Tonight, a little boy laid his head on my shoulder, clinging to his blanket, and I sang our song to him. Baby Mine, in case you're wondering. I kissed him over and over and put him to bed. He would've let me hold him like that until he fell asleep. I would've liked to have stayed there willing tomorrow to not come.
It seems in the fight to be heard, to have things recognized, and for doctors to affirm things, we have reached the pinnacle. Tomorrow, we sit down with a geneticist and go over all the things. In reality, it's an appointment that sucks for the simple fact that the whole focus is on all of the things that are wrong. Not only the things you know, but they start pointing out the way the ears rotate, and before you know it, you're certain that your kid doesn't have a single body part that came out right.
But, it also means my fight finally landed us where I knew we needed to be. And, I want nothing more than to move back and be wrong. To be the crazy mom that so many suspected me of being.
Tonight, I sit here wondering how we ended up in this place. It seems a little more like the stories you read in a magazine, where despite all the hardships, it ends super upbeat, with a picture of the family making cookies together and laughing in the kitchen.
But, we live in the next part, where you fade out, everyone loses their plastic smiles, sigh with relief, and get back to life. The kind where you accidently give your son, your daughter's thyroid meds and call poison control. Then, you wonder, how God saw you as the person fit to be the parent of three kids with special needs because you can't even give the right kid the right medicine.
Sometimes, right before big hard things, like surgeries, testing, or appointments where I think we might get bad news, I fantasize that we run off to a tropical island together, and live worry free. No doctors. No therapies. And, certainly no diagnoses. Then my stupid brain goes, 'but if you didn't go to the doctor, Shilo would die because she needs seizure meds and thyroid meds.' Not even my brain will let me be irresponsible for a few minutes.
The big hard truth of this summer is I had hopes of doing all the fun things with Abigail since she goes to a school now. But, thus far, Shilo has had surgery, we've had tons of appointments, and therapies, and Asher has had multiple test. We have scheduled his spinal cord surgery for August. And, I'm trying to squeeze all of our big summer bucket list items into the last two weeks.
Tomorrow, I'll put on my brave girl face. I'll ask all the questions, and use all the big fancy medical words so everyone knows that I know what I'm talking about. And, I'll pretend like I expected whatever it is that he tells us. I'll nurse Asher, we'll get in the car to go home, and he'll fall asleep. I'll cry. Jason will hold my hand and say, 'how you doing, mama?' Then we'll pick up our other kids, and get back to life.
At bedtime, my little boy will lay his head on my shoulder while he clings to his blanket. I'll sing him our song, and will the day not to end. I'll lay him down, and he'll fall asleep. It will be as if nothing changed, and everything changed, in one day.