Down Wit Dat: Moment to Moment
Many people aspire to “live in the moment”. In today’s world it has become cliché. In Team Logan’s world, this is our reality; we live in a series of moments, strung together like beads. There are many reasons we do this; we do this for happiness, we do this for survival. We do this out of a need for stability, even for a need of self-actualization. Most of the time it just boils down to ‘because we have to’. There is always a lot going on which makes planning and projecting almost impossible in some ways. The past few weeks have contained some very significant moments. Some are happier than others. Many, especially those from work, are best forgotten all together. There are the game changers too… those are the ones that we have learned truly matter. We have learned to parse through all our moments and live in the ones that mean the most. It’s not about hiding or being in denial; it’s about staying focused and enjoying ourselves as much as possible.
A very significant moment occurred a week ago Thursday. That morning, I found myself once more staring at fish.
Unlike the last time that I found myself tranq’ed by this particular tank, my daughter was buzzing around the room, occasionally stopping to gaze up at the waving tails within. Her twin, my son Wyatt —- the reason we were here —- was perched on my knee. I bounced him absentmindedly as he watched his sisters antics and grasped my fingers with his chubby fists. The bubbling of the aerator was soothing; once more I found myself falling into a trance when we were called into the cardiologist’s office.
The uncertainty of Wyatt’s heart has been looming over us for so long. Like the Sword of Damocles, it hung in the balance on the barest of horse hairs . So far, so good: no CHF; no meds; no cyanosis. No coughing due to fluid in his lungs. No infections outside of the two colds the kids have endured. No antibiotic use outside the NICU. We’ve been lulled into a sense of comfort by our lives, we’ve tricked ourselves to not see it. Occasionally, we look up and remember. Sometimes I can almost feel it’s keenness whisper across the back of my neck. Whether we want to admit it or not, we are “cardiac parents”. Our son would be farther along in his development if he didn’t tire so easily. This day we will get answers. We find out if we’re continuing along, or if we’re steeling ourselves and actively planning for his surgery and subsequent recovery. There is a lot hinging on the next hour or so, ranging from the usage of accumulated vacation time to Christmas plans to our future in general.
It’s a familiar place, this office. I like the doctor very much. His wife is also lovely and works as his sonographer. Both are very highly regarded in their field. However, my stomach is in knots and my son can feel it. He is not himself today. Although a little tired, he should still be more outgoing, friendlier. Even when exhausted he waves at strangers and smiles toothy grins at old ladies in the supermarket. Today he is in “Michigan J. Frog” mode. Somber, half gazing around him, shoulders slumped. Looking every inch the stereotypical archetype of Down syndrome. I too am going through the motions as I robotically move about this appointment. Wyatt is weighed and measured: 10kg, 70 cm (22lbs, 27.5in). He’s a little heavier in the few weeks since the visit to the pediatrician. We go on to consult with his physician.
History is gathered, Wyatt is assessed. We return briefly to the waiting room before being called in for his echocardiogram. For the first time here, Wyatt is sedated, given a tiny drop of midazolam in some chocolate milk. As it takes effect, he becomes slower and looks drunk. He stayed awake through the entire procedure, calmly gazing around and occasionally focusing on the Dora the explorer tape the sonographer had popped into the overhead TV. We went back to the waiting room one more time, before I was called in to see the results.
As always, the cardiologist played the recording for me. In real time, I watched my son’s tiny heart as it beat within his chest. The ventricular aspect is almost indistinguishable at this point; to my untrained eyes it looks like a simple narrowing in the septum. Two valves opened and closed with each beat; above which the atrial septum was distinctly absent. The beat was strong, regular, steadfast. The back flow through the valve highlighted in colour. “A few stitches” would ease this problem, nothing more. I nodded, smiled appropriately, waiting and attuning myself to his every gesture, his every nuance so that I would not miss or mistake the information that was coming:
Pre-op appointment in 8 months. Surgery, most likely within a year.
It is not bad news, it is not good news. It is news that allows us to breathe again. To plan. To have some kind of idea what the next little while is going to look like. It may seem like an incidental but there are so many things at stake. Vacation time can now be planned and the current accounts that were held back “just in case”, used for their intended purpose (and alleviate my current level of exhaustion). Anniversaries, birthdays, Thanksgiving, Hallowe’en… these events are allowed to exist again. Although their exile was self-created, it is impossible to imagine the future while that blade could fall any minute. It’s still there, but is supported by much stronger stuff. We have a plan. We can do this. This was an important moment; this is one of the moments that allow us to live.
A few days before our trip to the doctor, we were eating dinner in front of the TV and Zoe was doing her best to cruise for tidbits. The night before had been complete hell for both her and us as she was awake and screaming a great deal of it. She has quite a few teeth coming in at once and I have no doubt that her mouth is terribly sore. So much so that her appetite has decreased overall and she is more apt to eat soft squishy things and drink her milk. I’m not adverse to giving the kids food off my plate either as I want them to eat and to experience different flavours and textures. So, she was travelling back and forth between Sean and I and taking bites of our pizza. At one point I made her use her sign for “more” and half jokingly said “say please”. I didn’t get my please, but what I got was even cooler.
She said “Mama!”.
I have been almost torturing her for months with “Mumumum”. My eldest son did not call me “Mum” until he was much older. He was speaking in full sentences by the time I actually got a “Mama” out of him; up until that point he had called me “Lady”. Zoe’s “Mama” was typical of her; sudden, it caught me off guard and was accompanied by a grin that would lead you to believe that she could do this for months but just didn’t feel like it. I tried not to freak out but still scooped her up and danced around the living room a bit while covering her with kisses. It was awesome. All the kids joined in the fun as Wyatt screeched and giggled on the floor nearby while Quinn shouted “woo hoo!”. Truly a banner moment. She has been doing it sporadically since then, but she is aware that it has impact, the little minx.
Nine days later, the babies and I were in the kitchen as I was feeding them dinner, while Sean prepared ours. Wyatt was across from me in his high chair and both babies were babbling away in between courses. At one point he said “um um um” and I smiled at him and said (like I had a million times before) “say Mama”.
So he did.
Not only did he say “Mum mum” but he held up his spread hand and tapped his thumb to his chin, making the sign for mother as well. Suddenly, things got pretty blurry and I was lightheaded as I choked back the scream of delight that would surely have scared the daylights out of him. As it was, I still pounded my feet on the floor and a few tears rolled down my face as I squeaked “He said Mum mum! He said it! AND THE SIGN!” I covered my little guy in kisses as I had his sister; he just laughed at me and reached for his dessert.
These are the moments that you live for as a parent; as a special needs parent, doubly so. We have no room for complacency on Team Logan; each new feat is celebrated to the max, each new skill rewarded. All the sleepless nights, all the fatigue, all the hours of therapy, all the pain is gone in an instant and replaced instead with a supreme joy that I doubt I could explain fully. Imagine a hundred pipe organs exploding into fanfare while fireworks rocket overhead and you will not even be close. These are the moments that make everything worthwhile. These are the moments that make you feel alive.
We will have more moments of note in the near future. Our eldest starts Grade 1 on Tuesday. We will have new words, new signs, new methods of locomotion and expression. There will be more teeth, more texture and more variety to meals. There will also be the sleepless nights, frustration and tears… some of which might actually be from the children.
Moment to moment, it’s more than a simple kitschy philosophy with us. This is our life in Down syndrome Land. There are moments that fortify us and moments that glitter like stars. Instead of shrugging them off, we choose to elevate them, to place them in the sky where they belong. This way, when our path is not so clear, we can refer to them from time to time. We can marvel at these moments as they twinkle jewel-like in the night, we can use them to navigate through the dark. Stars, every one. Just like the three little ones that created these moments in the first place.