As parents our instinctual mission in life is to protect our children from pain, all types of pain, because, let’s face it, as adults we know life can be extremely painful; both emotionally and physically. There will inevitably be times in life when we cannot protect them, and we are forced to sit by helplessly and comfort them the best we can. As scary as it may be, I believe when these times arise we find out the superheroes we really are! I was gifted with so much mentally clarity and energy; things I lack on a daily 🙄😒 but, not yesterday. That parental instinct kicks in, and suddenly we are our children’s superhero’s! I think that makes us all at least a little badass 💪😅
So here I am 8 months after surgery and 2 + weeks after having stopped taking Lyrica, it’s hard to explain how I somehow feel better and worse all at the same time 🤷 I highly doubt I will ever take Lyrica again. I know it may work for some but I found it was not working for me. Sadly most of the symptoms I had a year ago have returned; added to them is the feeling of an ogre squeezing the bottom left side of my head all day long..
I just try to remind myself that my CSF flow being severely blocked was reason enough for the surgery and I guess if I really had to weigh it out honestly I do feel better than I felt in August of 2017.
Hmm 🤔 maybe had I been able to lock myself up in a safe little box away from the world while I was recovering things wouldn’t have felt so rough 🤷 but life keeps happening no matter what else is happening.
I’m learning to adapt, as I always have, that’s what a chronic pain Warrior does. I’m determined I’m still going to live my life!💪 Chiari has had me for too long, it’s time that I have Chiari.
Sitting in the car line at my son’s school, waiting to pick him up, I received a call from his principal. Now, I’m nervously waiting for her to tell me some sort of bad news, and thinking well at least I’m already here 🤦 the common pleasantries are exchanged and she assures me this is a goodnews phone call. What I am told next blows my mind and brings tears of joy to my eyes! Our son, our very own smarty pants, has scored the highest mathematics score of his entire 5th grade class and earned himself a PRIDE AWARD! And so awesome is this award that he gets to get dressed up, hear his name called out on stage, shake the superintendent’s hand and have his picture taken with him, then receive a trophy with his very own name on it!!
I’m not sure how we could be more proud of Ric than we are right now but, I’m positive he’ll give us many more opportunities to find out!
Clearly as his parents we hope this is a magnificent sign of things to come in the future! Our son doesn’t like when I talk about it but when he was a toddler there was a time when his doctor and ourselves were concerned that he could possibly be autistic. For about a six-month period we had a behavioral therapist come out once a week to work with him, she always said she looked forward to it because he was one of the smartest kids she had ever encountered. As time went on she began to believe his intelligence was the reason we were facing some of the problems we were facing with him. Lol. Kids. He’s never been ‘like the other kids’ and that is one of our biggest blessings!
He was gifted with an incredible mind! He’s never been treated like he was different than anyone else and looking at him today you would never know the troubles we faced during his toddler years. God knows what he’s doing, just have faith.
I’m very thankful I was blessed with a good spoonie day for the award ceremony at Ruth Eckerd Hall either that or I was just so excited about my baby boy earning a pride award for mathematics 🤷 either way it was an amazing feeling. My husband and I beaming with pride! I feel extremely fortunate that the Lord chose me to be his mother.
“Past me” has managed yet again to send an inspiring message to “present me” only past me knows how much “present me” needed this today!!! I remember when I took this pic life was easier, it was two years ago and I was at work (man how I miss that some days) washing boats at a boat dealers lot. I wasn’t having the best day, but this little weed poked through the concrete changed my perspective. Who would have thought this little yellow weed that popped up in my fb newsfeed 2yrs later to give me hope for my current situation.
God put it on my heart to write this today. I hope it reaches it’s intended audience!
Taking the time to listen. Listen to the silence. Listen to the whisper in your soul.
The world continues to grow busier and busier, so how do we learn to listen?
I’ve experienced first hand what not listening can do to a person. The chaos it causes in our hearts and souls and in turn our lives. I’ve experienced what listening can do for a person as well. Thankfully I’ve spent the last five years of my life making listening a goal. The dramatic change it makes is well worth the work it takes.
By now you may be wondering what exactly I mean by listening. What I mean is learning to listen to your soul. That whisper inside us all. There are many names for it, I personally choose to believe the whisper inside me is God. It is him speaking to me. And learning to hear him, to listen to myself, my gut, my true self, has caused me to grow more than I ever thought I could! If we would all just stop and take the time to be still and quiet, and stop listening to what everyone and everything around us is telling us about ourselves! And start listening to what our God is telling us about ourselves! You see all the power we need is inside of us and we allow noise and fear and obstacles, we allow life to get in the way of listening.
Trust me it’s not easy learning to listen and it doesn’t happen everyday but my God the days it does!! The days it does makes all the effort worthwhile.
The day we stop asking “why is this happening to me?” and start asking “what is this trying to teach me?” That’s the day we become free.
I logged on to my YouVersion Bible app this morning to find today is the hundredth day I’ve connected with God. This may seem like a small silly accomplishment to some, but today marks 100 days since I decided to put myself first. 100 days since I decided to completely stop pretending for other people. I am not ok everyday, and that’s ok.
I’ve been almost completely cognitive for 100 days straight lol. The first 3 months after my decompression surgery was rough. I struggled every day to try to live my life like I did before surgery. I struggled to pretend for friends and family. I exhausted myself, was angry with myself. Today marks a hundred days since I’ve blamed myself for this, because Chiari malformation is not my fault!! Over the past 100 days I’ve stopped spending so much time wondering why almost everyone left me when I needed them the most, and I’ve begun focusing on the people who stayed and reminding myself everyday that I am stronger than even I know! This was NOT my fault. I was born this way, and I don’t have to apologize for that. I also don’t have to make excuses for anyone else; what a freeing revelation! I’m only responsible for myself and my own well-being.
This journey with Chiari malformation (or any chronic illness for that matter,) is lonely. That’s the part no one really talks about. And the vast majority of us don’t want anyone feeling sorry for us! We would just like a little consideration and a little compassion.
You see this journey is lonely, and it’s rough, but if you decide to focus on the right things, the little victories and the small growth. The day you decide to focus on finding the strength in the weakness, is the day you will begin to find your true self. You will begin to find freedom.