Hey friends! So I've had a lot going on these past few months. Like a LOT a lot. Too much to write in here right now. Andrew and I are still in the funk of it at the moment, but it'll all work out one day. I'll update I. Here at some point, but for today I want to talk about yoga. I have set up a GoFundMe account to see if I can get myself Yoga Alliance certified to start off this newest chapter of life. I'll copy/paste it here.
Hey, Everyone! My name is Katherine and yes, I feel like an a$$ asking you for your hard earned money. This is different from my yearly fundraising for MDA - that money doesn't go to me and could possibly fund the cure for my son someday. So I have NO issue asking you to fork over some change for that. But this? Money for me? Yeah. Aca-awkward. But I don't know what else to do. So here goes.
I have a 5 yr old son named Andrew. He is the most wonderful, difficult, silly, stubborn, beautiful mess. He is so Little and smart and loves to dance and is really starting to develop a precious love for God. He also happens to have Duchenne Muscular Dystrophy, a rare and terminal rapidly progressive muscle wasting disease. Little can walk today, but in a few years he will not. Soon after that, he will lose the ability to lift his arms. His lungs will fail. His heart will fail. There is no cure. There is no treatment nor drug to slow the progression of the disease. He is not expected to live past his early 20s.
I have chronic headaches, neck and shoulder pain that trigger migraines every few days. The posture one takes from caring for someone one who only comes up to your waist coupled with carrying said human on your left hip every day for 5.5 years will do that to you. I will be doing this his entire life. (Yes, I do have to carry him even though he can walk. He moves at a snail's pace and fatigues after just a few minutes on his feet.)
So what does all this have to do with yoga and why do I need financial help?
Well, yoga is the one hour of the day where I am both pain free and anxiety free. Practicing takes away every muscle ache, every desire to crack a vertebrae. I focus on breathing and stretching and not on Little's upcoming doctor appointments or how many times he's already fallen that day. I want to give that hour to others. I want to give an hour like that to my son. I want to go into senior centers and rehabilitation centers and give an hour of relief to them. I want to support ,yield and my child financially. I want to give him a future above the poverty level. I want to safely and effectively stretch my child when he can no longer move on his own. But to do that, I need certification. And certification costs money. Andrew and I are on an incredibly tight (like non existent) budget due to the loss of income that has come our way recently. We have had to sell our home in KY and head to AR. We are also mooching off of my sister and brother-in-law so we have a roof over our heads. So, yeah, no extra change for yoga school. But this is what I want to do with my life.
I need to start NOW while Little is relatively healthy and I can get to class for 9 months, start teaching, and eventually rent a studio space. I don't know how long I have with Andrew, and I want to do everything I can to make his quality of life better. So that's why I need your help. School starts in Sept and I need to register within the next few weeks, but I can't register unless I know I will be able to pay for it. $3000 for certification, $ for classes outside of the teaching studio where I can do my homework, and $ for practice tools. $3500 should cover it. So, that's my novella.
Can you help us?
Namaste - Katherine
You can follow along with us at (and our FB link is on the right hand side of the page)
Saturday, October 11, 2014
Last night, I repented and was baptized. Again. Second time now. The first was when I was 14 years old. 20 years ago. Feels like 4 lifetimes ago. When I did it back then, I believed that I was doing the right thing - declaring that I do believe that Jesus is the Son of God and that he died for the remission of my sins. The end. In my 14 year old mind, that was the thing you do in the Church when you believe and you're about that age. I didn't give much thought to the way I was supposed to live my life afterwards. BECAUSE I WAS 14.
Ever since Little was born, my perspective on everything has changed. Yes, I know all mothers say that, but not all mothers have a child with a rapidly degenerative and ultimately fatal muscle disease. When I say my point of view has changed, I'm talking about a Mt. Vesuvius kind of obliteration of everything "pre-Little". These past almost 5 years have put a nagging in my heart that I wasn't quite right with God. These past 3 months in particular have brought it front and center in my mind. I've been worrying more, allowing anger and resentment to take hold, and questioning whether or not I was all in when I went under the water as a teen. Was I wholeheartedly baptized or did I just get wet? No one should live with that doubt. When you make the decision to be baptized and follow through on it, then your name is written in the Book of Life. I haven't been able to say to myself, "Yes, absolutely" when wondering if I'll go to Heaven when I die. I don't want to be hopeful for it anymore, I want to KNOW. And now I know; my name IS there. I'm not saying anyone has to go and be baptized after they've already done it. I'm saying I needed to step back into that water. I needed to rededicate myself to Him. But if you are questioning yourself and your previous intentions, then maybe you do, too.
Over the summer, I learned that two of my dear friends who I invited to start attending church services with me made the decision and were baptized. Then a few weeks later, one of their dads did the same. I was lucky to be in town that time and got to witness it. Then 2 weeks ago, their sister took the plunge. They thanked me every time one of them repented and alhtough I was overjoyed at their decisions, I also felt a pang of guilt and shame. It took me until yesterday to realize why. Who was I to be thanked for leading anyone to God when I wasn't even sure I was there? What kind of hypocrite am I to tell others they need to be baptized when I needed to be reborn myself?
I get it now in a way my 14 year old self wasn't mature enough to comprehend. I have a child now and I experience the love a parent (God) has for their children (us). I think about the way Mary and God must have felt watching Jesus up on the cross and it breaks my heart in a way it never did before Little. My son will suffer and die from his disease, but the research and studies and clinical trials he is and will be a part of will help these doctors cure future generations of boys with Duchenne. Now I am NOT equating Duchenne with the cross or the treatments with salvation, please don't misunderstand me. What I'm saying is that I have the tiniest glimpse of what it is like to watch your child suffer for a greater cause. When he gets those injections one day, when he suffers side effects from a new medicine, when he is bruised from testing out leg braces, when he swells and screams in pain and cries from giving blood for a lab to study and use - those are physical sacrifices he is and will endure for the sake of DMDers to come. AND IT KILLS ME. This smallest of insights into what Mary and God must have felt to give their child to the cross for us is still brutal. Now magnify that 100000 times. That's what it must have been for them on that day to watch Jesus endure what he did. I don't believe I could have handled it. And to know that it was for us - sinners? People who don't deserve dog scraps? How can I keep living a life for me and not God when He gave his son for me??????
So I brought it up to two of my sweet friends last night and one of them blurted out "So let's do it tonight." And she was right. When you know, you go. Don't waste another second. So we didn't.
The second most precious part about it (bc obviously salvation is the most) was having my son at the foot at the baptistery. He got to watch Mommy wash her sins away and now we have this moment together.
I sat there are bawled for a moment (who's surprised?) while Andrew's tiny hands clapped for me over in the corner of the photo. The blonde head in the picture is my friend's son. My preacher's grandson was there, too. It was so awesome to get to show these three little souls what we do when we decide to follow Jesus.
In these last 20 years, I have made some pretty poor choices (some great ones, too). I never stopped believing that Jesus was the way, but my life didn't always show it. That's what we're supposed to do, though, be a light for Jesus. No, my light never went out, but it sure flickered on and off. You couldn't always look at me and think, "Oh, she must be a Christian". But that's what I want. That's what God wants. To begin my life anew for Him, I knew I needed to rededicate and recommit myself to His will. As my preacher said, the troubles I had before going in the water will still be there when I come out - so this is no blink of an eye change for me. I will still make inappropriate jokes. I will still cuss when I stub my toe. I will still have feelings of anger, resentment, jealousy, pride, and impatience. But I can give them to God. I can ask for his help and forgiveness. I can rest easy, safe in the knowledge that God's got this.
Acts 2:38 Peter replied, "Repent and be baptized, every one of you, in the name of Jesus Christ for the forgiveness of your sins. And you will receive the gift of the Holy Spirit.
Acts 3:19 19"Therefore repent and return, so that your sins may be wiped away, in order that times of refreshing may come from the presence of the Lord
So above you see that the Bibles does instruct us to be repentant and baptized for the remission of our sins. And below, you will see that Jesus, himself, repented and was baptized.
Matthew 3:13-17 “Then cometh Jesus from Galilee to Jordan unto John, to be baptized of him. But John forbad him, saying, I have need to be baptized of thee, and comest thou to me? And Jesus answering said unto him, Suffer it to be so now: for thus it becometh us to fulfil all righteousness. Then he suffered him. And Jesus, when he was baptized, went up straightway out of the water: and, lo, the heavens were opened unto him, and he saw the Spirit of God descending like a dove, and lighting upon him: And lo a voice from heaven, saying, This is my beloved Son, in whom I am well pleased.”
And here, is how I felt last night. This passage shows you the urgency in which we should stop what we are doing and take the plunge, so to speak. We don't know what the next hour holds, so why wait? Why take that chance?
Monday, September 8, 2014
We feel sooooooooooooooooo good.
Ugh we feel so good
Any of you reading this who have been there just did the hand motions, didn't you? ;) Here's Andrew's version:
Little and I just got back from one amahzing weekend at Camp Courageous Kids in Scottsville, KY.
CCK is a not for profit medical camping facility on a 168 acre farm in Scottsville, KY. It took Andrew and I about 2 hours to get there through some.....interesting....back roads. It was downright terrifying, ya'll. For about 12 miles, the road was only large enough for about 1.5 cars at a time. That means that if someone is coming from the opposite direction, you both have to swerve off the road to avoid a head on collision. Thank you, GPS, for that lovely route you chose for us. Anyway, CCK is a fully functioning campground. They don't water down the activities even though all of their campers (except for siblings on Family Weekends) are special needs/medically complex kiddos.
Little got to do all of the things that your kids do at camp:
He chose to use that big purple ball instead of a regular basketball.
I think this was his favorite thing. We went 3 different times.
arcade/fun zone games
It got wild at the skee ball table. We were all ducking and dodging.
Real arrows here, guys. I told you they don't water down the activities.
He actually hit the paper the target was on!
The horseback riding got to me. I couldn't believe that I didn't have to say one word to the staff about how to handle Little, what not to do, that he would need someone to walk beside him in case his body wore out and he couldn't hold on - they just all knew. They were so prepared and on it. I mean these folks do their homework. I watched him riding around on Rocky and that's when it hit me:
Little isn't "special" here.
THAT'S IT, guys. THAT'S THE JEWEL. I couldn't stop the tears from streaming down my face. Yes, I know, you all already figured I would cry at some point. But these were tears of relief and of joy in my heart. Tears of gratitude to these people and this place for giving me and Andrew 2 days of NORMALCY. We were in a world where he wasn't the one with the disease. He was just Andrew. We sepnd every day of our lives under the umbrella of Duchenne, but none of that mattered here. Here was just another camper. I can't possibly put into words the release my soul felt. I made 2 of the staff members cry, too. Go me. Ha! I'm glad that they got to really see gratitude from one of the parents' they were helping.
Even the horses were in on it. I watched one of the largest horses I've ever seen up close, slowly and cautiously walk over to a little girl who was laid out in a fully reclined power chair - I don't think she could move much more than her eyes - tubes, beeping machines, etc - and start to nuzzle her. It was so sweet. The horse sniffed and licked and nudged her the way a mama cat tends to her kittens. Just generally fussed over her. Bah. I love horses now.
He was really more into just throwing the bait into the water and watching the smaller fish swim up and fight over it.
THESE GIRLS! Ohhh, these girls. They are who really made everything possible for us. The blonde is Macey and the brunette is Chrystal. They were our personal sponsors for the weekend, except we just referred to them as "Andrew's Girls". Every family at camp was assigned one sponsor, or helper, for the entire weekend. The sponsor did everything the family did, when the family did, however the family needed. The only time they were away from the family was to sleep. I hit the frikkin jackpot with mine. Not only did I get two of them (Macey's family didn't show up, so she asked if she could join ours), but they are both in their final year of their nursing program. So I felt completely at ease leaving Little with them whenever I had to run back to the lodge to grab something or wanted to stay and talk to another family while Andrew wanted to go play in the gym. Chrystal and Macey were so kind and sweet and willing to do whatever Andrew wanted. I miss having that kind of energy! They spoiled him. On Saturday, I counted three ice cream sandwiches in his hand at different times throughout the day. Little just loved his girls. First thing in the morning he would rub his little eyes and ask, "Is Chrystal going to be in the breakfast room with us?". They really spoiled me, too. I didn't know what to do with myself the first night when they would push his stroller and open doors and refill his drink at dinner - it was strange having so much help! I got used to it realquick.
He also got to go swimming and watched a movie under the stars.
He snuggled up to the girls outside on the blankets but it was too dark to get a picture of it. Adorable.
Some of the activities he didn't choose were arts & crafts, woodshop, beauty shop, & baking, although he did manage to sneak into the kitchen and flash his big eyes at the staff in order to secure someone else's pizza roll and cupcake. The stinker.
Camp ended on Sunday after the reveal of the camp painting. It was "Pajama Party" weekend (hence the movie out under the stars late at night), so our picture was of the camp mascot in his pjs.
Our names are on the left hand side, straight across from where his nose should be, on the edge of the canvas.
I've never seen Andrew use so much energy. He just kept going! Usually just one activity like those would've been enough to wear him out for 2 days, but he was just so pumped and caught up in the action that he didn't want to stop. CCK is the location that Nashville's MDA uses for their summer camps, so now when Andrew turns 6, I won't be as anxious about letting him go. There are "no mamas allowed" at MDA summer camp, as Linda Decker likes to remind me.
I really, truly cannot say enough good things about this facility and the staff (both the year round staff and the volunteers). Andrew's Girls even gave up a weekend they should have been studying since they have a big test today, to volunteer. If you get a chance, you should definitely go/send your child. They will leave there uplifted, more confident, and with a lifetime of memories (and so will you if it is a family weekend). Check them out online or call the center for more information.
The Center for Courageous Kids
1501 Burnely Rd