Had a day full of blessings today! ^_^ Met with the bracing specialist today that our new primary care set up for me. He was awesome! Patient and kind with the boys, knowledgeable about EDS and even my other condition that has my leg all twisted up on the right, and very knowledgeable about braces. 🙂
Bad news is, he took one look at my current one and basically told me the place that did it for me cheaped out on me and used things that are now considered obsolete and then didn’t even make it right. He said there are extensive errors that would need to be addressed and repaired before the brace I have would work right.
GOOD NEWS is that he suggested tarting from scratch and building me a custom one that will truly hold me up and together like I need. One that will not allow me to keep dislocating inside the brace (my current one allows that and simply lets me “lock” myself into a standing position to try and prevent a fall). One that will secure both my knee and my ankle in a way that won’t sacrifice comfort for safety. He even is going to make it less of an eye sore for me. Said that having a bad leg shouldn’t mean I am forced to advertise it from a mile off. I couldn’t help but laugh at that one. lol 🙂
Best news of all?? I asked if all this would be covered by medicaid because I just don’t have the funds to pay for bracing out of pocket. He replied by saying there are forms needed from my primary and certain things that need to be documented, but he works closely with my doctor a lot and knows it will not be a problem. He then put together some papers that details exactly what needs to be done, including which form to fill out, wording that the insurance company will want to see, and details of the kind of documentation needed and how to include it. 😀 Then, as if all this wasn’t enough, he took my current brace and fixed some of the more pressing issues for me so it wouldn’t keep injuring me while I am waiting for the new one to come in. 😀
All this has a double fold blessing for me. 1) I am finally getting the help I have needed for all these years. There is even hope now of regaining some strength and stability! 2) The doctor who is arranging all this for me, is meeting with my children in two weeks! And he’s already prepared to start getting the same kind of help in place for them. ^_^
Thank-you to all who helped me get my family to Idaho and those that are continuing to pray for us. It is making a huge difference in our lives already and I couldn’t be more grateful. ❤ On a side note, we also are starting to see the connections come through on the Autism side of things too. We will be going to an Autism family cookout THIS Saturday! A chance to meet other families, get more information on local help and services, and there will even be a group there that will be teaching the kids how to fish! David and Joshua are really excited about that. lol 🙂
First of all, I would like to apologize for the lack of updates over here. I tend to write most often at my main blog, An Autism Diary, as David is most often my inspiration for writing (whether directly or indirectly). I do however have great news! We made it to Idaho! We had some adventures on the way here and some trials over the last couple of weeks, but things are definitely starting to look up as a whole. 🙂 Starting with better medical care and a doctor who understands Ehlers-Danlos Syndrome! 🙂
I met the new doctor, with kids at my side, on Monday and was so overwhelmed by how much he knew and understood without me having to educate him (such a big difference for me) and at how willing and ready he was to help me. When I asked if he knew of a pediatrician who could help the boys as well, he told me he was a family practitioner and was willing to help my whole family. 🙂 By the time I walked out of that appointment, I was equipped with a doctor who believed me, understood my condition, a script to get my leg brace repaired, and scripts to help take the edge off my pain so I could regain some quality of life. Plus, I have a follow up appointment in just a few weeks, where connections will be made to the specialists I need to manage my symptoms, strengthen my body, and generally help me gain and maintain some stability in this battle that EDS has waged against me.
I really like our new doctor and am beyond grateful for the gift of making it to Idaho so that this partnership could be possible. My days are still full of injuries and struggles common to EDSers, but now I finally am getting the tools needed to fight back, and fight back well. Also, my boys are going to finally have the same and more. They have a fighting chance for a higher quality future than what I was able to give them before. I couldn’t be more grateful for that. 🙂
These last few days I have been facing the hardest battle and fight that I have ever faced. And that’s saying something for someone who has been forced to fight tough battles all her life. After a couple of days to process through the shock and emotions though, I am starting to come around. I do not know how this one will end. It looks very grim still, but I am fighting as hard as I can and am doing everything I can to bring in professional support and advocacy as well to help me.
All in all though, I know my children and I will be okay someway, somehow. We may not get the outcome we are fighting for, but I know I can trust my God to keep us safe and hold us up regardless of what happens to us. That’s not to say I am not scared. I would be flat out lying if I tried to claim I wasn’t scared. I do trust Him though as best as I know how to do so. He has gotten me through many a nightmare in this life, and He has promised in His Word to never leave me or forsake me and to carry me through the fire.
Praying this “fire” doesn’t take away as much as it is threatening to, but if it does, ready or not, I will step out in the faith that my loving Father in Heaven has my back.
Below (at the end of this post) is a song that I heard on the radio while taking the kids out for a drive. Something I tend to do when I can’t sleep and am overwhelmed with grief and/or stress as the kids tend to relax and quiet down while in the car and I am able to listen to my music and focus on the road instead of all my trials. At first, I wasn’t really feeling like an overcomer. The song that best described my state of mind and heart at the time was this one. In a lot of ways it still does express my heart well too, but then I got the mail, and found a precious gift inside from a friend who wanted to encourage me. She succeeded. ❤ Tears flowed freely from my eyes as I opened the package and took in the contents it held… but I also smiled the biggest I have in days. It was a priceless gift that cost little but was made with so much heart. My favorite kind. 🙂
Reading that little card and holding all those little items in my hand, really did encourage me as I allowed myself to soak in the reminder that I am not alone even in my darkest hours. Something everyone could use a tangible reminder of from time to time I am sure. : )
Some other encouragement came by the way of some verses that have always been a favorite source of comfort for me. I have included two of them below. I hope they and the song can offer some encouragement to some of you out there as well.
“For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” — Romans 8: 38, 39
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” — Isaiah 41: 10
“Overcomer” by Mandisa
For three days now I’ve been wanting to write a special post for Easter. For three days I tossed and turned with what to write, how to write it, and trying to find a chance to write in the first place. I wanted it to be something special and of my best work. I wanted it to have meaning and depth worthy of the love it would represent. I wanted perfection out of it so badly I almost didn’t come here to write at all because as the weekend progressed it was becoming obvious that perfection, or even anything close, was not something I was going to be able to achieve.
I just couldn’t let this one go though. Easter to me is more than colorful eggs and fluffy bunnies. It’s more than bright, beautiful baskets and all the chocolate goodies. It’s even more than that “sacred” tradition of showing up in church for Easter services even if you haven’t been since Christmas.
Although I do enjoy the various traditions, games, and activities that tend to surround Easter and I have found ways for them to hold much meaning and reminders for me, Easter is just sooo much more to me.
For me, Easter is a time to purposefully reflect on what Jesus did for us and most of all the love it took for Him to not throw in the towel and let us reap our own consequences. Just like at Thanksgiving, people take a step back to add a bit more thankfullness and reverence to their daily grind of life, Easter is a time to do the same with Christ as our focus. Granted, we shouldn’t reserve reflection on (and thankfulness for) His life, love, and sacrifice for just one day a year, but I do see the value of having a time to refresh our focus and remind ourselves of what our hectic and sometimes crazy lives tend to allow us to forget.
This last friday was an extra special as well as extra emotional one for me because of something special we all got to do at CR. They brought in an old, beat up, rugged, and worn cross. Then they gave us each a piece of blank paper and a nail. We wrote down our struggles, our heartaches, our bad habits and hang-ups. We wrote about our depression, our addictions, our fear, and our anger. We noted the pain of our past and the worry for our future and we expressed our brokeness with both those around us as well as ourselves. Then we folded our papers over so that no one else could see but ourselves and God.
What came next was the most powerful part for me. We were given a hammer and told to nail it all down. We took our pieces of paper and all the personal hurt, pain, and struggle it represented for us and we nailed it onto that old beat up cross in the middle of the room. The message being both taught and symbolized there was that Jesus took care of it all for us when He allowed Himself to be nailed down. We don’t have to carry these burdens or fight these battles on our own! We don’t have to hang our heads in shame for the rest of our lives or hide in the shadows trying to run from our fears and past! Jesus wants it all and has already taken care of the price! To me, this is the greatest and most precious news on the face of this earth and I welcome any time or holiday that helps bring the focus back and clear up our vision once again. : ) I don’t know about any of you, but sometimes I tend to forget that I don’t have to do this all alone. That I can let go and that I am forgiven. That there really is a future for me that is filled with love and hope despite how my past has played out.
To me, that’s the essence of Easter. That’s what makes it so special to me. It’s a time of specific reminders and reflections on the life Jesus lived, the sacrifice he made, and the love He had, still has, and will always have for even me.
Below is a music video that has always meant a lot to me over the years. The song is “Secret Ambition” by Michael W. Smith. The video shows not only reminders of what Jesus’s sacrifice for us was really like for Him, but also the love for us that He has and the life He lived out here on earth to help teach us and help us understand and draw closer to Him. Some of the images are a bit graphic so I strongly reccomend not letting any young children see this, but the song can be played for anyone and the video is well worth watching for the older teens and us adults. It’s a heart touching reminder of all Jesus has done for us and therefore why Easter has such a special added meaning for those of us who believe in Him.
Happy Easter everyone ((hugs)) and may your day be filled with renewed hope and overflowing love no matter how you choose to celebrate. : )
The above word picture was posted on Facebook by a dear friend of mine and I couldn’t have seen it at a better moment. It’s another all-nighter with two boys that won’t even yawn let alone lay down and stay in bed lol and we’re over at Grandma’s house again tonight too so there hasn’t been the usual things for me to do to keep myself awake and entertained (if I don’t stay somewhat entertained, the staying awake part doesn’t work out too well haha) so I’ve been messing around here and there while attempting to keep the boys’ noise level down enough to allow my mom to still get the rest she needs.
At one point, I ended up jumping on-line to check my messages and waste some time on Facebook, but when I brought up the site, the first thing I saw was his picture next to a status update about how he’s checking out new girls… My mom’s account was still signed into from when she was on earlier. This is where I should have immediately just logged her out and logged myself in like I always do but for some reason I let myself click on his name and look at his page. It had been a long time since I had seen his face outside of an old picture here and there… the long hair he finally grew looks good on him just like I thought it would way back when. I started to remember the Aaron I once knew and fell in love with… the one I had hoped for so long would truly re-surface and take over… The random pics of him with other girls though and the piles of crude jokes and statuses among other things served to remind me again of who it was that I really lost.
I’ve been getting hurt deeply from day one of our marriage. Literally. To be honest I am ashamed and embarrassed to admit I couldn’t see it at first for what it really was and that when I did see it, I tried to excuse it away or make it better for so long… And looking back on everything I can now see the red flags that should have been slapping me in the face while we were still dating… Abuse can be tricky sometimes… when you spend your life surviving certain types of abuse and finally manage to break free, you can sometimes be blinded to the very real abuse you’re entering into or being surrounded by in a new relationship simply because you’re putting all your energy and attention into making sure the old type of abuse doesn’t happen to you again.
And sometimes, you find yourself looking back after months, years, maybe even decades (mine sadly took years) and you start to realize that the pain, heartache, and fear you were living in really wasn’t all your fault like you had been taught to believe by so many for so long… and you start trying to break free again and pick up what’s left of your shattered and confused heart…
That’s where I am now… Thanks to God and some precious new friends that have entered my life over the last year I am getting there. Slowly but surely. Some nights still hit hard though and the tears start leaking out all over again… Especially when new “fuel” so to speak has been added to the fire…
Know what hurts more than even all of that though? He’s finally being nice to me again… now that’s he’s getting his divorce… he even had the nerve to say he loves me after years of me longing to hear those words but never having that privilege… To me, that’s cold. And it’s what hurts the most…
I heard a song on the radio today too though that made me tear up from the comfort it gave. It fits my situation, my whole life really, pretty well… The comforting message? God doesn’t waste our pain…
“Nothing is Wasted” by Jason Gray
I got to go back to my Celebrate Recovery group tonight after having missed two weeks due to the seizures and then us all getting sick over here. Tonight was a lesson night and I really liked the main analogy that was used at the begining.
We were told about an old, rusty, beat up coke can. It was covered in dirt, bent up beyond repair, and even had holes in it. Not too incredibly long ago, this can would have been deemed worthless and thrown in the trash. It had no value any more and it was dealt with accordingly.
Then recycling came along. Over the years we have learned about how to see that beat up old can in a whole new light. Where as it’s still true that in it’s current state it isn’t of much use, we now no longer see it as worthless or destined for the trash. We see the hidden potential behind all the scruffs, scratches, and dents. We see the new life waiting for it if someone only takes the time to invest in the can to help it get there. We see possibilities, hope, new beginnings, brighter futures.
We also know though what it will take to get the can there. Crushing, melting, purifying, molding. The can has a hard journey ahead of it if it wants to be made into something new.
Now think of that can as you and me. We’ve been hurt, damaged, broken, and bruised. We have scars from unimaginable pains and some of us have so many holes that have been shot through our self esteem and self image, we can’t even stand up anymore, let alone stand tall. We’re worn out, weary, and in need of rest. We’ve known heartache, abuse, neglect, addiction, shame, and more. We’re over burdened by life’s harsh reality. We’re crippled and laying low from life’s repeated blows. Society sees us and thinks we’re useless. They use terms like “has been”, “yesterday’s news”, “worthless”, “reject”, and countless others.
Now some of us may be better than others at hiding the hurt and pain. We might be better at keeping society in general, and sometimes even our friends and family, from seeing anything past the fake smile we plaster on our faces to help us get through the days. It’s still there though, and we know it all to well. And we still here the labels. The name calling and rejection still rings loudly in our minds and hearts even though no one may say it out loud.
Then, we encounter Jesus. The One Who loves us so much and so deeply that He reaches through all the muck and mire, through all the mud slinging and shame, through all the secrets and fake smiles, and He gently knocks on the doors of our hearts and offers an invitation.
“Here I am! I stand at the door and knock.
If anyone hears My voice and opens the door, I will
come in and eat with him, and he with Me.”
He’s offering to be our friend, our brother, our comrade. He’s offering a listening ear, a caring heart, and warm fellowship. But get this. He’s not stopping there! He also loves us so much that He’s holding out His hand to us, inviting us to allow Him to change us. Just like the recycling process changes that old beat up can, Jesus is offering to take our battered, wounded, and beat up hearts and lives and turn us into something totally new.
The process isn’t easy and it has it’s painful moments to be sure. Just like that can, we’ll have to allow our old selves and our old ways to be broken down, melted away, and purified. We have to be willing to let all that pain and hardship be placed in the hands of our loving Savior so that He can push it through the fire of healing and purifying and then turn around and mold it into something more beautiful than we could have ever imagined.
Don’t worry, unlike the can who pretty much goes through the whole process without much thought from the recycle worker, you and I are not alone. Our Recycler (Jesus Christ) takes a very personal interest in us and walks along side us the entire way. Holding our hand, carrying us through the rough patches that are too much for us to bear, encouraging us and keeping our hope and love alive by reminding us of His love and the future He has planned for us.
And the end result? A whole new life. A whole new creation. Endless possibilities. A brand new beginning. A brighter future. And a heart that has been hand delivered and molded by the master potter Himself with the greatest love mankind has ever known.
You see God never wastes a single hurt. There is not a single tear that falls that He doesn’t want to heal and redeem. Not a single broken heart He doesn’t long to hold in His hands and comfort and nourish back to wholeness and beauty. He tells us that He is close to the broken hearted and that He gives strength to the weary.
The only catch is, He won’t force this on us. Unlike that old and tattered can, we get to have a choice. Will you answer His knocking? Will you let Him in? Will you trust Him to take your pain and scars, your dark closets and hidden memories? I promise the end result will be nothing short of beautiful if you do. God specializes in turning brokeness into stunning glory. Will you let Him do it for you? : )