I was staring over the ball field today, the first time I sat still and just watched my kids in a few days, it seems. I’ve been scrambling to change some basic parts of the design for the EmBraced In Comfort bodysuit to help “C” with some severe chaffing problems. We are close, but when I get into those overwhelming design connundrums, I kind of shut down, the eyes glaze over, and I keep picturing garments floating around in front of me instead of noticing my children in front of me. So, as I was sitting out on the bleachers, feeling the sweat trickle ever so slowly down my chest, I looked out and took a good look at my daughter. Now, I have always thought “C” was a pretty little girl. It’s not entirely just that I’m baised – I recognize that she’s pretty in her own right. But, today she looked so grown up and pretty, that I thought, “Boy, she is really beautiful!”. I try to always tell her how pretty I think she is, because most girls have issues growing up even without a deforming disease. But, today I didn’t see that holding her back at all. She stands tall and proud, keeps her shoulders mostly in allignment (evidence of all her PT work), she has long, strong, and lean legs, a cute button nose, and is starting to get a sprinkling of freckles. I think she’s absolutely beautiful, and I hope as she grows up she can see that this disease will not prevent her from being beautiful on the inside AND the outside. Her confidence, her sparkling personality, her joy – these are things that will radiate out to the world, regardless of if one shoulder falls a bit forward, or if a hump protrudes in her upper back when she bends over. I hope she’ll see what I saw today, and I hope I’ll remember to tell her…and keep telling her, until she believes it. I encourage you all to do that with your daughters, regardless of the shape of their spine.
For those of you who have children in the Spinecor bracing system, you probably realize that they are starting to transition people over to the velcro comfort shorts system. For a while, they didn’t make it small enough. My orthotist gave me a larger one and I spent quite some time pulling it apart and making it smaller for my daughter. But, now they make it in her size. The only problem is, as usual, there is no easy way to use the restroom while wearing it (the hole they provide is comically small). Also, the material it is made of appears to be very uncomfortable to have pressing hard against your skin all day, and my daughter wholeheartedly agrees. Luckily, the EmBraced in Comfort bodysuit is a perfect solution and we were able to transition pretty easily. I still have a few hurdles to overcome, like she still gets some chaffing where the brace rubs the small opening of skin under the pelvic strap of the bodysuit, but I got some pretty pink moleskin fabric in the mail today and plan to attach it to the inside of the brace in the inner thigh area to keep that part from chaffing her skin. I also cut a very large opening from the comically small hole that I mentioned before and now I think we have a more comfortable system than before. She wears the bodysuit underneath the shorts and when she needs to use the facilities, she simply detaches the Velcro on the pelvic strap, pulls it back, does her business, reattaches the strap and it’s as easy as that. The bodysuit protects her skin on her leg from the uncomfortable, itchy material of the “comfort” shorts. I think this system will increase effectivity because the shorts seem to “turn” less on her body throughout the day and we can keep the tension high on the straps to maximize effectiveness.
If you would like to try the bodysuit, remember, you can try it for free. I’d love your opinion and I’d love to help your child (or adult) be more comfortable in their brace.
The past few weeks I’ve been so overwhelmed with my life that I’ve neglected to post. I guess I was putting it off – there’s been so much turmoil that I couldn’t quite express it in words. I had to keep living it and dealing with it before I could stop and think about it. All families go through those times – the end of the year school trips and occasional onset of multiple doctor appointments. Then there’s the Spring Cleaning, house projects, and family visits. Well, we’ve had all that and more. Many people don’t realize the all-consuming nature of having not one, but two children fighting a slow and sinister disease. Not only do you have to fight the disease, but you have to constantly navigate the world of doctors and medical tests, alterations of treatment, having differences of opinion with doctors, researching to find solutions…it can be plain exhausting. And, I’ve been caught up in this as both my kids have been undergoing a lot of medical and life changes. Medically, I have “C” moving from one modification of the Spinecor brace to another, newer configuration (called the Comfort Shorts System – more on that in the next post) Then, we’ve had “V” going for all of his initial tests, most importantly his MRI. Meanwhile, school is ending, we’ve had two great class field trips to zoos in our area, multiple Girl Scout events, family events, and the ever-dreaded, but much needed and procrastinated Spring Cleaning (which for me goes all year). Then there are the continual construction projects to finish refurbishing this ancient and enormous farmhouse (now four years into the project). So, life has been overwhelming, but it’s been great, too.
I’ve started to gain more of an appreciation for the every day with my kids. I try to make more of an effort to treasure them. You wouldn’t think that it would take much effort to treasure them – after all, it appears that I am severely blessed to have two such beautiful and intelligent children (I’m not baised, it’s just a fact!) 🙂 But, when I get caught up in the everyday tumult of my to-do list, I become paralyzed and sometimes numb to the emotions that one needs to actively “treasure”, so I forget to, or neglect to, or sometimes both. But, when I was preparing to take “V” to the University of Michigan Mott Children’s hospital to undergo his MRI under full anesthesia, I started to feel those “crazy Mommy” emotions surface. I was a bit of a wreck the day before – I worried about every little thing and, in the midst of that, started to remember what was important here. My house will NEVER be done and will NEVER be clean, but if my baby boy can make it out of anesthesia without too many negative side effects and if we get the word that his spine is clear of tumors and cysts, then I can take that to the pleasure bank. Luckily, he made it out of anesthesia brilliantly, sucking on banana popsicles and staying up into the wee hours afterward watching his ‘Chip n’ Dale’ DVD. And, we just found out today that his spine was perfectly clear. Which means, the scoliosis he has is the same that his sister has – it reared it’s ugly head early, it’ll progress quickly, and it’ll take daily and diligent effort to keep it at bay. But, despite that struggle, he came out fine from yet one small procedure, and I’m grateful. I’m grateful he’s well and I’m grateful for the reminder from my God on high that these are treasures he’s given me – not merely children, but sparkly little bundles of treasure.
We are a very active family. Sometimes we are active apart (I work out daily, Andy lifts weights daily, the kids do their gymnastics and baseball). But, sometimes we are active together. Being active helps all areas of your life – spiritual, emotional, and it can only help any physical ailments you have, if you are active in healthy ways. Today the entire family went to the local park for tennis – including the dog!! She is a die-hard retriever and her favorite thing to retrieve are tennis balls!! So, we went to the park – there’s tennis courts, basketball courts, playground equipment, and a creek that runs through everything. It’s quite nice and the weather today was beautiful. Padme, our dog, took some of the “work” out of tennis, as she ran after each ball that went astray and brought it back to its rightful owner. She even got good at running outside the gate, getting stray balls, and bringing them back in. Fortuntely, this is not a crowded park, so she was off her leash and had free reign. The only time she had to stop was to run down to the creek, take a swim to cool off, then head back on the court. We could hardly keep her away from her duties! We are all very tired, but we had a great time.
Now, my experience biking to the park, with “V” on his bike (with training wheels) was another story – I don’t think I got much exercise, because I just basically sat and glided on my bike the whole time, and it was very frustrating (“‘V’ – look AHEAD of you!!”), but we had fun nonetheless. Now it’s time for everyone to get some rest…
This was just one of many jam-packed weeks on our calendar this spring, but it was a very good one. This has really been a big week for “V”, and it started on the ball field. “V” is in T-ball and loving every bit of it! His team prefers tackle-style T-ball, and, until the coach puts the hammer down, they will be content to all pile on each other every play. “V”‘s strategy is to “converse” with every player that rounds his base. It never fails: the second they put their foot on the base, they are in deep conversation.
On Wednesday, we went to “V”‘s Preschool Graduation. They put on a great little show (including the alphabet in sign language!). “V” took the award for “Most Serious”. At first I was surprised, since “V” is in continual “clown mode”. But, then my husband reminded me how “V” is always yelling “NO RUNNING!!!” as the kids file off the bus in the morning, and I realized that he may be silly, but he’s a definite rule-follower at school (wish it were the same at home!) Following the ceremony, we took some pictures, then we went out to Big Boy for ice cream with Grandpa Dale and Grandma and Grandpa B.
The next day, I had the pleasure of chaperoning “V”‘s class field trip to the Saginaw Children’s Zoo. We had fun, but I was definitely pooped! We got home, rested for about an hour, then when “C” came home, we headed off to my friend’s farm to see her new baby chicks and ducklings (and to pick up some beautiful farm fresh eggs!!) “C” did get some pretty exciting news that day, though, as a good friend of mine’s daughter asked “C” to be the flower girl in her wedding. Boy, I haven’t seen her grin that big in a while!!
All in all, it was a great week! Busy, though, and not much time to put into my business. I’m working on modifying the Spinecor Comfort Shorts system for “C”. So far, many people are finding this compression shorts alternative to the straps and buckles of her current system to be much more comfortable. Problem is, they don’t make it for little ones, and they don’t make it easy to use the restroom (common story!). So, I’ve taken them apart, taken them in, reworked them, am adding some straps, cutting here, tucking there, etc…I will definitely have a working solution by Wednesday, because we’re visiting her Orthotist in Ann Arbor to get her fit into them for everyday use! They should be much more comfortable than what she has, and I’ve modified them so she can wear her bodysuits underneath and it’ll actually be easier to use the restroom and get the brace on and off. So, here’s to hoping it works out this week!
Blessings to all, and have a great week!!
Here is an exerpt from a conversation with my 5-year-old son, “V”, this morning as we were driving home:
Me: “What would you like for your TV time?”
“V”: “I’ll give you three clues. First, What am I playing now?”
“V”: “CORRECT! Two, now how many people are in our family?”
“V”: “No! 6”
Me: “No, we don’t! There’s you, me, “C”, and Daddy”
“V”: “Yes, but don’t forget Grandma and Grandpa”
Me: “OK – so you want Transformers, disk 6”
“V”: “No! Because the 6 is really a 2!”
Me *sighing*: “OK – Transformers, disk 2?”
“V”: “No! There is a zero with the 2.”
Me: “There is no Transformers disk 20”
“V”: “No!, I’m talking about disk 12.”
Me: “So, the zero is really a one?”
“V”: “Yes, you got it!!! Good job, Mom!!”
This afternoon the big trucks were out on the country roads near my house as I made my way home from running errands. They were in the process of doing some much-needed cleanup on our drainage ditches. I ran home, unloaded the groceries, packed my lunch, and headed out to get “V” from school. He had already eaten lunch, so I told him I had a very special thing to show him. He immediately was intrigued. We are not used to having ANY action near our small town, so he thought it was nearly impossible that something REALLY COOL lurked just around the corner. But, when we headed to the end of my road, about 1/2 mile past our house, he saw it – the big, yellow, magestic creature, ripping out entire trees with it’s immense claw!! I was in a bit of awe, myself, I must say. The man holding the “stop” and “slow” sign waved me past (we don’t get many cars on my road – maybe 5 or 10 an hour, so he was paying close attention to me). I just waved back, pulled the minivan over on the shoulder on the opposite side of the road, rolled the windows down, turned the hazzards on, and we sat there, gaping like it was a live-action movie! “V” was thrilled that he got to climb into the front seat, and he stuck his head out the window (I mentioned there are very few cars that pass – don’t worry – I was watching out!!) He just exclaimed “Wow, I can SEE it and I can HEAR it!” After some time, the truck we were watching went to take a break, so we headed down the block to the other truck, excavating dirt from some ditches. This road is a bit busier, but we pulled up, right across the street from it this time, and my son climbed on my lap and stuck his head out the window to watch. The man in the truck, wondering what was going on, saw the wonderment beneath my son’s spiderman sunglasses, and he grinned as realization dawned on him. This was an action movie, and he was the star! He got a bit akward as we gaped at him and his big truck, but he put on a good show anyway! It was great fun, out there in the beautiful spring weather, enjoying the view of trucks working next to the wide open fields of freshly planted crops. Sometimes I don’t like living out here, but sometimes I just LOVE IT! Take some time to share the wonderment of a child today – it puts you in a terrific mood!