Conduits of Care

The thing about being a parent of a chronically ill kid is that I am a storehouse of otherwise useless information.

How many milliliters are in a teaspoon?  Five.

Pizza needs two doses of insulin because of the grease, it outlasts the first dose.

Blood pressure is best checked first thing in the morning.

The only way you’ll know how much cereal your kid eats is by having a measuring cup in the cereal container. At. All.  Times.

Sanitizer is easier on the hands if it has added emollients.

One of the things I know a lot about is what we really appreciated when Wendy was sick by the people who loved us, what to do, what to  say, how to show that you care.  People often ask me for advice on this topic when they have friends who have kids in the hospital.  They wonder what they can do that is both helpful and meaningful to the family going through the crisis.  I LOVE that I can be helpful in this way, and I love that my friends think of me as the person to ask when they want to be kind and giving.  I am a conduit of care!  (So are you.)   I thought that I’d write a few things here for everyone, but I encourage you to still ask me if you have questions.  That’s what I’m here for.

Anything you do, big or small, will be appreciated.  The family going through crisis will appreciate any small effort you make to show you care.

Having said that, some actions are more helpful than others.  I break these down into two camps:  survival and comfort.  There are things you need no matter what, and then there are things that will make you feel better emotionally. Both things are important, but for some reason more people like to focus on the latter.  Let me explain:

Survival.  In terms of survival, the family in crisis has an extraordinary circumstance:  a sick kid, a hospital trip, a scary diagnosis, a prolonged illness, you get the picture.  Yet, they still have all of the added stresses of normal, everyday, average life.  When we were in the hospital for prolonged periods of time, often leaving in an emergency, we left our cats and our plants, food in the refrigerator, a house with a lawn, etc.  Then we drove four hours away and often stayed weeks at a time.  When your kid is in the hospital, you tend to forget these things, but they still exist.  We had wonderful neighbors who first would come and feed the cats and then took them home with them, along with the plants. They took turns cutting our lawn when it got too high.  The local vocational school where I worked had students come who raked and bagged our leaves in the fall. Neighbors shoveled our walkway to the front door when the snow fell throughout the winter.  They took care of our normal problems.  We even had friends who came in and cleaned the house, changed the sheets, and put the basics in the fridge when we returned.  Every time.

Then there are gift cards that are helpful, both for gas and for food.  Don’t underestimate how helpful a gas card is to a family that has to make multiple trips to the doctor.  Don’t underestimate the Starbucks card for a parent that has spent a lot of time awake around the clock.  Even a gift card to a CVS or a Rite Aid, or some other pharmacy is a help.  These are incredibly bolstering for a family in need, and keep them afloat both financially and emotionally.  My cousin came to visit us in the hospital and then walked around and bought gift cards to all of the local restaurants, including the Whole Foods and the bagel shop, knowing that eating was necessary.

Making meals for the people at home is a great idea, but keep it simple, keep it organized.  There are services you can organize through online like meal train that will help you and your neighbors coordinate who is bringing what.  To me, there is nothing more healing than sitting down with my family like it’s a normal day, even when the day has broken open and all Hell is loose.  Having a time to sit together and have a meal is incredible.  It gives you hope that someday, everyday will be normal.

Maybe that means that food gives hope.   It also gives comfort.  Which brings us to our next category:

Comfort.  This is a tough one and it’s hard for me to give good, concrete examples because everyone is different.  When the family is in the hospital, something like a blanket or a fun pillowcase for the sick child is really worthwhile.  We still have those no-sew-throws that some family members made for Wendy.  A robe and slippers if they don’t have one helps with the awkward walk to and from the bathroom.  Do not send stuffed animals, even though it’s so very tempting.  They just take up room and collect germs.

Another idea, if the child is going to be in the hospital or recuperating for a while, is new things to entertain them, not necessarily board games because they can be awkward in the hospital.  One friend brought us a balloon animal kit which was a huge hit, and another friend brought a game that involved a large die, plastic bugs with velcro, and felt “sleeves” we had to wear.  We also got the game “Pretty Pretty Princess” and if you’ve never seen it, it’s worth a look.  The idea is that you spin a spinner and receive a different piece of plastic jewelry, whoever gets all of the pieces first wins.  This is especially amusing when your husband plays, and wins.

I always appreciated a good book, but keep in mind who your audience is.  I was given the book “Eat, Pray, Love”, a book about a woman who was in a loveless marriage and had to find herself by going around the world, eating in Italy, praying in India, and falling in love.  This might have been a book for me at some other time of my life, but when I was sitting next to my daughter who was on a ventilator and more medical pumps than could fit on one stand, I had a hard time relating to this woman who seemed to have everything but was unhappy anyway, which is clearly not the point of the book.

As Michael took the night shift with Wendy in the hospital, he read multiple chapters of Harry Potter to Wendy as their evening ritual before she went to “bed.”  When Wendy isn’t feeling good even to this day, she loves to be read to.

Once the dust has cleared and the family in crisis is home, offering to watch the kids for an evening so the couple can go to a movie or get a massage, that is huge and again helps to make the mom and dad feel like things are going back to normal.

Don’t be afraid to jump in and help!  Lots of times the family doesn’t even know what they need, so don’t be shy about offering.  I love to bring a meal and sit and talk for a while, or more importantly, I like to sit and LISTEN.  Lots of time, people just want a new person to talk to, to unload on, to cry to.  Be prepared to listen.  I often think, overall, that just being there and listening is the best thing I can do for friends and family in crisis.

These are all exercises in grace, where you give without expectation of return, or even thanks.  Don’t worry, they really really are grateful for what you do, they may be too embarrassed to say it, or to say the depth of which they feel the gratitude.  Sometimes “thanks” is all they can get out when what they really mean is “Thank you for being there for me, for taking care of me, for letting me be myself for a few moments.  Thank you for not forgetting me, shunning me, leaving me to worry  through this whole mess by myself.  Thank you for taking care of the little things so they don’t multiply, all of the things I had to let go of to take care of my sick child and keep my sanity.  Thank you from the bottom of my heart.”

That’s what they mean to say, I promise.  I’ve been there.

Photo:  Lasagna, my favorite.  🙂

 

 

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