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Victory

The past week, I checked everyday on the social security website to see if the needed changes had been made to get confirmation of Bryson’s AZ residency.  NOTHING….

I had researched earlier about getting his Arizona ID but knew again I had to have several pieces of proof that he is living in AZ. We finally reached our 30 days of being here and I received one piece of mail that I could use. In my research I found an affidavit that I could fill out as a second proof.  I made the decision yesterday…. We are going to get this done!!

Those who know me well, know that I deal with anxiety on a large scale and as much as I was praying and turning it over to Jesus last night, I was restless and anxious.  I have been struggling with sleeping since I have been here.  Last night thankfully felt like a well-rested night.

This morning I woke up early and wanted to just stay in bed…. Today is the 2nd day that it has rained since we have been here. It is chilly, rainy, and gloomy…. Reminds me of a place I left 33 days ago. Cloudy days are hard for me. But I decided today we are marching ahead. 

We got ready and then I texted my amazing prayer warriors with a request to pray.  This was my text – I could use your prayers this morning. I have been fighting to get some paperwork for Bryson to get his benefits in Arizona. I’m heading out soon to try a different way to get what I need. I need my prayer warriors. While brushing my teeth the song “ I’m going to see a victory .. the battle belongs to the Lord” came to my mind….will you fight with me! ❤️❤️

My phone started dinging and dinging… and I laid my head down on my desk and wept. Everything came to the surface, all my bottled up emotions of this process and the outpouring of support and prayers.  As Bryson came out of the bathroom, I wiped my tears and Bryson said “mom, your phone is going nuts” I responded with “that’s God’s prayer warriors in action!”

We headed out and my stomach was in knots, we were listening to the Message on Sirius XM and the first song that came on was By Faith recorded by 7eventh Time Down, these lyrics hit me:

“By faith, I keep pressing on
By faith, hope is never gone
No matter what I’m walking through
All things are possible with you
By faith, on the rock I stand
Always, I will trust your plan
Every step I take along the way
I will walk by faith”

The next song played was Press On by Mandisa and this verse spoke to me:

“How many storms have I been through?
How many led me right to You?
You’re using the pain, the hardest days
For my good, my good
So what do I fear
God, You are with me
Guiding my steps today
Through the mountains, valleys, sun and rain
Lord, lead the way, lead the way”

The line “through the mountains, valleys, sun and rain” seemed so applicable physically to where I have been these past month… in the mountains literally, in the Valley literally, many days of sunshine and now today rain.

It reassured me God was in charge today….

We arrived at the MVS and walked in and the paper didn’t work to get my number. We were directed to go to the first window.  There I had to fill out an application of what I needed.  Next, they wanted to take Bryson’s photo. Bryson has inherited my eye speed… as I say “my brain is faster than the speed of light” and when there is a flash, my eyes are closed.  The first 3 times, his eyes were closed, the 4th they were open but he had his lips in a pout, the 5th try his eyes were open but his head was turned a bit… but finally the 6th attempt we had success.  We then sat down to wait for the person to complete our application. 

The gentleman started reviewing the application and my paperwork and said “we can’t take this paper work we need original” my heart sank… not again it was the same thing I had experienced at the SS office.  I started asking him if all my other paperwork was right and I thought we were done and defeated, but then he said “oh we don’t need this because you are just getting an ID not a driver’s license.” Oh I started breathing again and he continued with the paperwork.  Then he stopped again and said “ you can’t use this if you want a travel ID” again my heart sank again, Lord, just get this completed and get me out of here. I asked “can we just get him an ID? “YES” and there you have it. I felt the presence of all of the prayer warriors when the gentleman told me the first time it won’t work… I was watching him and it was like he saw something more clearly… It was definitely a visual God moment to me.

We paid and got the paper receipt copy and headed out the door.  Victory, I felt a huge relief but I couldn’t totally embrace the moment, doubts started swirling… “what if DDD won’t take the paper copy?  What if this isn’t right?  I hate how satan tries to sabotage a victory… I want to enjoy the victory and I praise God for His ways, but the battle isn’t over yet. The first thing I did when I returned to the RV was submit Bryson’s AZ ID and other needed paperwork to DDD by email.  NOW I wait again…….

Already wearing Cardinal’s gear, he says Colts are still #1 to him!

Life is a process and it involves stepping one by one through each layer… God showed me today more than the victory of Bryson’s ID, but I saw and I wept over my amazing village I have who stand with me.  I feel alone very often… the last month especially as I have been away from my friends and families but many a time just alone in this journey. God is faithful and I needed the reminder that I just need to reach out and ask and God will show me what all HE has provided for me.

I ask again for your prayers for the DDD application and interview and all the process ahead… and declare “I’m going to see a victory”!

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Perspective

Documents didn’t come – case has been temporarily closed with the AZ government

              Trusting God for HIS timing

Met three more possible families for Bryson

              Trusting God for clarity in decision making

Every day feels like Monday (I’ve never liked Mondays)

              From today’s devotional “when your life seems mundane, trivial with trials and seemingly meaningless, rest in who you are in Christ”

Waiting and waiting

              “I am the Lord God of all humanity. Nothing is too hard for Me.” Jeremiah 32:27

Toured five houses to get a feel for Arizona real estate

              Wow, I have a lot to learn…. Location, location, location…. I’ve always had new construction…  need a new perspective in decision making.

A first for everything. We sat in a restaurant for three hours to watch the Colts game        

              Just to lose in the last seconds……. (First world problems)

The RV is feeling smaller and smaller     

              Grateful for all that I do have!

When in Arizona….

              BUY Arizona plants

Attended Grand Canyon University Men’s basketball game on Friday night with my cousins.            

              Student section is crazy…. Thankful for the time we could spend with them and adult conversation!

Bryson thinks all stores are insane with Christmas stuff out already

              His favorite line… “they should not be allowed to put out till after Thanksgiving” I’m with you Bryson! Lynette keeps torturing him!!

Ty comes this weekend to visit  

              He has a short honey to do list and then it will be spending time together, exploring and having fun.

We have interviewed a total of six families for Bryson. Brad has met three of them. I have narrowed it down to three that I feel would be good fits. Thankfully we are not in a hurry to make this decision because the government has to get our paperwork first and approve us.. I’m glad we have this time, but also I would just like to make a decision and be done! 

Thankful for all your prayers and support… keep it coming

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Whirlwind

I have so much to update you on, but don’t know where to start! That’s how I feel right now. The last four days have been good, busy, and hard.

Brad was here Friday night late till Monday morning early, we packed in a lot of activities and the time went way too fast. Monday, after I took Brad to the airport, I crashed physically, mentally, and emotionally. It was amazing to have him here but then he was gone.

I had my honey do list waiting for Brad when he arrived, and he was able to check off most of the items. We visited three potential family providers for Bryson. They were all kind, caring and compassionate people. I have four more families that I need to contact yet, but with the few we did meet, we can see Bryson finding a home in one of them. Bryson has a tough time making decisions or giving his opinion on things, but he expressed very strongly the family he liked the best.

As we are meeting families, Bryson’s application with the government agency still has not been accepted. They still need a few more documents. I check every day online on the government site where I need the miracle to happen for the changes and document and nothing is there yet. I have been given till Friday to submit it or I will have to voluntary remove his application. Please be in prayer with me that this happens in the next two days.

Bryson and I attended Elevation Worship w/Stevan Furtick concert last night in Glendale. It was powerful but this is what I am wrestling with today. God performs miracles… I believe He does! God has His plans and purposes for us… I believe He does! He knows what is best for me…. I believe He does! I believe in the power of prayer… I believe He answers prayers! When I pray and wait on Him to answer, I feel my anxiety rise and I KNOW I need to surrender to His timing…. So, what do I do now?? Do I pray without ceasing…. The Word says to do that! Do I surrender it to Him and lay down my worries and let His timing be His timing? So how do I pray without ceasing and ask for a miracle and wait and surrender and be calm all at the same time?? 

I welcome any words of wisdom regarding my wrestling, I need you all to hold my arms up during this time. Ok, enough of the deep stuff. Brad, Bryson, and I went to BBQ and Brisket supper with live music at Saguaro Lake Guest Ranch on Sunday night. The surroundings were breathtaking, the food and music were great. I marvel again at the handiwork of our God, the unique landscapes/climates that He has created for us to enjoy.

Bryson has to watch Sunday night football on his phone!

I have a lot more words to write but I will end for now. Until later……

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My Awe List

The last several days I have been reminded that I need to look at all the blessings that God has given me and be grateful! This week was a roller coaster for my emotions, I had several restless, tossing and turning nights, mind racing to all different scenarios. Each time I would catch myself, I would seek Jesus and declare truth over the situation; but it felt like an all-out battle to get myself to grab truth over fear.

This morning in Ann Voskamp’s post, several lines connected with my soul “The way through awful is awe. Daily dose of God-awe is a kind of medicine that treats trauma. Trauma is when pain overwhelms us. Awe is when God overwhelms us…. All gratitude to God begins with awe of God.”

This was a confirmation to me to write out my awe list for this past week, this list is completely different than any gratitude or awe list before…. This desert life has introduced me to all new ways of seeing God in the awe……

Watching the sunset over a mountain range with cacti.

Eating ice cream on a warm Friday afternoon.

Seeing wild horses along the road and pausing to let them cross.

Getting a pedicure.

My hubby is coming TONIGHT (Friday)

An amazing new Endocrinologist for Bryson and prescribing new Diabetes technology that could simplify his Diabetes care.

Hot tubbing on a Wednesday afternoon.

Thursday and Sunday night football starting at 5:15 pm! (that’s just more awesome than awe)

Getting to hug my dear friend Sandy.

Catfish and mashed potatoes.

Seeing funny videos of Gus, our cat (I miss that cat… I never thought I would say that!)

Rocking chairs

Discount clothing stores

Never ending blue skies

Air conditioning

Friendly staff at the Social Security office – two visits this week were stressful, but I am praying I was able to fix the problem.

Two-day UPS shipments and Priority USPS Mail

New Diagnosis

Funny memes to share with friends

Thanks for reading my list… let me know what your AWE list for this past week would be!!

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Canadian Country

Bryson loves music! He has music on most of his waking hours when he can. His favorite is the worship band, PlanetShakers from Australia. Music has soothed his soul since he was a baby. As first-time parents, it’s always hard to know what to do when your baby is crying. Bryson went through a period where he cried a lot. After trial and error with different things, we learned that music helped calm him down and the louder the music the better. I clearly remember one Sunday afternoon we drove to Pokagon State Park to sit at the beach area. Bryson lasted for an hour or so and then he started bawling. We packed up our stuff and hurried to the car. The entire hour drive home we had Point of Grace and Avalon blaring through the speakers, and I mean BLARING! He was calm but we were tired. I can’t remember exactly what the album name was for both of those music groups, but they were played over and over at our house in Bryson’s early years.

This brings us to a year ago, Bryson discovered the Canadian Country channel on Sirius XM in my car. He would always be upset when his brothers played country music and he would tell you that he hates it. But something about the Canadian that’s in his DNA, this connected with him, and we always have it on when we are driving.

I have come to like this Canadian County music too! I have always loved country music so I can’t say it is any better than American country, but it has a unique style that I love. There are several songs that I had deemed my favorite over the last year. This brings us to a couple of months ago, I was driving alone in my car and the Canadian Country station was on, two songs played back-to-back. Each of them spoke to me differently and I immediately saved them on my playlist.

The first song is called Diamonds in the Desert (isn’t that fitting??) by Jason Blaine.

I can relate to this in several ways, while I am living in the desert. The first sentence “there are diamonds in the desert, in the sand beneath the sun” – my humor got me and my requote of the sentence is “there are diamondbacks in the desert, I don’t want to find one in the sand under the sun!”  I like how it speaks about dreaming and as we see an obstacle, we choose to stay on the safer side. But that the only way to really get there is to run through the fear. That connected with me when I first heard this song as I was preparing to come out here and now as I am here, I feel we have crossed the canyon into the unknown but I’m believing the hidden treasure is out here to provide a loving home for Bryson and respite for me.

The second song is called Who you Know by Tristan Horncastle. I dedicate this song to all my amazing friends and family who have and are walking this road with me. It takes a village and I’m so grateful that I have you all in that village.

So, thanks Bryson for introducing me to Canadian Country… and to finding my next favorite songs.

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A New Diagnosis

Have you experienced a time when you learned something new and it really messed with your mind, even though nothing had changed? I shared last week I had a lot to process but I wasn’t ready to chat about it on my blog. Well, here I am now, hoping that taking my thoughts out of my head and onto paper will help give myself clarity.

Last week, when I met with staff at the agency who is assisting me in this process, after a short conversation with Bryson, and I had filled her in on his behaviors, she made a strong statement about Bryson. She has worked in the disabled world for years. Her statement left me a bit stunned but also it was like the final piece of a puzzle was put in place and I could see the complete picture. Let me note, nothing she said was new to me, but it was the first direct statement that had been made to me from a person educated in this area. The word she said was “Autism!”

Let me take you back several years ago, Bryson had a wonderful older gentleman as his community worker on Mondays. On Mondays, he would pick up Bryson and they would go for long walks through different parks all over Michiana (Bryson would say it didn’t like it) but I had told (let’s call him Ed) that Bryson needed exercise and fresh air. They would try to eat out at a different restaurant and Ed would try to explain and teach important life skills. Ed had plenty of experience in the disabled world also and we would engage in conversation when they returned about the events of the day. Many times, Ed would reference something that Bryson had done and how much that was like another young man he had worked with that had Autism. I heard the word but didn’t take it in and do anything with it.

In all the years of IEP (individual education plans) meetings with the school, the word Autism never came up. I remember so clearly sitting in this tiny chair at a tiny table at Bryson’s special preschool that he started attending at 2 years of age. It was my first IEP meeting. The attendees of this meeting were talking about how to categorize Bryson’s needs. They decided to use the words “multiple handicaps” this would allow for a wide range of services to be available to him. I remember the feeling of needing to “label” my son and how it hurt.

For those of you who are not familiar with the IEP process, I will try and sum it up in a brief paragraph (I tried a sentence and that wasn’t enough). An IEP is when a parent/parents sit around a large table with 8-10 other people who are “professional” in their field. They share all the positive and negatives about your child and what services the school can provide for them. They go over all the tests and reports and medical stuff and on and on. They come across as if they know all about your child and what is best. You must sign a million papers and agree to all the services. You are always asked if you want a copy of the parent’s rights document. After a few years, I told them I have too many copies they can keep it.

Bryson had one of every year, as a newbie I thought that the school had Bryson’s best in mind,  but it wasn’t until several years in, I realized that if I wanted what was truly best for Bryson I would have to fight. Fight is what I did, but in all these IEP’s, Bryson’s labels were multiple handicaps, moderate learning disabilities, never Autism. Honesty, I never really knew how to explain Bryson…. my usual comment is “Bryson had a stroke in utero and that made him with a right-side hemiplegia (weakness), CP and he has seizures and learning disabilities.”  I would say when I wanted to be dramatic, that he was missing 76% of his left side of his brain. I never felt the need for more clarity, this was just how it was. This explanation has served to be enough for all these years.

Fast forward to September 22 of this year. Bryson had his yearly neurological appointment. Because we were moving, I wanted to get a letter of Bryson’s diagnosis to put with my application. She kindly looked through his records and printed out a recap of that day’s appointment and all his assessments/diagnoses. She handed me the paper and the first assessment was related to his seizures, the second to his right-side hemiplegia, the third to generalized Cerebral Palsy and the fourth assessment said AUTISM SPECTRUM DISORDER! I looked at that and was in shock… I never knew that they had this on his records. Bryson saw his first neurologist when he was 2 days old. Bryson had four different neurologists over his 24 years, 8 months, and this word was never used. One thought that entered my mind was “I could have gotten him so many more services, easier if I would have just been able to say that word.”  I never knew, I never asked but I didn’t know to ask.

Back to the comment about not knowing how to explain Bryson, I can remember my many thoughts I have had over the years, about how I wished he had a clear diagnosis. He basically “looks” normal. He doesn’t have any of the syndromes that are obvious. There were support groups for the syndromes and for Autism but nothing for the multiple handicaps class. I am grateful that 11 years ago I started attending an amazing special need moms’ group that gave me so much support and hope. We still meet and our bond is one only those with special needs kids can understand.

So back to last week, when she said the word “autism” and explained the characteristics that Bryson had, it made sense. In applying for the disability benefits here, a person must have a qualifying diagnosis and at least three “substantial functional limitations” related to the diagnosis. A substantial functional limitation is when a person needs substantial help with daily living in the areas of self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency. Bryson qualifies under four of the five possible diagnoses. She suggested I write out all his “functional limitations” for each diagnosis and how these effect all the areas of his life.

As many of you know, I love spreadsheets, so that is what I did last week after our meeting. Before I started, I typed the word “autism symptoms” into my google search. This was the first time I have ever put that word in and BAM… it was overwhelming, it was the missing piece of the puzzle. Symptom after symptom connected to Bryson’s behaviors and that is what really messed with my mind. My son has Autism. As most of us know, the Autism Spectrum is large, so it can present itself in many ways. But it made so much sense, and it triggered my grief. Now grief is a whole other subject that I can’t address here now, but grief is hard, deep, and painful to work through. I copied and pasted one after another of the symptoms and wrote out how it applies to him personally. It was exhausting but freeing in its own way.

As Bryson and I have been living in ridiculously small quarters the last few weeks and with my new knowledge this last week, I filter our interactions and his comments through this new word “Autism”. It’s amazing how a new diagnosis can help with understanding, now it doesn’t stop the fact that he drives me crazy a lot of the time with his “autistic characteristics,” but I NOW have a name and don’t feel quite as alone.

Why now, why as I am alone with him in the desert in a small RV far from home and hubby did God allow this latest information to be brought to light? I don’t know the answer, but I’m going to trust and lay down my whys and let this be another part of my healing journey. I’m going to let God continue to move in is mysterious ways and know that no matter what diagnosis Bryson has…. God loves him and has the best future in store for him!

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Saturday Ramblings

Thursday the 13th was a good day, first it was one of my best friend’s birthdays and also my dad’s birthday, he would have been 89 years old. He celebrated his 26th birthday in Heaven this year. Thursday was also good because I got good news from the agency about families for Bryson. Bryson also had a doctor’s appointment with his new Diabetes doctor. The team was amazing and we learned about new technology for Bryson’s insulin pump that will make it easier to manage. FIST PUMP FOR TECHNOLOGY!

Yesterday, I visited one of my cousins who lives in the valley and it was good to catch up with her and also to use some of my 100,000 words that have been building up over the last few weeks because of not having as much physical contact with people.

Today, well it’s cloudy and we are expecting a thunderstorm in the next few hours. It is also cloudy in my mind and my stomach feels a bit like a thunderstorm. I have been waiting for something in the mail here that I need for Bryson’s application to move forward and I found out it went to Indiana instead. So I’m anxious. I have been wrestling in my brain asking God why? While I was brushing my teeth, I heard Him whisper to me, “I have the timing right”. I need to trust that whisper, but it is hard. God has done many miracles this week and He will continue. I have to remind myself that the timing of our Arizona Adventure is perfect, numerous events occurred over this summer that proves that. If we would have moved ahead last fall/winter like I wanted, I believe we would have experienced more complications.

Waiting on God is hard, waiting is not one of my spiritual gifts, waiting triggers memories of past experiences. So as I sit here typing, I know that I am putting these thoughts into words so that I can read them for myself and surrender to my Almighty Father who KNOWS, CARES and has me safely in His hands.

The water here has been very hard on my hair, thanks to my amazing hair stylist, she recommended a hard water product to order. Amazon overnight for the win, I went into town to the closest Amazon locker to pickup this morning and on the way home as I was waiting on a stop light, I looked up and saw this picture below. As I looked, I saw three crosses where Jesus died on the hill for me and you. I know it was God speaking to me again, reminding me of His presence here in the desert with me, as I wait. I think the cacti might be fake up there on top of the hill, they look too perfect, but whether they are real or not, they stand tall and God used them to speak to me.

The clouds are definitely rolling in here, Bryson currently has 4 football games on the tv screen at the same time and it looks like we need to hunker down to experience our first desert thunderstorm.

Thanks for reading, praying and all of your encouragement during this adventure.

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It’s Hump Day

Happy Wednesday to everyone! I didn’t sleep good last night and was still awake way too early this morning. I had told Bryson yesterday that today was cleaning and laundry day. I did the laundry and Bryson swept MO.

Yesterday I met at the agency in North Phoenix who is helping me with the applications for Bryson’s disability benefits. I gathered so much helpful information and understanding on the entire process. But it left me very overwhelmed. There is a lot that I have had to process but I’m not ready to type it all out here now. They confirmed that he should not have a problem qualifying but they don’t make the process easy. I have had many battles in the past with the school system and doctors so I know how to fight but man I’m tired and the thought that I have another battle ahead seems exhausting. Thankfully, Brad is my level headed husband with wisdom and reminded me this morning, that I can’t focus on the what ifs and what might be ahead but be in the moment and do what I can do right this minute. If you remember from a previous post this is something I need reminded of a lot and I’m a slow learner.

I have had numerous events in my life that has caused me to have PTSD and I can be triggered by events. This process of getting Bryson benefits and funding has taken me back to the 2 year adoption process of getting Stevan home from Jamaica. It was out of my control and in the hands of a government. Those were some tough years for me mentally, emotionally and spiritually and I want to learn from that experience and not go down those same paths but… to be honest the thoughts pop up more often than I would like. I know Jesus is walking each step of the way with Bryson and I and I’m working on surrendering control to him. I am actually reading a book right now called “the cost of Control – why we crave it, the anxiety it gives us, and the REAL POWER GOD PROMISES” by Sharon Hodde Miller. It has many great insights I’m trying to put into practice.

OK so now on to lighter stuff… Bryson and I drove to the town 10 minutes from us and I did not use my GPS and I navigated around the town. Town isn’t big but it is hilly, curvy and as most of you know I’m directionally challenged. Here are some pictures from our drive and when we stopped at a local cafe for a smoothie and went on a walk.

B and Abe
Bryson and George
Bryson and Teddy
Me and Ron
The perfect picture… a cactus, a palm tree, water, mountains and for a bonus – a fountain!
I have all my ducks in a row!

Appreciate your continued prayers as I work though this application process and for my emotional wellbeing during this time.

Till later

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Monday Musings

Yesterday Bryson and I visited a local church. It was a very small congregation but part of a bigger church located in Mesa. Bryson loved that the preacher was on the big screen, he wondered how much it would cost for our church back home to have that done too???? He thought the preaching might be better! Hey I’m just telling you what he said.

I took a nap in the afternoon in hopes that I would not be exhausted and ready for bed by 6. I did make it till 8:45. It continues to be strange to have all sports games done by 8-8:30. Bryson wasn’t sure about the fact that football games were starting as we headed into church in the morning.

Hope you enjoy these pictures that I have taken in the last couple days.

sunset through the fence of the pickleball and basketball courts
The amazing view driving back to our RV resort
I know why blue is my favorite color!

I bought pickleball paddles and balls today, so hopefully Bryson and I can have some fun on the courts.

As they say it’s 5:00 somewhere… well it’s 5 here now and Monday night football is just starting. At home I would usually go get my Pj’s on and settle in for the evening. Here sitting in MO (that is what I named the RV) the sun is still shining, we haven’t eaten supper and the options of what to do are endless….. but I just might go get my pjs on and settle in!

Tell later..