I hope that with time we will all get back in the groove of our lives, and slowly the Summer of 2016 will be remembered by a series of archived blog posts that I probably will never read again. 

While we continue to heal and soak up what's left of the summer, I want to thank everyone for their love. Your support, prayers, gifts, cards and words of encouragement are the tools of Caleigh's success. She is one strong and incredibly brave little girl, but even the bravest of souls needs love and she could feel that from all over the world. Each moment of thought given was a major blessing. Thank you. 

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