You are busy running your life- juggling work, kids, house, all of it and you find out your friend- someone in your inner circle- has a sick child and in the hospital.
Hmm, that’s not good. You make dinner.
Facebook Post, 8:00 PM: “They don’t know what’s wrong, but it’s serious. They can’t get the fever down. He is throwing up.”
You do the dishes. Tell your wife. Watch Netflix. Go to bed.
Facebook Post, 6:30AM: “ER Doc at Bryn Mawr Hospital said to take him to CHOP. They don’t know what’s wrong.”
You ask your wife if she has heard anything. No? Well sounds pretty scary but CHOP’s a great place, they will figure it out.
Facebook Post, 11:30AM: “CT Scan showed a tumor- we are going to see a surgeon.”
You put your coffee down and start making phone calls.
You: “What is going on?”
Friend 2: “I don’t know- he had that fever- infection, now tumor? Let me call Friend 3”
You: “Alright, I’m jammed at work. Let me know.”
Friend 3: “He is in surgery, no news. Can someone p/u their daughter from school, make dinner, bring to Girl Scout Meeting?”
You: “Sure, we can do that. But, where does she sleep and now what?”
NOW WHAT?
Sound familiar? This was our story three years ago, only we were the ones at CHOP with Thomas, our seven year old son. We spent over 60 nights inpatient. Hannah was nine and that night was the first of many she spent at friends home’s for school night sleepovers.
I’m only guessing at what our friends might have gone through those first days. One thing for sure: they all wanted to help- because they are giving, loving people and wanted to support us in any way possible.
Just like you. After all you are Team CMMD’ers.
So I thought I would list some pros/cons of the help we received- and some suggestions that you may not have thought of to help your friend dealing with the unthinkable:
1. Don’t do the old “Let me know what I can do”.
Because they will not let you know. Nothing now matters to them except for trying to decipher exactly what the physicians are saying, and that their other child is safe. Their world has stopped. That is it.
So instead of offering an unrevealed level of help, take the initiative. You know what it takes to run a household; get over there and cut the grass, handle leaves, move snow, decorate whatever. Bring the mail to the hospital. Take a quick look at the car inspection stickers, out of date? No problem, switch cars with them for the day and GET IT INSPECTED. If it needs a lot of work, pull from the network, the money will come. We had friends come over declutter our yard before a hurricane and clean the house. That was a huge help.
2. Sign Up Genius Meal Plan
When I worked in commercial kitchens an old chef told me that everyone that cooks has a meal that they are super proud of and can prepare better than anyone they know. That goes for you too. You are thinking about it right now while reading this. And you can’t wait to sign up for it once someone takes the lead and emails out the genius link.
Here was our reality during those 3 months of chaos:
Thomas was 7. Majbritt would spend the night with him at CHOP. Mornings, I would get Hannah up, pack lunch, eat breakfast and on bus to school. Then I would go sit in my cubicle and pretend to work for 4 hours. At lunch, off to CHOP, taking unpaid leave. Hannah would get off the bus with a friend, have dinner and I would leave CHOP around 8:00pm to get her. How was school? Take a shower. Can you wear that shirt again tomorrow? Call Mommy. Hugs. Say it with me, “Now I lay me down to sleep…”
Then I would eat. Usually a bowl of Honeycomb. Yep. Didn’t even open the freezer full of giant meals. I tried to give some of the lasagna trays to the families that helped with Hannah- but they would not take it. We ate it all eventually, but not until the crisis was over.
So before you go full blown Julia Child, why not just bring milk, cereal, OJ, eggs, bagels, jam? Get something quick and easy you may not ever buy for yourself, like prepared meals from Wegs. Whatever it is, make it portioned for single serving and packaged in oven ready containers. And don’t even think about asking for the container back. A bucket of fried chicken would be great, and eats well cold.
3. What are you going to send to the Hospital?
Remember, every keeper thing you send to the hospital, the Dad has to carry home. That is the rule of life and starts in the maternity ward, am I right Dads?
So, about that giant teddy bear that you brought in with the big cookie tray. The cookies go to the nurses, most of them anyway. And that is good because nearly all CHOP nurses are about 28 years old, run around all shift like crazy- spin and yoga at home and look like they’ve been eating 2 grains of rice for 10 years. They need the sweets, I certainly do not. The child may be on food restrictions or no appetite.
Another thing about the nurses- They give stuffed animals to the children as a bribe for taking the IV nice like. They have a whole stockpile of teddys and such because the IV is one of the most traumatic things a little patient must endure. Those bribes work great, IV is in, two hours later Disney Movie sleepies and Teddy gets tossed onto the windowsill. Your Teddy will go on top of that pile, next to the flowers and balloons. I’m not saying your Teddy won’t be THE ONE that the little patient MUST cling to while going into each sedation- and reach for as the drugs wear off. Just try to keep it small, or plan to help out on move out day.
Speaking of move out day, we moved in and out of CHOP multiple times during our experience. Sometimes the docs would discharge us for a few days (AWESOME) under outpatient care. Roc Docs Be Like: “Go home, keep the fluids up, call this number if anything happens, and see you Tuesday!”
Of course I’m usually driving the Sentra rather than the SUV to save on gas. So we take SuperT with a cart full down to the garage- Get Mommy and T all comfy in the back seat with blankets/pillows. I start loading. I had to disassemble the wheelchair to get it into the trunk. No kidding and thank goodness for that tool kit. Nothing else will fit into the trunk. So now I place the flower vase on the floor of the passenger seat, bunch of Teddys, bags of laundry, medical pump and more on the seat. Then I fish the IV pole in from the passenger door, trying not to hit Mommy. I knock over the flowers, spill water all over the floor. Dammit. Use a Teddy to mop up water; Vase, flowers and teddy all go right into the trash bin of that garage. Thomas was sleeping and never noticed. Yes, I know I’m not proud. But don’t judge me without learning. Be sure not to do this to another Father.
4. Wawa Gift Cards, Food and Parking
Wawa Gift cards are one of the best and easiest things you can do to help out a family in need. I went through a lot of gas that year- drove into CHOP every day T was inpatient- and many days for checkups after final discharge (still). The folks that generously donated Wawa cards paid for all that gas, and I thank you- we are very grateful. I was also able to keep milk in the fridge, coffee and most of my lunches.
The Cafeteria at CHOP is very well run with great food choices. I don’t know if they have a system allowing you to purchase cafeteria credits for a family, but that would be perfect. Watch the hours though- they close at some weird hours and when you child is sick all your hours are weird. As an inpatient, you can order his meal through the room- and they are pretty liberal with the order. On nights I slept over I would call in SuperT’s breakfast like this:
He wants an Eggs Benedict/hash browns a large coffee and OJ, side of sausage- Oh, and a Mickey Mouse Pancake and chocolate milk. They just said OK and send it. But if you can get a family cafeteria credits, that would be awesome.
Parking at CHOP is another thing you may not think about. The hospital is generous and allows a patient’s car a flat rate of $4/day. For sure this is a pretty good deal. We were there for about 90 days, off and on- so ~ $360 to park. Thing is, one parent usually left the garage at 8:00 each night, mostly me.
I would pay for parking at the kiosk machine outside the elevator door; there was a skeleton garage crew at that time of night. If you want to support a Dad, get him a $50 pack of crisp one dollar bills. No, not for the jiggle joints on Delaware Avenue, but to get the parking paid without putting it on his already stressed credit card. I’m sure we’re still paying interest on parking.
There are many other things you can do; or not do, to support your friends when they are in trouble. You know them best- and you just need to take the initiative.
Don’t just offer help and wait for a response. You can do better than that.
Much Love All!
Joe Schmidt
PS: Thomas is doing great now, and today 10/30/2015 is his Three Year Cancerversary!
He is going to march in his 5th Grade (and final) Bradford Heights Halloween School Parade! I took the day off to write to you and cheer him on!
He is going as SuperT!