October 1, 2022
Hello friends.
So it's been over a year since the last time I blogged on here. For the first time since I started blogging for Bradley and the 31 for 21 Day Blog Challenge, I didn't finish. We did get a bit of complete overwhelm here in our house, and in that mix somewhere, I lost my voice here on my blog.
There is quite a bit of catchup to happen, and quite a bit of up to date needed to make this month one that brings justice to a sweet boy and all those like him. But first...where did I go?
Eric hurt his back in the middle of volleyball season, that turned into an incredible nightmare of trying to take care of him and take the pressure off of him so that he could make the games and watch our middle girl have a pretty amazing senior high school season. Part of the issue for me was we were just there all the time, the focus of the family that whole month was trying to take in the moments that happen in your kid's last season on the court, and deal with all the emotions that are so close to the surface and sit with you through every game. I was tasked with getting the senior banners created and ordered for the girls and then getting them up in enough time during season that the girls could actually enjoy them. There were shifts in the Snack Shack to be filled, there were team dinners to prep and deliver before each game and though those were distributed amongst all the parents, it was a lot. Then, having a senior - I was part of the group putting the senior gifts together (no big deal) except, someone had to deliver them all. Perk of being a mom that works from home means I can adjust my schedule to be available to do all the things that needed to be done to make sure that all the girls were taken care of, not just my senior. The downside, it is exhausting. After a few trips back and forth to the car - the knee that needs to be replaced (and the mom that just isn't ready for such a surgery) really started to get angry. By the time I got done, I sat on the bleachers and found myself in a fog - exhausted. I absolutely loved being there, being with my family supporting my daughter in those last times on the court. I loved being instrumental in helping her bridge the gap between her play and her mental game, working with her as she struggled - loving her through it all, and wiping tears when she stepped beyond the struggle and experienced the victory.
Sweet Bradley - amazing. Never had an accident at the courts, always went with me to go potty in a weird and loud Ladies room at the gym, didn't complain about somewhere new, just proved over and over that he could do it. We bought two cushioned chairs that had armrests, one for Eric to sit in for his back, and the other was theoretically for me - turns out though, Bradley really digs this chair and when I put him in the chair, he sits crisscross applesauce, watches his movie and doesn't make a peep, nor get squirrelly. Best thing we ever did was get these chairs. When he has a padding for his bottom, Bradley doesn't keep climbing in and out of my lap impeding my ability to cheer. Once we figured this out - volleyball season got a whole lot easier to watch. Had we figured this out when Madison was a freshman that would have been really ideal. Sigh...
It felt like if we weren't at volleyball we were at Therapy. October is a big month for doctor check-ins too. So there was a lot of driving and running. Bradley's appointments were easy, we just went. Sydney's - such a fight. If I wasn't fighting the school about her being absent, I was fighting the doctor's staff who didn't want me bringing her brother. Somehow, my non-verbal and disabled son was going to be an issue at appts. If he were loud and running around, I could see it - but it was just his very existence. We tried several times to attend an appointment to see Peds GI for a second opinion with CHLA, but every time they said I couldn't bring her brother and every time I told them I wasn't coming without him. It takes about an hour to two depending on traffic and time of day. Parking is a real issue and can take a good thirty minutes to happen unless you just pay the valet fee - this happens on heavy traffic days. There is the long check in line to get into the hospital where I stand with Bradley - they try to give me a mask for him, which I decline. All while I am surrounded by families...one patient and two parents (or a parent) but multiple siblings of different ages. Sometimes the patient is obvious, sometimes not. But multiple non-patients are in evidence. Trips to CHLA are a good four to six hours. Trips to the GI there - even longer. Why? I don't know for sure, but when you have to talk to the intake nurse, the Intern, the Resident, the Doc, who then speaks with another doc because your kids are complicated, and then you're done...it's a long day. Bradley can't be alone and can't get himself off the bus and in the house alone...and Eric doesn't have the kind of hours to take off work to constantly be here with him when I had to take her down there. And Madison is in college, so yeah that's even more difficult.
We pulled Sydney out of CHLA completely.
My girls in High School taught me that I could no longer be completely honest anymore. My daughter was given an unexcused absence when we pulled her out of school for two classes at the end of the day to watch her Uncle get married. A funeral would have been accepted. Every time Sydney had a sinus infection or asthma attack, I had to take her to the doc to get a note to say it wasn't the virus because those medical issues just aren't allowed anymore. Volleyball had to be carefully negotiated and noted. Sydney went on a sanctioned NCAA College visit - it was unexcused. Her second one - she had "cramps". Ridiculous! No idea what the parent of a boy would have to say. Although, at the high school the girls attended, "cramps" would also be accepted.
Always trying to juggle something. And even in the midst of the chaos, we do all we can to keep the world as calm and routine as possible for Bradley. Sometimes that routine might happen a little late - but at the end of the day, we take the time to make sure all the steps are followed to give him the best shot at success - whether it's for school, for therapy sessions, for evening meals, and especially for bedtime.
Today of course the routine is out the window. It's a Saturday and he has an ear infection, so all bets are off as we fight through this.
Okay then, signing off for now. Bear with me folks - I'm finishing this year. Last year was a fluke, I promise. ;-)
It is October and Day one in the books for the 31 For 21 Challenge to Bring Awareness and Acceptance for Down Syndrome.
#31For21BlogChallenge
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