Being the mother of a child with Cystic Fibrosis (two children, actually) provides a unique perspective on life, love and all things medical. Our daughter has been admitted to the hospital recently and it’s been one of those moments when clarity happens and you realize that there are 5 things you learn when your child is in the hospital:

  1. YOU ARE A UNICORN IN YOUR SOCIAL CIRCLES.  When your child is in the hospital for 2 weeks, the number one thing people say to you is “I don’t know how you do it. I couldn’t do it.”   Every time someone says this to me I want to look at them and say, “Really? You couldn’t put your child first in life? You couldn’t stop to give them the spotlight for just a moment in time? REALLY?”  But, I don’t.  Because I get it. No one knows what to say. No one knows how to react to our normal reality. No one understands because they don’t have to.  Which makes the whole experience an extremely lonely place to be.

    Tip for our friends: Don’t say this.  Just ask about the child and how he/she is doing. I promise that the moms love to talk medical stuff because it’s much easier than dealing with your emotions on top of everything. 

  2. THE BATTLE IS YOURS AND YOURS ALONE. Friends call you in the first few days… “How are you?”  “What do you need?”  “What can we do?”  “We’re coming to visit.”  And then of course life takes over, they forget all about you and move on with their dailies because this is not their reality.  If I was a bitter person, this would upset me, but truly I understand.  A friends child gets cancer and the diagnosis stays in our awareness for a period of time – worried and sad – but then distraction kicks in and because it’s not our battle, we move on – remembering to be sad every now and again, but moving on nonetheless. It’s the same with Cystic Fibrosis. As the mom, I never really move on or find that distraction. The battle is real and present for me – but I can’t be mad at the people who can’t understand.

     Tip for our friends:  Stay in touch, but wait a bit to visit.  Most visits happen in the beginning of a hospital stay and almost none at the end.

  3. YOU ARE STRONGER THAN EVERYONE.  You know that quote, “You never know how strong you are until strength is the only choice?”  Most people in your circles have zero concept of what true strength looks like. They think that strength is dealing with a nagging mother in law, or a fight with a friend, or an argument with their husband… or the occasional illness that dislodges them from their reality for 5 days and heaven forbid they should go an entire weekend without a glass of wine. When you’re the mom of a sick child, strength means something entirely different to you, and it’s one of those things that your fellow human beings will not understand until they live it.  As the mom of a sick child, I know you pray every day that they never have to live it.

    Tip for our friends: When you’re talking to a friend who’s child is chronically or terminally ill, remember that their perspective on all things is VERY different than yours. When you make fun of a dad for his overbearing nature, make sure you take a minute to remember that his daughter’s life expectancy is 30 and he’s doing the best he can.

  4. PEOPLE ASSUME THE WORST. I had a friend say to me yesterday “I don’t know how you’re so calm, much less laughing and smiling.”  I wanted to burst out laughing at her, because I know somewhere in her mind, she’s thinking “This is it. I’m going to have to attend a child’s funeral.”  Sad news for the “worst case scenario” mind: my child is not dying today.  My child needs joy, not sadness. She needs support and strength, not obsessive worry.  She needs me to be who I am in the face of something hard because that is how SHE learns to be strong and true to herself in the face of something hard. What people see from the outside is tubes, needles, medications, hospitals, sadness and fear.  What’s real is this:  A teenage girl who heard that she was going into the hospital for 2 weeks and within 4 minutes found the silver lining.  (Binge watching Gilmore Girls on netflix)  The tubes, medications and procedures are fleeting- less than an hour a day.  Which leaves 23 hours a day to laugh, find joy, and be together.  Even if it is in a beeping room with constant intrusions by the nicest people in America.

    Tip for our friends: Don’t be afraid to laugh and be normal. Tell your stories, be real and don’t tiptoe.  

  5. THE SILVER LINING IS REAL, AND OK.  It’s ok to hear that your child is going to be cooped up for 2 weeks and secretly get excited about the prospect of holing up with her and reading an actual book. It’s ok to see the silver lining in the bad situation.  I promise.  We have two weeks in a room that our daughter cannot leave (germs) and our silver linings:  Reading books.  Bonding with our teen.  Taking a moment to spend time as a family.  Playing games and laughing.  Spending Thanksgiving in the hospital so we don’t have to spend Christmas in the hospital.  Time to focus on our hobbies and do some of those things that we need time to do – like: write the first chapter of my book, plan my upcoming podcast, work on my business, do some yoga.  Moms feel so guilty when they see the good in the bad.  The car crash that was awful, but had the side effect of getting that person off of drugs.  The sudden flu that got you out of dinner with Aunt Jane the pervert. Find the good in the bad. I promise, it’s ok and it’s what your family needs you to do.

    Tip for our friends: Do not voice what you perceive to be the silver linings in this situation.  We know our silver linings and most likely yours are not the same.  Just keep that piece to yourself.

I would put some cute little catchy, wordy ending here, but my reality is that I have to do a load of laundry, pack up some snacks, an overnight bag and get my ass to a quarantine room at the hospital.  My daughter and I have some Netflix to watch, nurses to get to know and Black Friday shopping to plan for (online, of course).

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