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Speaking in Cursive

Walking through this extraordinary life.

Carried by Love

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I have been spending a lot of quarantine time organizing old family photo’s. One thing seems to stand out to me. I was either in my mother’s arms, or in her hands. Never far from her touch or her sight. What comfort these pictures bring me now, of my dear sweet mother, and the love she showered upon me and my siblings. How BLESSED I am to have had that in my life. The gentle guidance and reassurance of a mother’s touch.

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As a small child, I was painfully shy. I remember needing to be near both my parents, but especially my mom. I recall hiding behind her, grabbing on to her leg, hoping no one would speak to me. And then she would say, “This is my baby.”  She never forced me to talk to them, or come out from hiding. Her gentle nudging helped me to outgrow my shyness, and become comfortable meeting and talking with people.

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I can still hear my moms heartbeat, as I sat upon her lap with my head pressed into her chest. She would be on the phone, or watching her shows, but I was happy to hear her heart and breath. I was safe. I was calm. How grateful I am to have a mom who knew the importance of stillness, of quietness. I would listen to her voice echoing through her body as I drifted off to sleep. I still can hear it, and it beckons me home like a lighthouse on the shore.

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I know how very fortunate I was to have a mom who was home with us. Who read to us, and played with us. She let  me put make up on her, and do her hair. She would spend hours cooking and cleaning, and like any child would, I took it all for granted. But as a mother myself, I so appreciate everything she sacrificed for us. She wanted to be a dancer, or a nurse. In a lot of ways, she still was. We would dance around the house for hours, she had her certain moves, she still does to this day. And she spent many a sleepless night up with a sick child. When I was very young, I would get a little too excited about Christmas. So excited I would break out in hives from head to toe and be sick to my stomach. For several years, my mother sat up with me on Christmas Eve, and then on Christmas morning, would help me open my presents. Never making me feel bad for being nervous or worried. Rather, comforting and caring for me, until it no longer happened.

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Mother’s Day is so odd this year, for everyone. Most of us will not be with our Mother’s or our children. My mother now is in a nursing home memory care unit for dementia. I haven’t seen her in person in month’s. It breaks my heart, and I would give anything to snuggle up next to her, listening to her unmistakable laugh, hearing her heartbeat. To just share more of my life with her. But I can honestly say, I am who I am because of her. Because of the sacrifices she made to raise her children. To carry them with love.

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“Bursting with empathy, I’m feeling everything
The weight of the world on my shoulders
Hope my tears don’t freak you out
They’re just kinda coming out
It’s the music in me and all of the colors
Wish we didn’t live, wish we didn’t live so far from each other
I’m just sitting here thinking ’bout the time that’s slipping
And missing my mother, mother”.
Happy Mother’s Day.

Grieving alone, with the world

IMG_20200415_093905This is how I picture you, in heaven. Standing high on a mountain, looking around and taking pictures, or shooting a video to show us.

I found this photo, shortly after you died. I keep in my bible, as a bookmark. I see it everyday. And everyday I imagine you this way. I miss you so much. I surround myself with things that are yours or remind me of you. Yet some days, no matter how hard I search for you, I can’t find you.

You left us right before the world went mad. Perfect timing on your part. I think of that daily, that I am so grateful you aren’t here right now. That this would be so hard and traumatic for you. With all the Dr. appointments you had, and lab tests, and being in the nursing home. Alone. And then I get mad at myself for being grateful you are gone. How can you being gone, bring me comfort? I can’t even grieve properly (is there such a thing?) because the earth is sick, and things are at a standstill. Life has literally turned upside down since you have been gone. I wonder, would it feel like that anyway, losing you, without a global pandemic? You have been gone 4 months, it feels like years. Maybe partly, because I, like everybody else, have no clue as to what day or month it is anymore. It doesn’t matter. I have been off work for a month now, so there is nothing to distract me like work did. In some  way, it makes sense the world is hurting too, because the world always revolved around you, to me.

I find myself searching for you everywhere. Trying to pick up signs from you.  When I see my dachshund, I see you with your doxie Fritz. When I make meatballs and gravy, or chicken and spaetzle soup I can see your face light up. But especially when I hear birds sing. I can clearly hear you imitating  every bird that flew into your yard. You could mimic them. And you named them. Billy Blue Jay for one. I was getting sad because everyone I knew was seeing cardinals, visiting them from heaven, they say. Not me. And cardinals used to fly into my yard all the time. I hadn’t seen any. Until this morning. I have a bird feeder right in front of my dining room window. Every day I check, multiple times for one to appear. I listen for their distinct call. I will run to the window, but nothing. Then this morning, in the quiet, sat a pretty little cardinal. And I just stared. And he stared back. I mean it. I didn’t have my phone to take a picture, and honestly, I didn’t want to. I wanted it to just be. To be etched into my memory.

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Your 88th birthday would’ve been April 19th. I am anxious over it. And sad. Sad that, like in past years, I would take a picture of you and your twin grandsons who have a birthday a few days after you. It was our tradition. For years. I am mad that  it is over.  One of the many stages of grief I suppose. Anger. I just wish we could’ve had more. More birthdays with you, more Christmases and pool parties and weddings. It breaks my heart knowing you won’t see my sons get married or become dad’s themselves. I have to believe you Will see it though.

 

Mom misses you. Most days she remembers you aren’t here. “Your dad is gone you know.” she will say to me. As if to almost get confirmation. She, like everyone in a care facility, is on lock down. No visitors, and no leaving. It breaks our heart. We all call or facetime her as often as we can. Last night, when I called, her dementia had taken over, as it often does in the evening. She thought it was morning and Halloween. She was confused. But she said to me, “Your dad tells me everyday to get ready, to get dressed.” It made me scared and sad at first. But I had a different perspective this morning. I am sure she Does hear you. After 66 years of marriage, how could she not? Your voice must be filling her head. Heck, I can still hear you saying ” Mother, are you ready yet?”  You would chide her as she put her “warpaint” on, as you us to call it when she was applying her make up. She relied on you as much as you did her. Even though your last few months on earth were spent apart, you were still one. You always will be.

 

You would be happy to know, that most of your kids talk or text everyday. We are in constant communication. About you, mom, the mad world. We laugh and cry with each other. We support and comfort each other. We know family Is everything. We give each other a place to grieve and pray. You would be so proud. It is ALL you ever wanted. You are never far from any of us.

 

So much has changed since you left us. The world changed. Forever. All I can think is, while you were on the earth you were filled with pain, your life was never easy. And now, the world is suffering, every continent, every country, every community, and you are finally pain free and at peace. I hurt for the world and for all of us, down here missing you.

Lessons From My Father

My father passed away  December 16th at the age of 87. He left a legacy of lessons for his children to pass on for generations.

My dad was born to a German immigrant mother and a father who abandoned the family. Raised by his mother, grandmother and step father. He didn’t know that his step father wasn’t his birth father until he saw his birth certificate at age 15. This changed my father forever. And shaped who he was to become as a father himself. His youth, and the hardships he endured, molded the man, who never gave up or in. The man  who was determined, driven and strict. The stubborn, musically gifted, artistic and funny father he was. These are the lessons he left our family.

 

Be Punctual. Always.

My dad was never late. Ever. Not even once. And he made sure his children were the same, or at least while under his roof. If he said Thanksgiving dinner was to be at noon, you got there by 11. If you started work at 8 you got there by 7:30. To him it was a matter of showing respect, to your boss, your teacher or your family. It showed you cared enough to plan ahead for anything that could cause you to be late.  If we were going somewhere as a family, my dad would yell up to the bedrooms, “The bus is leaving in 15 minutes.”  We all knew it would really be 10. I believe there were a few times the bus left, with a few less passengers.  This punctuality obsession I now have my husband refers to as ” Jack time.” He will ask me if the time I say we have to be somewhere is the real time or am I telling him Jack time. No need to ask.

 

Wear Many Hats

Figuratively and Literally .

My dad was a Jack of all trades, But, a Master of them too. He could fix Anything. Anything. In his working years he was a welder, a painter, a maintenance man, and a butcher to name a few.And he was great at all of them. We didn’t go get new things if they broke, because dad could fix them.  He was known as Mr Fix It on our street. At any given time there would be a neighbors lawn mower in the garage for him to repair, another neighbors item to be welded.  He created beautiful lawn furniture, Swings and benches and picnic tables that many of us have in our yards. He was the Best at grilling out. Sticky Chicky was the favorite. A delicious barbequed chicken that he had convinced all of us, was a secret sauce he had concocted in our kitchen. He would empty out the cupboards to make us think he had mixed an elaborate recipe.He never told us, we will never know. But I can still taste it.

If you have been  blessed by many talents, share them, give them away

 

Eat The Foods You Love

My dad LOVED to eat. He loved Meatballs with Gravy ( extra gravy please). He loved Culver’s Cheeseburgers and McDonald’s chicken nuggets . He ate his hot dogs with peanut butter( don’t judge it until you try it) and sardines with peanut butter( feel free to judge this). He craved chocolate, especially German chocolate. Food made him happy, and sometimes was used to soothe him. Every single time my dad was hospitalized, we knew he was getting better, when he would request( or demand) for someone to bring him a cheeseburger. He would be on that phone by 8 a.m. calling one of my sisters to bring him Culver’s. He spent many years on dialysis, and had to watch everything that went into his body, so once he had the kidney transplant, food was once again a joyous experience. It really was the way to his heart.

 

Sing Sing Sing

Music was everything in our home growing up. Silly songs, Gospel songs, Polka’s. My dad sang them.   There wasn’t a child that sat on his lap that didn’t hear “”Kitties and Doggies” . My personal favorite was “I’m walking behind you because I can’t stand your face.”He would get out his harmonica, play You Are My Sunshine and we would dance around the living room. That tradition carried on 3 generations. My dad’s all time favorite song was Edelweiss . And his favorite way to hear it was when it was sung by his children. It made him tear up. Every single time.  If there was a party, a wedding, anything, and there was a microphone, my dad would get up, grab the mic and announce to his kids to come sing it. And we did. Every single time. It made him happy. And we have it on video and in our hearts .

Edelweiss, edelweiss
Every morning you greet me
Small and white
Clean and bright
You look happy to meet me
Blossom of snow
May you bloom and grow
Bloom and grow forever
Edelweiss, edelweiss
Bless my home-land forever
Small and white
Clean and bright
You look happy to meet me
Blossom of snow
May you bloom and grow
Bloom and grow forever
Edelweiss, edelweiss
Bless my home-land forever.

Be Prepared

Have a plan. Then have a plan B, and C…. My dad was nothing if not prepared in any and All situations. He was organized, and ready for whatever may come his way.  His garage was his castle. Every tool neatly in its place, cleaned and ready to go for it’s next use. There was never any ” where did I put that?” with dad. He could tell you where every single item in that garage was. Every year, when it would be time to Open or Close the pool, my dad would call for help. He would have Everything already out waiting for us. The cover to the pool had arrows and the initials N S E W printed on it, so we knew which way to put it on. If something was to be done, it was to be done Right , and the first time. Because of his readiness, it always was.  I will not lie, that had a tendency to drive us all nuts, but now, I understand. He taught us how to adapt to life by being prepared for anything. That life will throw you curve balls, but if you have your “tools” neatly in place, you won’t have to search to find them. And you will be able to handle it.

 

 Never Quit. Ever.

When I say my dad was stubborn, it is the understatement of the year. My mom always called him A Stubborn Old German. And he was. He wanted things his way. While that proved to be difficult at times for others, I firmly believe that is why he overcame so much time after time. All his surgeries, all the hospitalizations, dialysis. Diagnosis after horrible diagnosis, he just kept going. You couldn’t keep him down for long. There were so many times, we didn’t think he would survive a surgery, or make it through another night , and then, almost like clock work, that phone call asking for a cheeseburger would happen. He was Determined. He was Driven. And it taught all of us how to just keep going. To work hard. There was no lazing around. Many a morning, dad would wake us up, usually before 7, telling us not to sleep the day away. There was work to be done. That drive and determination in every fiber of his D.N.A. is what let him live probably two decades longer than someone else in his condition. While being stubborn can be a negative, it can also be an amazing blessing. He raised children who became hard workers, driven to succeed and get things done.

 

Laughter is Everything

 

My dad had a way of turning any situation into something to smile or laugh about. In sad times, trying times. And we had a lot of those, he would say or do something to make us laugh. I remember one time when I was little, maybe 9 years old. I had a friend sleeping over. There was this small hole in the carpet, and I was beyond mortified that my friend would see it . Dad had recently been disabled, so times were difficult. I am sure a hole in the carpet was the least of his worries, but He knew I was worried about it. So, he handed me his cane and a golf ball. We golfed for hours in that living room. That memory is etched into my brain. My sisters and I were cheerleaders, and sometimes dad would pick us up from practice or a game. But dad simply couldn’t just pick us up. Oh no, he would pull in, blaring his custom car horn programmed to play our school song. I remember wanting to crawl back into the school, but I saw how it made all our friends LAUGH and smile. Any time we had an issue with someone growing up, dad would say ” Did you tell them you know R.J. Bauman personally?”  It made us laugh, and it helped. He would spend hours singing funny songs, drawing Kilroy Was Here pictures or telling us jokes. He had a very inappropriate business card he would hand out to total strangers, the look on their faces was priceless. He faced every obstacle in his life with determination and humor. That gift also has been passed down 3 generations. The ability we have to laugh when times are hard, is the direct result of watching him do the same.

 

The Legacy a Father Leaves

My dad never knew his real dad. And that haunted him. He searched for years on his own. Then we joined in to help. We got close. We found an additional sister he never knew. His father left her family too. But that stopped with him. My dad never left. Ever. Times weren’t always easy. But he never walked away. His presence was everywhere. He was strict, which taught his children to be respectful. He was stubborn which taught us to be determined and go after our dreams. He sang and played his harmonica all the time and now his children, grandchildren and great grandchildren are talented singers and musicians and know every word to Edelweiss. His love of food taught his  family that simply just getting together to eat is all the Christmas present you need and now plenty of grandchildren enjoy a hotdog smothered in peanut butter. His undying love for our mother, his wife of 66 years, his comforter and care giver, was evident in his eyes. That showed his children, grandchildren and generations to come that True Love does exist. That times can be difficult and beautiful at the same time. The legacy my father leaves is this, a father Stays. He stays and raises his children and shows them how to carry on when he is called Home. Knowing he has prepared them for whatever happens in their life. That the tools they need are safely placed where we can find them. 10599133_10152290042475108_167294392677951294_nEnsuring they will sing and laugh through the good  days and the bad . And we will do it all on time, if not sooner. Jack time.

 

 

 

 

 

 

 

Even Here

My Faith was tested. It was pushed to the limits. I have never felt so helpless, overwhelmed and unprepared in my life. If it could go wrong, it had. 2019 was trying to kill me I was sure.It was trying to suck the life, Joy and Faith right out of me. Somehow, it didn’t. It made my Faith and my Joy stronger. Even Here, in the deepest, darkest days, Even here, I wasn’t alone.

Brett was admitted to the hospital August 4th. After a summer of sickness, and E.R. visits, we were prepping for his colonoscopy. My worst fears came true. As Brett began to vomit blood, I screamed for my husband to call 911. The tests confirmed Severe Crohn’s disease, a stricture blockage and ulcers in his esophagus. He was as sick as I had ever seen anyone. But it was different, he was MY Son, and I was helpless. I couldn’t fix him. He wouldn’t let me leave. So I stayed for almost all of his 14 days in the hospital. He wanted the room dark, blinds drawn, t.v. on E.S.P.N. ( he never watches sports) on mute, for 14 days. I had brought my bible and journal. So I spent time finding comfort in the Word. I was worried sick about Brett. They wanted to transfer him to a teaching hospital for possible surgery. I once again had to close my salon so I could be with him.( By the month of August I had shut the salon down a total of  almost 4 months. Two months for my broken arm, two weeks and a few days for when my parents were hospitalized and put into nursing homes and now this. ) Most days were spent quietly with Brett, while my husband worked.  My husband would come as soon as he could get off of work each day. But I felt so alone, in the muted darkened room. I had to reach up for help.

 

When the doctor names the pain you feel
And the air around you changes
When you don’t know what is coming next
You’re afraid to turn the pages
When the answers don’t give you relief
And they only bring more questions
When you wish that you could run away
But you don’t know what direction
There’s no waking up from this a bad dream
There’s no way to stop a slow motion emergency
Even here
In the unknown
Even now
You are not alone.   JJ Heller
 On the 8th day in the hospital, Brett was going to be transferred an hr away. I would go with him, in the ambulance, and Mark would join us when he could. That day also happened to be our 30th wedding anniversary. Earlier in the year we had booked a cute little cabin on the water for a get a way to celebrate it. As the summer went on we knew it wouldn’t happen, so we canceled it. I never thought I would end up spending it like this. The transfer was taking longer than expected. I was tired and weary and afraid for Brett.  My husband and I ended up saying some cross words to each other and in the midst of it he told me the company he had worked for 15 years would be closing their doors at the end of August. I felt the air leave my body.I stood still. How could this be happening. I know in that moment God took over. I felt a peace and calm, and I knew I needed to be there for Mark. I knew we would be okay. What I didn’t know, was that Mark had found  out about the job loss the day Brett was admitted to the hospital but wanted to spare me the stress. He knew I was beside myself over worry with Brett. So he took that burden away. I feel so badly he felt he had to. When the transfer was finally happening, I walked down one hallway with Brett on a stretcher and the paramedics and Mark walked the other way with the nurses. I turned, and quietly whispered “Happy Anniversary” to him as tears poured down my face. The nurses stopped in their tracks. These sweet women who had comforted Brett for 8 days were now comforting us. Mark came and gave me a quick hug and we said our goodbyes. I knew we were heading into so many unknowns, but I knew Who was going before me.
  Find me in the River
Find me on my knees
I’ve walked against the water
Now I’m waiting if you please
We didn’t count on suffering
We didn’t count on pain
But if there are blessings in the valley
Then in the River I will wait.   (Find me in the River by Delirious)
 Brett was transferred to one of the best hospitals in the country and got amazing care. We were close to family there for support, food and a place to rest our weary bones.  They ran more tests and confirmed the severity of Brett’s condition and even added more to it. Brett was diagnosed with Severe Fistulizing Crohn’s Disease. Which the Dr. said was good news bad news. The bad news was obvious, the good news was that it is almost a guarantee for insurance approval for Remicade. Remicade is a medication administered via infusion to try to bring on remission. I felt relief and fear all at once. But this is what I had spent all summer praying for. Answers and a plan. Just give me a plan. I live and die by a schedule, a calendar and a plan.  This year had thrown all of that to the wind. I knew God was teaching me, His schedule, His calendar, His plan. I need only be still. So after two weeks in the hospital we were going home. A bag full of prescriptions and a plan. He was quickly approved for the treatment and he started them 3 weeks later on my 50th birthday. Honestly the best present I ever could have.
I had been feeling sad about my birthday, but not for the typical reasons. I was sad because my mom couldn’t remember it. She has dementia, so I knew eventually it was coming, her forgetting important things, but I wasn’t prepared. I was born on their 16th wedding anniversary, so she always had a speech she gave to people about me. ” This is my baby daughter Mary, she is the 6th child, 6lbs 6 oz. on our 16th wedding anniversary.” She literally said this for years, to any friend of hers I was meeting for the first time. So when the days were drawing closer to our special day, I would ask her “Mom, do you know what day is coming? “No”. she would say. I would tell her it was her anniversary, then ask her what else happened on their 16th anniversary. ” I don’t know unless it was something special.”  Gut punch. Every time. But I kept asking, because I just needed my mom. I would quietly say, “It was me mom, I was born on your anniversary.” So to have the distraction of Brett beginning his treatment was exactly what I needed.

Exodus 14:14

14 The Lord will fight for you; you need only to be still.

As difficult as it was on us to have my husband lose his job, I also feel it was Gods perfect timing. I needed him home, we all did. We had been through so much this year, we were so overwhelmed, so we all needed the break. The lord is faithful and He provides. We had savings, and I was back at work. Mark was able to be home with Brett in the early days of his treatment. I could breathe easier knowing he was there. But then the rains came…the flooding rains. Our area was hit with over 7 inches, and we had a leak in our roof. Of course we did. I actually laughed, because, why not? I mean what else could happen, wait don’t answer that. So 13 grand later we are getting a new roof. ( Our second new roof this year as we had to put a new roof on the salon building after the tornado damaged it. No, I am not kidding). And God is still faithful. He never said we wouldn’t suffer, that wouldn’t have trials. He simply asked us to lean on Him. So I do. Every morning, with my coffee, I sit quietly with my bible, my journal and my devotional. And I thank God for getting us through. For the patience He is helping me learn when things don’t go my way on my time.I am learning I can’t and don’t control everything. Those were my lessons I needed to learn. My kids always tease me about how often I ask them if they are okay, if everything is alright. It is a habit. While Brett was so sick, I would probably ask him 40 times a day. I was so worried I would miss something. Every time the poor kid entered the room I would grill him. I am working hard to let that go too. Brett’s therapist mentioned that maybe I could try to only ask a few times a day. So I am trying. I bite my tongue, sometimes it works.

 

Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1:2

 

As I sit quietly here tonight, I am in awe of the work God has done for my family this year. This year filled with trials and tribulations. God is good. Brett is doing amazing, he has gained over 30 lbs back. He smiles and cracks jokes again. Mark starts his new job tomorrow. It was such a blessing having him home. He completed almost every honey do list I had. He was here for Brett when he needed him most. And for me. And I have a peace and calm I haven’t had in a long time. A clarity to see things how they really are. Each night when I lay my head to the pillow, I say “Help me Jesus.” He hears our prayers.

Even here.

 

Another New Normal.

Two years. We started this journey two years ago. Doctor appointments, tests, nurses. Two years of googling symptoms, of thinking I could cure him myself. Two damn years of worry, and fear. Today, I exhaled.

  My son Brett, started losing weight. Slowly at first. Enough to notice. Of my four sons, he was my “husky” one. So 20 lbs at first wasn’t alarming. It was more a wonder. Has he stopped just shoving food in his mouth, not caring what it is? Is he starting to control some of his oral fixations? Having autism, food for him is comfort. Certain foods, more than others. Anyone in the autism community knows all about  the chicken nuggets and bacon obsession. So could he be maturing?  Not wanting to miss anything, we made an appointment.

The Dr. Brett saw for years had passed away, so we would be seeing a new one. I was leery as Brett doesn’t do well with Dr.’s or lab work, or anything related. His old Dr. understood him. Knew how to talk to him, to get him to explain his symptoms. I was hopeful we would be lucky twice. As soon as we left his office, I had a gut feeling. That nagging feeling that this wasn’t the Dr. he needed. He seemed to blow us off, told us not to worry, his metabolism was probably changing. I so badly wanted to believe it. So I left the office, praying he was right. Brett also had a rash on his chest that wouldn’t clear up, he was not worried on that either. He said he would do some labs and get back to us.  When nothing showed up, I should’ve been happy. I wasn’t . I knew there was something wrong. But I did nothing. I let my fear of ruffling feathers, of making a scene, of using my voice stop me.

Over the next year we made multiple trips to the Dr. They ran more lab tests, but nothing further. Because he is on disability, and has long term care funding, he has a personal nurse, She would come often to monitor him, check his BMI. She had him drink ensure. He was now down 40 lbs. We were doing everything we could think of. Everything. I am so mad at myself. Furious. I should’ve marched in there, somewhere, and had a sit in. I should’ve been the mom in Terms of Endearment, when she demands they give her daughter the medicine. I should’ve screamed. I couldn’t find my voice. I will never forgive myself for that.

During all this time, my life was in a tailspin. My parents are elderly and failing. At the same time. So my siblings and I had to place them in a nursing home, sell their home and grieve all that was. My head was somewhere else. I stopped fixating on Brett, I had so many irons in the fire. I had fallen and broken my wrist so was off work for 2 months. I was worried about bills. I lost focus. It happens, I know. But as a special needs mom, there is this saying, ” I can’t die, like ever.”  It means that he will need me, us, forever. There is no moving out, no getting married. I dropped the ball.

On June 1st, Brett got sick. We thought it was a 24 hr bug. At least that is how it presented itself. He wanted me to sleep on the couch with him. To watch over him. Like I did when he was a child. As quickly as it came, it was gone.  Until Fathers Day morning at 4 a.m., when it came back. I asked if he was in pain. He said yes. I asked if he wanted to go to the hospital. Surprisingly, he said yes.  Thank God he did. He found his voice that day.

I am incredibly grateful for the NP he saw in the E.R. . As usual when we go into unfamiliar situations, I will whisper “he has autism” to whomever has to interact with him. It matters. It changes how he reacts to them, based on how they speak to him. She Listened to him, and to my husband and I. She showed concern and compassion. She immediately ordered a series of tests. Including a CT Scan and an ultrasound. For the first time in 2 years, I felt heard! After several hours, she came back in to tell us.  She sat down next to Brett, looked him in the eye, and said “I think we figured out why you’ve lost 60 lbs. You have Crohn’s Disease. I was simultaneously relieved and panicked.  Brett being Brett looked at her and asked ” Is it curable or is it like an STD?” Oh how we needed the levity. She laughed and then honestly told him ” It isn’t curable. Our goal is remission.” As hard as it was to hear, I was forever grateful. I looked at her and just smiled. I was crying inside. I was angry at myself. But I was happy we at least had the start of an answer.

Since June 17th, we have had many appointments. We have had many setbacks. We have made emergency calls to the specialists. There is more medication than I can keep track of. Today, we had a very big scare, and we ended back at the hospital. But in the end we were put at ease. He has more testing coming up in two weeks, where they will determine what medications will hopefully put him into remission, because right now he is in a flare, a serious one. My husband and I are stressed beyond limits. People tell me I look tired. I am. Not sleeping from regret and worry will do that to a gal. We truly live minute to minute. That is how quickly this disease acts on him. And we live in this new normal. A zombie like state. I hover over him, picking up his every signal only I can decipher.  We hope for good news with every new test they run. We pray what he eats stays down and gets absorbed. He is severely under weight, anemic and tired.  But he is still Brett. He still says highly inappropriate things, things that make us laugh.  He spends more time with us now, which is new, out of fear I suppose. He is scared, so we are his safe place to fall.

I have relied heavily on my faith in Jesus. For comfort for Brett, for peaceful nights rest for him as he struggles in pain or nausea. I have prayed for patience and grace for myself, so I don’t lash out at others around me, because there is a tornado inside me. Calm, I pray for calm. In my mind as it races and jumps ahead to years my husband and I are older, and beyond. We can’t die. I have cried countless tears, at home, or work. I have many  a

client grab me in their arms and hug me. They see the load  I carry.  I have been held up in prayer by our friends and family, and people I don’t know. I believe it is working. I am working on letting go of the anger I have at the Dr and Myself for not speaking up. Fool me once, that is what they say right? Never again. I am so impressed with his Dr and NP and nurse right now, I can not sing their praises enough.  His nurse today spent a half hr just going over his CT results with us. She knows how to talk to Brett, and understands his humor. At one point in the Dr’s office today Brett had enough, dropped an F bomb and stormed out. We looked at her as she laughed along with us.  “Welcome to the wonderful world of Brett “. we said.  Our new normal.

The House That Built Me

It is a horrible and odd feeling, packing up your parents lives while they are still alive. Putting their memories in boxes, and bags. Being back there, with some of my siblings, but without my parents felt wrong. But extremely necessary. We had to do what many adult children have had to do, face the horrible decision to place your elderly and ailing parents into a nursing home, and sell the house. You can never fully prepare for it or plan it. You simply grab on tight to your siblings and pray that the unthinkable decisions you all are making are the right ones.

My parents had lived in their home, just shy of 50 years. It was an extremely modest home, with a beautiful yard and pool. Enough bedrooms to sleep 6 children somewhat comfortably. The kind of street where all the neighborhood kids could play out on it until the street lights came on. A place where the friends you made on that street are still your friends today. A neighborhood where we referred to the adults as our Aunts and Uncles. Of course there were bad and difficult times, things we would like to forget, But all of it, the good and bad happened in that house on that street.

When mom fell and broke a hip for the second time, we knew we had to face the unavoidable. After her first fall and hip fracture, she was diagnosed with early stages of dementia. We felt okay with her coming back home, and so did the doctors. Mom had been dads primary caregiver as he suffers from a lengthy list of health issues, including arthritis,  a kidney transplant and has a colostomy bag. As a family, we had suggested to them that we felt maybe they should look into assisted living or something along those lines. Like most elderly people, they said no. They wanted to die in their home, no further discussion. If you have met my dad, no further discussion means Exactly that. Now, by no means does that mean that we left them all alone to fend for themselves. On the contrary, we all pitched in to help them stay home. The majority of the responsibilities falling on two of my sisters that live the closest. They took them to doctor appointments, and emergency room visits  and ran errands for them among other things. When my husband and I would come in we would bring groceries, and check off the list of things my dad needed us to do. We all checked on them daily. We all were anxious if the phone rang, knowing it could mean an emergency. Somehow we managed this routine for over a year. My siblings and I were actually more concerned with our dads health, as mom had recovered quite well, except for her repetitive questions. Then she fell, and everything as we knew it changed. It was out of our hands. Mom suffers from delirium after she has had surgery, and this time was no different. The confused state she was in was now permanent, as her dementia had progressed. One of the hardest and most heartbreaking things you will ever do as an adult child is to tell your mom that she can’t go home again.  It cuts you to the core, and changes you. We now refer to it as Ground Hog day, as we have to tell her over and over. Emotionally crippling for all in the room.

Mom is now permanently at a nursing home, while my dad is in the hospital, awaiting another surgery, then hopefully will be transferred to be with mom. They have been together since my mom was 17, and dad was 21. Their dynamic is typical of that era and generation. Mom stayed home and raised the kids and kept the house, while dad worked, hard, until he became disabled at the age of 47.  The term “waited on him hand and foot.” is actually how it was.  My mom took amazing care of my father, she kept him alive far longer than I think anyone ever thought she could. She kept track of all his medications, and appointments and special diets. She doted on him, making sure his

ice water, in his special glass, was always filled and always cold. And that was her one concern when I told her dad would be going into the nursing home too .”Will they be fixing him his food everyday?” she asked with tears rolling down her face. I assured her they would, that she had worked so hard all her life, it was her turn to have people care for her. And Dad, put my mom first, realizing She needed the care he couldn’t give her. That she needed to be safe. That is love. Their love.

The closing on the house will be final next week, so we are sifting through countless boxes of pictures and memories. Deciding what should be kept, what shouldn’t. I know, it is just a house. But it was my house, our house. My husbands childhood home sold several years ago, ( he originally lived on my same street until they moved 5 blocks over) and when we go back “home” he will drive by it and remember the good and the bad. I told him I don’t think I can.I don’t think I can go by the house without wanting to go in, without wanting to run into the back yard, the desire to jump in the pool on a hot day. That house is the house I learned to walk and talk in, where I fell down the stairs and busted my nose. The house that I had countless sleepovers, in tents made of blankets  hung over the clothes line. The house that I laughed and cried in with my sisters, where we told secrets, and healed each others broken hearts. The house where I came home to the smell of fresh baked cookies after school. The house I fell in love at. We are grieving so many loses at the same time. I can’t imagine wanting to go down my street and not stopping . My parents won’t be there. It won’t be our house anymore, so I want to remember it how it was when it was. It will be some other young families turn to make memories. I am okay with that. Or at least that is what I tell myself.

I thought if I could touch this place or feel it
This brokenness inside me might start healing.
Out here it’s like I’m someone else,
I thought that maybe I could find myself
If I could just come in I swear I’ll leave.
Won’t take nothing but a memory
From the house that built me.

Burnt popcorn

I wonder if when they get here they will smell the popcorn we burnt two nights ago? Or will they be flabbergasted by the behavior of the dogs? Will they jot down in their notes how crazy and hectic it seems here? As I brush off the dog hair from the couch for them to sit on, will they question my homemaking skills?Will they question my ability to be the best support system for my son? Will they see the anxiety all over my face?

We have our annual case worker meeting with and for our son tomorrow. All his case workers will come to our home to assess him and us and our home. Nothing to panic about at all. These are nothing new to us at all. This should be a piece of cake, right?  Yes, if it is a cake made out of glass and nails. This is difficult, and heart wrenching . We have been doing a variation of these meetings for 17 years. Not always in the home, but always stress inducing. The questions asked are personal, and hard to hear and answer. Our role in things has changed as our son as grown. Where I used to do all the talking and answering of the questions, now I sit and pray what he says doesn’t offend anyone, or raise an eyebrow. I brace myself for the blame thrown at me  that he uses as a defense mechanism. I stare at the case workers hoping they can hear what I am saying in my head. And my heart breaks a little each time. With each jab thrown my or my husbands way, I hope they can see we are doing all we can. More importantly I hope they can read through his sharp tongue and wit to see the truth.

No one ever tells you these things. How when you know these meetings are coming you are in panic mode for the weeks leading up to it. They don’t tell you when they are little and you are in control of everything to get them help, that eventually they grow up and your role changes. That you have to stand in two worlds, making decisions for your adult child, that you prayed he would be able to make on his own. That you have to walk a tightrope, to treat him with respect, while still treating him like a child. But he is not a child. And that is heartbreaking.

Someone asked me the other day if they “grow out” of autism. The simple answer is no.  When he was a child, even with having autism, we could excuse away some things because of his youth. Adulthood seemed so far off. And then he became an adult, and there was nowhere to hide. The services he had in school vanished and we had to start over.We had to begin again. We have had many case workers. Some who understood his humor, and how he hides behind it. Some did not.It is like a box of chocolates. You never know what you are going to get. Tomorrow we are meeting some of them for the very first time. I will spend the first half of the assessment apologizing for the things he says, making sure they understand he is joking. He calls everyone he meets for the first time a communist. He means it in the nicest way possible. I will make sure they get that we always answer questions with lines from our favorite movies. I will brace myself for the bus he is about to throw us under. I find tire tracks appealing. And hopefully after it is over, we will all laugh, ( I will wait to cry until I close the door behind them) and surely they will make that little check mark in the box saying all is well. ( quit calling me Shirley.)

A Different Journey

We had another meeting, for our son. Another meeting for another plan, another job. It was one of hundreds of meetings over the past 15 years, and certainly not the last. However, this time, one phrase kept going through my mind. A phrase I borrowed from a friend. She had posted to her Facebook page “Not my Journey.” It clicked instantly in me. And while I had no exact idea what she was referring to,it hit home with me. Square in the gut. Not my Journey, my new Mantra.

As the meeting began, and we were introduced to some new case workers, my son didn’t want to sit down. He wanted to stand. It bothered me, but, he was comfortable standing, and was being involved, so standing worked fine. I have learned slowly over the years to not over take the meetings or conversations. But I somehow would either whisper, or give a knowing glance to the case worker, making my ideas known. The things I wanted for my son. What I thought was best.And while there was a time and place for that, maybe that time and place are gone.

I tried my best to sit quietly as they asked him questions. The usual questions that frustrate him to no end. “What are your interests? What type of job do you want? Do you want to work with people?” etc.  Most times, I would butt in, adding my two cents. Which in turn would ALWAYS result in my son looking at me with contempt, telling me to be quiet. Yet I would figure out ways to speak over him. Today, I started to. I tried asking questions, about classes at the tech school. “Mom, I don’t want that. I don’t like classrooms. I learn better on my own.” He was right. And the phrase that had been bouncing around in my mind settled firmly. Not My Journey.

Yes, this scenario with this son, is completely different than the scenario with my three other sons. Yet, it is the same. My other sons have all made their own decisions when it came to where they went to college, what they would study, where they would move. And while with this son, we HAVE to have perimeters on decisions he makes, we have to guide him as best we can, in the end, it is Still Not My Journey. We would never allow him to do anything unsafe or not good for his future. But I will no longer put My wants and needs into his journey. I didn’t for the other three, I won’t for him either.

I would Love to have input with all of my sons on their decisions.But, in the morning, when their feet hit the floor, they walk a path for themselves. If I had my way, my sons would all live nearby, giving me more grandbabies than my arms could hold.However, as I sit back and watch my adult sons continue on their journeys I see that probably won’t happen.Because their roads wind a different way than mine. Beautiful all the same.

I am hoping this New Year helps me to let go of all the things I so desperately want to control, but know I shouldn’t. I hope it helps me relax and enjoy watching where all their journeys take them, And maybe, enjoy where mine takes me.

The River

River:a natural stream of water of fairly large size flowing in a definite course or channel or series of diverging and converging channels.

This past Thanksgiving weekend was not what anyone would call the makings of a Hallmark movie. I knew this one would be different, and I had spent a few months trying to mentally prepare myself. I had told myself and anyone who would listen that I was fine. That I was really looking forward to a quiet day, just my husband and Brett. That I was looking forward to not having to cook and prepare a huge meal, all the shopping and prepping and mess. I was going to make steaks, and decorate the house for Christmas, and we would skype with the other boys once Bryce and his girlfriend got back Thanksgiving night.I was convincing myself that I could do it. Apparently, I am a terrible liar.

I knew the upcoming holidays would be different this year. Our son in China had informed us he couldn’t be home for Christmas, but would be home in late January. Asked if we could leave up the decorations, and tree, and we could celebrate then. I was sad, but excited to extend the season. It will be fun, it will be fine, I repeated to myself. Our son Nate who recently moved to Tacoma Washington was hoping to make it home for Christmas with his girlfriend, but we discussed it and decided it would be awesome to have them all home in January. It will be okay, I thought in my head. Our son Bryce’s college break wasn’t going to start until December 23rd, so I was sad that I wasn’t going to spend anytime with him and his girlfriend before Christmas, but it was just fine. Really.

The weeks and days leading up to Thanksgiving were weighing heavily on me. I tried to push back the sadness I was feeling. I dove headfirst into Christmas music and movies. I shopped, and baked and sang. And tried to drown in the river of emotions I was feeling. I had to force myself out of bed to go to work. I didn’t want to go anywhere or do anything.

I awoke on Thanksgiving morning and knew. I was off. Susie Sunshine was taking a day off too. As I sat on the couch, alone, at 5 a.m. I began to cry. I thought, “get it out of your system, before anyone sees you. Get it together lady. But the tears just kept coming, like a river flowing. My husband, sensing the impending doom, had promised to watch the Thanksgiving parade with me.He NEVER watches it. Ever.  He came downstairs and asked if it had started yet. As he sat down beside me, the tears picked up their flow. He wrapped his arms around me. “I’m sorry” I said. I explained that I was trying to stop, I really was. But I couldn’t. Who did I think I was? Having a pity party for myself because my sons were doing what I always hoped and prayed they would? I knew there were people who were ALONE alone for the holidays, people who were sick, people who were widowed etc. I knew this, but I couldn’t stop. My poor husband didn’t know what to say or do. He left the room, to take a shower, and my son Bryce came into the room. I had rolled into a ball onto the couch and covered myself up with a blanket, and put Christmas music on. The song River came on:

It’s coming on Christmas
They’re cutting down trees
They’re putting up reindeer
And singing songs of joy and peace
I wish I had a river
I could skate away on

and I began to sob. “Are you okay mom?” I heard my son say, as he came to me, and bent down to hold me. My 6ft3 son, was on his knees trying to hug me, as his dog, my grandpuppy jumped in between us as if to say “I’ve got this dad.” He asked if I was ok, I told him I would be. I wasn’t and didn’t know when I would be, but he didn’t need the guilt or worry. My son Brett came down and hugged me only the way he can, patting me on the head saying “come here momma”. They loved me and were worried, and I felt so guilty. But the salty tears fell. What in the heck was wrong with me. Where had I gone?

My husband decided to take us to a movie. I told him I was fine, and that it would be okay to stay home, he didn’t have to worry. He knew better, and away Mark, Brett and I drove the half hour to a theater to see Bad Santa 2. My eyes were red and swollen, no make up would conceal, so I didn’t bother. I felt so loved and taken care of, but I couldn’t shake it.When we got there, I told Mark to get me popcorn, and as I sat in the dark theater, waiting for the movie to start, I leaned over to my husband and said ” Now I know why Peppermint Patty was so pissed about eating popcorn and toast for Thanksgiving.” We were the only ones in the theater, except for one woman all by herself. I felt so bad for her, wondering what her story was. Why was she here, alone on Thanksgiving.

On the way home, with Christmas songs on the radio, I began to cry again. I turned my face to the window, thinking I could somehow hide. “Is it happening again?” my poor husband asked. I wanted to scream to myself “SNAP OUT OF IT!” We came home and I began to prepare our steak dinner. Bryce and his girlfriend Erin would be arriving soon from the other Thanksgiving dinners they had to attend. I was feeling myself coming out of it. We would be skyping soon with our Nate and his girlfriend.  Surely it would help. As his face popped up on the computer, the first thing he said was ” Mom, you look so sad!” and in perfect unison my husband and sons said “she is!”….”Oh mom, I am so sorry.” Nate said, and I felt so bad. Guilty that I had ruined their holidays. That I had wasted precious time off from work sulking and acting a fool.  My son and his girlfriend Emma, were happy, and enjoying being together , and that made me happy. We talked for an hour and I told him once we pinned Tony down on a firm date for January, we would plan when they too could come home.

You know a dream is like a river
Ever changin’ as it flows
And a dreamer’s just a vessel
That must follow where it goes
Trying to learn from what’s behind you
And never knowing what’s in store
Makes each day a constant battle
Just to stay between the shores.

Sunday morning we skyped with Tony. I had been looking forward to it for a while. We hadn’t in about a month, and there was new exciting things to discuss,but most importantly we would know when we would see him in person again. ” So, did you buy your ticket yet?” I excitedly asked. I was feeling more like myself, and hadn’t shed a tear since Thursday. “I am not coming in January now mom.” I exhaled, as all the color left my already pale face. I instinctively pulled my scarf up over my mouth and nose, thinking, once again, I could hide what was about to happen. ” I am sorry mom, are you ok? You look so sad.” he said. I handed the computer to my poor son Bryce and retreated to my crying room,aka the bathroom.I shut the door and the river of tears picked up steam. I could hear my husband, slight raised voice asking why, explaining how fragile I had become. I knew I had to pull my big girl pants up, and face my new normal. Tony had decided to come in summer, he said so he can spend more time here.I wanted to believe it. We talked for about an hour, and he apologized over and over. “I am not keeping the tree up til summer!” I told him half joking. The conversation ended, and I went upstairs to put laundry away and cry. Brett found me, and wrapped his arms around me, patted my head and said”come here momma.”

I am blessed beyond measure, I am loved deeply. I am cared for. This is a new stage, a new current I have to learn to flow on.

“Have you also learned that secret from the river; that there is no such thing as time?” That the river is everywhere at the same time, at the source and at the mouth, at the waterfall, at the ferry, at the current, in the ocean and in the mountains, everywhere and that the present only exists for it, not the shadow of the past nor the shadow of the future.”
Hermann Hesse, Siddhartha

My sons will always be my sons, no matter where they are, no matter where they spend their holidays. Like a river, we will come up against rough currents, and rocks. But there will also be beautiful, peaceful moments, where we all can feel home again.

 

 

 

 

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