Four weeks post op Cole is making great progress as far as walking, sitting up from a laying position in bed, and rolling over a little unassisted. These are all things prior to surgery he was doing, not awesome but much better than now. The hope is as he continues to heal, he will continue to progress and have better stability, balance, and range of motion. While all of this healing is taking place, something new has started. This something new is called e-learning. I never would have anticipated homeschooling the kids while working from home. Now I have the opportunity to juggle working from home and 2 kids doing e-learning, simultaneously. Lexi has done extremely well, although she still needs help a couple times a day. For example, one day she came running in the living room (while I was on a work zoom) and said she doesn’t know what to do next. As I run into her room to see if I can help, I notice she has colored all her finger nails with a pencil and put designs in them with the eraser. I tried really hard to just help her and carry on, but I had to inform her that if she focused her attention on the teacher and not on her finger nails, she probably wouldn’t have needed help.
Cole, on the other hand, has always loved school and has been excited to learn and be independent. However, something weird was happening every morning. He would be excited to get up for school, but as soon as zoom started he would cry. Anyone who knows Cole, he is not a kid that cries very often. His teacher would sign Cole are you sad and he would sign back very assertively NO, NO, NO. While wiping his tears away. He was embarrased and would immediately sign he was happy. However, within minutes he would want me to sit right next to him and he would be upset. He would think of every excuse to get away from the computer. Bathroom breaks, water, needing to see if Lexi was doing schoolwork, etc. Long story short, after 3 days I started to think he was having a hard time hearing on zoom. We hooked up an FM Transmitter, a way for the computer sound to be streamed directly to his hearing implant. It’s incredible the night and day difference. Now he reminds me everyday I need to hook up the FM transmitter when his zoom starts. He’s happy, smiling, and loving seeing all his friends… And hearing them. As great as this is, it makes me upset that I didn’t know right away. I cant even imagine for days being on a call and having no idea what’s going on for 3 hours a day. No wonder why he was frustrated to tears. I have to be very honest about something when it comes to parenting. I used to have some pretty bad guilt about not being home, working too much, cleaning too much (when I was home), losing patience with my children, and making mistakes in parenting. Full transparency, I have taken a completely different stance.
In my professional life, I lead a team of sales professionals by motivating, coaching, and ultimately driving results. I tell my employees on a daily basis, if you’re not failing, you’re not trying. I expect them to fail, I also expect them to learn from their failures. However, in my own life I was so hard on myself for mistakes while parenting. For those of you that fall in the relatability category, perhaps special needs parents, mistakes become the norm. Feeding the bed because the medport in the extension on the gtube had popped open, forgetting to put the heating chamber on for the ventilator, forgetting to fill the water bag for the heating chamber, dumping water in your child’s airway while attempting to drain the vent tubing, dumping food all over the floor because the feeding bag wasn’t all the way open at 3am, not noticing for 2 days that a nurse put in the wrong size trach and watching your child struggle to breath, trying to figure out why. These are just a few of the thousands of things that can go wrong… Multiple times a day. I, literally, could write a book on all the mistakes I’ve made including being late to pick Lexi up from school, forgetting about school spirit day, parent luncheon day, etc. If I do end up writing a book, it would be to inform parents that it’s ok, it’s normal, and don’t beat yourself up about it and STOP comparing yourself to that perfect Mom on social media… She’s fake and doesn’t exist. Women are so hard on themselves and constantly compete against other women, but that topic is for another blog!
Overall, I have to say, Cole is perseverving through this in a rockstar mannerism, as he does everything in his life. The kid is absolutely amazing, doesnt give up, and smiles through all of it. His incision is looking much better and healing quite nicely. He still is very nervous when we take his brace off for shower time or changing his shirt, but I would imagine his entire spine being adjusted must not feel particularly great. No pain meds, not even tylenol in weeks and he hasn’t complained of pain at all. We are back to underdogs on the swing, riding a bike, and walking up and down the stairs. 4 weeks down and 8 weeks to go until the brace can come off.
