Desert Living, Encouragement

Words

I have had a lot of words and thoughts rolling in my head the last week.  I have shed tears and more tears.  I want to tell you all about the happenings, but I also want to hold them close to my heart.

Transition is hard, it’s personal. How one navigates these new paths is unique, one of a kind.

On Sunday, I was blessed to have spent the day with Gordon, Lynette, and Ali on their annual Mother’s Day Adventure trip. We went to Tucson and to Saguaro National Park. We saw cacti of every shape and size as far as the eye could see.  We were on a hunt for the rare Crested Saguaro.  As we drove, I marveled at the uniqueness of each cactus we saw.  I marveled at the creativity of our God who must have a humorous side to create all the types of desert plants and animals that thrive in the heat. 

His creativity with nature and animals is applicable to His creation of mankind. I can chuckle at God’s creativity as He made each of us different and unique.  Weird in our own special way.  He made each of us in His image and we were perfectly formed in our mother’s wound.  But earth… is a fallen place… as we traverse through our lives, some of us, like cactus, have grown tall but feel alone. Some of us feel like life has become complex, a mess of twisted and mangled parts, and we don’t know which way to go. Others appear to look perfect on the outside but inside are dry and thirsty for community.  There are also ones who, like the Crested, don’t form the correct way and develop unusual characteristics. 

The common phrase “we all have a story” might seem overstated. But this “story” has made each of us who we are.  Just like each cactus in the desert, they have been created to handle the hardscape that they have grown in. Did you know, a saguaro cactus will not bloom with flowers until they are 35 years old or/and 6’ tall.  They can’t grow arms until they are 60-75 years old or 16’ tall. They reach full height at 150 + years and 40’ tall.  

God has richly given us Himself to handle the hardscape of our stories. But lack of faith, doubt, impatience, people pleasing can block us from receiving. It might feel like we will never bloom, find our purpose, start using our gifts and talents.  

Can you relate to any of these: Will I be able to grieve the right way? Transition the right way? What will “they” think of me? Am I a good mom? Will I ever get it right? What is next for me? Maybe it would be better the way it used to be?

I want to destroy all those questions, bury them deep, cling to truth, remember that we are all unique, we all grow differently.   I am working on… slowly…very slowly…  to be that scarred cactus, standing tall, in the desert, testifying about God’s grace in my life and share my story… by using words to help others whose ground has become cracked and dry from the intense heat of life. My prayer is, as people pass by me, they can see I have withstood the battle, I have conquered the fear and doubts and I have found the beauty of God’s purpose for me.

Family, Special Needs, Type One Diabetes

Alone

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, Family, Special Needs

Move in Day

It has been 12 days since I got the devastating news that DDD of Arizona has denied my appeal for Bryson to move into the home we have chosen for him.

That has not stopped us, we are shifting and realigning the plans and directions.

We have had meetings and it has been decided that we will place Bryson in the home we have chosen for him through self-pay while we fight this appeal.

As I was talking to a friend on Monday, how anxious I am now that the time is finally here to transition Bryson.  She said, “just see it like he’s going off to college”.

This week I have been reflecting on that quote and it has given me hope.  I have already moved one child to college, I know how to do this!

So how is this move like college?

  1. College cost money unless you’ve got a full ride scholarship, Since Bryson is such a big sports fan let’s use the illustration that he is going to play on the basketball team! Bryson is a walk on right now he’s heading to college going to pay the dues, but waiting till the scholarship comes in.
  2. He is leaving home for the first time and moving in with strangers. New roommates that he’s only met several times; with hopes the dynamics of sharing a household will work.
  3. He will be attending a day program during the day. It isn’t academic, but it involves schedules, participation, and social engagement.
  4. This isn’t permanent.  If it doesn’t work out, we have options and we can make changes. 
  5. He is only a phone call away; there are people close by who will step in as “mom” if he needs some extra love and care.
  6. As with college kids, they are out of your household but always still in your heart.
  7. We aren’t sure if this will end up being a 2-year program, maybe he will get his masters or doctorate. We don’t know the future, but God holds it in His hand.

The family that Bryson is moving in with has two other clients in their home.  The youngest one always says “he is going to college” when he heads off to the program.

Every day has a PURPOSE.

Thursday (TOMORROW) afternoon is MOVE IN DAY!

Today I am packing and checking the list to make sure I have everything together.

Kaden, Tucker, and Jake are back from their National Park adventure and will be my “moving team”.

We’re going to set up his room, as we would a dorm room, add all the personal touches that will make it Bryson!

We will keep praying, God is on the move, and we will wait for the time to come when we will hear that Bryson has got his full ride scholarship!

I hope soon I can introduce you to the amazing family that we have chosen for Bryson.  Each interaction I have had with them brings joy and peace to my heart.

I have contacted a lawyer and will be speaking with her today on the next steps in fighting.

Prayer requests:

  1. For clear direction on how to fight
  2. Fast resolution of this appeal
  3. Bryson as he transitions, I can tell he is nervous and that is normal.
  4. For me as I am a mess thinking about letting him go
  5. His new family will have changes in welcoming a new member to the family.
  6. Peace and strength for Brad, as he is walking this same journey but from afar.  

Thanks again friends, family, and prayer warriors, you each have been vital in this journey!

Desert Living, Encouragement, Special Needs, Stress and Anxiety

Distractions

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.

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

Day 210

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

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!

Adoption, Siblings, Special Needs

The Middle

Being in the middle is a hard place to be, I don’t enjoy the middle seat of an airplane; no place to put my arms.  The middle of a conflict is difficult too; especially if it involves relationships.  The middle sibling… I can’t relate to that place, but I have observed it as a parent.  The middle child can get lost in the shuffle.  Brad and I talked often about Ty and whether he would feel neglected with so much of my energy going toward Bryson’s medical needs and then having a younger child that always needs more help.  We also discussed the thought of Ty being the middle child but because of Bryson’s needs, he was in the position of the first born.  Would these roles make it more difficult for Ty as he matures?  Then you throw in the “sibling to a special needs brother” role and “I’m no longer the only middle brother” but I am sharing the middle role with my new adoptive brother.

I was looking through my old writings yesterday and I found the following written on October 4, 2009

The other night, Tyrell brought home a slip of paper from school about a cross county run for the elementary kids at Fairfield High School.  This is a chance for elementary kids to get a taste of running one mile with the high school coaches.   As he handed me the paper,  Ty said “mom, I want to run this race with Bryson.  The top 10 get medals and everyone gets a ribbon.”  I thought this was cool that Ty wanted to run with his brother, but I thought to myself, “does Ty understand Bryson’s limitations?” I commented back to him that we should see if Trent and Tucker want to participate.  Ty responded back quickly with “why not just with Bryson?”  I thought I had stated the obvious to Ty by reminding him that Bryson would have a hard time running and finishing.  Ty answered “that is ok, I don’t have to get a medal, and we would still get a ribbon.”  Sacrifice and love all came gushing out of my sweet sensitive 9-year-old son.  He was willing to sacrifice a chance at a medal to run with his brother.   Ty’s heart wanted to see his brother succeed.   I think that Ty understands the fact that it really isn’t about winning, it is all about participating and finishing the race. 

Reading this brought tears and I thought about my laid back, sensitive and caring middle son who doesn’t like being in the spotlight, doesn’t ask for many things and who at the age of 9 already understood what is truly important in life.  Ty has lived his life as a middle brother to Bryson with genuine care and love.  He welcomed his adoptive middle brother to the family with grace and kindness. These same qualities he gives to all those who call him family and friend.  Wherever he goes young kids love him. He will go the extra mile for a friend in need.  A man of few words but when he does speak, listen to him….they are solid, good and life giving words.

Thanks Ty, it is my blessing and honor to be your mom!

Desert Living

Time is Ticking

It’s been 13 days since I submitted the appeal, the State of Arizona has 30 days from submission to respond.  Here is what I have been doing in the waiting….

*Brad was here for 10 of these days, it was so good!

*Friends, Dennis and Clara, came in one weekend and we did tourist things, had deep conversations and good belly laughs.

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Uncategorized

Appeal Sent!

I received the needed paperwork and I emailed my appeal today! The agency has 30 days to respond. Please pray for smart and reasonable people to get my appeal request and will make a quick decision that is favorable for Bryson.

Enjoy some more beautiful pictures that I took on Sunday. The desert is alive with Poppies , Lupine and other wildflowers.

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Beauty in the Desert

I haven’t written anything in the last week, there is really no new information to share regarding Bryson’s case.  I am still waiting to receive a letter from Bryson’s Endocrinologist.  After I receive that I will file my official appeal. 

They say when life is hard, look up and see the beauty around you. That is what I have been doing.  My SIL Arlene has been here for the past week. We have shopped and eaten a lot of yummy food and we also went wildflower hunting. 

People say that the desert is ugly and brown. It can be in the heat of summer, but springtime… springtime brings out the beauty that showcases the creativity of our amazing God!  Enjoy the pictures!

Thanks for your prayers, I hope I can report GOOD NEWS soon!

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