My muse has vacated me of late. No real words in an adequate assemblage in my head to put down to key. Usually it’s the writing that keeps me centered and inspired. So I miss it, and I’m sad it hasn’t been a part of my daily self. There has been a myriad of influences keeping me from writing for the last few weeks.
We’ve left our winter cave and have ventured back out into our community in the last month, heading out to parks, birthday and dinner parties. Some of our favorite entertainment and we’re happy to be back at it. With our families being hit with one illness after another since last November we’ve been leary of exposing others and ourselves to any additional germs. We’ve also just finished up the good company of a nice long visit with Nana & Bapa. This is the 3rd year in a row they have come to visit during Lovey’s spring break holiday. Also the third year we’ve incorporated a trip up to the mountains during their stay. Zuzu loves to see them- and loves getting to go to the hotel and ride the “alligator” with Bapa, pick through the buffet of Loopfruits & muffins and get her own juice. She’s recently been watching fairly non-stop a video from our beloved Cyrena; a trip into the bizarro land of the Big Rock Candy Mountains. I was fairly certain Zuzu would burst into tears at the point in which she realized Lil Bunny Foo-Foo wouldn’t actually be materializing in our humble mountain escape.
Unfortunately at our first dinner out in the Mountains, the Quail started crying uncontrollably and when we reached over to lift her up realized she had quite suddenly developed a fever, 103.5 to be exact. So back to the room for a weekend of mountain isolation. It was all-in-all a nice trip, but unfortunately for the Quail she remained feverish and at home for the ensuing week. Fortunately for Nana, that meant a lot of good quality baby-holding time, so I think the two of them made the best of it. This most recent illness ended our 3 week fever-free stint and came on the heels of a recent “moderate dysphagia” diagnosis for her. I’ll go more into the repercussions of this diagnosis later this week. But needless to say it’s been consuming me with guilt and worry over how we could not have known this before, the potential risk it means she has been at on a daily basis and the possible treatments that have been brought to our attention. We have yet to go back to her GI specialist though. An Upper GI was scheduled for last thursday but cancelled due to the virus. Once that test is done we’ll head back to our GI and see if further surgical or invasive intervention is necessary or not.
I tend to shelter myself from bad things. I don’t watch TV dramas, the news, read the paper or google horrendous acts. Generally I keep my focus peaceful and happy. I look for things to be grateful for and when I encounter something unsettling I work towards resolution. I’m not one that is ok sitting and ruminating on something, and am clear it does nothing for my mental health to hash and rehash an upsetting encounter, relationship or issue. Either we figure out how to fix what the problem is or we let it go. I try to not offend others, but I’m not one for mincing words. I’m clear not everyone wants to hear my opinion though, and I usually pay pretty close attention to my relationship with the person and will analyze whether or not I even think it is my place to intervene. And if it’s not, I’ll usually shake my head and move on. I don’t offer up assvice unless it has been requested. Which isn’t to say I don’t have opinions on things, oh I do. I just am pretty clear when others aren’t going to benefit from hearing them. Well I’ve spent a lot of years in an advocacy role relating to people with disabilities. I know people are ugly towards others that are different than them and their values. I know that if you don’t have someone directly related to you with an obvious disability you may never have even thought about your own thoughtless thoughts, words or actions. Even if you do know someone with a disability, they may then serve as the epitome of what all disabilities are or mean or as the exception. Since the Quail’s birth I’ve joined a number of online advocacy groups that work to educate others about individuals that have intellectual disabilities in hopes of promoting respect and equal opportunities for them. In the recent weeks there has been a LOT of work to be done. And frankly it’s been breaking my heart. Being exposed on a daily basis to people’s cruel viewpoints, words and actions that I know I won’t always be able to protect my family from is one of the worst feelings. So while I know I need to keep participating, frankly I”m shocked at how ugly people choose to be, how bullying others are to those that have done nothing to them. I’m appalled that self-professed intelligent adults can be told that something they are saying is offensive and their response is to escalate in their bigotry. It’s taken the wind out of my sails and made me want to retreat into our winter cave and return to our happy dreamland of hibernation. I know that’s not an option or even what I really want to do. I’m just extremely disappointed in my fellow-man right now. Ironically it is the exposure to the beautiful community of families touched by someone that has a T21 diagnosis that inspired me to join in and share our family’s life online. Seeing the trolls out there that are activly seeking out people with disabilities to bully has given me pause as to the wisdom of continuing to share. At this point I’m fairly certain I will along with some precautions. If sharing the beauty of our life helps even one mother realize that she can keep and love her baby with a diagnosis she is unfamiliar with; if sharing our life helps inspire one person to be kinder to their fellow man; then it’s worth stepping over the ugly trolls out there. Leaving only means they win and only endangers my families personal security more in the future.
So I’m sad, I’m tired, I’m disappointed and I’m angry. And yet day-to-day life muddles on. The milk still needs pumping, the clothes still need washing and folding, the babies still need hugging and cuddling. And this Momma is content to lay her weary head onto her flannel-clad pillow between the heartbeats of her dear ones at the end of the day. I’m grateful, I’m graced, I’m blessed and I’m in love. My muse will return as spring clears the air and we all get some rest and wellness. That’s where I’ve been, that’s where I am, that’s where I’ll be….