Thursday, December 5, 2019

Opa

I'm posting a blog, which means, another major life event has happened.

No, no babies being born this time...this time, the event is not exactly joyful...

In the early morning hours of November 22, our family lost my Opa. Even typing out that sentence feels strange. Logically, I know he's gone; but emotionally...emotionally I am standing in a fog trying to grasp my bearings.

When I think about my Opa, I picture him in his red chair next to the fireplace. His chair, unlike Oma's matching chair that rocks and swivels, is a solid, unmovable piece of furniture (symbolic for sure) that he resided in most of the times I remember walking into their house. Next to his chair, on the table, would be an insulated mug with water and a opened, half-eaten bag of pretzels. He would smile and wave and greet everyone from his humble Opa throne.
That's where he was the last few times I saw him in the weeks leading up to that morning where we said goodbye.

He was diagnosed with glioblastoma, a fast growing, cancerous brain tumor in September after Oma noticed some odd behavior changes. The news was, of course, not what anyone wanted to hear. There was nothing to be done as far as treatment due to his age and other health complications. The doctor seemed fairly confident that he would make it through the holidays, and to hopefully to meet his newest great-grandchild due in December.
Over the next several weeks his abilities declined, his mood would alter, his usual "what do we have to do to beat this" approach dissolved to a much more reserved "here is what I want for my last days" outlook. Through all his years of cancer battles and health struggles, I could tell early on, this time he knew he couldn't work his way out of this one. This alone, broke my heart.
We have been spoiled with Opa miracles. The most recent and significant was this time 5 years ago. He was on a ventilator in the ICU after he aspirated into his lungs during a surgery for pancreatitis. The doctors and nurses all spoke hopeful words, but we could tell they felt his outcome was bleak. When he finally started to breathe on his own, when he finally gained enough strength, he left that ICU and came home just before Christmas. All that time we feared we would be planning a funeral, not a homecoming...I knew God gave us the best present possible that year. He gave us back Opa...but I knew we couldn't count on this outcome for very much longer.

My mom told me over the phone his diagnosis when they were told. I tried to stay strong, but inside I was sad and fearful. I knew at that time, any free weekend, I was going up to sit with him. I had no great life points to discuss, I had no unfinished business I need to complete...I just wanted to sit with him, in their house, he in his chair, taking in the last few times things were as I remembered them growing up.

I received a hurried call from my Mom on a Wednesday morning. She said Oma called her, frantic. She couldn't wake up Opa. My Mom told me she was on her way to their house and would let me know any updates. I got off the phone and sat at the edge of my bathtub and asked God to be with Opa. I asked him to be with my Oma, and my Mom, and all of us who knew by this sinking feeling in my stomach...this was it. With a returned call from my Mom, confirming my fears, I called Chris home and made my way over to Oma and Opa's house. I was greeted by my uncle and was told everyone was in the bedroom. Opa lay there, non-responsive, struggling to breathe, seeming agitated and uncomfortable. My youngest sister, Caroline, had already arrived, and my Mom lay by Opa's side on the bed, holding his arm. I told myself to be strong for her. I knew she dreaded this day, and I knew I could brake down later, away from her.
Caroline and I then began reaching out to the rest of my siblings. By the afternoon, our family filled the house. Some could not come, for they live out of state, but those who could come, showed up with in hours of being notified. At one point, we all stood around his bedside and just talked about mindless stuff, just conversation to fill the silence, but I think Opa knew he was not alone. In fact, I think he knew there was so much love for him, his soul was at peace. I remember on that cloudy day, a strong break in the clouds and for a brief moment, the bedroom filled with light. I think a big part of his soul went to heaven then, surrounded by family, knowing he couldn't have asked for anything more.
His body fought to hang on for a bit longer. I saw him again Thursday night, knowing it wouldn't be long now, I left with a heavy heart. My plan was to be back up at their house again as early as possible Friday morning. Finn had a hearing test scheduled that morning, and I was just counting the hours until I could go back up there. I did not know then he had taken a turn for the worse less than an hour after my departure.
I went to sleep relatively fast, actually. I said my prayers for Opa, Oma, my Mom, and the other family members taking care of him and I drifted off quickly. I woke up at 3:30am with heavy sadness. I cried silent tears and tried to go back to sleep. My alarm would sound at 6am and I would be exhausted without more rest. But I couldn't sleep. I cried more and then felt something odd. I was convinced if I looked at my doorway, I would see Opa. I was so afraid I just laid there with tears running down my face...I knew something was different.
I finally fell back asleep about 20 mins before my alarm sounded. I got up with one goal only: get the hearing test done and get back to Oma and Opa's house. I turned on the shower and promptly heard my phone receive a text. My stomach somehow dropped to the floor and jumped into my throat at the same time. My Mom said "Call when you get up." I immediately called without a thought in my mind only to hear her shaken voice on the other end.
Opa died around 4am. Somehow, I knew. I knew when I woke up crying. I knew when I felt him in my doorway. I knew he was saying goodbye.

I went to the hearing test with Finn. He passed the test with flying colors. I went home and left the kids with Chris and I went to Oma's house.
Inside there was a flurry activity. Opa had already been picked up from the bedroom and everyone was gathering hospice equipment, collecting medications, doing laundry...I sat in the familyroom with Caroline and my Dad.
Why was everyone moving so much? What was the big rush? I just felt like melting into the floor. I soon understood, they were moving, cleaning, organizing, because if they sat still for a moment, they too would crumble.
"Who am I without him?" my Oma asked.
Who are we without him? I wondered. He was our foundation...in ways I didn't appreciate until that moment. We all leaned on each other, and we were strong, but take away a pillar, and we cannot carry the load.
I got to work myself, cleaning the carpet next to his bedside where he had spilled a cup of tea days before. I scrubbed the stain with his shoes sitting nearby. What do you do with his shoes? Do you leave them there? Clearly they won't be used again, but to put them away seemed too sad. Do you want to stare at the reminders that he is no longer there? Or do you want to stuff items away and act as if this didn't happen?

I finished cleaning the carpet and stood up to see his collection of candy on his dresser. A collection that has been there since before I was born. He had a crystal bowl full of hard candies that lived on that dresser and before we left our visit, the grandkids would parade down the hall to their bedroom where he would bring down the bowl and let us pick a piece. I remembered cherry candied gumballs, spearmint wheels, smarties rolls, cinnamon rounds, butterscotch discs, and chocolate peppermint patties. I saw tins of Altoids stacked up, each reused and filled with a different blend of candies. I distracted myself before breaking down and continued to "sort out" the house.

No one would have guessed back in September that we would only have 2 months. That we wouldn't make the holidays that were so precious to us all. We all knew this was coming, but we all sat in a daze at its swiftness. Before I left, I did ask Oma for one of the tins of candy. I just wanted to take a part of him home with me I guess. I placed the tin on my dresser...I haven't moved it since.

How can he be gone? My brain understands the answer, but my heart...my heart can hardly accept it.

That night, back at home, I went to change out of my clothes. As I pulled my shirt off and I smelled the scent of  the carpet beside his bed. It hit me hard. Memories, voices, pictures, and moments in time crashed into my brain. I couldn't breathe and my hyperventilation syndrome kicked in fast. With a numb face and hands I walked into Chris' study sobbing. He laid beside me on the floor as I slowed down my breathing before I went completely carpopedal. My mind was racing.

It's all different now.
Lines from movies kept filtering in my mind.

"Will we never all be together again?"

"I talked about [him] and the love he left behind."

"The world didn't care. Nobody cared...not like us..."

I have always been a fan of movies that deal with loss and grief, and now this haunting me...I remember praying to God, praying to Opa: "Please, please give me a sign he is ok. Let me know he is still among us, watching over us." I wanted some confirmation of his arrival into heaven like a Amazon delivery update.

The next few days were a blur. Throw in Thanksgiving and you basically have a day where everyone was collectively trying not to break into a panic attack with grief. Then, then you have to decorate for Christmas while feeling most un-jolly. We were gathering pictures for his memorial, I was putting together a slideshow (Opa loved our slideshows); Lorelai's birthday was also in that mix...it was all just a mess.

I sat looking at my Christmas tree. I have such beautiful ornaments with such significance...and yet, no ornament that really reminded me of Opa. I had to fix that. I printed out one of my favorite pictures of him and I put it in a tiny frame to place on my tree. He is holding baby Lorelai on his birthday, in his chair, smiling.
I then wanted to make my mom something for her tree. I got crafting and I came up with something quite lovely. I felt better.
Then something strange happened. I couldn't find my scissors. These scissors sit in my knife block on the kitchen. I have used practically daily for years and I have never misplaced them.
There is something that happens in grief that is a lot like "pregnancy brain." You forget the simplest things, you are easily distracted, you are in the haze of "what was I just doing?"
I chalked it up to that. I retraced my steps dozens of times. I looked in every possible place I had the scissors...even riffling through the trash. Nothing.
This lasted for days, I was really very irritated.
They finally revealed themselves to me days later. I found the scissors in the back corner, under the stool, in the pantry.

I spent a good half an hour trying to figure out how the heck they got back there. I had no explanation, but I was happy to have things in order again.

The memorial service came and went. I held it together well. The slideshow was (and is) still moving for me. We even have him playing the piano for the music. I think it would have made him proud.
After the service we went back to Oma's. At one point my uncle was using Oma's scissors and didn't put them back in the designated spot. I heard her say:

"Put the scissors back, I need to know where my scissors are. I even made your father (my Opa) get his own scissors because he kept taking mine and leaving them in the strangest places."

I paused.
I told Oma my disappearing scissor experience and she showed me the scissors he got for himself. His scissors were just like the pair that went missing. My sign? My sign that he is ok, that he is watching over us, still apart of us? I took this whole bizarre event as a "yes." I still don't know why the scissors, it was not the sign I was expecting...but I did use them while cutting out pictures of him. I don't have an explanation, and I may be reading too much into it...but it filled my heart with hope.

I still have moments where tears flood my face. I suspect I will have that for awhile, even with my sign. Knowing he is in the most beautiful place possible with all his dogs and other family helps, but his absence is glaring and saddening.

Christmas Eve we will walk into that house and a part of me will still expect to see him sitting in his chair, smiling. Even though I won't see it, I have a feeling he will still be there. As he said before he died with a single tear on his face: Family. Family is everything.


We love you Opa, we miss you.

Thursday, October 4, 2018

Do What You Gotta Do

If you get your kid to recite the list of DC's Super Hero Girls' pets and their names to derail a panic attack at Ikea, you might be a spectrum mom.

Friday, September 28, 2018

Entering the Aspie World

Back in March I wrote a BLOG ENTRY describing Lorelai's recent struggles. Today, I will update.

We have been seeing a behavioral counselor for about 6 months now, and well, while she has gotten a bit more calm in certain situations, she has plateaued in most areas. She also has developed more difficulties over the summer. We now struggle with school work due to intense, immediate anxiety, and she has developed a sleep disorder. (To be fair, this could have been going on longer than I realized but we are very aware of it now.) She either takes hours to fall asleep and/or she wakes up for no apparent reason and takes 1-3 hours to fall back asleep.

I talked to her doctor and his nurses and he prescribed her an anti-anxiety medication (the one he recommended back in March) and we started her on it a few weeks ago. Since then we have seen minimal progress with general behavior and her sleep issues had zero change. The doctor said to try Melatonin or Benadryl to help her get to sleep. While this helped her get to sleep quickly, she was still waking up almost every single night for hours at a time. This past Thursday we saw her doctor and discussed her difficulties, her behavior, her progress with the meds (and lack thereof), and general observations and concerns. Ever the prepared student, I had compiled another list of all these things (along with a sleep log I did not take).

After talking with him, after he consulted with her counselor, after reading my list, after interacting with Lorelai, he has altered her diagnosis. While she does suffer from high anxiety (her previous diagnosis) and she has OCD (also her first diagnosis) we now see she deals with a lot of sensory processing issues, of course the sleep disturbances, and possibly dyslexia...all these things are pointing to a more cohesive diagnosis, one that falls on the spectrum. For those who wonder what that means, it means the Autism Spectrum. He was very quick to point out just high-functioning she is, and I had no doubt about that; this makes her fall into the Asperger side of the spectrum. He asked if I was surprised to hear that, and the answer was: No.

Ever since I started noticing her "quirks" and difficulties (some track since age 2) I wondered. As the years went on and the traits started piling up, I had a pretty solid feeling there was something more to it. While she does deal with a lot of anxiety and OCD, it is not in typical, traditional ways. Her initial diagnosis was a starting point, but I had it on pretty good authority that we would end up here; in the Aspie world.

A few people have asked "how do you feel" about her new diagnosis, and honestly, I feel very much the same as I did before Thursday. There is a slight difference I suppose...I feel confident that all my research and reading has prepared me to help my child and get her the assistance she needs. I feel relieved that I was not over-analyzing her; my instincts were correct. I feel a bit overwhelmed at the longevity of her confusing and bumpy path, but I also feel this is more than manageable, this will all work out the way she needs it to. Everyone is in her corner. Her doctor, her counselor, her family, our friends...plus, she is stubborn as hell, she won't quit until she's good and happy. (I mean that in the best possible sense...most of the time.) ;-)

Her doctor expressed his confidence that even though we won't figure out what works for her over night, he feels strongly he can help her. We all need to be patient and persistent with her meds, her counseling, her schooling, and with her precious little spirit.

She is quirky, sure; but more importantly she is smart, loving, inventive, and one of my very favorite people to be around. Asperger's just got a whole lot cooler. I would expect so, they just got a "Fairy-Robot-Pirate-Princess." ♥

Age 4, a costume concept all her own...and one of my favorite things she's ever done.

Thursday, March 1, 2018

The Syndrome Mix

These days I do not post unless there is something weighing heavily on my mind, and this post is no exception.

Last Friday, we had a behavioral assessment with Lorelai and her pediatrician (who specializes in  behavior disorders). I came in the room with a literal list of behaviors and tendencies I have noticed with Lorelai. Some are more recent, and some have been characteristics of hers for years. After our assessment, her doctor diagnosed her with a General Anxiety Disorder (GAD) and a degree of Obsessive Compulsive Disorder (OCD). He informed me, at this point, Asperger's was still a possibility, but he was unable to diagnose her with such so early on in his evaluation. He recommended behavioral counseling with the option of introducing medication if counseling does not help her through her current issues. Basically, she falls in the "Syndrome Mix."

We met with the counselor today, and I am very encouraged. She is warm, friendly, and supportive. She uses art therapy and hands on applications. She is going to help Lorelai identify what anxiety is, what it feels like to her, and how to recognize the different intensities of anxiety with certain situations. She will work with her to relax on her routines, object placement, and repetitive actions.

While we are just starting out on this journey, I feel we are arming Lorelai with the skills she needs to go on and live a more peaceful life. While her anxiety, obsessions, and compulsions will never completely subside, the goal is to teach her to work through them and push past them to reach a more comfortable state of mind. Medication might be added, diagnosis might be altered, but the goal remains the same.

I struggled with sharing this with people outside the family. I felt by announcing this I would be labeling her with some sort of negativity. After thinking, stressing, researching, talking, and thinking about it again...and again, I decided that I will not let this diagnosis define her and restrict her. While it changes how she may process things, she is still wonderfully Lorelai...and being self aware and mentally fit is never a negative.
There are so many kids out there battling anxiety, OCD, autism, depression, self-esteem, etc. My child is very high-functioning with her issues, but other families are not so lucky. These diseases should not strike fear or concern. Each child with special needs, whether great or small, deserves patience and kindness. Lorelai has a long enough journey ahead of her without worrying about the stigmas that come with these labels. I won't hide her GAD/OCD because I am afraid how other's may react. If you have Lorelai in your life, you have all of Lorelai.

She is passionate, intelligent, clever, thoughtful, funny, kind, reflective, and honest. She's got this.
Not a doubt in my mind, she's got this.


M.LEWIS   

Wednesday, August 16, 2017

The Current State of Humanity

"It's a long road to wisdom but it's a short one to being ignored."

This quote is from a song. It struck me. In a world of quick posts and picture uploads we take just a few seconds to share how we feel and what we think. We read the news, see the pictures, and watch the video footage and we get all worked up. Frustration, anger, confusion, these things spiral together inciting a post expressing our opinions and we feel a bit better. We let "the world" know how we feel and where we stand. We pride ourselves in "doing something about it." All of us have done this in some capacity at point or another. Is the world a better place now that we have all stood up to injustice? I mean, it should be a lovely, peaceful place seeing all the Facebook statuses, the Twitter posts, the Instagram uploads...but it's not.

Words are wonderful. A beautifully constructed sentence can inspire and motivate anyone to be stronger, braver, and more compassionate. Quotes about past wisdom and experience can open our minds to new perspectives, new aspirations. Words can start progress. Words are just the beginning...but most falter on what should happen next. We do not follow through.

"Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that."

This quote from Dr. Martin Luther King Jr. has been shared countless times. It should be shared. It's a wonderful quote. Simple, visual, inspiring, and well, correct. His words are meant to drive you to shine light in dark places. Dark places like the over-looked corners of our communities that are in desperate need of basic needs. Food, water, clothing, shelter...kindness...compassion. Dark places of the mind. Depression, PTSD, bipolar disorder, drug addiction, alcoholism...hopelessness...fear. Dark places of the heart. Racism, bigotry, prejudices of all kinds...anger...hate.

You have shared the quote on social media, but what have you done to drive out the darkness? Have you given to a community pantry? Have you donated school supplies to children who can afford them? Have you volunteered at a homeless or domestic abuse shelter? Have you given money to help provide medical attention to new mothers and their babies? Have you volunteered at a crisis line? Have you donated clothes, coats, and shoes to those whom have none? Have you acknowledged that we all could do so much more for one another? Giving kindness and compassion to those who are less fortunate is not just telling them "you care," it's accomplishing something so much greater, it's showing them "you care." You care about their well-being, you care about their children and their future. It is addressing the darkness that looms over them and it is providing them a light to hold on to. A small, but strong symbol they can lean on at their weakest. If everyone provided more light instead of just talking about it, the darkness we see will not feel so overwhelming. The light of compassion does not filter through race, religion, gender, or any other label.


Providing kindness and caring to those in need is a long road. 140 characters on your beliefs is at most a quick fix, but quick fixes will fade and be forgotten. We all can and should do more.
Action is our greatest tool to drive out darkness, not words...words are just the beginning.


Find ways to spread the light here: https://greatnonprofits.org/

Saturday, June 3, 2017

Summer Means "Get Things Done"

Goals for this summer:


  • Organize the laundry room
  • Clean out and organize the garage (BIG job)
  • Pack and store all baby/small clothes and shoes
  • Fully move Finn into his room (meaning everything from my room - diapers/clothes/wipes/hamper/blankets/dresser,etc)
  • Paint the girls' rooms (green and pink, respectively)
  • Refinish/paint a couple different pieces of small furniture
  • Add more dirt/mulch to the new tree out front and reset the stakes
  • Clean out and organize guest room closet
  • Add extra caulking around the windows
  • Baby proof outlets/cabinets/sharp furniture (we have a crawler!)
  • Buy and install at least 2 ceiling fans 


I'm sure there is more that needs to be done, but these are the main jobs I want to accomplish...and all these need to be done in 3 months with 3 kids, not including VBS, Lego camp, and who knows what else. I may have set my goals on the lofty side. We'll see! I mean, it gets dang hot here, fast...I don't do outside and hot at the same time...got to have something to do. ;-)


M.LEWIS

Wednesday, March 29, 2017

Decorative Beads

Ok, this "copycat for less" post is inspired by this lovely lady's design. (See below) I stumbled upon these and loved them.
Yes, they serve no other purpose but to look pretty, but for this designer, that's enough. So, I decided to make my own.

Wooden beads, crocheted beads, loose glass/gemstone beads, and ribbon. All through amazon. I like it, there are things I would do differently if I chose to make again, but I still love the look! I think they would make great gifts too.



Wooden beads: https://smile.amazon.com/gp/product/B01FM56K3I/ref=oh_aui_detailpage_o02_s00?ie=UTF8&psc=1

Crocheted beads: https://smile.amazon.com/gp/product/B01IBD099E/ref=oh_aui_detailpage_o02_s01?ie=UTF8&psc=1

Glass/gemstone beads: https://smile.amazon.com/gp/product/B01KUH3RFW/ref=oh_aui_detailpage_o02_s01?ie=UTF8&psc=1

If I give it another go around, I will update!

UPDATE::: The Aloha Bead's newest design...looks familiar! ;-) ;-)



M.LEWIS