A different song

It is a beautiful spring morning. I’m lying in bed being quiet because Patrick is sleeping in and I’m trying to let him. The birds are singing outside my window. And in my kitchen, my cockatiel Max is singing along. He is singing the Andy Griffith song. For some reason, this has caused me quite some reflection this morning. I don’t know how cockatiels sing in the wild. I know that sometimes Max imitates the sparrows outside the window. He used to have the sound of the squeak of our worn out dishwasher perfected, too. But his best and happiest song is the one I taught him to sing. We are human. But we are his flock.

And I’m realizing that just because his song is different because his experience is different, that doesn’t mean that his song is any less happy or any less beautiful than the sparrow’s. In fact, to me it is more beautiful because it comes from our shared experience together.

I sometimes mourn the childhood that Patrick is missing. I wish he could get up in the morning and go to school with the other children. I wish I didn’t feel so inadequate and in over my head trying to fill in the gaps left by this ridiculous system they call “home/hospital education” that assumes that all children who can’t go to school for medical reason must be too sick to devote time to learning. I wish we could go to the places that other people make friends or that our old friends could come to us more often so he didn’t feel lonely.

But just because our world is different, that doesn’t mean our song is any less beautiful or happy. We are happy.

We sleep in, or we don’t. We get up and get Patrick and bath and start a load of laundry because night always gives us a full load to wash. We see daddy off to work with love and silliness. We decide if Max gets to take a shower with me.

Mornings are Patrick’s best independent time so I try to use that time to get things done around the house. Yesterday, it was devoted to precooking the chicken and sauce for chicken parmesan we were making to take to a neighbor for dinner. Patrick played on his tablet and I listened to an audiobook while I puttered around the kitchen. Other days it’s business for me and I’ll submit or review medical claims, call providers and insurance, or schedule appointments.

Then we run any errands that need done. Sometimes that means shopping at the store with kid sized carts where Patrick will run into the backs of my legs a dozen times and get put in a time out in my big cart at least once because he’s gone into total sensory overload and can no longer hear and follow my directions.

We fit in mommy school at some point in the day. Sometimes early. Sometimes late. We practice reading and writing. Sometimes we make a craft. Yesterday because it was St. Patrick’s day we emptied Patrick’s piggy bank and practiced the names of all the coins. And we’ll find some food to count and add and then eat. (Lucky charms marshmellows were a bit hit.)

We take our time eating lunch as its my best feeding therapy time. Patrick gets to pick and I add something to push his limits and we practice taking bites and swallowing together. I was beyond proud yesterday that Patrick actually requested the food we introduced for feeding therapy last week… beef and vegetable soup. And he ate the carrots and potatoes out of it as well as a grilled cheese and 3 handfuls of “oystey” crackers.

Then Patrick will avoid complying with the naptime that he’s spent hours telling me he’s so tired that he will for sure need today. If we’re lucky, the phone doesn’t ring in this time.

Eventually, he’ll take a nap. After months of practice, I’ve finally figured out how to make this one happen without tears and lost tempers. I rub Patrick’s head, but only if he’s lying still and quiet with his eyes closed.

Sometimes, I need to lay with him while he sleeps and I’ll use the time for scripture study. Sometimes I can sneak out of the bed and get things done. If I get out of the bed, he sleeps longer.

Then we’ll make dinner. Patrick is totally into wanting to learn to cook right now. Yesterday, he willingly snapped a whole package of green beans for me. Then he rubbed his eyes because they were tired and they got all red and puffy and I’m wondering if I can let him snap beans again. Other times he helps me measure and pour ingredients.

Brian gets home earlier now than he used to, which is nice. We’ll have dinner and then the evening is usually devoted to quiet family time. Patrick will watch a show while I clean up the kitchen and make formula.

I’ve learned that he medications make his belly move so we’ve started to give some of them a bit earlier so Patrick won’t be calling me to change his diaper half an hour after going to bed. That’s ok. Sometimes that waiting time can even be story and cuddle time.

And then Brian and I usually get a little bit of time together before we go to bed ourselves.

Patrick and I are starting to really enjoy each other. We are working together better than I remember ever before in the past. I really think his ADHD and sensory issues, though sometimes aggravated by the steroids, are less pronounced since transplant. (Perhaps because his nutrition is better or because he feels better or just because this whole experience made us all grow up.)

Yesterday I tried to explain the rules of St. Patrick’s Day to Patrick. Only he got all caught up in the pinching part and missed when and why. In fact, he became convinced that he needed to pinch everything green all day. Especially me. Pinching back 7 times only reinforced the fun and we had a silly giggly day of pinching each other all day long.

So its a different song. And I think there will always be times that I wish we were sparrows. But that doesn’t make our song any less happy or any less beautiful.