This is my journey of faith, adoption, cooking, and living life to the fullest. It also documents our journey with our son who was diagnosed with Opsoclonus Myoclonus Syndrome. Welcome to my corner of the world.
I’m hosting a pity party this year on your behalf. It is just now beginning and it won’t end until, I don’t know, Jesus returns. I wanna love this time of year. Basketball is in full swing and oh how you LOVED to watch your kids in sports. So loud, you were so loud at the games. God bless those children.
This month is B’s bday month, Father’s Day, my anniversary, and yet, it makes my heart heavy. I wish things were different. In the end, I wish it didn’t even happen. Your children are healthy, yet struggling. You are grandma times two! I can’t even fathom you and me being grandmothers! Seriously, how did that even happen? We aren’t old enough.
It’s the Month
The month. The month that changed me forever and a day. That phone call, the screams, your children’s faces. Your face. Your eyes. The smell of your freshly washed hair. It was still damp when I took it down. It had gotten so long. I don’t remember where the hair tie went. What did I do with it? I don’t remember.
Honestly, that is now going to bug me. Maybe I used it to tie up the little bit of hair that I snipped off to give to your mom, brother, and kids. I don’t know. Whoa, I just had to call a friend and check in because my mental status is not good right now.
Honestly, I went to call your mom to ask her and it hit me. She is gone too. Your kids and going to only have each other, their uncle, and me. In reality, I don’t even count. I’m going to have to stop now. I can’t finish.
Be at peace, my friend. Dance with the angels. Smile your smile. Talk your loudest. I miss you and you were loved. Your life meant something and I’m sorry you lost sight of that for a moment.
Whatever it takes to keep your peace intact…do that. I am serious. As hard as it can be Whatever it Takes, Do It. Peace, according to Webster’s Dictionary means “a state of tranquility or quiet or freedom from disquieting or oppressive thoughts or emotions.”
These two things walk hand in hand for me. A state of tranquility and freedom from oppressive thoughts or emotions. The last SEVERAL years have been riddled with chaos, pain, confusion, sadness, and intense oppressive thoughts and emotions.
My Scripture reading, for today, was in Philippians 4:8 and it states “And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.”
Whatever it takes, do it. Whatever it takes to fix your thoughts on what is true. The definition is “freedom from oppressive thoughts or emotions.” When our thoughts are on the things of this Earth, they can easily become oppressive. Yet, God wants us to have freedom in our thoughts.
You can have freedom from your thoughts by capturing those negative emotions and casting them aside and realizing what is truth. Truth according to the Lord. This can be hard to do, but it can be done.
What is honorable. So, whatever it takes to be honorable, do it. Be a person that is that city on a hill, be the salt and light of the world. When you are in that spot of depression that yields a lack of peace, it consumes all of you.
I almost feel like I am in a barrel and there are times when I cannot even see a pinpoint of light. The last 2 years have been horrible. I have no peace. Well, I am getting it back, but it was gone, like the wind. I did not do whatever it takes for peace. It’s almost like I succumbed to the chaos around me.
There was no honor in anything I did because all I did was put down myself and live in self-pity. There was no self-care, self-acceptance, or self-love. I let the actions of others dictate how I looked at myself.
What is Right and Pure
Nothing I did was right or pure. It was derogatory towards myself and my circumstances. I let a few people control my mind. Satan used “friends” to destroy my self-confidence. I’m so thankful the Lord allowed my vision to clear up.
By Him doing that, it allowed me to see people for who they really are. These are the people that I had to step away from, for my own sanity. I could not have done what I did without the encouragement of my husband.
He sees me, daily, and he sees through me. He sees my pain and offers love, support, and occasionally a thought that would lead me to fix the problem. I am blessed with him, my mom, and my sisters. Without support, I may not be working towards healing.
Whatever it Takes, Do It
I had to do the unthinkable to begin my peace journey. There were minor things that I changed, like being off of Facebook. Facebook is toxic. It can be a pleasurable space to keep up with family if you can change some settings.
I shut everything down. There was no one, outside of my friend’s list, that had access to anything. I deleted all my albums and began a new email address to keep those unsavory wolves in sheep’s clothing away from me.
That is minor compared to the other things I have had to do and am currently doing. My goal is to achieve peace and retain what joy I have left. It can be done though it has been the hardest thing of my life.
I’m not sure there are enough words in the English language to convey how I feel about my granddaughter.
What is she…at 3 mths old?
Squeals in proper context
Blows bubbles with her mouth like a pro
Track objects with her eyes.
Loves her mama and coos for her daddy
She held her arm up today like “power to the people.”
Poops when I rub her foot
Sleeps when I rock her and tell her stories.
Best baby EVER.
What I Need
I need a thousand more grandbabies. Really, I do. If one is this great, I might explode if there are more. I am so grateful that my daughter and son-in-law let me come over often to just rock her. I try to help around the house, but I get so darn distracted by her cuteness.
Those cheeks….those thighs….Her long cow eyelashes and her beautiful hazel eyes. She is a perfect match between Bug and Ben. Her hair seems red but it has a giant white patch on top of her head that appears to be sticking around. Not sure what that is all about but I am digging it.
She Has Bonded Our Family
Seriously, we needed a win this year. Just one good thing and luckily, we got two good things. Alyssa got married and Victoria had Charleigh. Oh, we had three good things happen… Sassy moved in with us and it has been great having her around.
There have also been some not great things but looking at my girls, it warms my heart. Everyone (almost), girls and boys, are finding their niche and moving towards it. I couldn’t be more proud than I am now.
Here is some Perspective from Mr. Rogers from Mr. Roger’s Neighborhood. This is what to do when you overreact and have regret. “Many people have asked me do you ever get mad and of course I answer “well yes, everyone gets mad sometimes.” The important thing is what we do with the mad that we feel in life.
A few weeks ago coming home from a particularly tough day at work, I stopped to see my two grandsons. Their mom and dad weren’t there but the boys were there with the babysitter in the backyard, squirting water with hoses. I could see that they were really having fun. but I felt that I needed to let them know that I didn’t want to be squirted.
Do Not Squirt Me
So I told them so, and little by little, I could feel that the older boy, Alexander, was testing the limit until finally, his hose was squirting very close to where I was standing. I said to him in my harshest voice, Okay, that’s it alexander turn off the water, you’ve had it.
He did as I told him and said he was sorry and looked very sad. The more I thought about it, the sadder I got. I realized Alexander had not squirted me. That I had stepped into his and his brother’s playtime with a lot of feelings leftover from work.
So when I got home, I called Alexander, on the phone. I told him I felt awful about my visit with him. The more I thought about it, the more I realized that I was taking out my anger from work on him. I told him I was really sorry.
Do you know how he answered me? Oh, Baba, everybody makes mistakes sometimes. I nearly cried. I was so touched by his naturally generous heart. I realized that if I hadn’t called him, I might not have ever received that wonderful gift of Alexander’s sweet forgiveness.”
My husband and I met in the spring of 1993. We quickly fell for each other. I remember walking into the game room, where we both worked, one evening before school started. There were people lined up at the counter and I saw this man….in these faded blue jeans….with this butt…that made my heart pitter-patter. He was tall and eyes that were the color of the sky. He had a hat on, so I did not know what color his hair was and I noticed his bottom lip all stuck out because he was chewing tobacco. I fell in love and I did not even know his name. Swoon………….
The Kid Question
At any rate, that is the year we met. We were engaged by the fall of that same year and married in June 1994. When we were talking about our life, I asked him how many children he wanted. He stated that he wanted one, maybe two. I stated that I wanted four. I also told him of my desire to adopt and he was NOT for that, at all. He felt he could not love a child he did not see grow in me. I decided that I would let God deal with him on that and I was going to stay out of it.
Fast forward 22 years later and we did not have one, two, or four kids. We were blessed with 6 children. We have three children who were born “under the heart” and 3 children who were adopted. We have adopted from our local foster care system and to add the icing of the cake of our family, we adopted from Africa. All of our children were “older” child adoptions. The Lord changed his heart in a mighty way.
There was a day, back in October 2015, that I was in the bathroom and I was thinking to myself (and yes, I do speak to myself….and I answer myself). The prayer that was lifted up, that day, was one of thanksgiving. My heart has always yearned for my children, but we could not have anymore biologically, we could not from our local foster care system because our home was deemed “full”, and we could not adopt internationally because of finances.
We had had two, separate, opportunities to adopt privately, but the birthmothers made other choices and now those babies are with Jesus. There was nothing more to do. My quiver was full. We had 6 kids. Our oldest was in college, our second was finishing up her high school year, sprinkle in there some behaviorally challenged kids, and a hearing-impaired kid…oh, and homeschooling them all…and our life was complete.
While I was in that bathroom, that day, I uttered these words “Lord, I finally am content. I’m content with myself, my life, my family size, thank you for finally giving me that peace about being finished bringing children into our home.” I can imagine God, upon His heavenly throne, chuckling at my “contentment.” He was fixing to throw me a curveball the size of Montana. Almost immediately after my revelation, the phone rang. It was my oldest sister, Kim.
I was surprised at her phone call on a Saturday morning and instead of saying hello, I asked her what was wrong. She was panicked and straightforward. She and her husband, Joseph, were out of town and there was an emergency with two of her grandchildren. Her request was for me to get to where they are and keep them until she and Joseph came home.
Well, she did not have to ask me twice. My husband and I loaded up our kids and we drove separately, as to have enough room for everyone. We got to where the children were and there they stood, amongst complete chaos and sadness.
I plastered on my “it is going to be okay” face and I whisked them off to Bob Evans to eat. They were filthy and incredibly hungry. We made our way to the bathroom and I cleaned up their precious little faces. We sat to eat and boy did they eat. The rest of the weekend was much like my very own three-ring circus. There was some damage control, lots of hugs and kisses, snacks, movies, rocking, and soothing their weary little souls.
We made it to church without any incident on that Sunday. My sister came back into town that afternoon to pick up the beauties. Their world was fixing to shake and they needed that solid foundation of my sister and Joseph. Oh, do they love those kids…gracious.
After they left, I looked around at the carnage of the house. There were toys strung from here to high heaven. Clothes, barbies, shoes, Polly pockets, animals, trains….anything and everything we could find made an appearance and it was spread all throughout my living room.
There were half-eaten sandwiches, purses, stickers galore. I plopped down on the couch with a sense of accomplishment. We all survived. I was pleased I could help in this hard time, but I was so glad that my sister took over.
At It Again
Again, contentment. Again, pleased with feelings of peace. Again, God laughed. Again, He rocked our world. Only a few weeks later, our family…..remember…Bart wanted one or two and I wanted four? Remember how we ended up with three biological kids….and then five….and then six…and then done?
Well, we added our seventh child, 21 months (let that soak in…I had not had a toddler in 9 years and I am over 40, people!) sashayed into our home. He had beautiful curls, with these green eyes. He was nonverbal and loud. Holy moly he was loud. We took in my sister’s other grandson…her youngest grandbaby.
Gracious this is such a reminder of what I live with on a daily basis. It is so hard when you have such consistent, horrible things to you…and then, the fake apology. That is exactly what it is. Fake.
I probably have done that, but I learned to be sincere with my apologies. When I do something wrong or hurt someone unintentionally, it hurts me so badly. Today, I asked my realtor a question. It was a stupid question and her response sort of hurt my feelings.
Granted, I have not slept well in a couple of days. Hunter has been in the hospital and it is overwhelming. I was wearing my heart and feelings on my sleeve and I took it personally. So my response was an immediate apology and promise to not ask such stupid questions. Then, I cried.
It Was Not Her Fault
Though that is the straw that broke the camel’s back, it was not her doing anything wrong. I was just emotional. Yet, this is one isolated instance. I was not manipulating her and I was sincere in my apology.
Now for my family member, this is a different ball of wax. This member has many types of diagnoses. Part of me thinks that this individual cannot help it. They do something wrong, have a hollow apology and then do the same thing 10 minutes later.
It is almost to the point where I don’t want an apology, I just want this person to leave me the heck alone. Can we say BOUNDARIES? I clearly do not have boundaries but they certainly need to be established.
Kids with Reactive Attachment Disorder
They do this quite often. Manipulation, Confabulation, and Triangulation are what they are good at, in terms of this quote. According to Webster’s Dictionary, to manipulate means to control or play upon by artful, unfair, or insidious means especially to one’s own advantage.
Confabulation means to fill in gaps in memory by fabrication. To “normal” people, this means to lie. Then triangulation means to form an alliance. In this type of situation, it is child with one parent against another parent.
It is all exhausting and makes my brain work on overload. This is what we have lived with for 15 years. My boundaries had to be firmly placed, though they broke my heart in a million pieces. I had to take into consideration other family members and myself.
The stress was hurting all of us.
Life is Hard
The Lord did not promise us a walk in a rose garden. If we had that, or all the answers, we would have no need for Him. He completes and sustains us even when we are physically, emotionally, and mentally exhausted from creating those hard boundaries.
He gives us the wisdom we need, when we seek it, to “speak” to us. This, for me, is done through intuition, Scripture, other people, and dreams. I have learned to accept that my family member does not understand what it means not to manipulate and to be sincere in the apology that is made.
It is hard. Completely and totally. Maybe one day, the Lord will heal her mind, body, and spirit to where she can function well in the world around.
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.