The sun is too low on the horizon for 2 pm. I've only put out my green garden waste twice since summer began. Time is flying and my legs are tired from chasing it.
Rukai is up in his bed, fighting the nap again, keeping company with the warm yellow orb on the base of the monitor which tells me all is well and right with him even though he is not beside me. He is snoring. I am head over heels in love with that sound.
We are here on the other half of his first year. He has filled his belly up these past few weeks on baby rice and carrots and yogurt and peas and avocado and decorated his bibs with color like he once decorated his sleepsuits from the other end. He has tried juice and puckered appropriately. He does not have any trouble eating. For a child with Down's syndrome, this is a triumph. For us, this is one more worry off the list. Strong mouth = hope for clear speech. We live on hope these days. I have tried hope with chocolate syrup, dunked in a cup of tea and grilled with mushrooms. Hope tastes good. Just like carrots.
I have now added to the dishwashing three spoons and a monkey bowl, plus one green sippy cup that we'll be replacing with a free flow because I'm so paranoid about that little tongue of his getting too used to being out instead of in. This is the reality. As I revel in the first bit, I am bound by the second. I have never felt so emotionally divided.
To think I was worried about whether he'd somehow end up with red hair a year ago makes me feel like an ass. I didn't want his life to be hard because of bullying like mine was. How trivial that seems now. How hard his life is going to be anyway. How much extra work will he need just to try and keep up. How serious we have all become. How hard I am working on maintaining the lightness inside when life sometimes feels so damn heavy these days.
Ah but how much is he the source of that light. How much is modern medicine the heavy. The fat. The big black bear in the forest of 'what if' trying every day to take a chunk out of my heart. This life is hard. I did not ask for this life. But I did ask for my son. So part of this life was indeed on the request list.
I love him so much it hurts.
I compare the Rukai who came to us vs the Rukai we were expecting with a music playlist I made for him before he was born. The list I replayed for months on my iPod, an iPod which I lost just before that amazing day we finally met him. The playlist, too, was called Rukai. I was more upset about losing the playlist than losing the iPod because the playlist was the music that defined my thoughts for him throughout my pregnancy. My worries for him. My hopes for him. It was optimistic and dead certain he would be 100% healthy which we now know is only true to us. The doctors would have us believe differently. Society will support the doctors.
This is the reality.
I was going to make a copy of the music on that playlist and give it to him on an appropriate electronic device on an appropriate birthday. Tell him how I was feeling when I made it. Watch him make faces at those old songs mom used to listen to.
When I finally figured out how to replace the playlist, I re-created it on a new iPod so I could have it in the hospital when he was born. I picked the same songs from the same music folder on the same PC. And wouldn't you know, it somehow turned out different than it was the first time. Different versions of the same songs somehow found their way into the list. It wasn't the same as I expected.
And in all honesty - because what is the point of sharing if not with honesty - lo and behold, neither was he. And instead of the playlist rolling while I was in labor, we had an endless loop of Adele's Rolling in the Deep as I recovered from a cesarean, watching him asleep in that hot box, agonizing in wait for the result of that blood test. It just fit. '...Finally I can see you crystal clear.' Oh yes.
I will still give him the playlist. He is still our Rukai.
But still, these six months we have ridden a rollercoaster. We buckled up on the ride called Optimism and somehow have found ourselves careening up and down hills called Reality. If 'rollercoaster' is not one of the states of grieving, it damn well should be. And it is true grief that I feel on the dark days. But why am I racked with sobs some days? What exactly am I grieving over? It feels foolish sometimes. But that alone does not make it hurt any less, as desperately as I wish it did.
I read something yesterday about how parents of children with disabilities must let go of the child they expected and come to grips with the child they have been given. (Dare I say as something of an agnostic, blessed with.) But not only do I not currently consider him disabled, but I find the idea of 'letting go' of any version of our Rukai just downright cold. Because diagnosis aside, Rukai really IS exactly the child we expected.
I think we are fortunate to have Rukai as our first and quite probably only child, because everything he does is 'normal' to us. We look at him and see Rukai. We don't look at him and see any different from any other six month old on the planet. I am by no means cheerleading or saying 'look at how great we are dealing with his diagnosis' because I still very much rail against it right now. And if that is denial, call me Cleopatra. Buy me some snakes and a ton of gold baubles and build my ass a pyramid.
But I am saying once again, 'what is normal?' Some days asking that question is the only thing that keeps me going, aside from the 24 carat grin of my precious squidge. I live for that grin. And I live with that question. I burn with it.
Heavy heavy days and this rollercoaster seems endless.
Yet today after what seemed an eternal wait, he rolled over and I was bowled over. I cried through my ear to ear grin. I grabbed his hands and hooray-ed and scooped him up and gave him a million dollar cuddle. Rollercoaster or not, so we will ride.
We came. We saw. We conquered. Maybe not DS, but we sure as hell can destroy a monkey bowl full of pureed peaches. And today that will have to be enough.