It’s been a while since I posted, and I wanted everyone to know where things are with the EmBraced in Comfort bodysuit and how our family is doing in general. This summer has been a whirwind of trips and work on the house – in that craziness, I did a complete re-design of the bodysuit to work better with the Spinecor Comfort Shorts system (out of necessity – my daughter was having all sorts of chafing problems with the material the shorts are made of – ouch!) Anyway, this week I’ll be re-submitting my patent paperwork to get the ball rolling on the re-design and then I’ll be publishing pictures and starting a campaign to let more medical professionals know the comfortable alternatives I have for their patients. So, stay tuned…I also have a video in the works to tell the story of our family and this crazy ride that led to the invention of the EmBraced in Comfort bodysuit. So, please check back and stay tuned – I have much work to do! I always love hearing your stories and adventures with the scoliosis patients in your families, so keep writing me and posting your blogsites so we can all learn from and support each other!!
Today it hit my daughter for the first time that she has a serious illness. We were getting her ready for bed – she had just had a nice evening celebrating her Grandma’s birthday, dressed in a sundress and NO BRACE! It felt so good – she really wanted to just “sleep in underwear”. I can’t say I blame her. On these hot summer days, I would feel pretty opressed getting into a tight fitting brace. But, I told her we couldn’t afford to spend her 10 hours sleeping without the brace on. No way. She gave me that look that she always reserves for me when I’m being the hard-nosed Mom and I looked at her and said that she could sleep without it when she’s done growing, but that she could never stop working at her various physical therapies – she would need to work hard her whole life to keep herself off the operating table. And, I said that the thought of her facing surgery really scared me.
It was then that she started to cry. A look of panic came over her face as she realized – this wasn’t just something I did to make her life difficult – this was real, this was serious, and this wasn’t happening to just everyone – this was a special challenge that she faced and that she had to take ownership of. And, she also realized that the thought of surgery scared her as well. She knows it will mean limitations physically and that very knowledge, mixed with the fatigue of the day, sent her into tears. Now, I didn’t want to scare my daughter, not really. But, I do want her to have a healthy dose of fear so that she’ll take ownership and responsibility for what she has to face. We discussed the fact that many kids face challenges and that those challenges just mean they have to work much harder to reach their goals. It’s not an opportunity for self pity or self destruction, but a call to work harder and more diligently than their peers.
But, it’s not simply a call to action – it’s also a call to belief. And, God resonated this in my heart just this week as he reminded me that I’ve even seen his miracle of healing in my own family, through a relative who experienced healing that the medical professionals could not explain away – I mean serious, undeniable healing. I realized that I have such a surface faith – and the further we get into this, the more I think I can do this or that to change things, that I can sieze control of the situation. And, we CAN do many things to change our situation, but we have to do one key element that I have been neglecting: We have to pray, and we have to pray like we mean it – like we know He’s a God of miracles – not just in biblical times, but here and now and that he DOES have the power to heal her, and he most definitely has the power to give us the strength to deal with any situation. So, tonight we prayed like we meant it – while the tears streamed down my cheeks and landed on her folded hands, we prayed and rejoiced in the fact that there is always hope in a Holy Spirit who lives and breathes in our lives every day, just as he lives and breathes in yours.