I guess I succeeded in wearing Patrick out yesterday. He’s sleeping in, so I’m going to sneak in a post and some pictures.
Once a year, our early intervention provider holds a Family Fun Day at Wheeler Farm. They invite families from all of their locations, spanning several cities. And so far, every year, we’ve been out of town when this rolled around. Yesterday, we got our first chance to attend.
Festivities officially began at 10 a.m., which meant we rushed out the door early to finish our errands and get there on time. We checked in and went straight for what we knew would be the longest line later – face painting.
Amazing what these artists can do with a sponge and a couple of brush strokes. This masterpiece took less than a minute on a kid who kept wiggling away because.. well, what were we doing to his face? But once he saw himself in the mirror, he grinned from ear to ear.
The next stop was the wagon ride. I knew that Patrick’s love of tractors and wagons guaranteed this would be a fun adventure. We arrived a bit early for that and got to go out on the first ride of the day. Patrick sat right up front where he could see the tractor pulling us really well.
They started the engine, and he grinned… We started to move and a smile of pure joy spread across his face. THIS was the best thing we could have done all day!
After that little ride, we stayed in the farm to visit the animals. We went first to the goats. Patrick loves how friendly they are and I’ve been promising him goats at a petting zoo for weeks. He walked right up to a little one and gave it a kiss. Then we visited and petted them all.
We saw other animals, too, as we walked back towards the carnival. There was a cow napping against a fence and letting kids pet her, so I took Patrick over to have a try. Just as I pulled out my camera, though, he spotted a goose and started saying “Duck, Duck, Duck” and took off.
I was a little worried, as geese tend to bite, but this one was friendly enough. She was sure Patrick was there to feed her and kept begging. After they explored each other a bit, I led Patrick away.
But the goose didn’t believe that we didn’t have food and followed us honking for the next several minutes.
Back at the carnival, we grabbed a quick drink of water, then went to play some of the little games they had set up. We sat in on a music group singing some of Patrick’s favorite songs. Then headed over to blow bubbles. He played games with a parachute, bowled for pop bottles, sat in a little soccer goal (just because another boy had)… and then, as we had other places to be and were getting thirsty and tired, headed out on our way.
It was a thoroughly fun morning.
I’m going to take a minute for a serious note. Here in Utah, a winter with great snowpack combined with a cold, late, snowy spring has waters running higher than usual in all our rivers. One lake rose 8 feet just last week. There’s a little river that runs through Wheeler Farm that was quite scary to look yesterday. It was overflowing it’s borders and flowing so swiftly it could have easily carried someone away. Over and over again we heard the caution “Keep your kids away from the river.” At one point, the family in front of us was frantically searching for a toddler who’d wandered off and I couldn’t help but worry that the worst had happened. (Thankfully, he’d just gone for an extra turn in the bounce house.)
There have been several drownings of small children in the state this month. And because of them, I’ve been getting a lot of questions about organ donation. So forgive me for taking a serious moment to address these questions.
First of all, yes, drowning victims are often organ donors. In the case of a child, it is the parent’s choice whether or not to donate organs. I will never forget watching a family I met during Patrick’s PICU stay making the decision to turn off life support and donate her organs.
Their consolation was knowing that, in a way, she’d live on.. and that in losing her life, she’d helped to save others.
One organ donor can save 8 lives.
Yes, these children are the right age to be donors for Patrick. No, that doesn’t make us feel any better about their deaths. We’d prefer for him to stay healthy enough to put off needing his transplant a while longer. And we’d prefer to these kids to stay with their families, too. The death of a child is never anything but tragic.
Yes, distance does make a difference in organ matching, so a match listed and living in the same state is given first preference. But there is a lot more taken into consideration. Matches are based on blood type, size, distance, and degree of illness. So, those living closest get first priority, but if a high priority match isnt’ found in the state, then the offer will go to the rest of the country… sickest patients first.
Remember that Patrick’s transplant won’t happen in Utah. So proximity doesn’t come into play in our case. Both Patrick and donor organs will have to travel to Washington. We live about as far from our transplant center as is allowed.
Finally, many of you have asked if all these tragic drownings mean that the odds of Patrick’s transplant happening improve. Well, in a way, yes. They mean more transplants are happening. And that means that the list is getting shorter. However, that doesn’t change the fact that Patrick is a very difficult match for a very rare organ transplant.
And ultimately, it doesn’t change the fact that this is all in God’s hands. Only He decides when a child should come home to him or when their life will be miraculously extended. He guides grieving parents and doctors and organ allocation people. He orchestrates miracles. And He heals hearts when a miraculous physical recovery is not in His plans.
Sometimes seeing Patrick sick and suffering makes us impatient for the transplant to come. But most of the time, we are content to wait on the Lord’s timing. We have been very blessed with a miraculously healthy boy, despite his severe illness and despite all the work it takes from me to keep him that way.
Hopefully that answers some of your questions.
And now, seriousness aside, here is one more seriously cute picture. This is what Patrick looked like by the time we were headed home yesterday.
Patrick Hoopes 