Posts tagged kids

Note: I originally published this back in November on a different blog, but recently, well, it just makes sense to re-publish it here.

This started out being titled “Is Cancer winning?” because sometimes it feels that way. It really does. I mean big time. Is it winning? Only if we let it.

I have dear friends, and now family members, suffering from the effects of cancer. It seems everyone knows someone or is related to someone, or … ok, that’s just obvious.

Maybe I’m just wondering why it’s showing up so much in my life lately. And by “my life” I mean peripherally. Not directly. In some ways that would be worse. In some ways? I don’t know. Being so indirectly connected to it, yet being so directly affected by it, makes it harder, for me, to deal with in some ways.

I always want to help the ones I know and love, no matter what their situation is. But with this? All I can do — the best that I can do — most of the time, is stand helplessly by.

You say “call if there is anything I can do.” Are they not calling because there is nothing I can do? Or because they are so overwhelmed with the day to day dealings, the appointment, the prescriptions, the dashing back and forth, dealing with the insurance companies that want nothing more than to find a way not to pay for any of it, that there is no way to stop for five seconds and think what someone else can do.

I know that feeling. I know it very well. I have lived it, on and off, for the past 12 years. People said it to me when my son was in the Neonatal Intensive Care Unit for weeks without end. But it was all I could do to keep myself fed and (sometimes) showered, taking shifts by his bed. And then the dozens and dozens and dozens of hospitalizations, trips to the ER, weeks in the Pediatric ICU, surgeries, etc. over the years. It is overwhelming. Stupefying. Each time.

The most frightening thing of all? What you can get used to. What becomes normal. I could do a sterile pediatric deep trach suction and not even wake up. Most of you don’t even know what that is. I can change a G-Tube when it pops out — and the catheter balloon burst — while boarding a plane with another toddler in tow. By. My. Self. I can change a Trach in under 30 seconds. All that was normal to me.

One of the parent support email lists I am on (I’m admittedly probably on too many) talked at great length about how parents of kids like mine almost always suffer from (undiagnosed) PTSD. For some of us there is no ‘Post’ about it. When the trauma is never ending, there is no ‘Post.’ But you learn not to panic. It takes a lot to make me panic now.

I can only imagine that this is what my friends and family are going through as well. It’s not the same but it is. And there is no training course for it. There is no preparation you can ever do. There is no way to ready yourself, or steady yourself, or do anything but withstand the utter onslaught of it all.

I had a conversation tonight about “what if it were your son or daughter that had cancer?” The answer is obvious: You do anything and everything for your child. You let no one stand in your way. It toughens you in ways you cannot imagine beforehand. It becomes all about what your child needs. No matter how old your child is. 3 or 30, 4 or 40, it makes no difference. Except if they are 30, or 40, you can ask them what they need, what they want, and honor those wishes, meet those needs as best you can. And anyone that detracts from those needs? That is in any way “in the way?” Toast. It’s not about anyone else. Or anyone else’s needs, or wants, or desires.

During that conversation, and for the first time in years and years and years, I couldn’t help but cry. Because I already know how all of that feels. It wasn’t cancer, but I know. The fear, the helplessness, the desperation. The ferocity of love.

I still want to help. But maybe the best I can do is just stand over here and try not to get in the way. But if anyone needs me, you know where I am. And you have no idea of what I am capable. More importantly, of what YOU are capable, when the time comes and the need arises. But if you need someone to stand next to you … Or to pick you back up off the floor, again … Or, as my dear neighbors so aptly put it, just to hold the bucket while you let it all out. I’m right here.

Adding: This saying keeps coming to me lately in various ways: You entered this world crying, while those around you smiled. May you leave this world smiling, while those around you cry.