Type One Diabetes

Desert Living, Encouragement, Family, Special Needs, Stress and Anxiety, Type One Diabetes

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The last few weeks have involved lots of emails and phone calls.  Yesterday we finally received documents that outline the new proposal from the State of Arizona with the correct terminology that we can agree on.  If we agree to this, it will be several weeks until everything is finalized.

When I have explained this to a friend what the state is proposing, she asked “isn’t this what you wanted?” Yes, I will get what I wanted and I’m thankful, but it has conditions that I strongly disagree with.  I am finding it hard to wrap my mind around the added time and energy this will put on Bryson’s new family.  Also, I’m not sure that Bryson’s health will not be compromised with these “requirements.”

We are close to the battle being over, but the battle has inflicted wounds and scars that will need time to heal. 

My mind is weary, my heart is anxious, my body is exhausted.

I’m thankful for God’s unwavering love for me!

I’m thankful for my village of friends who stand in the gap when I don’t have the strength.

My hope and prayer…… when this battle is behind me, I can shift my mind, heart, and body completely into what God has for me next.

The next chapter is coming…….

Desert Living, Encouragement, Family, Special Needs, Stress and Anxiety, Type One Diabetes

Still Waiting

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I have rediscovered in the last year how writing is healing to my soul.  I have also realized how I can “shut down” and start carrying the burdens internally.  My goal was to keep writing here frequently to share my life with you, even apart from the Bryson journey you have all been walking through with me.

Most of my posts in the past have come to me at night, bits and pieces of what I’m processing in my mind.  My mind has not been quiet, but no ideas came to my mind. I’m thankful that my sleep has improved recently, but last night, I couldn’t sleep, my mind was all over the map.  

Yesterday was a stressful day involving our situation in Arizona with Bryson.  I received information in the morning that sent my mind spiraling downward.  I strongly dislike it when I get into this place, I feel out of control mentally.  The negative thoughts, the frustration and anger, the self-doubt, the bad self-talk comes. I tell myself, that I should know better, God is in Control…. but the hard feels so overwhelming and hopeless. 

As I sat in my chair, fighting to reclaim the truth, I texted several friends what I was grateful for.  It helped, but I was still caught in that angst place all day.  Late afternoon we had a meeting again with a lot of people involved in Bryson’s case.  So thankful for technology that Brad and I could both participate in the meeting. 

We have made progress, but we still do not have a clear resolution.  They offered us a proposal, the proposal that they offered is exactly what I proposed to them 5 ½ months ago when I was first informed that they were going to deny.  The exact words from an email I received about my proposal “I elevated your last suggestion and it was indicated that it is not possible for that to occur.”  NOW, it is possible?

I’m mentally and emotionally exhausted. Working with government systems that are outdated, full of bureaucracy and dealing with people who are not the decision makers but the vessels to deliver information and they can’t answer my questions.

I realized last night as my mind was on overdrive, I wanted my next post here to be titled DONE! I want this to be done, we are in the 11th month since we started this adventure. It has been 5 ½ months since they first denied our request to pay for the home we want for Bryson.

Today is a new day, a day with sunshine. I cling to the truth of God’s plan, His timing, His purposes. As most of us know, we might never have clear answers to the WHYs in our life. My mind is hopeful and less foggy to see the situation in a better light. 

Yesterday when I was fighting for hope, I picked up my Bible and opened it… This is what I read:

Samuel 2:1-2

Then Hannah prayed: “My heart rejoices in the Lord!  The Lord has made me strong.
Now I have an answer for my enemies; I rejoice because you rescued me. No one is holy like the Lord!  There is no one besides you; there is no Rock like our God.

Micah 7:15-16

Yes,” says the Lord, “I will do mighty miracles for you, like those I did when I rescued you from slavery in Egypt.” All the nations of the world will stand amazed at what the Lord will do for you. They will be embarrassed at their feeble power. They will cover their mouths in silent awe, deaf to everything around them.

Family, Special Needs, Type One Diabetes

Alone

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This morning at 3:30 am Tucker and Kaden left to head back to Indiana.  I was officially alone in the house.

I’ve been alone before; this alone is different – this time it’s the empty room, empty pantry shelf where all Bryson’s meds were stored, no daily pill container on the countertop, empty shoe rack – reminders of a new kind of alone.

The move went well on Thursday afternoon.  Kaden, Jake, and Tucker were rock stars in helping me turn the new room into Bryson’s room.  It didn’t take long after we arrived that Bryson left us working in his room and he was downstairs chatting with Melissa.  Yes, Melissa is the name of his new caregiver mom.

Introducing Melissa and Marc, Joe and Stevie and dogs Mrs. Beasley and Georgia

My brain was not functioning at its best on Thursday, my emotions were high, I was in robot and shock mode. As I stated before, thankfully the guys took charge and got all the necessary things done. We were starving when we left and hit a local pizza place.  The guy’s chatter was a balm to my weary soul. 

In a previous blog post, I talked about distractions, distractions kept me busy yesterday, helped keep my emotions in check.  I’m good at keeping my emotions in check, I’ve done that well for 51 years.  They have leaked out a lot over the last few weeks but I’m good at patching the leaks and collecting them inside of me.  I feel sealed off from them now… my head is observing the empty, but my heart is cold.

I believe God uses shock to help our bodies deal with hard situations.  I’m waiting for it to wear off and let it sink into my new reality and future. 

I left Bryson at his new home 42 hours ago, in that time frame, he went out to supper with his new family to a sports restaurant to watch the Phoenix Suns with Marc.  Marc loves sports.  He attended the day program ARCH and had pizza for lunch.  Melissa changed his insulin pod with the aid of a video and Bryson coaching her through the entire process.  His blood sugar readings have been perfect, he even got a unicorn… in the Type 1 world when your blood sugar is 100 it is called a unicorn… because it is magical! (OK so I haven’t turned off his blood sugar readings and alarms yet… I will soon) He also attended ARCH Spring Prom last night and was on the Royal Court as a prince.  I’d say that was a good first 42 hours.

I’m thankful for the pictures that Melissa has sent me, and I know she will continue.  Bryson looks happy in them.  I haven’t talked to Bryson since we left, I will head over today and bring paperwork that I forgot on Thursday.  I’m excited to talk to him and connect more with the family. 

Thanks for all your prayers… please keep them coming…. It’s the weeks ahead that will be the hardest. 

Desert Living, Encouragement, Special Needs, Stress and Anxiety, Type One Diabetes

Day 210

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Yesterday was Day 210 of us being in the desert.

Yesterday was Day 30 to hear back from the State about Bryson’s appeal.

Yesterday at 3:50 MST (1 hour and 10 minutes before the state’s deadline) I received an email.

YOUR APPEAL HAS BEEN DENIED

The grief, anger, frustration and disbelief were overwhelming.

The weeping, the deep groaning of sorrow and anger spelled out of my soul as I talked to Brad on the phone. 

I called the head of the agency I am working with; she is a DR and experienced in the disabilities field was appalled. She said we have options.

I told her I was done, she said “Lisa but you can’t let them win” I told her I was tired.

Thankfully my dear friend Lynette showed up. We debriefed, we processed, we even laughed. 

Thankfully my SIL Bev and nephew Jake arrived from Manitoba last night. Tucker and Kaden will arrive tomorrow.

I slept ok, I woke up with a severe headache. I’m so fragile and overwhelmed.  But I feel His presence.

I will rest and Brad and I will go over our options, we will lawyer up, we will fight!

Shock is still lingering, but I will press on to run the race that God has marked out for me even if I am out of shape and exhausted.

Thanks friends and warriors.

Health, Special Needs, Type One Diabetes

Fifteen Years

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It was spring break 2008, our family had not made big plans for the week, maybe Brad and I were feeling a bit guilty that we weren’t on some great family vacation.  We decided mid-week to head north to Kalamazoo for the weekend; go to the Kalamazoo Air Museum and a Kalamazoo Wings hockey game.  We made reservations at the Holiday Inn… I can’t tell you the order of events for the weekend, but I do know that the boys were hungry and we went into the restaurant at the hotel to grab a bite.

Bryson started complaining that he was thirsty and so we gave him Pepsi (our family’s favorite beverage at the time and the worst thing we could have given him), next he had to use the restroom.  I became very frustrated with him, he wanted to drink and he needed to pee… often…. this wasn’t normal.  It didn’t make sense to me. During the hockey game, we were back and forth to the restroom. 

Fast forward to Tuesday, I received a call from the school nurse to tell me that Bryson had peed his pants.  This had never happened before. I told the nurse about the weekend events and she suggested that I call the doctor. 

We arrived at the doctor’s office on Thursday for our 2:30 appointment.  I was just me and Bryson. My mom was watching the other boys. The doctor took his blood sugar and it was in the upper 500s.  I heard the word Diabetes and we need to get him to an Endocrinologist NOW.  I can picture that office, I can remember my shock, my confusion, my ignorance, my panic, my questions.  The doctor said we could take Bryson to Lutheran in Fort Wayne ourselves or call an ambulance,  but we had to leave ASAP.  

I don’t remember my conversation with Brad or my mom, I remember panic…. anxiety.  I remember the ride down, Brad was in front and I sat in back with Bryson, with an empty milk carton if he had to pee.  This marks the first of many trips that we took to Lutheran over the next 11 years.  (4 times a year)

The hospital was ready for us. The nurses were kind and informative, I was totally overwhelmed. They told us we would have 5 hours of education on Friday to learn how to give Bryson insulin shots and to educate us on carb counting.  We would then go home once we had gone through this education.   FIVE hours. that was it… to navigate TYPE ONE Diabetes that changed the direction of our lives forever.

That night I attempted to sleep in the hospital room with Bryson, I remember waking up early to the room shaking.  Fort Wayne had experienced an earthquake.

BREAKING: EARTHQUAKE (Update-5.4 magnitude) April 18, 2008

Many residents were awakened at approximately 5:38 AM EDT by a mild earthquake in Fort Wayne, Indiana. The mild tremors lasted for approximately 15 seconds. The tremors shook windows, furniture, and wall hangings. Mitch Harper, editor, Original content, commentary and analysis © 2005 – 2016 Fort Wayne Observed

I felt like our lives had experienced an earthquake too, Bryson was 10 years old, he had suffered so many hard things in those 10 years already, now his life was changed forever because of this diagnosis, WHY GOD?

I still ask WHY GOD… It has been 15 years today, that we rushed to Lutheran.  It is because of this diagnosis that we are still waiting for his placement with a family in Arizona.

Friends, the past 15 years have been so hard! Because of his disabilities I have been managing it all for him.  I’m tired, I’m mad, I’m still asking WHY!