Maybe this is all just some big nightmare, a bad dream I will wake up out of one morning. And my sweet little boy will look up at me, and this will all be in the past. The rain will go away, the storms will end. The sun will shine…
That morning. I dream of that morning. I dream of waking up and not having the cloud looming overhead. Of not worrying about the next torrential downpour, the next hurricane…the next tornado that’s going to come out of nowhere and rip up my life and tear it into shreds.
I don’t even know how to explain it. The things that used to be important are no longer there. I care about nothing except a laser focus to get my son well. I see everyone – I know you are there. But for me, time has stopped. It’s like a bubble – and the only thing that matters is Alex.
We’re existing. Right now, Cleon and I can only focus on working, doctors appointments, therapies, meeting new doctors, rehab specialists, more doctors, more therapies, research studies, never-ending paperwork, navigating systems of people to find additional support, phone calls, voicemails, medications, dosages, schedules, emails, ER visits, hospital stays…and a whole lot of staying up until all hours of the night researching the next medicine or drug they want to put our son on…the specialist who may help make him better or the best hospital to drive to so maybe something crazy will happen and we will find a miracle drug/doctor/hospital/team/surgeon.
And I’m tired. So, so tired.
To those who have reached out, thank you.
To those of you who have said “Let me know what I can do to help.” Just know, I answer so many questions on any given day, and there are 850 other things going through my mind than what you are thinking about today. And I just can’t answer another question. I can’t even THINK of what I need because there is so much to think about. There is so much to do, I don’t know how to ask you for one thing. I don’t know how to divide it into sizeable chunks that will support us and get us through this.
So instead of saying “Let me know….” maybe you can just go ahead and do the thing that you’re thinking of doing. Because, I just can’t.
I can only focus on the storm, the rain…the pain. Until my baby is well again, there is just not enough time for the rest of it.