Why some people think it is okay to ask me this question I'll never know. Sometimes they even make it into a statement (add long, serious face), "Oh, I don't know HOW you do it." Which sounds even worse because it is laced with pity.
The HOW is not as easy to answer as the WHY. Here is my stock answer: "I'm his mother. I just do it."
You see, it's so simple, it's complicated. But an answer like that just gets you a dumbfounded stare. It seems that some people want a genuine "How To" or a gritty story of survival.
I suppose I could say one of the first things that pops into my head which is, "you would too," or "any mother would," but that wouldn't necessarily be true. One of the saddest things to me while inpatient is to walk past rooms in the PICU with the sickest babies all alone day after day. It broke my heart that no one was there to comfort them, to be with them, to hold them.
One day I finally asked a nurse about it. She sighed a deep, heavy sigh and said, "you may not see some parents because they live far and cannot be here daily, or maybe they have other small children at home, the weekends are busier. But some, most are court ordered NOT to be here." Oh. My.
Meanwhile, here I was twisting myself into a pretzel between work, home and the hospital, just so my three-month-old son could see me before he fell asleep every night. And in the next room lay a baby with not one visitor the entire month we were there. I cannot tell you how many times I was tempted to go in and pick that baby up.
I cannot, in my wildest dreams, imagine walking away from my child because his life is "complicated." Yet, across this country every day there are abandoned, neglected and abused children, so clearly some mothers don't "just do it." Sometimes their children are not even ill, they just chose not to.
So, yes, I do it because I choose to. I do it because he is my son and because I love him. I do it because ethically, morally and responsibly everything in ME tells me it is the right thing to do. That may not be enough for someone else, but it is for me.
As to the HOW, it is really by the grace of God. I can't explain where the drive comes from, except to say it is the constant push to keep my child thriving that motivates me. There is no official "how-to-survive-raising-a-special-needs-child" manual. We simply live it and write a new chapter each day.
Janis chronicles her son's life and medical journey at Sneak Peek At Me. She is a special needs advocate for children who are medically fragile and families with a rare disease diagnosis. You can also find her on Facebook, Kidz and 5minutesforspecialneeds.
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