That is a question that I get often. The question is related to the care I give my son Jacob. The truth is that administering meds, managing seizures, deep suctioning, making sure Jacob is breathing alright, carrying Jacob, giving him IV antibiotics, fighting for Jacob with the school system or whatever the day brings is not such a big deal. It might be in that particular moment, but not in the big picture. It is our normal, and we all have a normal where we are comfortable. Our normal is just very different than most people’s normal. You need to be mentally and physically strong, and a very good multi-tasker with a big positive attitude to master our normal.
And then there are the emergency times. The times when you know that you are leaving your “normal”, and entering territory “emergency”. Times when you know that you can’t take care of Jacob by yourself. Times when you know that a 911 call is the only right thing to do in that moment after having exhausted Jacob’s seizure plan that lasts over 60 minutes of home care. Times when Jacob’s breathing is impacted. Times when you don’t have enough hands to do all the things that need to be done. Seconds being your measurement of time.
I will never get used to “emergency” times. I will never get used to hearing the sirens down the street knowing that they are on their way for my son. I will never get used to the lump in my stomach when I am scared shitless of Jacob’s breathing. I will never get used to seizures. I will never get used to breathing issues. Never.
At the same time, I will make that 911 call every time Jacob needs it. I will be by his side whenever he needs me. I will be his advocate every time he needs it, no matter how sleep deprived or exhausted I might be.
And the very simple answer to the question “how do you do it” is that this is my life, and I have found happiness in it. But the day when I can’t walk into Jacob’s room in the morning any longer, and look at this absolutely stunningly beautiful boy in his bed, then you should ask me how do I do it? My answer will be that I don’t know.
We’re home tonight again after another very long seizure that caused Jacob to have breathing issues. We had to call 911 once again, and spent the evening in the ER. We will see what tomorrow brings.