TODAY’S FORECAST: GRATEFUL
Well here I am on post #3 and and still excited to keep writing, so I guess that’s a good sign. 🙂 I know some of you must be on pins and needles waiting to know how our health and house story concludes, but unfortunately you’ll have to wait til tomorrow’s post to find out. (A little teaser there, I know, I’m soooo BAD!) In my defense, as Ecclesiastes 3:1-15 tells us, there is time for everything. 😉
Today, I want to talk more about the people I mentioned yesterday that God put in our path to help us through the storms. These “angels of hope,” as I like to call them, have been and continue to be a very important part of my story, so I thought it only fair to give them credit where credit is due. Before I delve into the details of some of these unsung heroes though, I first wanted to share a bit with you about the impact of a chronic illness on relationships; because when it’s all said and done, it makes my “angels of hope” even more heroic in their efforts.
When most people think about someone they know having a chronic illness, they would not at all argue the fact that chronic illness can take both a physical and emotional toll on the patient and his/her caregivers. What I’ve found in my experience though, is that it is very difficult, understandably so, for people to grasp how that equates to time. With a disease like Cystic Fibrosis, there are so many symptoms and so many organ systems that can go wrong simultaneously, that it’s utterly impossible to grasp what that actually entails if you’re not going through it day-to-day.
For example, my day with CF consists of about 7.5 hours a day of taking medicines, checking blood sugars, exercising, doing my breathing therapies, rinsing my sinuses, etc. I did a video about a year ago that you can watch on YouTube called “Writing My Story” http://youtu.be/oy7LybCaFOs that gives you a little bit better view visually of what that all looks like, so please feel free to check it out. Ironically, the theme song also refers to the weather, how fitting!
Anyway, I guess the point I’m trying to make is that well-meaning family and friends, even good friends who have known me for years, sometimes have a hard time understanding why I schedule everything in pencil, why I don’t have time to give them a daily call, why I don’t drop a thank-you note the first week that they do something, why I don’t ever come up with ideas for our get-to-gethers, etc. When I say I’m overwhelmed, I’m not kidding in the least. And as frustrating as it is for them, it’s even more frustrating for me, because I want to be a good friend, I want people to rely on me, I want to hear about their struggles and triumphs, I want to be able to reciprocate all their kindnesses perfectly. But let’s face it, sometimes I can’t always keep up.
The other day a friend was visiting and I was ordering new med port care supplies. She overheard me tell the phone tech that if she “could send me 5 of each, I would update my spreadsheet.” She looked at me and said, “You have to keep spreadsheets just to keep track of your health, it’s like a full time job.” I wanted to hug, kiss, and jump up and down and say, yes, you get it, thanks!”
Yes, I keep spreadsheets for medicines and supplies, because when you’re dealing with over 40 bottles/vials in a day you need to keep track of what you have, what needs refilled, etc. If you think that is daunting, take a peek in my paperwork binder for Social Security and Insurance companies! Are you starting to see why my time is not my own? Don’t forget, I have two kids who play multiple sports, have homework, need lunches, need clean clothes, need a mom. I have two families, who I enjoy spending time with who are spread out all over Ohio. We celebrate holidays and special occasions just like most families, and I want to be a part of those celebrations. I have a husband who needs a wife, a partner, a lover, a best friend. Tackling all that in the course of each day when riddled with varying bouts of pain and side effects, sometimes, I just don’t know how I will get through another moment.
But I digress enough. I think you get the picture, maintaining relationships with a chronic illness, especially one as involved as CF, can be very trying. You need people and you know they need you in return. Depending on the time and the day, sometimes it can be very one-sided being my friend, and as unfair as that is and as much as I abolutely despise it, it’s the key fact that separates my unsung heroes from the rest.
My “angels of hope” never ask for anything in return. Never. They are content to do and for me to thank; and when and if I can repay the favor in some small way they are appreciative beyond measure. I honestly believe that God has plucked them right out of heaven and put them down in my life as angels of survival because I don’t know how I’d live without them.
My “angels of hope” come in all forms. They show up at our house with their entire family, rakes and bags in hand, rake our fall leaves, pack up and go about life as usual, as if nothing ever happened. They put Christmas presents under our tree for our children and our parents, when Bob and I weren’t sure how we were going to give them any that first year the big medical bills started rolling in and I stopped working. They bring meals to the house, not caring that they have brought them over already three other times that week. My “angels of hope” pray unceasingly, letting us know that they are behind us in every storm and that God is our ultimate umbrella.They did not blink an eye on days that things were so bad that I wondered if God even existed; they just kept praying and lifting us up. They hold my hand in the hospital even when I am a disturbing site among all the tubes and wires. They bring me snacks, coffee, magazines, visting not only with me, but my parents as well. They made “cheesecake dates” while I was in-patient, even though they had a full-time job and had a daughter at home battling with the same disease. They come to my house and hold me when I cry or listen on the phone when I get that next piece of bad news. They text me to say, I’m coming to get your kids from practice and then I’m taking them out for dinner. They go to the store to shop for personal items knowing I can’t get out and get them myself. They make me coffee and tell me about their day, just to distract me from how bad I am feeling. They call to tell me to go take a shower, to get out of the house when the blues take their hold and they know my being a hermit is not healthy. They love our kids through tantrums and meltdowns and have gone to programs at school when Mommy couldn’t be there. They come over to my house with an iced coffee in hand, never commenting on the dust or the kid clutter. They sell tickets to fund-raising events, they donate time and money to find a cure for CF. They hold my hair, bathe me, see me scarred, wrap me in their arms and continually love me through it all. These are my “angels of hope.” I don’t even need to name names, because they know exactly who they are, and the type of people that they are don’t even want that spotlight.
These “angels of hope” may not always have my hands, my ears, my money, my attention. But they have my unceasing gratitude, my unceasing prayers and my undying devotion and love. When I can, I do for them, when I can’t I don’t, I just say thank you with a tear in my eye and try to swallow my pride. Despite the seemingly one-sidedness of it all, they keep coming back, keep supporting me, keep loving me in spite of all my flaws.
So I’ll leave you with this challenge today. Be an “angel of hope,” dear readers, for someone –anyone today. Angels come in all forms as I’ve shown you here. So don’t let life stop you. Be that survival angel for someone that you know. You never know when you will need your own. God bless all my angels, I love you all.