I got my MRI yesterday. I had to be put to sleep for it due to my cerebral palsy and spasms. Hopefully tomorrow we’ll find out that the mass they found when I was in the hospital for my bowel blockage is benign. Thank you so much for your prayers and patience with me in not staying on top of everything like I always try to do.
Remember! My book is limited quantities and only $10 with FREE shipping in the continental U.S.A. It makes a great gift!
I hope to write a post soon about the first Christmas and how there’s so much love from God, but in this world, joy and pain coexist and this is not punishment! We just live in a very broken world that Jesus came to restore.
Note: this was written on November 8, 2017 but I always want my husband to edit my posts.
“When Joseph’s brothers saw that their father was dead, they said, “What if Joseph bears a grudge against us and pays us back in full for all the wrong which we did to him!” So they sent a message to Joseph, saying, “Your father charged before he died, saying, ‘Thus you shall say to Joseph, “Please forgive, I beg you, the transgression of your brothers and their sin, for they did you wrong.”’ And now, please forgive the transgression of the servants of the God of your father.” And Joseph wept when they spoke to him. Then his brothers also came and fell down before him and said, “Behold, we are your servants.” But Joseph said to them, “Do not be afraid, for am I in God’s place? As for you, you meant evil against me, but God meant it for good in order to bring about this present result, to preserve many people alive. So therefore, do not be afraid; I will provide for you and your little ones.” So he comforted them and spoke kindly to them” (Genesis 50:15-21, NASB).
As many of you know, if you follow my Facebook page or Instagram account, I was hospitalized a couple of weeks ago for a bowel blockage and a mass was discovered on my CT scans.
I had to go to an oncologist even though they don’t think it’s cancer. Nobody suspects cancer. This doctor just knows how to go about this. The exam went well. The doctor was great at talking me through it. The nurses and my husband were also wonderful at talking to me and distracting me so I could relax as much as possible which isn’t easy with cerebral palsy and you’re nervous and having uncomfortable things being done to you.
I thank God for legal medical marijuana; my anxiety level would have been debilitating without it. However, I was very anxious nonetheless. My heart rate was 117 (a special “sign from Heaven from my mother-in-law) and then dropped to 115 so it helped me not get any worse.
The doctor showed us both CT scans and the mass in question.
He gently used his finger to probe the area and confirmed that the mass was still there. I felt a little pain when he pushed on it but I’m not sure if it was from the mass itself or from me spasming because of the probing. So I will have to get a MRI as an outpatient (with sedation due to my severe cerebral palsy and spasms).
Unfortunately, it’ll have to be done at the hospital so that the anesthesiologist can keep a close eye on me with my cerebral palsy and asthma, so an “open MRI” is not an option.
My husband can stay with me until I’m put to sleep for it and will be right back when I am done. I shouldn’t have to be so sedated that I will need intubation. As of now, the MRI scheduling is still being worked out, but I want to get it over with so they’re going to try to get me in sooner. I said any day but the 17th because I NEED ink therapy!
Tattoos really are one of God’s ways of bringing me peace and everyone at the shop have been very supportive.
We don’t know what the mass is but the MRI will tell us if it’s benign or malignant. The doctor said it is a soft tissue mass. After the MRI, he will determine if I need to have a biopsy. He’s trying to take it slow and not go invasive with me unless it’s necessary.
My friend with severe cerebral palsy said she has many benign masses from having multiple bouts of bowel blockage, so hopefully this will be just a benign mass, too. We’re trying to think positive and pray.
Walking through the cancer institute made me sad. All those people are fighting cancer. I’m NOT going to be one of them. Please Lord.
I wish this were over so I/we can keep working on getting back to a better place emotionally. Our anxiety has been really awful and I met with a Christian counselor. She confirmed that God isn’t doing any of this to us and that satan LOVES messing with us when we are down. She affirmed that everything we’re feeling is normal considering what all we’ve been through the past 2 years and God is right here even when we don’t feel Him. She’s walked this darkness too.
I can’t imagine what it must feel like for children who have been raised in Christian families where they are taught that God wants them hurt every time they are “bad.” Even though my relationship with God hasn’t been the best lately, I know He’s helping and comforting us.
God is using this for good! He turns everything that satan means for our harm into good. I don’t understand His ways but I know He is love and that life just happens. We must teach our children that God never hurts us!
Jesus wept. Jesus pleaded for the cup to pass from Him so He wouldn’t have to suffer and die on the cross even though He knew that that was what He was here to do and would go through with it because of His great love for us. Before He died, He cried out loudly, “My God, my God! Why have You forsaken Me?” It’s ok to feel anger, anxiety, pain, fear, loneliness, confusion, and despair. Jesus felt it.
May we teach our children that God suffers right along with us. He is a wonderful God Who comforts and loves us. He is not the Author of suffering.
Please keep praying for us.
On a happier note, my husband and I celebrated 19th anniversary of togetherness-dating and married years combined! It doesn’t seem possible! I’m grateful to God that He gave me a WONDERFUL guy who loves me NO matter what and CHOOSES to keep caring for me and loving me 24/7!
About a week ago I got my beautiful child abuse awareness ribbon tattoo. It came out so much better than I imagined!
It’s serious but I wanted something to give hope and the flowers do just that! I honestly think it’s the best child abuse awareness tattoo I have ever seen. I’m very grateful to my tattoo artist for coming up with it! Please see my other tattoo posts on my getting tattoos with my severe cerebral palsy.
Child abuse is 100% preventable! Sadly, many pro-spanking advocates try to claim that spankings prevent abuse but any type of hitting is abuse because it leaves marks that are not always visible. Plus, if one believes she/he can inflict pain on another human being, he/she will.
Research also shows that spankings usually increase in intensity, putting the child at a higher risk of being abused.
Then there’s the emotional and verbal abuse that often goes with the physical abuse, like telling the child that “you made me do it.” Or that “you deserve it.” Basically putting the child down in any way is verbal and emotional abuse. The child never makes one do anything. This is victim blaming.
Finally, there’s sexual abuse and sometimes this occurs alone or with the physical abuse because, for some, spanking children is sexually arousing which is absolutely disgusting.
I believe that we have to educate people to get them to see that children are unique people. Understanding child development is crucial for stopping child abuse. And allowing corporal punishment with children does not decrease child abuse! And one should never say he/she is against child abuse when he/she is advocating for corporal punishment.
It shouldn’t matter how old or big someone is, he/she should be protected from having harm inflicted on him/her by another person. It should not be left up to parents concerning how much pain can be inflicted on their children because “children can be subjected to an incredible amount of pain and suffering before our perception of parental prerogative changes to one of parental abuse” (Quinn, 1988, p.19).”
While April is child abuse awareness month, every day children are being abused by the very people who are supposed to care for them. I got my child abuse awareness ribbon tattoo to remind myself why I keep fighting for children’s rights even though it doesn’t always feel like I’m making a difference. It will also make the public aware of child abuse all year long.
Reference:Quinn, P. E. (1988). Spare the Rod. Nashville, TN: Abingdon Press.
This post may be all over the place but it’s based on things I have experienced this week. It was a rough week as May 2nd was the one year anniversary of my dear grandpa going Home. I have really struggled with his passing. He and I were extremely close and he was a wonderful grandfather who never intentionally hurt me.
Since my family has not had any “official” services for him yet and I won’t be able to go to them due to financial issues and a cat who has chronic diseases and is not yet ready to die, I had my own private funeral service on Tuesday May 2nd that included getting a beautiful tattoo.
I kept thinking “goodbye grandpa” during the tattoo which is on my upper right arm. The tattoo came out perfectly! Parts of it hurt like heck as the inside of one’s arm is much more sensitive, but my tattoo artist and my husband encouraged me during the tough parts and I breathed and laughed my way through it. I cried when it was done.
I’m not letting go but I finally feel so at peace that he is physically gone. I miss him and my mother-in-law so much, but I just couldn’t get comfortable with Grandpa being gone until until I got this memorial tattoo. Plus, he deserved a detailed tattoo. I LOVE my first tattoo which is for him but I was feeling guilty that everybody else has detailed tattoos and he didn’t. So now that I know I can get detailed tattoos, I’m happy I got one for him and the jacket that was his. She made it look like a watercolor.
However, I have been experiencing some things that prove how important respect is. I haven’t felt very respected and that has made me lash out. I didn’t repay evil for evil, but I could have done better.
When adults and children don’t feel respected and heard, it makes them angry. That’s why children usually act out. They need connections and respect. But it is so hard when you’re doing your best to be respectful and the other person doesn’t respect you. Children don’t mean to be disrespectful as they are still learning how to respect. But adults should know better.
I also feel like, based on my own experiences as well as observations, people of all ages tend to want to control and manipulate others that they feel are weaker. These people usually have emotional problems that make them need to feel powerful and in control by manipulating the weaker person.
We see this all the time with the parent-child dyad. The parent finally has someone they can control and manipulate after they were controlled and manipulated as children. They may be doing it unconsciously, but they do it nonetheless. Others are fully aware of what they are doing.
But another group that is often controlled and manipulated, sometimes even by family, are people with disabilities. I have severe cerebral palsy and I often feel like people don’t respect me. No matter how old I get, I often get treated as a child. Of course, anyone who knows my story knows that I was physically, verbally, and emotionally abused by my late dad. I was also emotionally abused by my school aide.
In addition to dealing the my grief of losing my mother-in-law and grandpa as well as dealing with my beloved kitty going downhill and other life stresses, I have felt very disrespected. Trying to have boundaries and protect myself while remaining Christ-like is not easy.
Of course, this makes me think of children. We need to respect their personal boundaries as we set our own boundaries with them. It is such a helpless feeling knowing that someone you love is trying to control, manipulate, and make you feel guilty for something that you didn’t do. I’m 35 and I’m really struggling with it and I don’t always handle it as well as I should. It’s no wonder that children have meltdowns and anxiety and feel so out of control when we try to control, manipulate, and shame them. I can relate so much to the feelings children have.
I am at peace with the loss of my grandpa and I am thankful for that. At the same time, it comes to light that we all need to be respected by the people we love no matter what our age is. I don’t believe that elders deserve respect just because they are older. I believe respect is earned. It must be mutual. It cannot be forced. If it is forced, it leads to strong resentment.
I guess that is my mishmash of thoughts. I hope it helps someone else dealing with similar things. I also hope it helps parents to see how important it is to respect their children. Only through respecting our children will they learn to respect others.
For Valentine’s Day I surprised my husband with a beautiful tattoo that symbolizes our love and our Christ centered marriage. I got this tattoo on my lower left arm. This was my first arm tattoo, so I was a bit nervous about how it would go with my spasms due to my severe cerebral palsy.
If you have been following me for a while, you know that this is my fourth tattoo. My mom was here again but after she helped us figure out how to strap my arm down tightly, she was able to enjoy watching her daughter get another detailed tattoo.
I feel like I need to write about my tattoo experiences because I know I went searching for other people with severe cerebral palsy who had successfully gotten tattooed when I first made up my mind that I was going to do it. I needed to know that others like me were able to do this. So I am putting my experiences out there for anyone else that is like me and wants tattoos.
Plus, there’s always an element of getting a tattoo that relates to parenting and respecting children which is something I am obviously very passionate about.
To read about my first three tattoo experiences and how they relate to parenting, click here, here, and here.
For this tattoo, I took the same medications as always for my spasms and we strapped my arm down to my arm rest of my wheelchair in two different places. Then my husband held my hand down quite tightly. My tattoo artist is a miracle worker and did an excellent job! While there was slightly more movement with my arm than my legs, within twenty minutes my body stopped reacting so much to the needles and I was fine.
My beautiful tattoo for my husband symbolizing our love and Christ centered marriage. The lettering is our special way of saying “I love you!”
Since I had to be strapped down and held down again for the tattoo, it got me thinking about respecting children’s bodies and teaching children consent from birth. We’ve all seen it and maybe even have done it. You see a cute baby and just have to touch him/her. But what if the baby really doesn’t want to be touched? This is especially true if you’re a stranger.
Let’s face it. We don’t respect children’s bodies.
Even before they are born, many people think its okay to dismember the baby’s body if the mother doesn’t want the child.
Then after birth, infants are touched, poked, tickled, squeezed, scooped up, gently pinched against their wills.
Then there’s the issue of corporal punishment. Sadly, many pro-spanking advocates tell parents to even sit on the child to spank/hit him/her. Even when children submit to spankings, they are being forced to do so out of fear, guilt, not wanting multiple spankings, and needing acceptance from their parents again. But they really don’t have a choice as they learn that their parents will make them submit.
Even older children are touched by complete, albeit well-meaning, strangers against their wishes.
Here’s a recent story from my dear friend, Meagan Longest, about an experience with her daughter at a store:
“An old man patted Wynnie at the grocery store today. She was holding onto the side of the cart. She looks up at him, almost cries and then runs to me at the back of the cart.
Wynnie: He touch me mom. Whyyyyy?
Me: I know, honey. That’s not okay.
Wynnie: That’s MY body, mommy.
Me: You’re right. It’s your body and no one should touch it without YOUR permission (While giving an evil eye to the old man and his daughter who was starting to get pissed).
I almost lost it.
Moral of the story- start teaching consent at birth. And don’t effing touch a child without their permission.”
Sure, that old man probably didn’t mean any harm, but in today’s world, we just never know. And how would you feel if a stranger patted you out of nowhere?
I guess I understand this more than some people do because well-meaning people get in my personal space and touch me without my consent. Due to my very slurred speech, I can’t just say, “Please don’t hug me.” “Please move out of my face a bit.” It’s very uncomfortable and I just sit there and deal with it so I don’t hurt people’s feelings.
The reality is that we all have the right not to have our personal spaces invaded by anyone without giving our consent. We need to respect each other’s bodies!
You may be asking, “What about needing to restrain children for care and/or medical procedures?” When a child is given shots, I strongly believe that they should be held in their parents’ laps. There’s never a reason to hold a child down on a table for shots. If your pediatrician doesn’t encourage you to hold your children on your lap for shots and even other simple procedures, then please find another doctor.
As far as giving care, if you must hold them against their wills, always talk to them about what you’re doing and why. Validate their feelings. Say, for example, “Oh I know you don’t like me holding you right now but we have to get your diaper changed. Can you help me by lifting your bottom?”
It helps to try and make sure the child is ready for the transition into care. It also helps to be playful about it when you know your child may resist. The key is teaching children that you respect them and always try to wait for their consent before moving forward. Even for newborns, this can be done by telling them before you pick them up and waiting for some clue that they are ready to be picked up. Moving slowly with infants also helps to teach them consent and that we respect them. Please see this post for more information about respecting infants.
As children grow, it’s so important to teach children that no one should ever touch them without their ok. Even people they know should always ask before touching them. It’s just basic respect. We invite people in and out by our body language most of the time, but children are not skilled at this and many adults ignore them anyway, so allowing children to say, “No!” is very, very important!
Also, teaching children to respect others is equally important. Teaching them to not touch someone that doesn’t want to be touched helps them to respect others.
The majority of sexual abuse and assault cases happen with people that children know! This is extremely scary! If children are taught to obey their elders no matter what, it’s really setting them up for potential sexual abuse and assault. We can’t allow this!
If people don’t understand why you are allowing your children to give or not give consent, just explain that you want them to have control over their own bodies. Tell them that you don’t just let people touch you, so why should children have to allow people to touch them when they don’t want anyone to touch them?
Children are human beings and deserve respect. I consented to being strapped down for tattoos, children should have the power to consent to being touched. It’s about respecting each other’s bodies and personal space no matter what the age is.
On January 27th I got my third tattoo which is of my beloved first kitty, Sara. It was the ten year anniversary of her going Home. I got Sara when I was about nine years old and lost her when I was 25 years old. This was the original tattoo that I had been wanting since soon after she went Home.
I made it through the tattoo with flying colors and took the same medications as I did with my last two tattoos in order to slow down my muscle spasms. See here and here about my first tattoo experiences. Again, my mom was so excited and proud of me. It’s funny how even though I am 35 years old, I still need my mom’s approval and acceptance! It truly means a lot to me!
My beautiful Sara tattoo!
I have been thinking a great deal about love and acceptance with everything going on in both my world and the world in general. My husband and I no longer attend church because we’ve never found one that the people totally accepted us. Some people have and we are still friends with them, but many people assume that I am mentally disabled and talk to me like I am a child, well actually, worse. They are often patronizing to me. It drives me crazy! Of course, as I said, there are some who can see past my disability, but many can’t even after telling them that I have a Master’s Degree.
So when my friend, Jackie Heim, posted the following on her Facebook page, I felt sad but could really relate.
“I read that between 80-90% of parents with special needs kids do not attend church. There is no source for my information, so I can’t verify this. But, I believe the number is high (for sure higher than it should be). I’ll take my son anywhere – the library, the mall, the beach, swimming, a museum, a park, the grocery store, Disney World – anywhere but church. I can handle the comments and looks from strangers. Not being able to talk and not understanding everything said to you is a frustrating disability. From Christians, the one group of people who I want support from as as special needs parent, I get judgmental comments. Burdens of expectation concerning my son’s behavior are thrown on my shoulders. And, always by people who are doing nothing to help me with this burden. I have experienced this ever since dealing with my first language delayed child over a decade ago. It hasn’t gone away. And, the third time around I am dealing with an even more severe delay. So, I just don’t go. It’s easier that way.”
The very people, the Church, who are supposed to love and accept you for who you are, don’t! They want children to be these perfectly obedient robots and if they’re not then you need to spank/hit them. They never stop to think that the children may have special needs or they never try to understand about child development. To be so judgmental to parents and children is so wrong and un-Christlike.
I see the world becoming worse and worse which the Bible tells us to expect. But what I have been struggling with for years is that I didn’t realize that it would be the Christians that are often leading the way to destruction. We’re supposed to be leading people to the Light. I just don’t see that happening.
I believe that this is due to church doctrine. Church doctrine often appears to be aligned with the Bible, but when you look deeper, you see how much it strays from the Bible. Jesus was constantly with sinners and making them feel loved and welcome. In fact, people would run to Jesus when He was in their town!
“When they had crossed over they came to land at Gennesaret, and moored to the shore. When they got out of the boat, immediately the people recognized Him, and ran about that whole country and began to carry here and there on their pallets those who were sick, to the place they heard He was. Wherever He entered villages, or cities, or countryside, they were laying the sick in the market places, and imploring Him that they might just touch the fringe of His cloak; and as many as touched it were being cured” (Mark 6:53-56, NASB).
It was always the self-righteous Pharisees and the teachers of the Law that scoffed, badgered, and ultimately crucified Jesus. Regular people just wanted to know more about Him and to understand Him.
Not long ago I posted on my Facebook personal page that I have recently found myself relating more to the tattoo culture than to the Christian culture. As strange as that may sound, it’s because the tattoo culture is so real, loving, and accepting! They are so Christlike and they don’t even know it. That is so scary and sad that a tattoo shop does what the Church ought to be doing.
We are born with a deep need for love and acceptance. Children absolutely crave it from their parents and never outgrow it. Jesus put us here to love and accept people in order to lead them to Him. There are a lot of people out there right now, young and old, of different races and ethnicities, and of different religions, and of all sexual orientations that are craving for love and acceptance! May we do our best to stop judging and begin loving and accepting the way Jesus does!
A week ago I got another tattoo for my mother-in-law. Again, due to how I have been treated throughout my life because people always underestimate me and have even put me down, I felt the need to prove that I could handle a much more detailed tattoo. See here to read about my first tattoo.
Thankfully, some of my family, including my mom and my husband, have always been supportive of me. My mom wanted to be here to help with my second tattoo, but she lives in Kansas. I missed having her there as she is a tattoo person too.
I am beyond happy! I did even better than last time. My tattoo artist began easy by retouching my Mickey. Then she gave me 3 fonts to choose from for the “big hug” that I added to my grandpa tattoo, and I immediately picked the middle font. We decided to put it at the top of the grandpa tattoo! That went so well! We were a bit worried about doing font with me due to my startle reflex that I have no control over. The significance of adding “big hug” is that from the time of AOL instant messenger, my grandpa and I chatted every week if at all possible since it’s very hard to understand me over the phone as my speech is very slurred because of my severe cerebral palsy. So at the end of EVERY chat, we’d say, “Big hug! I got mine! Here’s one back.” It satisfied us until we got to see each other again and get the real hug! Oh my, I’m crying again. Now “big hug” is forever on me and I will NEVER forget that very special thing between us until I see him again and finally get many big hugs for eternity! I love you, Grandpa! So now my grandpa tattoo is complete!
Then it was onto my tattoo for my beloved mother-in-law. The cardinal is my sign from her in Heaven. She was like my second mom and accepted me into her family! We were very, very close. Her birthday is on Halloween so my husband came up with the jack-o-lantern idea. Then my artist added the harvest moon and hazy clouds. I was nervous about the details, but it went better than I could have ever imagined!!
Eventually my startle reflex quit. I took the same medications as last time to slow down my spasms. My husband strapped me all up in my wheelchair, including my arms since we didn’t have my mom there to help as we did last time. My husband sat on the floor and held my leg. I can’t believe how well it all went.
To me, the shading hurts less than the outline. And my artist and my husband talked the whole time and I talked some, but I didn’t want to move too much. She said that I really did a great job! I only took one break to get a drink of orange juice. Everyone loved it at the shop! I am so proud of myself for doing so well with the pain, but I ended up getting used to it. And the conversation was so cool and interesting that it kept me distracted.
I’m always second guessing myself in everything that I do. The voices that told me throughout my life that I would never amount to much are always somewhere in my head despite my, thankfully, strong will. This is why I hate that many Christians believe that they must break their children’s wills. They are really doing a great deal of harm to their children because it often takes a strong will to do what is right in God’s eyes and not what others think is “good.”
I again hugged me tattoo artist afterwards! My tattoos are the most beautiful things ever! It was sore like a sunburn but it was worth everything! It all took 2 hours! I was tired but so excited! Another huge accomplishment for me! Thank You, Jesus! It felt so good walking out into the cool air when we left the tattoo shop because I was hot from all that!
I sat here at home for a while with my sweatpants down and just looked at it!! I cried! There is so much symbolism behind these tattoos. Symbols of love and acceptance by family members. Symbols of remembrance and the hope of being reunited with them some day thanks to Jesus’s amazing gift of grace and forgiveness! Symbols of being able to overcome, with God’s help, the negative messages that were put into my head from the time that I was a small child.
My next tattoo is January 27th to get my first kitty, Sara. I’m doing it on the 10 year anniversary of her going Home! I’ve wanted tattoos for so long and never thought it would work with me but I proved that wrong!! I feel like I can now get through this horrible grief because I got through the tattoos with flying colors!! Thank You, Jesus!
Children need to be taught how to believe in themselves and to trust God. Only through gentle discipline is achieved. I will probably always struggle with believing in myself and totally trusting God no matter how much I continue to overcome. I wish all children could have what I didn’t growing up.
I just got my first tattoo last week. I was so nervous because I can’t control my muscles at all due to my severe cerebral palsy and I hate pain. But I am now the proud owner of a tattoo in honor of my grandpa who went Home in May.
I know some people believe it’s against the Bible to get a tattoo but when you study the cultural and historical context of the Bible, pagans were doing it for other gods. Plus, it wasn’t sterile or at all like it is now if you go to a reputable tattoo parlor. Here is a great article about the cultural and historical context of the Bible when it comes to tattoos.
I felt God with me the whole time and He put the verse, “I can do all things through Him who gives me strength” in my head that morning and while she did it. Plus, I feel closer to my mom having a matching tattoo with her! The whole thing has been wonderful and all good things come from God! And my tattoo comforts me every time I miss my grandpa.
I have wanted a tattoo for years but didn’t think I could stay still for it, especially since pain and anxiety make me move more. So the first thing I did once I decided I was definitely doing this was to Google “people with cerebral palsy getting tattoos.” I was very encouraged to find many people with cerebral palsy have tattoos. Even so, I was still anxious about whether or not it would work for me.
After researching this thoroughly, my husband and I went in August to meet with a tattoo artist at our local tattoo parlor which came highly recommended. I was very nervous when we went because I figured that they would see my involuntary movements and reject me. I am terrified of rejection because I have been rejected so many times throughout my life. Rather, I was met with total acceptance!
The guy we met talked to me like everyone else and listened when I talked. That means A LOT to me since some people look at my severe disability and assume that I am mentally disabled. And my speech is very slurred making it difficult to understand me if you don’t know me well.
I immediately told the tattoo artist that I can’t control my muscles so I was worried if it would even work. He asked where I wanted the tattoo and I had him feel my thigh so he knew how the muscles would contract. Of course we explained that we’d make my feet straps tighter and that my mom would be here to help hold me. I also took medicine to help control some of my spasms.
I was so excited for the next three weeks. I was also very nervous because even though the artist and the shop owner didn’t think there would be any problem with doing a tattoo on me, I was terrified that I would fail.
Ever since I was very young, I have been terrified of failure. As you can read in this post and this post, many people would look at me and not believe I could do things. I learned from a very early age that I had to always prove myself to people. Plus, I was verbally abused by various people growing up and I saw how my dad reacted angrily when my older siblings didn’t live up to his expectations. I still feel like this today. So I felt like I had to prove that I could handle the tattoo.
I can’t stress enough the importance of building our children up. They need to learn how to believe in themselves. This does not mean we make them proud as humility is a virtue. But humility does not mean feeling like you never measure up or always have to be afraid of failing. Humility means that you put others before you and you don’t think you’re better than everyone else. But feeling poorly about yourself is not humility.
Nobody should have to struggle with anxiety like I do due to how I was treated as a child and throughout my life by certain people. Thankfully, my husband and mom had complete faith in me as did many of my friends.
Well, the night before my tattoo appointment my artist who was supposed to do my tattoo contacted us because something came up and he couldn’t do it the next day. Yes, I had a little panic attack but he made sure someone else could do it. The lady we got was wonderful. She has done tattoos on people with cerebral palsy and multiple sclerosis. That helped put me at ease.
The day of my tattoo, I was so nervous. Again, I was afraid that I would fail. That the pain would be too much for me and I would move too much. But Candace immediately put me at ease. She was quickly able to figure out my spasms and work around them. Every time she initially put the needle down, my startle reflex would make me jump. But once that happened, she knew to keep going and I was fine. There were a few “ouch” moments where I made my husband talk more and I had to distract myself more but it wasn’t bad. I now have a BEAUTIFUL purple Mickey Mouse outline and a BEAUTIFUL red Corvette outline in honor of my dear grandpa! She was gentle and it was over before I knew it! I hugged her as I was so happy with her work.
The significance of my tattoo: Mickey Mouse is because when I was 15, Grandma and Grandpa took me to Disney World over my Christmas break. We saw the Christmas parade, rode on rides, and they arranged a private meeting with Mickey Mouse and Minnie Mouse and Goofy and other characters. I believe in signs from people in Heaven and ever since Grandpa went Home, I’ve seen Mickey everywhere despite Hello Kitty being more popular than Mickey nowadays. The Corvette is because my grandpa LOVED Corvettes. He was never without one since I was born. He was a mechanic and worked for BF Goodrich and loved working on cars. So he would buy Corvettes, fix them up, enjoy them, then sell them. My mom is a Corvette owner after 50 years, so getting the red corvette honors him for both of us AND is fun to have matching tattoos with my mom!
I have a major sense of accomplishment and I’m grateful to God for helping me through it! I loved watching my mom get her matching Corvette in honor of Grandpa who was her dad. And whenever I miss my grandpa, I just look at my tattoo!
I don’t know if I will ever be free from my fear of failure. But I do know that God wants me to use my pain to help others. Children deserve nothing but respect as do people with disabilities. Just because I am severely disabled does not mean I can’t live a “normal as possible” life. We just need more assistance. If you are reading this and want a tattoo that is meaningful to you and you’re disabled, I’m living proof that you can do it!
We can do all things through Him who gives us strength!
My tattoo in honor of my dear grandpa (April 1, 1928-May 2, 2016).my mom’s and my matching tattoos.
***Special note: I wrote this over a week ago but because I take this matter so seriously, I had some peers read over it. I have edited this post a few times and have rewritten things. I hope my love and my own story touches all who read this.***
I am in tears as I write this. I didn’t sleep very well last night due to someone I thought I knew and I thought he/she knew me calling me a “racist” for not jumping onboard with the Black Lives Matter movement. I am also losing friends for this reason.
In my original post regarding the recent two police brutality cases and cop killings, I said that “all lives matter.” You can find the link for the post and my follow-up post a little later in this post. When I shared my “All Lives Matter” post on Facebook A.K.A. “Hatebook,” I came across a meme claiming that the phrase “all lives matter” was created by white supremacist groups in opposition to Black Lives Matter. I should have known better and researched it before writing my follow-up post where I apologized but explained that I truly mean it when I say all lives matter. But my emotions took over and I didn’t investigate it.
After calming down, my husband looked it up and discovered that “All Lives Matter” was NOT created by white supremacist groups! He made the observation that wouldn’t white supremacists say, “White Lives Matter?” After all, they hate everyone who isn’t a white Anglo-Saxon Protestant — “WASP.” Yes, we know them best for going after black people, but they hate everyone else too. Sure enough, there is nothing to show that “all lives matter” is from a white supremacist group. In fact, black people say it too.
“In the discussion surrounding “Black Lives Matter”, the slogan “All Lives Matter” is sometimes used as an alternative. Its supporters include Senator Tim Scott. According to an August 2015 poll, 78% of likely American voters said the statement All Lives Matters was “close[r] to [their] own” than Black Lives Matter. Only 11% said the statement Black Lives Matter was closer. Nine percent said neither statement reflected their point of view” (https://en.m.wikipedia.org/wiki/Black_Lives_Matter#.22All_Lives_Matter.22).
What’s even more interesting is that U.S. Senator Tim Scott is a black man! As my husband and I further investigated this in order to be absolutely certain that the phrase has nothing to do with any white supremacist groups, we found the following article from the Washington Post about a student that left a note on a professor’s door in the College of Law that read “All Lives Matter” which states the following:
“Then two members of the U.S. Commission on Civil Rights — speaking as individuals, not for the commission — wrote to the dean.
“The response of American University faculty and staff was nothing short of Orwellian,” Gail Heriot and Peter Kirsanow wrote, in part. They also wrote:
“Nearly sixty members of the law faculty and staff signed a letter calling this an ‘act of intolerance,’ because it refers to ‘all lives’ rather than only ‘black lives.’
This makes American University look foolish.
Even sillier, the letter calls this obviously true statement — that the lives of all members of the human species are valuable — ‘a rallying cry for many who espouse ideas of white supremacy.’
While we know that President Obama has stated that ‘all lives matter,’ we are not personally aware of any cases in which white supremacists (a rare species these days) have made that statement.
‘Equating a student making a legitimate and utterly unobjectionable point with a white supremacist is nonsensical.’
(Obama, in explaining why he does not think the phrase ‘Black Lives Matter’ is offensive and that he does not think the protesters are suggesting other people’s lives don’t matter, said in October, ‘I think everybody understands all lives matter’).
By phone, Heriot, a professor of law at the University of San Diego, said that when she saw the letter from the professors, ‘My reaction was that this was — quite outrageous. I just wish that people in positions of authority, like members of a law-school faculty, would try not to make things worse by engaging in name-calling of this kind.'”
If you Google “all lives matter,” the only thing you’ll see is people arguing about it and criticizing people who use the phrase. SAD!! An inclusive phrase being ripped apart. Anyway, note to self: always research stuff before taking it as “fact” when you see it on Facebook.
I want to make it very clear that I support all black people. All my life I have been aware of how unfair the world can be by judging people by appearances in the way some whites will look at a person’s skin color and falsely and automatically assume bad things about them. ButI just can’t support the group Black Lives Matter. I don’t believe that they’re representatives of the race, and sadly, they are hurting race relations through their behavior. Many black people do want peace and love. They even peacefully protest. However, Black Lives Matter seems to draw unstable radicals who cause a great deal of death and mayhem. I also feel that Black Lives Matter dismisses other minority groups that have been oppressed and horribly treated throughout history and into the present. What about the Jews and the Holocaust? Recently anti-semitism has come back. What about the Native Americans who were murdered and now live on reservations?
To understand where I stand with the recent police brutality cases and the cop killings, see here and here.
The reason why I am so upset that I was called a “racist” is because I clearly condemned all violence and all racism and bigotry in my posts! Also, this person said that I have “white privilege.” To be honest, I don’t feel like I have much “privilege” at all because my family and I have had to fight for everything I need and I am still fighting. My life, while blessed in comparison to many, is anything but easy.
Also, I have regular encounters of prejudice against me based on my severe disability. Webster Dictionary defines the word “prejudice” as:
“1: injury or damage resulting from some judgment or action of another in disregard of one’s rights; especially : detriment to one’s legal rights or claims
2a (1) : preconceived judgment or opinion (2) : an adverse opinion or leaning formed without just grounds or before sufficient knowledge
b : an instance of such judgment or opinion
c : an irrational attitude of hostility directed against an individual, a group, a race, or their supposed characteristics” (http://www.merriam-webster.com/dictionary/prejudice).
Prejudice often leads to discrimination which Webster Dictionary defines as:
“1 a : the act of discriminating
b : the process by which two stimuli differing in some aspect are responded to differently
2: the quality or power of finely distinguishing
3a : the act, practice, or an instance of discriminating categorically rather than individually
b : prejudiced or prejudicial outlook, action, or treatment <racial discrimination>” (http://www.merriam-webster.com/dictionary/discrimination).
Sometimes we must make sure something is good by discriminating whether a fruit is fresh or not. But when it comes to human beings, we need to stop being prejudiced and discriminatory based solely on their outward appearance.
And I have never understood why white people think they are better than others simply because they are white. This problem with any and all people thinking they are supreme over others just confuses me. Of course, it’s especially apparent with children. Many adults of all races, ethnicities, and religions look down upon children and treat them as property.
Andblack people are rightly upset because throughout history other people have been prejudiced against them and have discriminated against them based solely on their skin color . This ongoing prejudice and discrimination is SO WRONG!
However, before anyone calls someone like me a “racist,” you need to walk a mile…Oh wait, I can’t walk, so it’s more appropriate probably to say… Roll a mile on my wheels. Let’s look at my reality for a moment since I have been looking at everyone else’s.
1. When I was born in 1981, I didn’t breathe for forty minutes. The doctors wanted to give up on me, but my dad almost had to punch the doctor so they wouldn’t stop working on me. It literally saved my life. I am a miracle.
2. Even after I was stabilized, the doctors still didn’t think I would live. My parents kept fighting for the best medical care I could get.
3. When my parents got me home and started raising me, they quickly saw that I wasn’t developing as a typical baby should. I rolled over and army crawled but I couldn’t sit up, crawl, or walk. I couldn’t always hold my head up in certain positions. I couldn’t control my arms and legs much. My parents had to go from doctor to doctor to figure out what was “wrong” with me. Finally at around 18 months, I was diagnosed with Cerebral Palsy. After the diagnosis, they said that I wouldn’t do much.
4. I believe that some people looked at me and assumed I wouldn’t do much with my life and told my parents to just put me in a “special school” or just “put me away” as institutionalizing children and adults with disabilities was still happening in the 1980s. Heck, it’s still happening today in many parts of the world. Thankfully, my parents kept me and helped me to do the most I physically could such as hold my head up as much as I could, talk even though it was slurred, and use my hands a little. They saw that I wanted to do stuff and helped me to do things. They taught me that I could be like everyone else despite my severe cerebral palsy.
5. My family was in the working class. Both of my parents had to work to make ends meet, which meant fighting for all of the services and equipment that I needed that they couldn’t afford to provide for me. I often heard them fighting the school district for a full-time aide to be with me at school to both help me physically with my schoolwork as well as take care of all of my physical needs at school. They also had to fight the school to make sure I received the physical, occupational, and speech therapy that I needed.
School officials would look at me and assume I wasn’t able to even be in the regular classrooms so I had to prove that I could be in a regular classroom instead of in the secluded special needs class. In third grade I was finally mainstreamed into the regular classroom full time.
Then my parents had to fight with my teachers to cut down some of my homework or give me extra time to get it done because it took me longer than typical children to do my homework either by dictating the answers to someone or to type it up when I taught myself to type with my nose at the age of nine.
My parents always had to fight to get me the adaptive equipment I needed such as wheelchairs, “potty” chairs, and bath chairs because the insurance companies never wanted to cover any of that stuff and it is very expensive. All this fighting went on my entire childhood. Nothing came easily for me!
In eighth grade, my parents fought for me to get my first speech augmentation device. Again, these are very expensive and insurance companies don’t cover these most of the time.
6. Because everyone has always looked at me and assumed things about me, growing up, I never had more than a few good friends. And sometimes others would make fun of me if they didn’t know me. In junior high and high school, making friends was even harder because I wasn’t “cool” and couldn’t go out like everybody else did. Boys– forget it. My husband was the first and only serious relationship I’ve ever had! Nobody wants to be with the “disabled girl.”
7. Being in high school was even worse because on top of the friend and boyfriend situation, even my personal aide looked at me and assumed the worst about me. She told me that I would never go to college, get married, have the career I wanted, have children, and was destined to live in some group home.
8. Throughout my entire life I have always been the person with the most severe disability in pretty much every situation. I am the “Guinea pig” because I was so physically disabled that teachers and others didn’t know how to deal with me. But I always enjoyed proving people wrong. I truly hope that I have helped pave the way for other people with disabilities to be successful.
9. This means when I went to college, some of the professors had their doubts about me, assuming that, because of my appearance I couldn’t successfully complete the early childhood education program. Again, I had to prove myself and work hard to be at the top of my class, which I did throughout college and graduate school. I also had to prove that with the right help, I could work with children. They quickly saw that the children warmed right up to me.
Now you might think I’m done with fighting since I am married, educated, and an author. If so, you are absolutely wrong! It’s been two and a half years since I graduated with highest honors from grad school and while fellow graduates of all races and ethnicities have their careers and families firmly established, no matter how hard I try, I haven’t been able to to break through closed doors in order to firmly establish my career so that my husband and I have income and can have a child before we get too old.
I can’t say if any of this is due to discrimination or not but obviously prejudice has played a major role. I mean here’s what happens at my book signing events:
I just started noticing that some people do avoid me at my book events. As a teen, that was the way it was because I wasn’t “cool” and “like everybody else,” so only those who took the time to get to know me hung out with me. This was extremely difficult for me as a teenager.
I had thought it had gotten better in college and grad school because most were happy to talk with me. But since my book has come out, I’ve had a number of book signings in my area with only a couple people showing up.
At first, I thought it was because my book is about gentle, respectful parenting. Corporal punishment is so ingrained in our society, especially Christian society, that it can be very difficult to get people to see that God never intended for children to be spanked/hit.
But, after a recent book event where some people seemed to go out of their way to avoid me, it became obvious that it is more than just the content of my book. I’m sure there are other reasons why some people don’t approach me. I do feel, after being more in the public eye, some are afraid of me or intimidated by me.
How does this make me feel? I’m fighting back tears as I type this. It hurts. It makes me angry. It makes me sick.
Christians, I feel, should be the most accepting of me. Yet, at a Christian bookstore, Christians seemed to go out of their way to avoid me. But, God is using my disability for His GLORY! I am not being punished. My parents are not being punished. God needs me exactly how I am to do His work for Him which happens to be advocating for children, the least of these. Read John 9 for a better understanding of how God can and does use people with disabilities for His glory.
Please come talk to me. Ask me questions. I love talking with people. I love answering questions. My husband is always with me to help people understand me. Please don’t go out of your way to avoid me.
This is an excerpt from the interview I did with my friend on September 1, 2014. Please click here to read the entire interview.
Why am I telling you all of this? It’s definitely not to get pity! I truly hate pity! But I want people to understand, especially the people who call me “racist” and “privileged,” to see that I know hardship all too well. I know what it feels like to have people look at me and decide things about me, negative things about me, just based on my outward appearance. While I don’t have to worry about being pulled over by a cop for no apparent reason just because I’m black and facing the subsequent possibility of being beaten or killed due to police brutality and/or racial prejudice, I know I will never know what it is like to be a black person. But that’s where it ends because I’ve been called names, I get stared at, I get avoided, I’m not where I would be in my life if I wasn’t disabled. Able-bodied people will never understand what it’s like to be disabled. Believe it or not, people with mental disabilities were used in slavery. If they weren’t useful, they were thrown away in institutions where care was not high quality at all. Due to this, people with disabilities had shorter lifespans.
I don’t feel “privileged” because money is very tight for my husband and me. We drive a 20-year-old van that is dying and unreliable but we can’t afford a new (to us) van that my wheelchair will fit in, and people had to pitch-in so we could afford to buy me a new wheelchair, for which I am very grateful! I don’t get welfare or disability because for some reason we don’t qualify for it. My husband stays home to care for me 24/7 as it is extremely difficult to get reliable help for me, which is why I work so hard to find my place in my field. Nothing comes easy for me.
Yet, I feel like I have been crying out and protesting to the world that #peoplewithdisabiliteslivesmatter all my life through the way I’ve been living and fighting to prove people wrong. I feel that if I were to instead scream that “People with disabilities lives matter,” and complain about how bad people with disabilities have it that it wouldn’t show the world they’re wrong about me. It would only turn people off. It may even make some angry and not want to help or get involved. It may even make unstable people want to hurt and murder us even more.
Children with disabilities are very likely to be abused. I was abused! Actions speak louder than words, and because people look at me and assume I have nothing to offer, I do my best to live my life in a manner that educates and inspires. I’m almost finished with a children’s book about my cerebral palsy to educate children on how to treat people with disabilities with respect. And I have done interviews with my friend to educate others about what life with cerebral palsy is like.
Another thing is that TV shows and movies rarely have people with severe disabilities on them. Usually it’s either someone with Down Syndrome, Autism, or a person in a wheelchair that has upper body control. Every other minority group is regularly featured in tv shows and movies which is great! But! Finally, this fall on ABC, there will be a show with a boy with severe cerebral palsy!!
What’s even better is the boy actually has severe cerebral palsy!! The show is called Speechless. I cried for joy when I found this out much like black people must have when finally they were featured in TV shows and movies. But wouldn’t you know it that some ignorant person already put down the show because it will “normalize” “the disabled” and not make us want to cure them. Hate and ignorance is everywhere!
As excited as I am about the new show Speechless, it’s also important for me to point out that I don’t focus solely on advocating for cerebral palsy. Anyone following me for any length of time knows that my passion is advocating for all children. And when I do share things about disabilities, it’s about all types of disabilities. I do not feel any disability is more important than the other.
No matter what your race, ethnicity, religion, sexuality, gender, age, or disability, if you group people together and label them in a negative manner, that is wrong. All are equal. All matter! All deserve to be heard! All need a voice! But let’s do it in a way that gets more people to listen and want to empathize.
So I do understand why blacks have had it with the fact that people will look no deeper than the color of their skin and assume incorrect things about them. Bad things. They will assume that they’re thieves, thugs, criminals, or worse based upon their skin color. But the way to prove the world wrong about their assumptions isn’t by yelling, rioting, killing, beating, insulting, and destroying property. Such behavior only serves to reinforce the negative stereotypes and inaccurate assumptions about black people.
Love and peace is how we prove people’s assumptions about us wrong and enact change.
I watched a tv show back in October 2015 that described the five primal fears of all humans. According to this article, the five primal fears are:
Extinction. This is the fear of death.
Mutilation. This is the fear of losing body parts or being physically hurt.
Loss of Autonomy. This is the fear of being physically disabled or not having control over situations.
Separation. This is the fear of being left behind or isolated or losing loved ones.
Ego-death. This is the fear of being humiliated or shamed.
In this post I want to focus on separation. Anyone following my blog or that has read my book knows that I don’t believe that fear is from God based on 2 Timothy 1:7 (NASB) which states:
“For God has not given us a spirit of timidity, but of power and love and discipline.”
Therefore, I think of these primal fears as more survival instincts. They keep us from putting ourselves in danger. They are God’s way of keeping us safe.
Separation is one of my major fears, or, I guess, survival instincts. It is extra strong in me. I have lost a lot of people throughout my life. Whether it was due to rejection or death or people moving away, the fact is loss scares me.
I have been on overdrive lately when it comes to losing people due to losing my mother-in-law, to whom I was quite close, in August 2015. So if a friend starts to back off due to life, I feel the road to rejection and loss coming all over again. I freak.
This is from the book, “Healing After Loss” by Martha Whitmore Hickman. This further proves our God given need for companionship especially during rough times.
I hate blaming my severe cerebral palsy on anything, but I must wonder if I would experience less loss if I wasn’t disabled. I would more easily make friends and could physically contribute more to friendships such as spontaneously meeting friends somewhere without having to plan it all out.
I was also physically, emotionally, and verbally abused by my dad throughout my entire childhood. Then he disowned me in my adulthood. That gets into separation instinct as well as ego death. We all need to feel valued and loved from day one.
Of course there is another major reason why some people’s separation instinct is on overdrive. Being left to cry-it-out as infants teaches children to expect separation and loss. The brain gets wired in such a way that instead of having a healthy survival instinct, it goes into overdrive. Then if the child continues to experience loss, that further increases their survival instinct and fear of separation and loss.
I must point out that separation anxiety in infants and toddlers is developmentally appropriate. Parents and caregivers can help children with separation anxiety by always telling the child when they will be back as well as always saying goodbye to the child instead of sneaking out. This helps children not be on high alert to make sure people won’t just suddenly disappear.
You know, God created us to need human and animal companionship. Therefore, a healthy separation survival instinct would be to recognize our need for relationships without always worrying about losing the people we love. When God saw that Adam needed additional companionship, He created the animals for him. Then when they weren’t enough, God created Eve.
Yes, God fills up a certain major need in us, but He knows we need other relationships on this Earth. I know that may be a weird idea for many Christians as the church teaches us that God is all we need. And indeed, there is nothing that can ever compare to God’s perfect, unconditional love for us. But if all we need is God, then why did He create us with a separation survival instinct?
This is why infants need us to respond to them consistently and respectfully when they cry or they will have brain damage that may not be apparent to the naked eye but will surface in some manner at some point in their lives. It will negatively affect every relationship they ever have.
I believe we need to cherish every relationship we are in and do our part in nurturing it.
Yes, some relationships must take priority over others. But God doesn’t want us walking away from relationships in which He put us unless they have become toxic. And our relationship with Him comes first as that is how we can make sure we are treating each other how He wants.
Here are some verses about the importance of companionship:
”Then the Lord God said, ‘It is not good that the man should be alone; I will make him a helper fit for him'” (Genesis 2:18, ESV).
“Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up! Again, if two lie together, they keep warm, but how can one keep warm alone? And though a man might prevail against one who is alone, two will withstand him—a threefold cord is not quickly broken” (Ecclesiastes 4:9-12, ESV).
“Having purified your souls by your obedience to the truth for a sincere brotherly love, love one another earnestly from a pure heart” (1 Peter 1:22, ESV).
“For the whole law is fulfilled in one word: ‘You shall love your neighbor as yourself’” (Galatians 5:14, ESV).
May we raise our children in a manner that will allow them to have a healthy separation survival instinct. May we also teach them to value all relationships and friendships–especially the one they have with Jesus. After all, Jesus is our friend.
Yes, companionship is vital to our well being and survival!
Disciplining With Gentle Firmness 