Lisa Plett

It’s been a hard week, my creative writing juices have escaped me.  I have several fun themed posts I want to write but I haven’t been able to get them out of my head and onto paper. I know there is no pressure for me to write on the blog, but I want to, I want to write, I want to express my thoughts and tell my story.  So here I am this morning…. Just being open and honest with all of you. 

I wrote this on Tuesday in my notes on my phone while I was sitting by the pool waiting for my laundry to get done…. I’m more and more thankful for my washer and dryer that is IN my home and I don’t have to walk and wait till the cycles are finished.  The one benefit is that my laundry gets done in an hour and that includes folding and putting away!

Here is what I wrote….

When there is beauty all around you, but your soul remains sad

When you see the goodness of Jesus, but your heart still is heavy

When you know He has plans for you, but you feel there is nothing to dream

When you can see the reflection of God’s amazing beauty all around you,  but your eyes are void of life

When you are surrounded by people, but you still feel all alone

When you can look up at the mountains, know where your help comes from, but you feel like the climb is too hard to do

When you know, God has every minute of your day in His control, but the day seem long, and the nights even longer

It’s raw and when I read it again it feels so hopeless… I don’t want these feeling. I want to rejoice in the victory that we experienced last week…. I know I’m just exhausted mentally and emotionally from the battle.  I want to see the beauty in full color all around me, I want to laugh and dance, I want to experience all that God has for me…. Just was reminded that I took a picture of a rainbow that I saw on Wednesday.  It was chilly and rainy that day….. felt like a northern Indiana day. In the midst of the cold and rain… God showed me His colors through a rainbow!

I thank you all for continuing to pray for us! I know those prayers are sustaining me even on the down days.  Kaden is coming this weekend and super excited to show him my world here and make good memories together.

Timed changed this weekend but technically it didn’t affect me, Arizona doesn’t change times. The good news, Indiana is now two hours difference in time versus three.

Thank you all for your prayers and support last week. It was a difficult few days.  Friday afternoon I did receive an email from the government agency that she was reopening the case. PTL!! Now I am back to waiting to see if they have all the paperwork they need to decide if Bryson qualifies for benefits. 

Friday, I was emotionally and mentally exhausted so we didn’t do much, I went into town to get a few groceries and was blessed to see wild horses close to the entrance of the RV resort. 

When Brad was here a few weeks ago, I had talked to him about getting a latch so that I could keep the outside rv door open and just have the screen door.  We ran out of time for him to come up with a solution. But I found a way…. Brad called me “MacGyver”!

Ty arrived late Friday night and we have enjoyed a fun weekend together. His friend, Josh arrived Saturday night and we did some exploring on Sunday.  The guys played basketball with Bryson and took him out for breakfast, to give me a little alone time. The guys are still here as I am writing, I have them finishing up the honey do list! We are taking them to the airport this afternoon and then it will be back to just me and B.

I have had a lot of deep thoughts swirling through my head over the last week and they need to come out onto paper, but I haven’t allowed myself time to truly process all of them so hopefully this week I can spend time praying and processing. 

Thanks again for being my village…

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 2^nd 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 4^th they were open but he had his lips in a pout, the 5^th try his eyes were open but his head was turned a bit… but finally the 6^th 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…….

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”!

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

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.

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

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!!

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.

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!