Battleships

(pics by Kristina on her phone)

On battleships. Ah, the storms you weather! Literally and figuratively. The hurricanes, Wilma, Katrina, Rita and her cronies, living without power, damage. The recession that kicked in in Florida about 4 years ago, the house sale for exactly half the original price. The 6 years of infertility and procedures, the abdominal surgery, the 7 intensive fertility treatments, the shocking life changing diagnosis of CHARGE, the harrowing months of intensive care, the pain you feel for your friends in similar circumstances, our boy's 10 surgeries, the miscarriage. The ongoing extraordinary daily challenges of teaching Reuben to eat with his mouth, breathe through his nose and mouth, walk, talk, sign against a quite crushing financial backdrop. You think you’ve weathered it all. There are of course some other of life’s greatest challenges that haven’t made it to our list. Yet.

And then, a huge explosion! You are blown entirely out of the water. 20 years. 20 years without so much as a handshake, never mind golden. Did that count for anything at all? The car, the phone, the computer. They go. There is no notice, you are just drowning in the awful surprise. And so you think, eh, where do we go from here? You're stuck in the middle of the Atlantic Ocean between the US and the UK and can only swim with what you can actually carry on your back, the rest you have to leave behind. Where exactly is home now? There are so many people who have offered true help and support in the past, so full of compassion and real help financially when things were very very bad. And then there are entities where there is zero compassion. So what now of the uncertain future? How ugly to do something without warning knowing the awful consequences it will have on a child who is learning one foreign language, ASL, but will likely be having to learn another in a few weeks. Hadn’t really seen the need to learn both side by side. Totally hung out high and dry.

Next week we leave for a vacation in the UK, our first holiday in a year. Jason has worked pretty much every public holiday in the last and has yet to take a vacation. There's an awful lot of accrued leave. For what. Perhaps we’ll be staying on there with the boys and the black suits will be coming back out from the back of the closet. Today I was videoing our boys at school at Circle Time, deliriously content, and I happened to look round to see Jason standing at the door. That’s unusual. Ah, he’s coming along to be in the video, how very sweet. He’s sitting down holding Reuben, not quite himself. That’s strange. Into the conference room. I have some news. Two options running through my head so I chose the least devastating of the two and I am right. I know. I feel a painful empathy for Jason, but he feels worn out, not upset.

After Circle Time with Jason gone, I sit on the grass with Callum and look around at the beautiful bougainvillea and breathe in the jasmine as if it were the last time, so bitterly poignant, like the last taste of summer, and then return to Reuben’s beloved school, that which has given him the most extraordinary leap forward with his socialisation skills, in whose environment he trusts. It feels now as if he is going to be betrayed. And then I step back inside and watch Reuben from the Observation Room, playing with the teacher, happy and loved. You can never plan for anything in the future, never keep a steady float without taking in huge gulps of putrid salty water when you just keep getting blown sky high by the bombing. Tears are welling up in the Observation Room because I suddenly feel, wow, will Monday be the last time he comes here? Oh my God!

Yet for now, I have to put all this beside me, get us all in the car, drive an hour across town to Children's, don a lead vest to protect me from exactly the radioactive material I then have to feed Reuben whilst watching a video of Reuben, a moving skeleton with glasses and with little black blobs of said radioactive material shooting down his esophagus, to make sure he's swallowing without aspiration. Which he does.