This afternoon at 5 pm eastern is the prehearing phone call between our lawyer and the State of Arizona. To be honest and raw, my faith is small. I want to believe… I want to be positive….
The trauma from 2 past decisions that the State made has caused me to question. I know that God understands, and I know that He will take my mustard seed faith and can work miracles. I need a miracle God!
Our family traveled to Manitoba on Sunday. Brad took the long way back to his homeland. We left early Sunday morning and dropped Brad off at Midway Airport in Chicago at 6 am. He boarded a plane to Phoenix and arrived there at 9:30 am Phoenix time. Our friends, Gordon and Lynette, had picked up Bryson from his home and brought him to the airport. They did a Bryson exchange… and Brad and Bryson boarded the next plane and left Phoenix at 12 pm. They arrived in Minneapolis for their next connection flight to Winnipeg in the midafternoon. Everything fell apart that this time…their connecting flight to Winnipeg was delayed and delayed until finally canceled at 12:25 am on Monday morning and rescheduled for Tuesday night! Try to explain that rescheduling timeline. There were no hotels available in the area. Finally, at 4:30 am Brad and Bryson climbed into an Uber and drove to a local gas station where Brad had to get cash out of the ATM to pay for the Uber drive and they were Ubered from Minneapolis to Grand Forks, North Dakota, a 5-hour drive! They arrived there around 9:30 am and Brad’s brother and brother-in-law drove the 4 hours down to get them and picked them up at 11:30 to drive them home. Brad and Bryson finally with his family at 3:30 pm on Monday. Exhausted and frustrated.
We also believe that when Brad opened Bryson’s suitcase in the airport for his seizure meds, his extra Dexcom sensor must have fallen out because we couldn’t find it anywhere. He needs a new one on Wednesday. Brad was able to find some online from a Canadian supplier and we are praying that they arrive tomorrow.
With these two incidents’ happening the last couple of days… my faith started getting weary and discouragement set in.
It was so good to see Bryson and he was happy to be with the Plett side of the family. We have not been here as a family since 2019.
The shenanigans started when we arrived on Sunday night, and I expect nothing less from them.
I have been communicating with our lawyer all day today as she is preparing her argument.
Life changes are hard and bring so much “unknown” into the future. I have learned over the years that my “unknown” sparks my need for control. I can’t control it, so I go hunting for things that I can control and that is why I NEST….
Nesting is commonly associated with pregnancy. It makes sense, the future is unknown and what can you do while you wait and anticipate the birth. The definition of nesting is “the tendency to arrange one’s immediate surrounds, such as a workstation, to create a place where one feels secure, comfortable, or in control.”
I came home 2 weeks ago and as I had stated in an earlier post, the house needed a little TLC… I also needed something that I could physically do to distract and help me reenter life in Indiana. Within the first week I ordered a new area rug, and I started decluttering my house. I love trinkets and I would say I didn’t have an overabundance but since I have been home, I have felt like there is too much everywhere.
Last weekend, I had Brad go with me furniture hunting. Brad is aware of what I am doing. He has seen it before. He would admit he doesn’t understand this need but he was a trooper and supportive.
We have lived in our current house for almost 17 years. As I look back over these years, there were times here and there that I had experienced minor nesting episodes. Then… Stevan finally arrived home in Goshen, July of 2015. This life change altered every piece of me and our family as we knew it. I spiraled downward and my nesting tendencies intensified. I redid the entire upstairs of our home, painting, flooring, furniture, color scheme in the fall of 2015. Did it help with my spiraling depression? Yes and no, it gave me something to focus on and I could be an active participant in making my home new and beautiful.
When life seemed hard and ugly, I was fighting to see beautiful.
Next big nesting experience was in 2018. The summer of 2018 brought several traumatizing events into my life. Several months later, I redid our den, painting, wallpapering, new flooring, and new furniture. Again, I ask…did it help? Yes and no, again it gave me a project to focus on when my mental and emotional health was tanking, and my world felt out of control.
I have been in a hard space emotionally, mentally, and spiritually over the last years. God has been faithful, and He has shown me His mercy and His grace over and over. The world surrender enters my mind often and letting go of my need for control. I know it’s the best, I try, and I succeed for a bit and then I try, and I fail, repeat… repeat….
So here I am again, nesting and feeling very conflicted with this latest life change. I have felt a freedom I have never experienced before and truly starting to enjoy this new season. But also wrestling with guilt, missing Bryson, worrying about his case with the Arizona government, his future, my future.
As I wrestle with these emotions and as I write my feelings on paper, God speaks to me…
“Your need to make things beautiful in your world is ok… but MY way, MY plan… I got this for you, I have beautiful plans for you… trust me daughter… it’s ok to let go and rest.”
I have been home for eight days and have hit the ground running full speed ahead. I have gone to a funeral in Louisville, ate supper with Stevan in Louisville, had a doctor’s appointment in Ohio, attended a wedding and helped serve soft serve ice cream at a graduation open house. Those were just the big events!
It’s been a mixed bag of emotions….
The intense hugs of my friends have been emotional.
Sitting on the back porch with Brad, Ty and Kaden brought joy and contentment to my soul.
Lunch dates with best friends have been healing.
Seeing the kitchen island bare of medicine brings tears to my eyes.
Going to the store and seeing the items I always bought for Bryson sends a pain to my heart.
Realizing the responsibility of emptying the dishwasher falls back to me makes me groan.
My mind telling me I have to go pick up Bryson from work at 3; then realizing that is no more… that thought hit hard.
I don’t feel settled at home yet! The house had missed my TLC over the last 8 months and I’m working on bringing it up to MY standards! Rizzo and Gus, I think, are glad that I am home. My alarm clock on Sunday morning was Gus biting on my toes!
I miss the palm trees, bright blue skies, cactus, hundreds of choices of restaurants and my favorite shopping places within minutes.
I think Elkhart County roads are too narrow, there are too many potholes and trains.
Friends keep telling me to give myself time…. time…. that word again, in this instance, it’s not a time of waiting, but time to adjust, time to grieve, time to discover what’s next. We are still waiting for the appeals hearing for Bryson’s placement, but I know that is in good hands with our lawyer.
It’s been hard, God is faithful… that is where I will place my heart and let Him carry me.
I felt a relief, a letting go, room to breathe on Friday night as I picked up Brad from the airport. It was late, really late but time didn’t matter, my hubby was back in the Valley with me.
He visited many times over the last 7 ½ months of this journey. But this time, this time was the first that it was just me and him. Saturday, we had many projects around the house in Peoria to accomplish, but I felt like we were on vacation. Sadly, we didn’t sleep in, his three-hour time change and my lack of quality night sleeps, woke us up at sunrise. We went out for breakfast and though our to do list was long, there wasn’t a hurry or stress.
The day was wonderful and needed; we felt free. In the past 25 years, thankfully Brad and I have made taking vacations a priority, just me and him. But too often, when we left, I was running, I was running away from the responsibilities, the hurts, the hard… I was tired, or I should probably say exhausted. I wanted to be with Brad but, as I reflect now, I wanted to be free of life. It was my escape.
We were talking today about future travel plans, family events and social engagements. Each of these are not new conversations; we have discussed them often over the years. But as we were talking, in the back of my mind, this phrase kept repeating “I don’t have to figure out what to do with Bryson”. Free, that word again, almost foreign, heaviness of grief, a niggling of guilt, a tinge of joy.
Each of these emotions represent my feelings this past week since Bryson moved out. He is doing good. Good, maybe I should say normal as anyone who moves away from home would feel. When I saw him for the first time after he moved out. He used a word that has never left his mouth before, and he demanded me to pack up his bags. It was hard leaving but there was also relief that he could express his emotions.
Melissa, his new caregiver, is amazing, caring and she has worked in the disabilities field for over 20 years. She gets Bryson, she understands. Her texts were reassuring, and we had a breakfast date this past week and her words were a balm to my soul.
I am holding life in a different frame today. The view is one of letting go, adjusting the focus, blurring out the surroundings and taking a snapshot of what is ahead for us. The picture isn’t clear, as the old-time polaroid, you must wait awhile before you can see it clearly. Brad and I plan to take our time traveling home next week. YES, I’M COMING HOME. I’m looking forward to this time of sightseeing, adventure, and freedom. There is a part of me, scared to come home. I want to be there with all my being… but I have changed, life has changed, life kept happening in Elkhart County without me there. I realized today I have been gone almost the length of a school year, a pregnancy.
Bryson’s appeal case is in good hands, we have hired a lawyer who has advocated in the disability world many times. She is fighting for us, so we don’t have to. We are paying personally for Bryson to be in the home now until the fight is over. The battle isn’t over, but I see hope, it looks like we will have several more trips around Jericho…l know and you warriors know too…..who wins!
Thanks again for your prayers and encouragement. Keep them coming… the picture hasn’t quite developed yet, the image is still unclear, but my faith rests on the ONE who KNOWS it all and can see clearly… how lovely and beautiful it all will be.
In my mind, distractions are negative. I find myself when life is hard, scrolling my phone, binging TV, eating, and even reading.
This past week distractions have been positive. With the hard news that I received last Friday, I needed distractions, God knew I would need them and the timing of my SIL Bev coming was a gift.
We had an adventuresome week. I was a tour guide and took her to some of my favorite places. We also explored several new places that we could mark down as FIRSTS for both of us. We shopped and eaten lots of ice cream.
Kaden and my two nephews Tucker and Jake also were here part of the week and adding three young men to a household, that’s a good distraction. They left Wednesday, for a weeklong venture to numerous national parks in Arizona and Utah.
Today is one week since I read the words “denied”. I haven’t been able to start our official appeal again but there has been God sightings in this journey and movement.
We will be moving Bryson into his new home next Thursday on private pay while we fight. It’s the transition that we have been waiting for these last 7 months… it is what I have needed and wanted but…. NOW I truly must face it and the idea of letting go… that’s for a whole new post. My anxiety is high.
Bryson attended a recreational day program yesterday for half a day. He will be attending this part time and will eventually be getting a job also. He was nervous, I was nervous. It was ok… adjustments, transition, newness, all scary things.
I am waiting for several return calls from two advocates and lawyers who I spoke to before I did the initial appeal and they had said they would help if I needed them down the road.
The agency that I am working with has been fantastic and they have some information that will be helpful in our fight.
I have learned that DDD (the entity that I am fighting) can be a bully, tough and unfair. They want you to give in, they only see the paperwork and the diagnosis, not the person behind the paperwork.
I don’t understand; I’ve questioned God; I’ve also felt prayed for and carried by all my warriors…. THANK YOU!
God has brought songs on the radio to bring me comfort; friends have sent encouraging songs and verses.
We will move forward with COURAGE and FAITH, leaning strong on the promises of God.
Kaden, he is my baby, he might not like me calling him that, but I think he knows he has me wrapped around his finger.
Kaden, he is a warrior, the definition of warrior is a person engaged or experienced in warfare; a person who shows or has shown great vigor, courage, or aggressiveness. Let me explain why….
In March 2021 after a stressful year with Covid, school and normal teenage life, he started not feeling well, tired all the time and suffering from all over body aches. I started with the family physician taking lab work. Everything came back OK, and the doctor figured it was stress and anxiety due to senior year and all the things that come with that time of your life. Kaden graduated in the top 10 of his class and survived having to give a speech and school was done, but his fatigue and body aches continued. Our next stop was a chiropractor. He checked him over and agreed that his muscles were tight but figured it probably was just stress and anxiety and told him practical ways to deal with that.
Kaden headed off to Indiana Wesleyan the end of August for his freshman year of college. On move in day, his roommate’s mom, who is a physical therapist, did a brief evaluation on movements and strength in his arms and legs. She suggested we check in with an orthopedic doctor. When Kaden was home for fall break, we went and saw an orthopedic doctor. Kaden had tendinitis in his elbow, doing his senior season of tennis and had gotten physical therapy for that so we went back to the same doctor to see what she thought about his aches. She did see that his shoulders and neck were tight and prescribed physical therapy again, but also thought it was probably the stress and anxiety of college.
There we were three doctor’s opinions all saying stress and anxiety, I knew that both of these were present in his life, but this mama knew that there was more.
Freshman year of college is always tough, Kaden had a hard semester with the normal stresses, and continued with fatigue and body aches. He pushed through, continued to work out and study hard to get good grades, and he made it through the first semester.
I still needed answers, several of my friends suggested we test him for Lyme disease. After getting a few very God ordained connections, I got the name of a doctor near Indianapolis who specialized in Lyme and other tick borne diseases. We got an appointment for the end of January 2022. We met with her; she was amazing. Her and her husband had started this practice when some family members had gotten Lyme and discovered how much the medical field does not believe in Lyme and so they started their own practice. She took lots and lots of bloodwork and sent it off to California to the main lab that deals with tickborne diseases. On February 25, 2022, almost a year after he started not feeling well, Kaden was diagnosed with Lyme Disease, Bartonella (another tick borne disease) and Epstein Barr virus (the mono virus) Thankfully we finally had answers but finding the right treatment was the next hard part. He started on numerous antibiotics and natural supplements.
He completed his freshman year and came home for the summer. His body was exhausted and he started working but half way through the summer, he needed to quit to give his body time to rest. This was very hard on Kaden, he is a worker and didn’t want to be viewed as lazy. This started taxing him mentally. I started researching chronic illness and mental health. These two are so intertwined. We saw the doctor at the end of August before Kaden returned to college and we had his labs done again. We both were very discouraged by this time because he had been on and off many different meds and supplements since February with no relief or improvement. Lab results came back with some good and bad news. His Lyme and Bartonella markers were better and showed improvement but a third tick borne disease had reared his ugly head, Babesiosis. Babesia is tick driven but it is different then Lyme. This one attacks the red blood cells and acts a lot like Malaria. The labs also showed that his Epstein Barr virus was higher than the last time. I was so upset and questioned God, “why something else?” The doctor switched up medications again to try a different approach.
The last three months have been very hard on Kaden mentally and emotionally. On the outside he looks good and full of life, but he lives in a continual state of fatigue and body aches. He is trying to live the college life style but late nights and lots of activity taxes his body and the toll has been cruel. I’m so grateful for IWU providing him with counseling and disability benefits for his school work load. I told him that he can come home, that his physical, mental and emotional health is more important than school. He sent me this “putting mental health before my education is a great idea until it affects my education which affects my mental health which effects my education.” Living with chronic illness is a lose lose situation.
Kaden came out to see me this past weekend, he needed a mental health break from school and we needed time together. It refreshed both of our souls. Kaden loves to hike and climb up whatever rock formation he can. He was tired but he wanted to climb….he did short little climbs.. I saw the benefit on his mental health by his smile, but I saw what it cost him as he dropped into the car and just crashed with exhaustion.
This is why my son is a warrior…. he is engaging in warfare against tick borne and Epstein Barr…they are trying to take him out. His determination to not let it beat him shows his courage and vigor for the battle, but some days it feels too hard and sends him crashing mentally and emotionally. He continues to seek God for his strength and I continue to battle with him spiritually, emotionally and mentally until we together through God’s power will win this battle.
Will you join me in prayer that Kaden can see a victory over these diseases and we can give God all the Glory for what He has done.
