Wheelchair tires cost $400. The battery charger costs $300. The batteries cost $500. What’s cool about this chair though is that it has lasted 12 years through countless rainstorms and a few crashes. It was given to me for free. Balance. I could complain about the cost of upkeep but it is a $20,000 wheelchair that I got for free. This does not however stop me from being human and being frustrated when something goes wrong with it. We’ve been trying to change out the tires for a number of days now. One is stuck. Rusted on. I can’t use the chemicals to get it off or I would. I can’t pay the wheelchair fix it men to get it off because they will use chemicals. These type of TINY situations send me into tailspins so I have to create balance. I just Don’t go there. Really. I walk away. 

Half off tire. So my struggle begins before I catch it and walk away. I snowball into being frustrated with myself,  and my conditions that make this a frustrating situation. I start to become hard on myself. I start to wish I were someone else who could just hire anyone to help me and not have to worry they are a man, or have cologne, or use chemicals.  Frustrated with the chemical sensitivities, the PTSD, the anxiety. That turns into me wishing I didn’t have this muscle disease, and feeing vulnerable having this disease. That leads me into feeling afraid of this disease getting worse and the loss of control. That heads me towards all of the what ifs that could happen. That makes my nervous system go into overload and smells start to be overwhelming. I think I smell something on me from going out earlier. Did I get it on the couch? The bed? I start washing things and panicking and washing more things. 

Then I stop. I recognize. I am aware. I must become mindful. Just because the wheelchair tire cannot come off does not mean I need to go to any of these other places in my mind. I did. But I am now walking away. 

So I used my scooter instead. My scooter I used around the house and for doctor appointments and dinner date kind of things. I hate taking it into restaurants because the smells soak into it and then I bring it in the house and I can’t get away from the smells. But I can’t go thinking about that. I need to focus on going for my walk. But both of my motorized devices give me freedom that I would not have otherwise. My scooter is very hard to go on walks with though.

The tires are small so they jostle me around too much. It is powered by my thumb pressing a lever and with Lyme disease and my thumb joints having so much pain, it is hard to be mindful and keep the intention of my walk. My legs are cramped as well. Balance. I have a scooter. I cannot focus on my thumb or my legs. I have to focus on the fact that the MDA bought me this scooter and because of that I have freedom to go for a walk. 

So I had a cry breakdown. Over my thumb, my wheelchair, my PTSD and all of the complications it causes, my muscle disease and my pain. I just started to cry in my scooter going around the block. Keeping the balance in my mind is very difficult but something I do not give up on.

I ran into a few people, wiped away the tears and chatted. My mind started putting things into perspective. Everyone, and I mean everyone has a struggle. Whether it is their boss, their job, their spouse, their appliances breaking, their health, their car breaking down, their best friend moving away. Everyone has something. Ok. So everyone has their own struggles. They may not be the same but we can unite in knowing we each are just trying to make it through the day. Oh the thoughts that tumble around in my mind. 

I want more though. I want to live not just survive. So I try and keep balance by being aware of not just what I am going through but what gifts are presented to me in the form of blessings.  My walks have the intention, and always will, of being in the moment and immersing myself IN the flower, IN the sunset, IN the clouds. Out of my head. 

Two days ago I went to the prairie. I had been riddled and paralyzed with anxiety all day long. I made a conscious decision to go to the prairie right at sunset and take pictures and watch the sun. I did. Nothing entered my mind what so ever. I looked at the sunset and the clouds and nothing else mattered. That sunset put a little bit of faith back into my heart. The balance shifted from all of the bad toward filling with good.

I chose that. 

I chose to go out yesterday in the scooter even though I cried I STILL found beauty and took some pictures. Flowers flowers everywhere. Raindrops on some of them still. I put on two different colored shoes which shows you that my mind was NOT mindful when I left. But I chose to try and find balance in finding the good.  Through my wheelchair tire debacle and anxiety snowball cries, I found a way, each day, to go and find something good. A sunset, a flower, watching a movie holding my husband’s hand. Balance with good.

Today it rained most of the day. I woke up and immediately felt solemn. I thought of the energy it would take to cook meals. I thought of my spirit feeling broken over my daughter’s illness. I felt utterly downhearted. But I got up anyway. As soon as the rain cleared I went out in my scooter and looked for some flowers. I found a group of yellow flowers with a new bug flying in every few seconds. I was so excited I thought of nothing else. Where my mind is filled with nature and its wonderment there is no room for anything else. Then I smelled a pink and white flower I had never seen before. It smelled like honey. And a butterfly landed right as I was taking a picture.  Their wings were flapping. They were so busy eating. I thought later, wow these were stinking little creatures and I was a few inches from them. They weren’t concerned with me though. I was absolutely in love with every moment I was watching those flowers and those little insects on them. 

On the way home I received two gifts. One was the gift of understanding. I have felt empathy, sympathy, pity, etc. I have never felt understood as I did in this moment talking to this person. He gave me a real gift. One that I will cherish. I felt completely understood. The other was a card left on my front door. It was a gift of words. These words were a gift of acceptance and appreciation for who I am as a person. A gift I will cherish. 

Yes, we each have challenges. Yes, we each have hurdles and struggles. I am RIGHT THERE WITH YOU. I am in it deep. I also celebrate in the simple things. I choose to go in search of beauty and good. I choose to not go there to the dark places as best as I humanly  can. It is all I can do right? Just keep on trying. Seeing that in the face of the struggle there IS good out there. We just may have to fight our way to find it and never ever give up. 


To gasp in delight

In the simplest of God’s magnificent creations,

Is to know my inner child.

*photograph of a pink and white flower with an orange and black butterfly

*photograph of yellow flowers with two bees and one black and white dotted bug whose tail goes from black to blue to red

Descriptions for my friend at therapybits! Photos by me on my walk today.

A moment of freedom.

This writing is part of SoCS word prompt limb.

My husband and I spontaneously went to the beach on Wednesday. He took some pictures of me on the beach. When I first looked at them I focused on one limb or another. This one is atrophied. This one is not anything like it used to be. Then I stopped. I looked at myself and remembered what I felt in that moment. I can feel what I felt in that moment RIGHT NOW.






I stood on the beach holding my husband’s hand feeling nothing but peace as he and I looked out over the waves. A storm was coming. Our feet were barely in the water. My husband asked how much longer I could stand. Forever I thought. I will stand here forever. I had no thoughts rumbling around in my head. I looked at the love of my life then I looked out over the ocean and thought, at this one moment, I am free.

Here are the pictures he took of me on the beach. I am no longer looking at limbs. I am looking into my eyes and celebrating that the body that has a muscle disease still had the strength to stand there! (My husband did have to carry me about 150 yards to get there….but still…I stood in my victorious moment).  These moments are victories. I am me. I am who I was meant to be. I am one with all of me. I accept myself. I love all of myself.

Here are the pictures that I took. Can you have too many bird pictures in the sky? I say no! And I had to put my gorgeous husband  on my blog for the first time.

Please don’t JUST “Pray about it”

I don’t know who to credit the below story. I have heard it since I was a young girl. This story has always stuck with me. I will put the story after my post. I have heard various parents tell me the amount of time they will pray for their child to be kept safe while allowing them in unsafe conditions. 

“I let them play in the road because they are kids and they have to learn at some point that they need to watch out for cars. I just pray God will protect them.”

I heard a mother say these words. These exact words. 

“She has a 104 fever but I have prayed that God will heal her and I have faith that He will.”

Words I have also heard. 

“I know he drinks and drives, I just pray that God will get him home safely.”

“I know I should make his curfew earlier but all his friends are out until 2am so I will just pray harder. I know God will hold him close.”

“ She is 3, that’s old enough to learn not to touch the hot stove. She will learn.”

“ Should he still be peeing in his pants at 11? I will just pray harder about it and that God will help him stop.”

All phrases I have heard throughout the years of parenting.

Believe it or not this is NOT a blog post about God. It is not about faith, hope or belief. It is not about God’s capabilities in creating miracles or keeping anyone safe. OK well God is a part of this but that is not the sole purpose. 

The words spoken by my mother will forever haunt me. -what was she supposed to do, she asked? 


For those parents above who I quoted:

If you let your child play in a busy street, the probability that something tragic will happen is very high.

If your child has a 104 fever, having seizures, and vomiting, the probability that something tragic will happen is high. 

If you let your little girl go to an old man’s house every afternoon unattended for years (my case) until she attempts suicide, the probability something tragic is happening is high.

If your 10 year old is urinating in his pants frequently throughout the day, the probability something is going on is high. 
I could go on with examples I have heard over the years from parents. My point is clear though. It is our job to teach our children. We have to teach them that the stove is hot. They don’t need to burn themselves at 3 to know that. We need to tell them NOT to play in the road on a curve and protect them from the cars who are flying around the corner. We need to be parents. We get to make rules. We get to make curfews that we feel comfortable with. What their friends are doing makes no difference when the statistics prove that our 16 year olds don’t need to be downtown near the bars at 2am, especially alone! 

Guess what, we get to say no! Nope, you can’t do that, it isn’t safe. We get to give them boundaries and teach them to have their own boundaries.

“She can’t remember to take her meds so I guess she will have to learn there are consequences.”

No! Teach her! Give her a calendar with check boxes. Get her a pill box with days on it. Don’t let her fail. Don’t let her fall. She has the rest of her life to make her own mistakes. If my daughter is 30 and she asks me what to do about her child who is biting her, I will NOT say, “Just pray about it.” I will teach her what I know about child development since it is what my degree is in. If she wants to pray about which consequence, which positive reinforcement she will choose, great. Just do SOMETHING. 

There are times when our children must learn on their own. I know this. We send them to school at a young age and they learn social situations at a very young age WITH a teacher present. We can guide them. We can be present for them. We can listen to them. We can give them intuition. We can give them the gift of a foundation of safety. We can take them to a doctor or seek guidance from a professional if there are medical or emotional issues. We can and we should. 
I pray for guidance every day. I pray my child is protected every day. I pray my daughter is healthy every day. I also do my part to make that happen to the best of my ability. Sending her out in the street at 2 years old and just praying she won’t be hit by a car is the same reckless parenting that got me molested. What was my mother supposed to do? PARENT! PAY ATTENTION! TEACH ME. PROTECT ME. MAKE ME A PRIORITY. THEN PRAY FOR ME…

Do parents really think they can just sit back and pray God will fix EVERYTHING. I am not saying He can’t. I am saying as a parent we each have a responsibility to take care of our children to the best of our ability. I am perfectly aware that evil is around every corner these days. We can only try our best. Sending me to a pedophiles house and praying nothing will happen I consider an absolute abomination. 

Want to know my feelings of what an abomination is? Pedophiles. And parents who do nothing in the face of pedophiles are right under that. Parents who support the pedophile and not the child..abomination.
You get on social media and you see hate hate hate. Judgment in the name of God. Excuses in the name of God. Hypocrites in the face of God. I can tell you that Jesus came here to teach us to love. Jesus didn’t just SAY love. Jesus TAUGHT LOVE. Jesus taught acceptance of EVERYONE. He didn’t just sit back and pray that God made someone walk. He told that man GET UP! That man got up and walked. 
We have a responsibility as parents. A huge responsibility. Praying only, without coupling that with teaching and guidance can be quite costly! It is not worth the risk I can promise you. 
My husband believes. My husband has faith. My husband also knew that when I was having a grandmal seizure that he had to take me to the ER because God wants us to take care of each other. Don’t you know He places people in our lives so he can work through them? Don’t you know He wants us as parents to allow his guidance to teach our children? If He wanted our children to know everything and just need prayer then He would not have given my breasts milk to nourish my baby. It was my job to feed her. I could not pray her food. Crazy sounding right? Just as crazy as letting your kid play in the street and just pray a little harder that God won’t let them get hit. God gave us a brain and he expects us to use it. 
I will continue to pray for my daughter. I will also continue to research why she is ill, take her to specialists, etc. I will continue to pray that my muscle disease miraculously heals. I will also take part in every case study I can get in because if they find the mutation that is causing this disease then there could be a cure.

What if God wants me in the right study so that I can help millions! 


Be an active parent. 

Your child is worth it. 
Below is the story that has resonated with me throughout raising my daughter. 

“A fellow was stuck on his rooftop in a flood. He was praying to God for help.

Soon a man in a rowboat came by and the fellow shouted to the man on the roof, “Jump in, I can save you.”

The stranded fellow shouted back, “No, it’s OK, I’m praying to God and he is going to save me.”

So the rowboat went on.

Then a motorboat came by. “The fellow in the motorboat shouted, “Jump in, I can save you.”

To this the stranded man said, “No thanks, I’m praying to God and he is going to save me. I have faith.”

So the motorboat went on.

Then a helicopter came by and the pilot shouted down, “Grab this rope and I will lift you to safety.”

To this the stranded man again replied, “No thanks, I’m praying to God and he is going to save me. I have faith.”

So the helicopter reluctantly flew away.

Soon the water rose above the rooftop and the man drowned. He went to Heaven. He finally got his chance to discuss this whole situation with God, at which point he exclaimed, “I had faith in you but you didn’t save me, you let me drown. I don’t understand why!”

To this God replied, “I sent you a rowboat and a motorboat and a helicopter, what more did you expect?”

Persistance in mindfulness

I went for my mindful walk with the intention of finding original bark. Tree bark. Instead I got original bark. People bark. I also had my wheelchair used as a lounge post/prop. Let me tell you this is very disrupting to a mindful walk. Between the barks of the people I ran across, the interruption of my picture taking, and the act of having to reverse my wheelchair to unhook the person’s hand from resting on it, my walk was trashed. A walk interrupted. I then looked down at my legs. Boom, spiral, wild what if thoughts. My legs. Looking at my legs made me think of my biopsy. My biopsy made me think about my muscle cells and mitochondria dying. None of this is mindful. I came home with a few pictures and the utmost defeat. 

My husband then suggest a redo for my walk. So we headed out on hour number 2 of the attempt at mindfulness. It was quite a success. 

My gracious neighbor allowed me to take some photos of flowers and plants in his yard. He has some very rare and beautiful flowers. He and his wife’s passion for flowers was so uplifting that it truly made my day. 

This flower he gave me the name of : hymenocallis occidentalis. The beautiful white flowers with streamers. 

Here are the other flowers I took pictures of in his yard. My intended bark intention was fulfilled with a butterfly on a flower as icing on the cake! It was a yellow and black striped butterfly on an orange flower. 

I am grateful for kind neighbors who share my passion for beautiful things in nature. Here this couple created an entire yard of beauty. 

On my quest for bark I found some truly original specimens! Some had peeling bark, some had sharp edges, some hollow if you knock on them, some felt like sand paper, some were speckled and soft. I felt every one. 

As I was looking at bark I saw this tree. At the very top of the tree is a dragonfly. Barely visible. But there. So tiny I never would have noticed it had I not been so intent on looking at the bark as it went up the tree.

He is up there. I can promis you. And then a silhouette of the tiniest of birds in the tree right next to it. She was singing a song. 

I wonder if you can find her… 

A dog was passing by on my left and had I not stopped to look at the dog I never would have seen my wedding flowers! In a culvert. My wedding flowers only bloom in April. It is July. What a joy to see them there. 

The rest of the walk home had beautiful yellow flowers, and a beautiful sky. In my own yard was my most favorite rose of sharon blooming with raindrops still on her. A new magnolia bloom had opened and there was a bumble bee. How excited was I that there was a bumble bee on the magnolia? Extremely! In such small things I find such great joy. 

For my friend at therapybits who cannot see my photos, I video’d  the birds singing.  singing birds make everyone’s day a little brighter. A kite, a crow and other birds


Transferring of the tribe.

Today is Day One. 

If a person gets food poisoning and they go home and are violently ill vomitting, would it be appropriate to tell that person, ” Get over it already! You’ve been throwing up long enough!” No, that would be absurd. After I got my leg biopsy and my leg had a ton of stitches would it have been appropriate to the next day say to me, ” Just walk on the leg already! You’ve rested it long enough. Get over it, it was just a leg biopsy and some stitches.” No, that would be absurd. If a person is in a wheelchair because they have MS or muscular dystrophy would it be appropriate to say, ” Come on, just get up and walk already. Get over it. I’m sure you could try harder and do it.” NO, ofcourse not. 

It seems pretty logical what to say and what not to say to someone who has a circumstance completely out of their control, right? You would not tell someone with cancer to just get over their cancer any more than you would tell someone who had just lost their mother to just get over it. These things are so outrageously absurd that no one would think to say them. And yet these same things are said to those recovering from sexual abuse, domestic abuse, and PTSD all the time. ” let it go,” or ” get over it,” or ” we don’t want to talk about that anymore,” or ” why don’t you just move forward.” 

The words said to an abuse victim are often isolating and revictimizing. It just wasn’t enough that we had to make it through the abuse, now we have to make it through everyone else who doesn’t want to deal with the abuse, even if it didn’t happen to them. So we feel alone on an island. You’ve got cousin[fill in the blank] mocking you for being “raw.” You’ve got mom telling you that no one wants to hear about these details. You’ve got uncle {fill in blank} calling a family meeting to discuss the fact that no one must discuss this topic any longer. Everyone is coming at you from all angles. Arrows are flying at you from all directions. Insults and blame all hurled at you. So you end up on your island. Alone. You are silenced all because of abuse you did not choose but you aren’t allowed to feel or discuss.

Then you get on wordpress. You see all of these individuals with hearts and souls that will reach out and give support and love and compassion and empathy. Strangers willing to give you what those right next to you cannot and will not. The more love that is given on WordPress blogs, the more those others are put into a different perspective. This causes a transformation. A shift. A turning point. Those who have hurt you are no longer allowed to hurt you. They have lost their power. Those who love you are taking over and you are embracing that. 

This is called the transferring of the tribe. 

We were born into a family. Each of us were born into a family. A family that was supposed to protect us, love us, and fight for us nomatter what. For many  of us on wordpress, that did not happen. I have read thousands of blogs and their stories are so much like mine. Their struggle, abandonment, loss, abuse, emotions, all are like mine. I began to feel less isolated.  I had a huge understanding of this today. I have been reading a mother’s blog over at  Her daughter was sexually assaulted. She responded like every  mother should have responded. She did everything humanly possible to give her daughter unconditional love, support, a safe place to express her emotions, a safe place to heal and recover. She fought for her daughter and is still fighting for her. Her daughter matters and she is making sure her daughter knows that. She did just what I would do for my daughter. My daughter is physically ill and has been for almost 4 years now. My heart is broken over her illness. My day revolves around how to make her more comfortable, loved, safe, fought for. This is just for an illness. I know the mother at tryingtimes hurts in her soul when her child is suffering. I hurt in my soul as my child suffers. A mother’s love should be so profound. I read the blog at tryingtimes and I thought about my own feelings toward my daughter and it hit me like a ton of bricks. My mother didn’t fight for me. My mother didn’t embrace me. My mother’s soul is not suffering over me. If it were, she would be laying next to me right now. But she isn’t. Do you know why?

My mother and my family put their pride before and above and beyond their hearts. Pride won. I did not. Not with them at least. When you are in the thick of it with your family and they have shrouded you with shame and blame and silence and persecution…YOU BELIEVE IT. I BELIEVED IT. I let them manipulate me into thinking I was the one with the problem. I was not. The abuser had the problem, my family perpetuated it by not putting me first. 

Therefore, today is Day One. 

My original family is NOT my tribe. 

Today is Day One of my new tribe. 

My original family can continue to live in their lies and their shame, but that cloak is no longer over my shoulders. I did not ask to be molested. I did not want to be molested. I do not want to have PTSD. These were things done to me against my will and not my choice any more than getting food poisoning would have been my choice. In my new tribe no one tells me to ” get over it,” or ” let it go,” because my new tribe understands that recovery from abuse is not linear and has no time stamp. They are there unconditionally. 

I looked at the amount of comments on my blog today. I looked at the views I had. For every negative remark my “family” ever made, there are 300 positive supportive comments on my blog. Our tribe, made up of survivors of abuse on wordpress, is far greater than the insensitive, inhumane, hateful comments from a family that only cares about keeping their secrets. They no longer carry any weight here. 

You all are my tribe. 

We have each other. We know each other. We understand each other. We know the struggles and the fight and the victories and the pitfalls and we are there unconditionally for each other. I see it every day on wordpress and I am blessed and full of gratitude for it. 

There are tons of support groups out there. I am claiming this day as Day One of our tribe on wordpress  support system. We are not in this alone. We are nolonger standing alone. We are nolonger on an island. We nolonger need to listen or even have the voices of those against us rattling around in our brain. 

Today is Day One of my new tribe. The first day of the rest of my life. May our tribe continue to be strong in its great number of fighters, voices which will not be silenced, and unconditional love as a force far greater than our enemies. May we stand strong together and know, we will never be in this alone again.