Here is a recap of Day 3 of Retesting Hunter. As you might remember from yesterday’s post, lots of stuff happened. So many delays, a co-vid scare, and a tick on his penis are the highlights. Mix in being hungry, exhausted, and frustrated and there you have our first (and only) 2-day stay at the hospital. Let’s talk OMS, shall we?
Opsoclonus Myoclonus Syndrome (OMS) is difficult to diagnose. It is easier when a child has a paraneoplastic type or a neuroblastoma. Yet, being idiopathic is just a shot in the dark. Sadly, Vanderbilt has not really done us well, in our opinion.
The 1-day screw-up or the 2-day delay…was that God saying “stay home?” Nah, God hasn’t spoken to me in a while (in my opinion, not His). I press on, determined to get an answer with one of my many phone calls or messages.
We get there and most goes smoothly. Get to our room and things start falling into place. Nurses come in and do their thing. We get the IV going, tests begin running, questions being asked. You know, all the things. The co-vid test was a NIGHTMARE, but we got it done.
Is He Speaking Louder?
At 5 am, the neuro walks in to inform me that Hunter tested positive for co-vid. I told her that it had to be wrong because we have been nowhere. He has no symptoms. She said that it was positive and that we were being transferred to the co-vid unit.
They decided to retest him at 530 am. Fun, I know. Regardless of the outcome of that test, the aliens came in and whisked him down to the “red-headed stepchild” ward. I kid you not, that’s what people call it.
My mom called and said, “Brandi, can’t you just go home?” I told her no because we need these tests. That was my third warning and our second positive test.
In the Meantime
My family, back at home, are getting tested right and left. It’s a lot of people to get tested. Yet, once it was all said and done, everyone tested negative. It wasn’t surprising and I still questioned whether or not that the test was accurate.
Yet, we had an attentive resident who seemed to “see” me. We had a wonderful nurse who put Hunter at ease in every aspect. I decided that I would ignore all the warnings and second-guessing myself and we pressed on again.
Well, He didn’t just give me signs, feelings, phone calls, and such. This time, He just said, “leave.” The powers that be came in and said that there was nothing that they could do for 20 days. We should just go on home and come back.
That was loud and clear.
On Our Way Home
As I turned down the road to home, it began to pour down rain. My boy woke from a nap, it began to storm and the rays of the sun were shining down. I prayed for the Lord to give me a sign that all will be okay. I looked in my mirror and saw a HUGE double rainbow. It was glorious.
I had Hunter turn around and I told him the story of Noah and the ark. Hunter informed me that he knew all about the ark and the flood. We talked of salvation, the Holy Spirit, God’s promises, and such.
We turned on some praise and worship. Hunter was raising his hands and singing so loudly to each song. It warms my heart to know that he has been through so much and he still praises Jesus. I felt peace and warmth blow through my body.
BTW: Hunter and I tested on the 3rd and we are CO-VID FREE!
Today, geez. It started off with someone scaring the crap out of me at 5 am. I actually slept on and off between 1 and 5. Well, we are up now. Neuro said that Hunter tested positive for Co-Vid. There is some added fun.
Where on Earth?
I have no clue how this even happened. He has not been symptomatic at all. Honestly, he goes nowhere, so the people (my kids and husband) coming in and out of the house must have brought it in.
I asked for a day 2 retest and they did. Guess what? It was positive too. Now, we are on another floor, in complete isolation. We are still getting testing done, but he will be moved to the last on the list.
Lots to Do
He is supposed to have an MRI and an LP (Lumbar Puncture) today, under sedation. If you have sedation, you can’t eat or drink. He is hungry and thirsty which is going to make for an unhappy boy. Negative is now, he has to be last on the list.
His blood tests came back normal, except his iron is low. That is fixable. All the other doctors will be coming in today. *Some stranger is peeking in his window and waving. Quite creepy if you ask me.*
Also, a HUGE negative is that we are now being discharged because he can’t be under sedation for 20 days. Bloodwork was done, we got urine on him. The Rheumatologist and behavioral specialist will see him BUT the most important thing is the MRI and the LP.
So, we have to come back in 20 days. The fun never ends.
**So far, everyone else in my family has tested negative.**
Recap Day 1 of Retesting for Hunter. Today is actually day 2, so I’m going to be a day behind all week. Tis the life, I guess. Anyway, I dread hospital days. Usually, I start getting anxious about a week prior, and then it hits hard the day before.
This time, I got a head start on packing and I was going to pack light. Last time, I packed too many snacks and clothes. The first time (almost 4 yrs ago), I packed little to nothing for a 2 week stay. I have one bag for both of our clothes, a book, and my slippers. Then, I packed my purse that has my little bag of bathroom things, essential oils, and electronics. One bag. One purse.
Once I’m Ready
Then, I am ready. I have a coke in the fridge, water, and we are rolling. This time, however, was different. First, I was supposed to check in on Memorial Day. Doc said that we should put it off till Tuesday. Okay, fine. Adjustment.
Monday night, I went to do the pre-visit on Telehealth and it had that I was SUPPOSED to come on Memorial Day. I messaged. No response. I called. No response. I messaged hours later. No response. Are you sensing a pattern?
My Whole Mojo was Thrown Off
Tuesday comes and I start calling. Guess what? No response. I called admissions and they said they had him down for coming Monday. There were no orders for him to be admitted on a Tuesday and to not come (a long drive for me).
I messaged the office 4 times. Called 3 times. Then, I called admissions again. Finally, after my whole mojo was thrown off, we left about 3 pm. It rained the whole way down, so that was an added element of fun in the non-existent sun.
Getting in Our Room
We got settled and a neuro doctor came in. She was letting me know what all was going to be done. Then, we talked about his new or increasing symptoms of rage, OCD (or tics), his vitiligo, and other things. I informed her that she needed to look at his last visit and whomever the 2 neuros were that took his cath out, they were not to get near my son. Her eyes widened.
Of course, this is a neuro I had never met and she wasn’t aware of the plasmapheresis trauma. Tough. Just tough. I will say that our IV team (the team consisted of 1 person) was unbelievably phenomenal.
Blood Tests and Co-vid Test
He had a lot of blood drawn for several different tests. Also, he had a co-vid test which was HORRIBLE. I mean, he grabbed the stick, shoved it up to his nose more, and SCREAMED. Then, he broke it.
Luckily, he slept well and was overall really good.
Today, I am going to let myself be seen. Today, I am going to declare that I am enough. For so long, I have struggled with conformity friendships. I desire to conform but when I do, it is not me. I lose myself in that moment and I realize that I am doing this to fit in.
Sisters, you are not created to fit in. You are created to be salt and light. You are created to be a city on a hill and not a face in the crowd. I was not only a face in the crowd, I had customized masks to wear for each crowd I was in.
I learned at a very young age, that I was not like other people. I thought differently, acted differently, and believed differently then my schoolmates, roommates, boyfriends, siblings, and parents.
At the age of 10, I remember standing in the driveway of my grandparents house declaring that, one day, I would adopt from Ethiopia. How I even knew where that place was is still a mystery. I wanted to adopt and I wanted to adopt an older Ethiopian boy because that is the child that no one wanted.
Storing Up His Promises
I kept that stored in my heart, never releasing it because my family struggled with racism. I was informed, at one point, that I could either choose my black children or choose my father. I thanked my father for the love and protection he had given me, kissed him in the cheek, and then I told him I would choose my children.
Do you have any idea how hard that was for me? People pleasing me.
Judgement of Others
The people that no one want to be around are the people I am drawn too. I have been told to be careful who I associate with because it could call my faith and salvation into question. I have also been told because I’m loud that I cannot be submissive to my husband. I have been told that I am not worthy to stand in front of people because no one wants to hear what I have to say because my hair is pink and I have tattoos. I have been judged on my children acting like children and had horrible things said to me in regards to them. Things have been said that I still struggle to forgive the words and the people who said it.
My best friend was 79 when we met. She was my Lady. That’s what I called her. It started out as mentor, then moved to friendship, next, it moved to me being her caregiver, then a closeness that I cannot explain, and then I had to give her to Jesus. One of the hardest things I’ve ever done. My Lady saw me. She saw through the masks and the facades I tried to put on. She loved me without abandon and she treasured my family, though we are all different. She was my person.
That is What Everyone Needs
They need a Lady, a friend, a confidante who sees you and you see them. It was beautiful, but short lived as she passed away. I miss her. Her telling me that my tattoos are stupid but she always wanted to look at them and touch them. She would ring my neck if she knew her name was on my body. I took Faith(ie), Hope, and Love to a whole nother level. There is a cross (love), with a semi colon, doves (hope), and Faith(ie) because her name was Faithie.
I challenge you all to be you. Love you. Embrace your weirdness and never ever do you have to explain yourself. Ever. Let your yes mean yes and your no mean no and zero explanations.
Over the course of the last several years, there has been a crimson thread that has interwoven into the beautiful tapestry that God has created for my life. That crimson thread has been the works of the evil one, who is so desperate to destroy my walk, my countenance, and to steal my joy. 1 Peter 5:8
A wise man told me in Sunday school, that HAPPINESS is based on circumstances but true JOY comes from the Lord and according to Psalm 30:5b….weeping may endure for a night, but joy comes in the morning.
That statement rocked my little world. It is common practice for me to doodle in class or in church. It is not because I do not listen or I am bored. Quite the contrary. It is because I have to have something to do with my hands. I concentrate better when I’m moving my pen along a notebook. Weird, I know.
I’ve made quite the masterpieces in Sunday school and church. I was doodling, this particular morning and I will never forget when Mr. Benny Watkins said that statement. I stopped doodling, I sort of had a perplexed look on my face. I do not remember anything else about that lesson or about the sermon.
Happiness vs. Joy
I never understood happiness vs. Joy.
That statement made the answer crystal clear. We may not have happiness in this crimson thread but we are children of an amazing God and we CAN have joy in those crimson times.
“The Lord keeps you from all harm and watches over your life. The Lord keeps watch over you as you come and go both now and forever.” Psalm 121:7-8
Even when you are at the darkes on that thread…He is watching over you, loving you, and protecting you. At that moment, it may seem like He has left you…He never moves….turn your head and there, you will find Him with open arms.
Jesus Spoke to Me
Jesus has been speaking to me about taking back what satan has stolen from me. He has stolen a lot and has tried to ruin my tapestry. He has done this simply because he enjoys it. Yet, with one drop of the Blood of Jesus, I can reclaim what was taken. I reclaimed so many things. I told Him that if he wanted me to write, I would write with no fear. If he wanted me to speak, I would speak with no fear.
Here I am
Writing for the world to see, yet no one reads 🙂
My days have not been rainbows and sunshine. The crimson thread has nearly taken over my tapestry. 2015 brought about the continuation of a porn addiction that nearly broke up my marriage, the sudden death of a family member, the stroke of my best friend, and gaining custody of our 21 mth old great-nephew.
In 2016, my dad had a stroke and my Lady was still recovering. I was alternating my time between my family, my Lady, and my dad. Oh, and our continued fight for custody of our great-nephew.
My oldest daughter’s fiancé broke off their engagement and soon after she was let go from her job, our 3rd child’s volatile behavior hit its peak, and my niece was captured and placed in jail. So, one could say that those 2 years, alone, have pretty much-sucked pond water.
I felt alone, abandoned, hopeless, and depressed, very far from God and just numb. It has been difficult….I mean gut-wrenchingly difficult. My theme verse for this season of my life was Romans 4:18-21 (I am paraphrasing): Even when there was no reason for hope, Abraham kept hoping—believing. And Abraham’s faith did not weaken. Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this, he brought glory to God. He was fully convinced that God is able to do whatever he promises.
So, in my own private time and life………without uttering this theme to anyone, I held onto hope that, one day, I would have a rainbow. I know that my rainbow will come because the Lord says in Job 38:11 I said, ‘This far and no farther will you come. Here your proud waves must stop!”
Let the Oddities Begin
Then, in December of 2016, the strangest thing happened. The red thread had begun to overtake my tapestry. We were in a transition of trying to find the right church for our family and we had been visiting one for a few months. We were at church and we were getting ready to worship. We knew the pastor and his wife, as well as, a few families. We really didn’t know anyone else. We had not been going very long, but it was definitely different than what we were used too.
Before service started, there was a welcome and then our pastor called up a man because he had a “word” to give some people in the congregation. We have learned that this is somewhat normal, but still very abnormal to our family…we simply were not used to that. So, we sat and we watched this man pace back and forth in front of the congregation.
I am a people watcher/reader and the thing that caught my eye was the fact that he never opened his eyes when he was pacing or talking. He kept touching the insides of his hands and you could tell that he was uncomfortable but being obedient.
He said that he had had this word from the Lord and he wanted to make sure that it was, indeed, from Him and not from this man’s flesh. He realized through his sleepless nights that this was from the Lord and he had to be obedient.
A Word from the Lord
He said that he had a word for someone in the congregation and so we sat, listened, and watched him pace. He made his way down the aisle that we were sitting on and he stopped in front of Big Daddy. I felt like all the oxygen had been sucked out of the room and my mind was whirling. He asked Big Daddy to stand up.
I looked up to the altar, where our pastor was standing, and he gave me a look, a nod, and a smile that it was okay. This man, whom we had never seen or met, told Big Daddy to hold onto his hand. Now, Big Daddy is not a tiny man and his hands are ginormous, so when he stands, he is noticed.
This man said that the Lord was telling him to “Hold on. Hold on tight to the rope and do not let go. To trust and just hold on tight.” I felt an energy move through me and tears flowed freely, which I don’t usually cry or get swept up in my emotions, so this was strange to me. The moment was fleeting but the air was thick and I knew, in my soul, we were in for a ride.
We are Still Holding On
Come the beginning of 2017…..so many things happened. My daddy had quadruple bypass surgery, my niece (my youngest son’s mom) was sentenced to 10 yrs in prison, my nephew was close behind her, my daughter went to military school due to behavior, we were trying to get custody of another great-nephew.
My oldest daughter called off her engagement and was downsized at work, fighting with insurance companies for my son’s surgery that he needed, then my Lady got sick, again, I had surgery, my 6th son had surgery, stitches were had by kids…..then the straw that broke the camel’s back happened. Needless to say, we were reminded to “hold on” a lot over the course of the first 6 mths of 2017.
During the custody battle over my other great-nephew…Big Daddy and I were trying hard to win that case and it was simply out of our hands. We knew what we could do to help the situation…we were willing…but it was not our call. As I spoke to a friend of mine, asking for prayers, she said that the Lord revealed to her what I need to know. She said I needed to “hold onto hope.” She also said that the Hebrew meaning of “hope” is “rope”, so hold onto the rope.
I caught my breath and I texted her back and asked her who had told her that. She said no one and that it was a word from the Lord to me. I asked her if she knew the man that had said the same thing back in December and she did not know him. That is twice, the Lord has said to “hold on.” We lost custody of this little boy and I thought our ride was over…..we had held on but now our trials were over….now we could retreat and heal from the past couple of years.
Then the call came
My sister called me on Tuesday, June 6, 2017. Now, she rarely calls me on a Tuesday…we talk on Monday. I asked her if everything was okay and she said that she woke up to an odd text. She said it was from a friend, a former neighbor, that she used to walk with. That friend said that the Lord placed my name on her heart and that she was praying for me.
I have never met, spoken to, or even seen a picture of this woman. She simply knows me from what my sister had said and I’m sure I wasn’t the topic of every conversation…although I am awesome like that. I told my sister I did not like that and that meant that something was fixing to happen. My sister told me to take it as a blessing, but I was unsettled.
On June 6, 2017
I knew the meaning and the prophecy behind my theme verse and behind these people telling me to hold on tight to hope. I knew what was to come was going to rock our family to its core….and it did just that. I had spent the previous night in the hospital with my Lady…..the Drs had told me her time is near.
Preparing for the death of your mentor, your best friend, your Lady……there are no words for that. When I got home on the 7th, my son was acting strangely, crying, shaking, everything upset him, so we were really excited for naptime (or at least I was excited). He slept well and my oldest son got him up.
We hugged and snuggled and then I put him on the floor and told him to go about 5 steps to the potty. He went 3 steps and fell….he began shaking violently and said his legs hurt. I picked him up, thinking his legs were asleep, so I held him even more and I rubbed his legs. I put him back down to go to the potty and he fell again.
I knew, then, something was wrong. I called my sister (his grandmother) and said meet me at the ER, the baby can’t walk. From there, we went to Vandy with no results…we got back home and I immediately packed and headed to Kosair’s.
Running on No Sleep
I had not slept since the 5th because I had been at the hospital around the clock with my Lady. Bart stayed home with the other children. Things progressed quickly. He had lost his ability to stand, talk, feed himself, sit up, walk…..all he did was shake from the top of his head down. His eyes were constantly moving, as well.
After a 2-week hospital stay, spinal, EKGs, and so many more tests….we got the diagnosis of Opsoclonus Myoclonus Syndrome. He has either had cancer and his body has so aggressively attacked cancer that now it is attacking his brain OR he will get cancer within the next 3 years and this is just a precursor. During this time, I had to learn to yield control. I had to graciously accept help and ask for help. It was just me and him up there most of the time.
Blessings of Others
I had strangers bringing me meals. I had family come up and sit with me. My sister *always* had her phone by her so I could sit and just cry. Friends and strangers fed my family at home, people gave us money for gas, we were on multiple prayer lists. I am still humbled by being on the receiving end instead of the giving end. Our journey is far from over. Since, we have done chemo, heavy steroids, and many doses of immunotherapy. He still struggles….every day is a different symptom. He has good days and bad days.
Hold On, God is Fixing to Start a New Color
Looking back in what I was seeing as hopeless….God was still telling me to hold onto hope….hold onto that rope of hope. Looking back, my husband was delivered and our marriage was saved, my best friend who had a stroke and was so sick finally went to see her Jesus, and she was restored, we adopted our 7th child right before Christmas in 2016, my father recovered from his stroke and his quadruple bypass, my niece is sober and safe in prison, our daughter who left due to her volatile behavior is figuring out life again, my oldest daughter is happily employed married, and with a baby, we won the insurance battle, and my 6th child will be able to hear (out of both ears) by Christmas, stitches were removed, surgeries healed from, and my baby, well, he is not in remission, but he is doing okay and we are learning how to navigate our new normal. God is good……….He is good all the time and all the time He is good. Job sums it up pretty well In chapter 42:5 I had only heard about you before, but now I have seen you with my eyes.
Eventually, I will write about 2018-2021…the roller coast has not ended but my tapestry will be beautiful when it is done.
In Isaiah 30:19b it states that “He will be very gracious to you at the sound of your cry; when He hears it, He will answer you.”
He knows your heart, He hears your cries and as His children, He will answer you…but it may not be the answer that we want because we see a fraction of the picture…He sees from beginning to end.
Be comforted in knowing that “He has made everything beautiful in its time. Also, He has put eternity in their hearts, except that no one can find out the work that God does from the beginning to end.” Eccl. 3:11 He has written your story…He has it all in the palm of His mighty hands. Trust and obey every step of the way.
We are STILL holding onto hope cause 2021 has been a rough one.
I have struggled with depression my whole life. There are short seasons, there are long seasons, then there are *really* long seasons. There have been a couple of times that I am missing a year because I simply cannot remember due to my depression. There are seasons that are circumstantial and once those circumstances have been dealt with, my sad cloud leaves. The other seasons are just plain ole crappy.
I withdraw. I sleep. I do not get out of my house. I do not change my clothes. I do not get out of bed. It takes too much effort. My husband does not know what to do with me. In our early years, he was oblivious because I was great at placing my mask. In our middle years, he recognized and then tried to fix the problems. Depression cannot be fixed by well-meaning spouses.
In Later Years
In the later years, he just sits and he loves on me. He lets me be me and he loves me through the valleys. We have come a very long way. I have learned to take off my masks and ask for help through lots of prayers, Jesus, therapy, and medication. He has learned to stop trying to fix me and to stop trying to understand the darkness that can consume me.
In 2015, I was struggling with a hard season of depression. There were days when I struggled in getting out of bed, getting dressed, brushing my hair, etc. I did the best I could, but at the end of the day, depression won. I would sit in my bed, sobbing about being a failure as a believer, wife, mom, daughter, sister, and human being. Deep down, I knew my worth in Christ but, sadly, I listened to what the evil one was whispering in my ear instead of the Truths of my Jesus.
In Walks My Lady
On a Wednesday night, my family and I went to church for dinner and our classes. We got there, got our food, and sat down to eat. The side door opened and my Lady walked through the doors. She is an amazing lady and she has taught me so much and I knew, regardless, that I was loved by her.
I got up, from my seat, and I went to give her a hug while my son ran and grabbed her some dinner. She has this ability to, not only, look at me but she can look THROUGH me.
That night, she looked through me and she asked me what was wrong. Tears welled up in my eyes and I just said “I don’t know, I’m really really sad and I can’t shake it.” My Lady looked at me and firmly said “well, get over it. You have a life to live, a husband who needs you, children who need you…now get over it.”
I think you could have knocked me over from the shock of that statement. There has never been a person, over my long history with depression, that has ever said anything like that to me. I almost let it hurt my feelings. I almost listened to the evil one saying “she does not love you, she does not care, that was mean.”
Instead, Jesus took me and shook me, that night. With Jesus by my side, He flicked satan out of my ear and He said “I sent her to you. She is my gift. This is your kick in the pants from Me through her. Now, get over it!” I walked around in a bit of a daze, that night.
Purposing to Follow-Through
The next day, I got up and I purposed to do a few things to better myself. I am well aware of my deficiencies in the “follow-through” department. There is also the thought of wanting to succeed at something and if I set my goal too high, then I will not follow through and I will fail. I set the bar VERY low.
My first set of 30-day goals were incredibly simple. The first thing was to brush my teeth every day. The second was to put a bra on every day (you laugh…girls….but you know what I’m talking about…especially being a home school mom).
I also purposed to read 1 chapter of Psalm and 1 chapter of Proverbs, daily. I did this by starting on whatever day of the month it was. It made it easier for me to remember. I had just received a great study bible, a new journal, highlighters, and pens for Christmas. I was set. In my journal, I listed 5 blessings first. Next, I listed prayer requests. Then, I would read my chapters, highlight the verses that meant something to me and I would write them in my journal.
I made it through that first month! I was so proud of myself and the Lord revealed SO much through His Word. I also maintained my two tiny goals of brushing my teeth and wearing a bra.
The next two goals were pretty simple. The first was to take my medicine regularly (always take your meds as prescribed by your doctor) and to not wear my husband’s clothes, but to wear my own. Again, you people might be mocking me, but hey, my husband is a big man and I feel really skinny when I wear his clothes. I like to feel skinny!
I had powered through Proverbs and I still had a ways to go with Psalm, so I thought I would add in a short book of the bible to make myself, again, feel good about accomplishing something. I still kept my journal, but I was on a new journal because I had filled the first one up!
Getting Wild Up in Here
This time around, with my prayer request, I got wild and mixed things up! I went back through my prayer request and I highlighted the answered prayers and I dated them and wrote how they were answered. In my dark times, I was able to flip through my journal and I could physically see the answers and that God still moves even when I feel He is not moving.
I also began branching out with my prayers. When I felt myself closing up and moving inward with my sadness, I forced myself to look to someone else. I texted people in my contacts how I could pray for them. The replies, to my texts, were humbling.
My friends would say “How did you know? What do you know? Who told you? I was just praying about that and I feel like I have confirmation. In my darkest, you reached out.” Oh my goodness. This was such a source of light and comfort for me. The Lord was using my depression to further His Kingdom!
My Prayer Journal
My journal filled up REAL quick and I had to upgrade to a notebook. For each person that I asked how I could pray for them, I gave them their own page and added any requests on that page. I would follow up with their requests to see if the Lord had answered them and when they were answered, I highlighted and dated that request.
Eventually, I branched out even further and I extended prayer to my friends on Facebook. The responses were overwhelming. I was and still am humbled to stand in the gap, with prayer, for people. My notebook got full and I have since moved to a binder! I love my binder. It is never far from me and I have my pens and highlighter ready to go.
What I Learned in my Season of Depression
In this season of depression, I not only learned how to pray, but I also ended up reading through the entire bible in about a year and a half. There were the dreaded books of the bible that came to life because I was reading it through a new set of eyes. The Lord revealed so much, I started sending out lessons I had learned along the journey. My season lifted because one person spoke what I needed to hear. “Get over it!”’
Ending the Stigma of Mental Illness
Depression is real and it is not talked about in society. Please, I am urging whoever is reading this, seek counsel. If counseling does not help, go to your doctor and look to getting on medication. There is no shame in that. I have been on medication, on and off, for several years.
There are seasons of your life when “get over it” does not cut it and you need more help. My hope is that the stigma of depression and other mental illnesses is eradicated and that we can talk freely, get support, and become free from this disease.
If you, or someone you know, is suffering from any type of mental illness, and you are afraid that they may do the unthinkable, the Suicide Hotline is 1-800-273-8255. They are there 24 hours a day. Never be ashamed. Never think you are alone. Never not know your options. Reach out! Live! Teach others! Through your ashes, beauty will be found.
In every person’s life, there are milestones. My first milestone was the age of 13. This was when I could wear a little bit of makeup (think French whore) and I could get my ears pierced. The next milestone was the pinnacle for me. Sweet 16. This was the ideal age to be.
It was a magical age that was filled with promises of lollipops and rainbows. I could finally be a part of the conversation, instead of the person looking in through a window. I waited my *whole* life to get to this age. I waited 16 years! Why? Because this was the age at which my daddy said I could date!
Going Steady and Dating is Not the Same
Don’t get me wrong, I’ve gone steady with a boy. I was going steady with a boy when the boy didn’t even know we were going steady. I have also been asked to be someone’s girlfriend by another friend who handed me a note, from the boy, which had “check yes or no if you want to be my girlfriend” written on it.
Before 16, the boyfriend scenario was limited to the halls of my school where I would *gasp* wear his necklace or his jacket. We would secretly hold hands underneath the lunchroom table or even better…the library. We would sit together in the lunchroom and eat off each other’s trays.
The Greatest Thing about Going Steady
The greatest thing was sharing his gum. That meant forever because our spit was forever intertwined. The first time I was REALLY kissed was at a middle school dance. Billy Rich. I wore a powder blue polyester dress. I was sporting matching eye shadow and as an added party favor…my mom put baby’s breath in my hair.
I didn’t kiss my “date”, I kissed my secret love. Well, he kissed me…I ran to the bathroom to look in the mirror because I thought there was moss growing on my tongue. I couldn’t figure out, for the life of me, why someone would stick their tongue down another person’s throat.
Rules of Engagement
I lived at home until I was 20 years old. In that time, my limitations never varied. I was not allowed to call boys, there were never phone calls past 9:00 pm, and my curfew was 11:00 pm. I never went anywhere, so the curfew problem was never an issue. I had no friends, so the phone calls after 9:00 pm were not an issue. There was, however, an issue with the no-call boys rule.
How am I supposed to maintain my girlfriend status if I can’t talk on the phone with my boyfriend? So, phone calls were done in secret. I would grab the ginormous black receiver (still attached to the kitchen wall), dial the number of my boyfriend, run to my room, hide in the closet, and whisper “hey, call me back so we can talk.”
I would run back to the kitchen, hang up the phone and then run to my room and pretend to be reading or cleaning. When the phone rang, I let my mother answer. This was to protect my covert operation. I was so stealthy and an expert dialer. I did all of this while my dad was sleeping and my mom was taking her one bathroom break for the day. I, simply, was a rockstar in the secret boy calling the department.
The Pinnacle of All Things
Now that I have turned 16, I still couldn’t call boys because that was inappropriate but the world became my oyster. That oyster had a name…its name was “The Mall.” Oh. My. Goodness. We could go to the mall and hold hands and kiss while standing in the appliance aisle of Sears.
There was another oyster…its name was “The Park.” Only the coolest kids cruised the park and that is where you went to be noticed and for people to revel in your newest relationship status. We could go to the movies and sit close to each other. It was the greatest age in the entire world. I was so excited. I finally had a purpose. I had status. I was going to catch a guy and I was going to go to the mall with him. You cannot get much great than that!
Rules of Dating
I remember, distinctly, knowing the rules of dating. You have to be 16 and when that special someone comes to pick you up, that person has to come to the door and meet my parents.
Meeting the parents for some kids was no big deal. In my house, however, that meant someone meeting my dad. My dad was a police officer and he was extremely protective of his children. He also had a gun on him or near him and he was never famous for using his words. The thought of a boy meeting him sent a shiver down my spine.
I had it played out in my mind. I would somehow arrange for the “meet and greet” portion of my date to happen when I knew my dad was sleeping or when he left for work (he worked midnights). I could totally avoid him altogether and as long as my mom met this person, I was off the hook. My mom was a piece of cake. She loved everybody. Her goal in life was to hug and feed people. She has always been a person who never meets a stranger.
I do not remember my brother dating. He married young and was out of the house by the time I was 10 years old. I do not know if the standards were different because he was a guy. The only real memory I have, of my oldest sister dating, was a prom where she looked like a Farrah Fawcett rainbow child. Her dress was made of tulle and the colors were powder blue with rainbow stripes. It was very risqué because it was off the shoulders. The dude had some kind of 1980s bouffant hairdo that looked a bit like a bird’s nest. This was the beginning of the mullet hair….business in the front and party in the back. The business part was also a feathered Farrah Fawcett hairdo. She was extremely popular and her hair was the bomb!
I have memories of my other sister when she started dating. She had “boyfriends” and then there was “the” boyfriend….the one that would last. She was giddy and annoying. He was preppy and fun to be around. We would sit around the table and play Rook and lick the cheese off of Doritos. They held hands, she would sit on the floor and put her chin on his knee. The looks of love would flit in between them. I remember thinking “when I get my boyfriend, and he comes over to visit, I’m going to offer him the chair and I’m going to sit on the floor next to him because that is what girlfriends and boyfriends do.”
My Big Day
When my big day arrived and the thrill of the knowledge that it was “my time” to date was almost unbearable. I felt a bit like the chick in “The Scarlet Letter.” I felt like when I walked into that school, that there was a giant red “D” on my chest and that, of course, stood for DATEABLE. My vision was that I would enter through the giant double doors and there would be a wind machine in the common area.
That wind machine would be blowing my massively large permed hair. The giant red bow, holding back my locks, would flap in the wind. My baby blue eye shadow, which was applied with a spackle knife, would radiate my big, brilliant, brown eyes. My mustard yellow pants, perfectly pegged at my ankles would highlight my brown Robin Hood shoes which perfectly matched my deep, purple shirt. I was hot AND I was 16 AND I was officially dateable. Who would not want all of that?
What I Envisioned
I envisioned the boys standing in line…waiting to get the first shot at me as I walked through the doors….were not so much standing around. They were flitting back and forth between classes, lockers, and the bathroom. There was not one, single, solitary person who knew it was my BIG birthday. What. A. Letdown. My scarlet letter “D” had fallen off my shirt and I stood there thinking “Seriously, people, I am 16. Ask. Me. Out!”
I was devastated. To offset my devastating, I went to the bathroom, fixed my hair, reapplied more baby blue eye shadow, reapplied my “D” and headed out to the halls to casually announce that I was 16 and I was on the market. Fresh meat. Excited to be alive and ready to say YES!
Doodling for Attention
As I sat in class, I would doodle “today is my birthday and 16” all over my paper. I doodled and doodled and doodled. There was not one person, male or female, that noticed what I was doodling. Dangit. The next step…tell people. I would get a half-smile or some people would actually say the words “happy birthday” but other than that, no one was excited.
I went home, full of sadness. I looked in the mirror and thought “you look hot, you look 16, you look like you are ‘of age’ to date, the outfit is rockin’…what the heck is the problem?” I vowed to try again tomorrow. I wanted to be noticed. I wanted that boyfriend. I wanted the title of girlfriend. I had no idea what it meant other than kissing freely, holding hands, and being able to ride in the car with them.
What to Expect When You are Dating
I talked to daddy about what to expect in the dating world. I needed to be prepared. Daddy just looked at me and gruffly said “go out with boys for free food and movies.” Alrighty, then. That is your great sage advice. He also would tell me “when all other boys go to the barn, I will still be there for you.” Now, that piece of advice was sweet. The other…not so much.
My mom, I never talked much to her about dating. I never talked to anyone about dating. I was one of those kids that didn’t have a lot of friends because I didn’t fit in with any crowd. There was not one person, at my school, that did not know who my daddy was and what he did for a living. I was never told where any parties were because my dad was the one to bust the parties. When your daddy is a cop….it limits who you hang out with to nobody.
In the end, I never dated one single person at my school but I did marry a hottie from college 🙂
Have you ever felt invisible? That no one really sees the pain that you carry around on a daily basis? Has your pain ever been so intense and you have stuffed it so far, that you are numb to emotions? Have you ever been called emotionally stagnant or unable to feel things as they happen? Well, that’s me in a nutshell.
Childhood trauma, young adult trauma, adult trauma, PTSD, whatever it is that you may face. It’s a bitch. In the moment, I feel nothing. I’m always on mode go go go go go and then once I’ve gone, I relax. Then, I cry and feel all the feelings. It’s horrible. I’m working on processing the traumas, whether big or small, past, present or what I foresee.
Have you ever taken the ACE test? The Adverse Childhood Experience study? My score is 6. This means that “People with an ACE score of 6 or higher are at risk of their lifespan being shortened by 20 years. ACEs are responsible for a big chunk of workplace absenteeism, and for costs in health care, emergency response, mental health, and criminal justice.”
Drug Allergy Testing
So, this past week, I had to take Hunter back to the allergist at Vanderbilt. This time, not for seasonal allergies but for a Decadron Challenge. Doing this definitively tells me whether or not he has an allergy to this specific drug.
Luckily, we had the same nurse as last time and the dr that we met via telehealth the first time. These ladies are so very nice. They explained things to Hunter and me very well. We had to leave a bit early and I got so turned around that we were almost lost.
This place is in a shopping mall. I kind you not. We had to go to a mall to go to the doctor. It is so weird. Add that to the fact we have to go up one escalator, down a thousand hallways, and up an elevator to get to where we were going. I was tired, he was getting anxious, we all know the drill.
10 Minutes Late
We got there, just in the knick of time. The nurse called us back and said how she remembered us from the last time. She did all the things and got us to our room. Hunter was behind me, twirling his shirt and hopping. I sat down, feeling defeated but stoic. Ready for this next test, next doctor, next hospital, next next next.
The nurse came over and asked to hold Hunter’s hands. She looked at him and told him exactly what we were going to do. That nothing, today, would hurt him. She comforted him and asked him if he was okay. He said he was scared and she softly assured him that there was nothing to fear. That touched my heart of stone.
Then, It Happened
She got him settled with the promise of Teddy Grahams and power aid. Next, she rolled back to her computer and started typing something, asking me the normal round of questions. Then, she quickly turned her chair around and looked me dead in the eye.
She said, “are you okay?” This was done with such sincerity that it threw me off. I was speechless. Then, I felt it coming. Tears welled up in my eyes and I gently said “no.” She rolled over to me and patted me on the leg and said that it was going to be okay and that I was going to be okay.
I Felt Seen
At that moment, I felt as if she could see directly into my soul. That she saw everything that had been stuffed down and she wanted to assure me that it is okay. I am okay. This is all going to be okay. I felt such comfort and calmness. A peace fell over me and I could physically feel my body relaxing.
On cue, Hunter must have felt something too because he did his thing. Ever since he got sick, we have listened to Ms. Debbie. She has recorded us about 8 songs. He knows them all by heart and asks to listen to her because it calms him. He turned around and said, “can we please listen to Ms. Debbie?”
We both listened and praised God together. I am learning, listening, and trying to trust in the process. It is coming up on 4 yrs and we are both just tired. God, give us rest and heal his weary body.