Special Needs

Encouragement, Family, Special Needs

Lord, Help!

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As I was reading through Psalm 107, I was impacted by the words from verses 6, 19 and 28.  All three of these verses are the same “Lord, help! They cried in their trouble, and he rescued them from their distress.”

Distress feels like a very intense word, and I can recall the many times in the past 9 months when I felt like I was living in that place.  Since I have been home and adjusting to life here, I have focused on the fact that Bryson is happy and I’m working on finding the new normal.

Yesterday, I received an email from our lawyer about Bryson’s hearing date with the State of Arizona.  I was jolted out of my “settled in” place and realized the battle has not been won.  Yes, Bryson is happy and with an amazing family, but my checkbook reflects the fact that the battle isn’t over.  We haven’t accomplished the ultimate goal of approval to pay for Bryson’s placement in an ADH (Adult Development Home)

Bryson’s hearing date is scheduled for July 18. Our lawyer has requested a prehearing conference and that is scheduled for June 27.  This is where she will present all the evidence to show that Bryson does not need a skilled nursing group home to handle his diabetes equipment. Our lawyer has worked on many cases like this before and she has been able to get the decision overturned during the prehearing call almost every time. 

I ask you join me… Lord, help our lawyer deliver with confidence the evidence she has gathered in Bryson’s case.  Lord, help the person who is hearing this case to hear the truth and to see what is best for Bryson’s placement and future. Thank you, Lord, for listening to our prayer!

Thank you!

On a lighter note…. As I was sitting writing this, Gus came and joined me at my desk. He loves watching the birds out the window.  He isn’t very helpful as his tail is constantly moving onto my laptop.  I’m glad that his tail isn’t hard because he whips it back and forth quite violently at times.

I’m thankful for Gus and Rizzo, they cause me to smile often even when the day seems hard.  

Encouragement, Family, Special Needs, Stress and Anxiety

Nesting

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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.”

Desert Living, Family, Special Needs, Stress and Anxiety

Busy

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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.

Desert Living, Encouragement, Family, Special Needs, Stress and Anxiety

Breathe

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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.

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, Family, Special Needs

Move in Day

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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

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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

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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!

Adoption, Siblings, Special Needs

The Middle

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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!