Cancer · Chemo Dad · Chemo mom · Childhood Cancer · Family · Histiocytosis · Love · Uncategorized

Five Things the Parents of a Child with a Chronic Illness NEED TO HEAR

Since my daughter was diagnosed with liver failure and then cancer, I have heard it all.  I can give you a long list of things not to say to a parent with a sick or chronically ill child, but that would be exhausting and wouldn’t nearly cover it all.  These lists are all over the internet, so if you want them, just google.  I have heard them over and over so much that they run together and who said them and what was said is blurred.

But I don’t want to dwell on the negative anyways.   What I do want to give you are five things I heard over the last eight years that stopped my heart and brought me peace or joy.  I can tell you where I was when I heard them.  I can tell you who said them.  I can describe the look on the speaker’s face and the way my chest swelled or ached from the sound of those words.  These were bridges actively built TO me at a time when I couldn’t build anything more than a fort around me and my kid.  So sit down, get out a pen, and write these down.  Us parents of chronically ill kids NEED to hear these things, and you can be that person to make life better for us.

  • “I’m not going anywhere.”   I swear, this is the single most powerful thing a mom or dad with a sick child needs to hear.   The initial diagnosis will bring “helpers” out of the woodwork, but the minute anything actually becomes difficult or you DO need help, people run for the hills like their hair is on fire.  To have someone sit with you when you are angry and crying and lost and feel hopeless and have that person turn to you and say “I’m not going anywhere,” it’s like being given a lifeline in a storm.  But if you are going to say it to someone, you damn well better mean it and NOT go anywhere.   My best friend said this to me.   And I will forever love her for it.  She didn’t go anywhere.
  • “I love you (or her, referring to my child), so what do you need to make this easier?” This person is a doer.  He or she will talk to doctors and nurses for you.  Will call pharmaceutical companies and run fundraising.  And this person is doing it out of LOVE.  Not an obligation or to look good or a mission from God or some crap like that.  This person took a look at your fear and your child’s pain and said “I’m going to do something to fix that.”  And he or she will.   And once the storm has passed, any passing cloud that might be the storm returning will have this person calling and checking on you and jumping back in that “doer” position and doing things all over again.  Thank you Mom and Dad.   Very few people would have done what you did.
  • “You are an amazing mom (or dad).” Then follow that statement up with something you think was cool. Because it can just sound like it’s placating unless you actually mean it.  And don’t say it unless you believe it.  Because we question this.  Daily. Hourly.  Did we make the right choice?  Are we doing this right?  Are we hiding them from the world too much?  Are we exposing them too much?  Are they going to look back at their childhood and see misery?  Are they going to be ABLE To look back at their childhood?  Lord, the doubts and fears that come with raising a child with a chronic illness or a medically fragile child….  I have nightmares to this day about it.  I mean, parenting is hard enough without throwing in an illness and medication and therapies and evaluations…  So this one sentence can make my WEEK.   It can make me feel like I’m not messing everything up.
  • “Your kid is incredible.” I know she’s incredible.  But I fear for her when she’s older.  I fear that people won’t see the bad@$$ that kicked cancer’s ass.  I fear that they won’t notice the little girl that has strict limitations and doesn’t let it bother her.  I know they won’t know that when we had the “your liver might be getting sick again talk during a 3 mile walk a week ago, her response was “That’s okay.  Best case scenario, I stay like I am and don’t get a liver transplant, but can’t ride horses or rollerskate, which sucks, but I can deal with that.  Worst case scenario, I get a new liver and it hurts for a little while, but I an eventually ride horses and roller skate.”  That’s my kid, people.  She looked at the liver transplant possibility and went “Okay…  there’s a silver lining to that also…”  I see the incredible kid. She’s a Damn Rock Star.  But you validating that for me, knowing that it’s out there and others recognize it and maybe her life won’t be full of ridicule and judgement, that gives me hope.  One of the other chemo moms I adore says this about my daughter.  And her son is incredible too, seriously… he’s so cool I have him reserved for Sophie to marry when she grows up.  Us mothers have agreed to it.
  • “It will get better.”  It does.  I know this after 8 years of being in the pile of $hi+ and wondering if there was an out, and then it gets better.  But sometimes it’s hard to remember that it gets better and we need to hear it from someone else.  When it gets bad or we get overwhelmed.  This one is vital because we forget that it gets better.  So please, feel free to remind us.

These are statements of support.  These are words of power.  And we need them.

Honestly, though, I think ALL parents need to hear these things sometimes.   When you have a newborn, it DOES get better.   And your kids ARE incredible.   And I’m NOT going anywhere.  These are important things.  So please feel free to share the encouragement.  Being a parent is HARD, and having that child suffer is hell on earth.  So write them down and say them to someone you love.

Image courtesy of lkunl at FreeDigitalPhotos.net

 

 

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