April, In Case You Didn't Know

Long post...from my heart to yours. I recently read a post written by a Parkinson's patient that was so raw and honest, it just kind of left me numb. I don't know who wrote it, but the blunt reality was courageous. Most people just don't know what it's all about unless you live with it or support someone with it 24/7. Some days, it's harsh, others are almost normal. The author's experience sounded an awful lot like the one at our house. I decided it was time to tell you a little bit more. I'd already been writing a new blog post, and went from there. Yes, I know it's long, but it's our house, our hearts. April is almost upon us! Palm Sunday is next week. Easter Sunday, Spring break, Georgia's infamous yellow-green pollen has taken over. Some of you are griping because you don't have the money for an expensive beach vacation or a trip to some exotic place. Or maybe just complaining in general because you can. That's fine. If you're happier complaining about what you don't have, that's fine too. Just for kicks and giggles and some peace, why not try being thankful for the blessings that are right in front of you. April 5th is Easter Sunday. If you don't know that story, I'll be happy to talk to you about it, trust me, it's not really about a rabbit and some chocolate eggs. You don't have to shower the kids with a bunch of presents. But April also hosts 2, month long Awareness events that are very dear to us...Autism Awareness Month and Parkinson's Disease Awareness Month. At my house, these are just 2 of the things that we think are pretty special. Both have significantly changed all of our lives, and even on the not so great days, I still believe our lives have forever been changed for the better. I have to add Adoption Awareness Month in this list too, but technically, that's in November. Both of our bright and shining stars are adopted. Every year, I've bragged about both of our kids. Someone special told me a long time ago, that they didn't come from under my heart, but in it. I can't even begin to tell you how true that is. They each have their own legacy, but being their mom, the "person" that they each talk to, cry with, lend their shoulder when I need it, or "debate" with. We are so very proud of both of them. Our little 25 week 1.5 lb son is now 6ft tall. He's on the Spectrum, but extremely high functioning. He was our constantly sick and at Egleston or Scottish Rite child. Our little girl is beautiful, creative, artistic, and the world's best momma. Both have hearts of gold, compassionate, loving, kind, smart as they can be, and always there when I/we need them. Love them both so much, and our incredible grandson is just like his mom. Then, four years ago, we officially added Parkinson's Disease Awareness to our list. My husband was diagnosed. We had suspected for a long time. He'd had tremors for decades, actually, since he was a teenager, but they had been telling us for years that it was benign tremors. Then one day, my doctor saw him walking, saw that his gait was off, noticed the cupping in his hands, asked some questions and immediately ordered tests and referred us to a neurologist. It was scary. A lot goes through your mind. Parkinson's disease is scary, and there is so much that they just don't know. I know quite a few people who have it or have family or friends that have it, have died as a result of problems from it. It's not pretty. It's not fun. It's not at all predictable. There are stages of decline, and there are things that make you nervous when you see them happen. There are a lot of celebrities that have it, most notable, of course, is Michael J Fox, especially because his was early onset. Every week, there's another obituary with Parkinson's related issues listed as cause, and no matter how hard you try to ignore those, you hope and pray that someone else didn't hear that news story. Dwelling on what's to come isn't the way to make the here and now pleasant. With Parkinson's, tremors are a constant. But that's just the surface. There's so much more, and unless you've been around it, we don't let you see it, because we choose to protect them. We choose to only let you see the "good" days. Sometimes, we intentionally avoid big group events. Anxiety often makes things worse. It takes a lot, it takes courage, determination to venture out of a comfort zone. There are absolutely fabulous days here, sometimes, 2 weeks or more at a time, and then the good days stop, and without warning. We have no idea how long the bad days will last. But you take a breath, you say a lot of prayers and you encourage and you just do it. You ask yourself "what did we do that was different? Was it food, was it timing, was it exertion?" There's not really an answer. Sometimes, those not so great days just show up, unannounced, and can quickly steal your joy that's carried you through those wonderful days. But don't let it. Find your joy even when it seems like there just isn't any. Here's what gets us through. Loving someone with Parkinson's is not any different than loving someone without it. You still love them. It's a hurdle, a challenge that you're going through together. One of you is caring for the other. No, it's not easy, but you still love them, and you still do everything you can to make it better, to make it easier. We just celebrated the 52nd anniversary of our 1st official date! It's been 52 years of loving him. I wouldn't change anything, even the bad days. Good or bad, every single moment is special, a very special gift. Don't waste any of them. Remember, their fight is your fight, every step of the way. Cherish the good days, make memories and keep loving and fighting through the tough days, because YOU are their advocate. You are their team, their strength, their voice, their courage, their everything. Whether it's Parkinson's or cancer or heart disease or any other debilitating, life altering illness, their fight is still your fight, and if you love them, you'll keep fighting for them. For you, the caregiver, the one who loves them, just know that it really is ok to cry when you need to...because trust me, YOU absolutely will need to. You will wear your heart on your sleeve. You won't sleep very well. People that know you will look at you and know that it's been a bad week. Those dark circles under your eyes are going to tell on you. A trip to the grocery will be the high point of the week for you. I'm not kidding. You're going to repeat yourself. You're going to have days that you don't want to let them out of your sight. It is absolutely ok to be afraid of what's next, because this disease is not predictable and it's mean as it progresses. Yes it's a must, you need to be able to talk to someone sometimes because there are going to be days that you're exhausted, that you're afraid and that your heart is breaking. But you do it so that you can be brave for them all the time because you love them. Love them through all of this. Pray them through all of this. God will get you all through it, both of you, all of you... THEIR FIGHT IS YOUR FIGHT... YOUR FIGHT IS HIS! ❤K/S