This past week Zuzu got it- and by it I mean that everyone has Mommas and Poppas- not just her. While Gramma was here she reasoned out that Gramma was my Momma and Nana is Lovey’s Momma. Which was a delight initially and then a little less and less sentimental as the weeks went on. At one point I heard my mom calling Zuzu Lady. Zuzu- of course responded with, “I’m not Lady, I’m Zuzu!” At which point my mom tried a new bargaining chip- that if she would continue to call her Gramma, then she would remember to call her Zuzu. You can’t blame my mom- she’s waited patiently to earn this revered title and has worn it proudly. Zuzu would agree, and then a little while later come to tell me something that my momma needed.  Oh dear. Well when Auntie D gets married this fall my guess is her title will be the next to fall as Zu continues her current train of thought and notices that D is my sister, just like the Quail is her sister. Enjoy it while you can family!

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.

The GOOD:

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. 

The BAD:

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.

The UGLY:

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….

So I’ve been a little grumpy, and tired, and sick….and I can’t wait for all of it to pass. The last few months of repeated illness have really worn me down. Each time I think we are past one illness it seems another comes along. This past tuesday night Zuzu told me she wasn’t hungry, and I had her eat anyway. Then she told me her tummy hurt and I made her finish her bath. Fortunately for the Quail, her and I; I did manage to get her out of the tubby before everything she had eaten in the last week worked it’s way up. Poor lamb, she was sick repeatedly into the night until about 2 am when she woke me up with, “Momma, I feel better now, we can go watch a show in the living room!” And then again at 3, and at 4, and at 5….she really did feel better though, and even though she stayed home with Lovey the next morning and me in the afternoon she was her cheerful, energetic self. So I wrote it off to maybe some bad food and back to school she went thursday.

Come friday morning I woke up with a tender tummy and again wrote it off to bad food. Apparently I need to clean out our pantry if I’m so easily convinced it could be the food. I made it through an hour and a half of work before realizing what was coming and made it home just in time. Chula Cat, Lovey and later; Zuzu were very kind to watch over me and I got a few extra hours of daytime sleep in before the yuck hit Lovey.  We are just hoping it isn’t too much to ask for this to pass by the Quail. We’ve been making sure she drinks the most recently pumped milk in hopes of loading her up on antibodies to it. So far so good.

At any rate, I’ve been having a real blizzard of thoughts on how to cope with all of this. I’m fortunate that Lovey can adjust his schedule and work from home, night or on the weekends so that really there is only about a 1/2 dozen hours in my work week that I have to take off if the kiddos are sick. I know I am VERY lucky in this, and I am oh, so grateful for a progressive, loving and involved Daddy to my kiddos that sees it as his right and responsibility to actively take care of the kiddos- including when they are sick. And I’m blessed that the kiddos are as attached to him as me so that it is a comfort for them to stay home with me. But with all of this happening within the first year after my return to work from an 8 week maternity leave, my reserve of time off, is there but fading. I’m not quite using it as quickly as I earn it, but the two statistics are gaining on each other. I feel bad that I don’t spend more time with the kids. I feel like I need to actively be more of a mom to them. There’s the overarching, gross worry of  if the Quail is going to need open-heart surgery in a few years and just the thought of that scares the dickens out of me. And then there are the more mundane ordinary worries (of which I am grateful to have!). I want a homemade meal on the dinner table, I want actual activities and adventures as a family. I want the house less cluttered, and to spend less time getting it that way.  I want to be to work on time and I want to be focused and productive while I’m there. I want a job where my work doesn’t continue to pile up when I can’t be there.

I know there are many long range things I can plan for- moving closer to work, working less hours, looking for a different job. When  the day comes I’m no longer pumping and nursing I know I’ll have more energy. When the baby goes back to sleeping through the night I’ll have more energy then too. When her little constitution is a bit more germ proof after this vicious cold and flu season she’ll hopefully get sick a little less frequently.  In other words I know this will all pass. I remember Zuzu’s first year- she was sick with raging ear infections from 7 months- 13 months. While she was never hospitalized for it; she got very, very ill with each and her reaction to each antibiotic was no picnic either. But as she got a little older and her immune system a little bolder she gets sick so much less often. I do know this will happen for the Quail eventually too. I’m just tired right and frazzled right now.

In the meantime there are some things I can do. I can go to bed earlier. I can sleep a little later. I can take my vitamins. I can try to make sure my diet is healthy and not filled with junk or quick finds. I can try to focus and get caught up at work so it isn’t stressing me out. I can make an extra effort to leave early for work so that I’m not feeling behind when the day has just started. I also need to remind myself that I am the grown up here. That just because I’m unhappy and feel like I’m not providing enough to everyone within my immediate family; let alone outside of it and want life to be different, I don’t need to go around grumping about it. I have been finding myself short-tempered and a little surley. I’ve heard Zuzu ask Daddy more than a couple of times in the last month, “Daddy- why is momma so cranky?” as well as her direct instructions to, “Momma- you need to be nice to people that are just trying to pour their own juice” She’s right. I do need to be nice. Nice begets nice. All those precious little children know is if I’m smiling and happy and present with them, or if I’m just a cranky crank who has forgotten her manners. They don’t know, care or understand- that’s it’s because I’m so mad I can’t BE with them more that I’m like this! Gee- I’m sure they’d love to see more of this crankster too 🙂  I’m grateful that they are so sweet and forgiving and accept my smiles or cranks at such face value. I wish we all were more like that. 

Look for the light in the darkness you feel hemmed in by. On MLK day last monday NPR interviewed Reverand Kyles about the late great Martin Luther King Jr and how he came to Memphis which was a dark place at that  time in history and brought some light with his dream. He tells about the phrase, “Knocking holes in the darkness” from Robert Louis Stevenson in regards to remembering MLK and all he did for this country:

“I’ll be talking about knocking holes in the darkness. It is said that Robert Louis Stevenson was a man who never enjoyed good health. He spent a lot of time in his room even as a child. He was always looking out the window. His nurse asked him one day, Robert, what are you doing? He said, I’m watching that old man knock holes in the darkness. She said, what are you talking about?

He would climb up the ladder and light the light, come down, move the ladder to the next pole, climb up, come down, move the ladder. And everywhere he would light a light it appeared to him with his little quick mind that a hole was being knocked in the darkness.

And so I’m suggesting that those of us who have the strength and the ability, we should be knocking holes in the darkness.”

Rev. Kyles of course means this in a much bigger scheme in life. But with the reference to little RLS and his looking at “the bright side” of his life and his ability to be creative with what he had even though he wasn’t well, it just made me realize that I’m the one that needs to adjust my attitude before I start making any other major life adjustments. I don’t need to walk around cranking and picking at others because I want my life to be different, easier, less chaotic. I’m so blessed that my family loves me and accepts me. And I need to love and accept me. This will pass. And in the meantime, I don’t need life passing me by while I wait for it too.