I have to write. It’s pouring out of my soul and can’t be stopped. I think I have sprung a leak. I have felt so many things this week that my digits on the home row can barely keep up with my racing mind.
Surgery. Ugh. The days before the surgery were the toughest. They were tough in a way I couldn’t have realized until my baby was in recovery. I rushed to be by his side, uncontrollably sobbed and I thought about how I’d been lashing and impatient and for lack of a better term “subconsciously freaking out. ” I never begged to be consoled.I didn’t know I needed to be. I never admitted, “hey I may be losing my mind a little bit here.” But I was antsy, sleepless, relentless, impatient and quick tempered in the days before. As my baby cried his little lungs out in his adorable tiger nightgown, relief washed over me like all the oceans….and I realized ” so that’s what that was all about.”
Theres so much more. So much. I cannot organize my feelings right now. They are rushing and I want off the ride! Hormones. Lets start there. They’ve got me going mad. I’m crying because I feel hopeless, hopeful, distraught and delighted. I am all over the place. In one week my emotions have made me spin so fast that I’m dizzy!
I’d better rewind and treat this diddy like a piece of writing rather than a weird look into my stream of consciousness….Surgery was Monday August 1st. Summer school ended Tuesday. Wednesday I took off my 5th grade hat for good and took a class to teach kindergartners how to read. Mind blown. Then, Thursday was my first full day home with the kiddos all summer. My summer vacation had finally begun and I wanted it to be grand; full of sprinklers, and baking and laughing and snuggles ……well, a funny thing always seems to happen when I create a magic spell in my mind of what my day will hold…the opposite happens.
I mentioned the surgery first because it could barely be contained in its can anymore…like one of those joke cans, you know, where a snake pops out? Without boring you, here is the shortened version…I had ear tubes three times so I remember it being pretty uneventful, besides my awesome “sick gift” (crap, I never got JuJu a sick gift.) I was told it would be quick and a nonevent. I was told you will see on the screen when your son is in recovery and a Mickey Mouse phone will ring to tell you to come back and see him. One hour and 15 minutes later there was no recovery on the screen and I had already sprung to that Mickey Mouse phone for some other family awaiting their news. Instead, my experience was a Dr. entering the room in full scrubs calling out Judah’s name…cue heart in throat. When I finally choked out “over here” he came over and said Judah was fine…. It was hard to listen after that, but the jist was it that it took so long because littles with trisomy 21 have such small ear canals. Judah’s happen to be really really small. So, the Mickey Mouse phone rang for me finally and I headed back to see my grouchy, thrashing baby… I didn’t care. Everything felt right in my world as I snatched him,perhaps a bit too abruptly, from the nurse on task. I never have felt such a rush of relief in my entire life. For that snippet in time my head was completely free from all of it buzzing and was replaced with a sweet soulful hum. Peace found me for awhile and as I’m sure you would imagine; true peace is delightful.
The next two days were difficult because I had to leave that little boy to tend to my career. He was in good hands though as both of his grandparents took turns keeping careful watch and I tried to soak new information into my summer brain.
Thursday I sprung from bed for my very first true day of summer vacation. I was ready for all of the therapies and I was eager to sprinkle in some good ol’ fashioned summer swagger. That’s not how the day went though. Judah had three therapy sessions and Calvin was not pleased with any of them. So, he made sure to get attention any negative way he knew how and I was in a constant battle with a short person. Still, I was determined to salvage the day and so we headed out to the sprinkler which Judah stared at and Calvin was scared to go near. You know when your toddler just has a bad day? Yeah, it becomes everyone’s really bad day. I sent a text to my husband shooting off my big mouth, like only I know how to do. I said, “this day has been so hard, I’d almost rather be working!!!” I wasn’t sure I meant it but it felt right at the time. After my sister in law invited me to a baseball game, I naively believed that would be the ticket to redemption. The day would be rescued….but Judah was hot, fever hot, and I was tired and my husband teasingly accused me of not really wanting to be working either (about my afore mentioned text.) Later when I was alone, sensitive solution streamed down my face and I was sure tomorrow would have to be better.
Friday began with me telling Bobby how he had hurt my feelings with his comment the previous night. I knew he was teasing and that there would be no way for him to understand the melodramatics that live within pregnancy but I tried. I attempted to explain how difficult it is to take a joke when you feel like your knee deep in quicksand. The conversation didn’t end with hugs and endearments the way I imagined (damn my dreamy envisions) and I felt unease as he walked out the door. Then the roller coaster started its downward descent. Judah had a fever that just wouldn’t budge and I had us packed for the ER and ready to move. Funny thing when you’ve been in a fist fight with trauma, you are always looking over shoulder for the next sucker punch (MUCH more on this in a future post) Naps weren’t successful and eating wasn’t going well; unless you count Judah biting me and Calvin. Through soaked cheeks Cal asked me why Judah was biting us. I tried to explain how Judah had trouble communicating because of his Down syndrome and how that’s what he would sometimes do if he was frustrated. I followed up by giving Calvin the big boy job of correcting Judah when he bit and handing him is Sophie giraffe to gnaw on instead. I felt real good about how I handled that and gave myself one imaginary tally for the day.
It was a small victory as I was led to yet another travesty. Calvin would soon regress and poop in his underwear. This is probably my biggest parenting frustration thus far. We’ve worked and trained like we are Rocky getting ready to face Ivan Drago, yet it still tries to break us.
Bobby came home and next up to bat was the good old fashioned husband /wife disagreement concerning the kids. It’s bound to happen when you’re brought up differently but it’s zero fun and let’s be honest….no one comes out ahead on this one. This happened to be Bobby telling Calvin he couldn’t have popcorn repeatedly and then doling out said popcorn when a tantrum ensued . I used my teaching 101 experience and explained to Bobby how important follow through is. This, he did not appreciate. He was just trying to keep the peace and I was causing less of it.
The air in the house was thick with a tense fog so, i decided I would go to the store for some groceries. I mean where else is a pregnant, overwhelmed, exhausted, mommy going to go in the middle of the day???
As I was just about to leave Wegmans and return to catastrophe, my phone dinged. It was from Bobby. It was a picture of a giant, man sized poop in a little kids sizes potty. Let me tell you, I wept right there in that parking lot . I am not ashamed to admit that happy tears were spilling over a number 2. They were flowing over a break from the other kind of bawling; the kind that makes your heart sink. These tears, these poop invoked tears, made my heart sing and I laughed at the craziness of it all the whole way home.
After I arrived home, I was still on my high as I heard Calvin quietly singing a tune under our kitchen table. It went :”oh Down syndrome, why do you have to have Down syndrome?” Had my heart been able to physically drop to the floor, it would’ve shattered into a thousand pieces. But I was on an upswing from a successful potty poop and so I addressed Calvin with a gentle knowing tone. I said “how come you’re singing that? Because of what I told you earlier?” You see, we don’t talk about Down syndrome a lot in our house. We don’t NOT talk about it but most days it just doesn’t come up. We are a family with struggles and beauty and fights and poops and make ups and so we don’t address the little bits of the disability that sometimes leave crumbs on our floor. I forget. Calvin helped me remember. It’s a thing. It’s not sad or regretful….. But It’s there like a sweet little song hiding under the table. And so I comforted Calvin as I comforted myself. I explained how Judah was just like us, except that Down syndrome meant everything would take a little longer with Judah; how we would just have to slow down a bit for him.I told the story of how he can’t talk or run or listen very well YET but he will if we all just are a little patient with him. In that moment I felt like thanking Judah for the sweet little life lesson about staying present and slowing the hell down.
I went to bed that night and cried for what must have been the 100th time that week. I watched a short little video that a mama made about her new little baby with Down syndrome.(click here to watch.) I cried for what this mom didn’t know yet. I cried for our hardships and for our victories. I cried for the way her whole life would change. I would cry for the way my life was hard sometimes. I cried for how I just had to cancel all of my weekend plans so my baby could get well. I cried for how much different our life was with Judah ; how I really had to slow my “type A” role for his gradual milestones and shaky immune system. I cried for the ways that every single part of the journey was “so totally worth it” and I cried myself to sleep thinking about how lucky we were that we would finally be taking a family vacation the very next week……and THAT’s where the shit would really hit the fan…. TO BE CONTINUED…