Journal entry by Carrie Conway —
An update from Ali below:
I feel so satisfied after posting. It really allows me to reflect on what's happened and also serves as a reminder of how many people are on our side. After our quick post on Thursday, many mentioned that they "missed" my updates- more than 500 people commented or liked. I figured that since it's a sort of therapy for me and many of you want to hear, I'd give a little more thorough snapshot of our lives 1.5 years post SCI (Spinal Cord Injury).
Like the old movie, I can share "The Good, the Bad, and the Ugly." I've joined a few online support groups and from what others living with SCI share, Kevin is an exceptional man. There are so few people out there, with extremely limited mobility, who are taking on the world with such determination and bravery. Without a doubt, he's changing lives one child at a time (and probably having a decent impact on the adults he works with too). He couldn't do it without some very special people who I feel like are our new family members.
We just booked our first real vacation since his accident. In July, (with hopeful thoughts that Covid will have calmed down) we're going to travel to Tennessee- to Pigeon Forge, specifically, to spend a week in an amazing accessible cabin. We're hoping to be able to visit a friend at Dollywood, see some sites and hit up a moonshine tasting or two. We're totally nervous about getting there (we'll drive, NOT fly), and how Kevin's body will handle the long ride. We're nervous about changing our normal care routine and not having the support that we typically do. But, we're not willing to let our fears get in our way. We'll try it and hopefully make memories that will last a lifetime. And if it's not great, we'll shorten the distance for the next trip. We love travelling- and are ready to get back to the grind!
We worry that people will think that we're using fundraised money for recreational purposes. We are still SO humbled and grateful for what our family and community has done for us- and we want to assure you that we're not doing so. Every penny that was raised for Kevin's care has been used for just that. Adaptive equipment, Journey Forward therapy, and Medical bills are where we've spent some funds- and will continue to do so.
We had an emotional moment the other night. The winter seems to bring on more dark times and our spirits are down more often. We're suffering from lack of socialization. But, our super social son, who keeps in touch with his friends, mostly via video games (*UGH*) came into the living room, while on facetime, and asked Kevin if he could show his friends his "bag". We must have had baffled looks, because he said, "They want to know how he goes to the bathroom!" Kevin nodded his approval so I lifted the leg of his pants to "show" the boys Kevin's urine bag. Colin showed it and headed back to his room. We overheard him explain that since Kevin is paralyzed, he can't feel when his bladder needs to empty, so he has a tube that was surgically placed directly into his bladder, from his belly area, and it empties when he has to go to the bathroom. It was so matter-of-fact and casual. The kids were curious. Colin had no shame or embarrassment sharing this info- and it caused Kevin and I to melt into tears. We've worried so much about our kids, but they're navigating this life like champs. We also figure that there are many adults out there who are curious too- and that we shouldn't be ashamed or embarrassed either. I love when we learn important life lessons from a couple of 11 year old boys.
That seems like enough for tonight. Stay tuned for more stories.... I promise to share more updates soon. We couldn't do this without all of the support and love that we've received.
#LaCosteStrong
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