PreparePreparing for everything is pretty much a full-time job. It means always having a full gas tank. It means carrying around medical papers and a calendar with appointments and 'levels' carefully documented. It means having emergency numbers on hand, having someone on call for the boys 'just and case,' and it means that our bags are never unpacked. When Mac and I come home from a hospital stay, clothes are washed and put right back in those bags so that at a moment's notice, we can be headed to Grand Rapids. We've learned this lesson the hard way from experience.
When you undergo chemo for the first time for osteosarcoma, it feels like they release you with a bunch of medications you've never heard of before and you're not quite sure what they do, but they send you on your way because, let's face it . . . they can't go home with you and hold your hand even if you wish they would . . . and you are completely unprepared. It isn't true, but it feels like you get your papers and your permission to go home and tell you to come back in two weeks. You leave thinking 'wow, really? We get two weeks off. Great! I totally got this' But you know what? You're not 'prepared' for what's to come. No matter how prepared you think you are, no matter how much they prepare you. What they really should say is 'here's your discharge papers and your meds. You're going to have to figure out which works the best in which combination for your child because, quite honestly, no two kids are a like, and, oh yea, make sure they don't throw up too much or get dehydrated. But who are we kidding, we will see you back here in a couple of days when they spike a fever. Now repeat it all back to me. ' It's not the hospital's fault. Really, the hospital and nurses are amazing. I'm sure they told us everything we needed to know, but at that point I don't think we heard much, and we certainly didn't know what we know now. We were just unprepared. And no one can prepare you. And so you learn to keep your bags packed.
As a mom, being prepared also means that you basically carry a suitcase with you everywhere you go. In my purse, you will find the usual wallet, gum and chap stick . . . along with vomit bags, several bottles of medicine, a thermometer, baby wipes, masks, hand sanitizer, tissues, an iPad, ear buds, chargers, Epi Pen, inhalers, medical papers, our cancer planner/calendar, ace bandage, several parent name bags I have failed to turn in or lost over the weeks of staying at the hospital, a bottle of juice or water, jolly ranchers or mints, an oatmeal creme pie (or whatever MacKale has decided he can eat that week--it changes daily) and at the very bottom, without fail, my keys.
Instead of diaper bags, they need to make cancer bags for moms who have to carry so much around with them in order to be 'prepared.' But after months on this journey, I think when I leave the house, I might just be ready. Just don't ask what I have in the Durango . . . basically anything that doesn't fit in a purse plus a wheelchair, crutches.
But we have become much better at being prepared, and this has made our 'normal' much easier.
Planning is easy. We don't! We don't plan on anything anymore. It has become our new norm to have 'good intentions' instead. We learned quickly that when we 'plan' on doing something, it just leads to too much disappointment when and if it doesn't happen. So instead, we tell the boys . . . 'our intentions are to have Christmas at home, but we are prepared to be at the hospital.' Or we intend to be at school to pick you up, but you know, things can change. Is there still disappointment?Absolutely, but it is much more manageable. It doesn't matter so much about what we do or when we do it, as long as we can all be together.
|Photo by Kevin W. Fowler for the Lansing State Journal|
MacKale had great intentions of being at the MSU vs. Maryland game to cheer on Matt. That was a tough one to miss. It was THE game of the season for Matt. But ya know, when we headed to the ER with a fever the night before, MacKale completely understood that it wasn't going to happen.
'We aren't going to be able to go to the game MacKale.' '
'I know, Mom. It's ok. We can try and make it to a different one maybe.'
We had good intentions of making it to another game. We knew that Mac wanted to take McCoy and MaGill with him to see his beloved Spartans play, but we just couldn't bring ourselves to plan on it. His port failed and he had an additional surgery to remove it. The new port had an infection which caused his stay after surgery to be extended two weeks longer than normal. He was so weak after and then he started chemo back up; the yucky kind of chemo that puts him back in the hospital 8 days later. The season was running out and our good intentions were running away with them. Mike and I really didn't see how we could make it happen.
But sometimes you get pleasantly surprised . . . sometimes you are unpredictably blessed. And when that happens . . . you rejoice and give thanks. We rejoiced when we were able to spend Christmas at home and when MacKale was able to be home for his birthday. These were all wonderful blessings.
But last week, was tough. MacKale was weak after chemo, Mike and I had been struggling with accessing his new port, and we didn't really have intentions to do anything but stay home.
But we took a chance and secured tickets to MSU's last basketball game of the season. The tickets weren't even all together. The game was basically sold out. We weren't sure if MacKale was going to be well enough or if we could even get seats that would accommodate him as he is still in his wheel chair for long distances. So with all that stacked up against us, we decided not to tell MacKale or the boys. Mike and I had good intentions of going, but we were very prepared if it didn't happen.
But then . . . it did!
MacKale was feeling good . . . still weak but good. We had traveled to Grand Rapids on Friday afternoon to get some port training and let the cat out of the bag then. We told the boys, we intend to go to the game tomorrow and we intend to be able to trade in our tickets for a handicapped spot for Mac and we intend to have an amazing time . . . I handed my phone to MacKale and told him to go ahead and 'tell him.' So he texted Matt . . . "guess where I'm going to be tomorrow?"
We were able to turn in our tickets for handicapped seating for MacKale with a bonus of all of us being together.
And so we rejoiced and counted our blessings . . .
and cheered on MSU and Matt.
Despite all our preparations though, we know that we can only focus on what is at hand today. Yesterday was a gift and tomorrow isn't promised. All we can really prepare for is to accept whatever comes our way with the faith that we are not a lone on this journey. God is with us each step, and he has brought you all along for the ride. We can only plan to make today the best day possible, to try to make a difference in the lives of others, to open ourselves to the opportunities that God presents us to 'do good.' And we can always rejoice in all things . . . 'again I say rejoice!' (Phil. 4:4) There is so much good to be thankful for . . .
We have a long journey ahead of us still. So we continue to ask you to pray for MacKale's body to be healed from all cancer forever, to make it leave his body and never return, please pray that his rehabilitation provides him to regain the ability to play and move, and that our family remains strong and steadfast in our faith. You continue to strengthen us with your support and prayers. I know I say it every time but truly, there are no words to express our gratitude.