Oma

 This is about my 4^th attempt with writing this. I tell myself, “Don’t make it too long, don’t worry about writing down everything you find meaningful” then, 5 pages in, I’ve realized I’ve done the very thing I was avoiding.

The issue is, I have 38 years’ worth of memories and stories with Oma. She was my mom’s mom, and she was very much apart of a lot of our lives. It’s hard to narrow down and share just a few meaningful moments onto a couple of pages.

I described Opa as our foundation, our main structure of support, but if Opa is the foundation, the walls, and roof; Oma was everything that filled the house, and I mean that both metaphorically and literally. For anyone who was apart of cleaning out their house would tell you, she filled up every corner with something meaningful and sentimental. She’s the hand-made curtains, the antique cuckoo clocks, the patterned wallpaper, the sconces, the shelves filled with worldly souvenirs, the many collections of rosemaled plates and boxes. She’s the pewter candlesticks, the photo albums, the quilts, and the Canada geese in the yard. She’s the gnomes, the Christmas ornaments, rocking chairs, and the spinning wheel in the corner. Cleaning out their house was sifting through everything she held dear. Pulling things off shelves and out of closets was symbolic of the dismantling of the lives we knew with both Opa and Oma.

We have been without Opa for about 5 years now, and Oma didn’t take long to show cognitive decline not too far after his passing. It was clear she needed more help a couple years ago and the family made the decision to move her out of her house. That first step was incredibly difficult to witness. She loved her home and all her things. It broke my heart to know she had to leave all she had left of a life she loved.

Her mind continued to decline. Names escaped her, timelines were off sometimes by fifty years or more. She didn’t even remember that Opa had died. She didn’t remember that her parents had died. It was incredibly sad to watch her fade away. Her memories, her stories, they were everything to her, and to have those erased from her seemed particularly cruel.

All those years of her telling stories, sharing memories, it was up to us now to remember and carry her stories along with us. Her doll that was saved from the fire, the painting of her “fairy tree” out her childhood window, the house miniatures her mother made; my mom knew everything she had told her. My mom was her only daughter, and seeing as Oma had great pride in the female lineage of the family, she entrusted her with making sure certain items were to be handed down to certain people. That those who inherited said items knew the meaning behind it, and felt the weight of its importance.

She rosemaled a plate for me years ago with this very sentiment. “Life affords no greater responsibility, no greater privilege, than the raising of the next generation.” This was painted along the border, and on the back, she listed the female lineage of the family. Lines of names that ended not with my name, but the names of my two girls. In a culture that focuses on male successors and names, this was particularly special to me. This honored the women that I came from, the women my girls came from. The women who filled the house.

I could talk about all the hundreds of details I associate with Oma, the holidays, the geese, the paintings, the jewelry, but that would turn into a very long chapter book. We, the family, all know those things, but what are the things that are just mine? My memories. My moments with Oma, just a few…

Oma made me several dolls when I was little. One doll has a heart painted over her heart with “I love you Megan” written around it. Even the doll I would carry around as a child had her touch. She hand-painted the face on “Baby baby,” and I would bring her over for touch ups over the years.

She gave my first jewelry. A tiny gold ring. Rings are still by far my favorite piece of jewelry, and she would take me every birthday to go shopping for new pieces. When I lost a polished coal necklace I got as a souvenir from a trip, she gave me a carved coal sculpture she had to replace it. A little old lady, and she sits on my shelf today.

She gave me my first coffee mug. She picked it up at the old house in downtown Plano where she taught her rosemaling classes. On it, printed in Swedish, it reads “God who holds the children, dear; Look after me, who is so little.” I would sit with it and have “coffee” with her and my mom.

Once I reached the age where I could handle it by myself, she would put me in charge of decorating the little Christmas tree in the family room on Thanksgiving. While others watched the game or played football in the front yard, I got to put up the first tree of Christmas. I understand it was meant as an activity to pass time, for I didn’t have anyone to play with; but it always felt like an important job, and I looked forward to it every year.

I was the only granddaughter for many years, surrounded by boys, both brothers and cousins. I was desperate for a sister. I had my hopes up when my mom was having her 5^th baby. We did not know if the baby was going to be a girl or a boy until it was born. I awoke to my Oma late at night, she told me mom was going to have the baby soon, and asked if I wanted to go to the hospital to meet the baby. I, of course, said yes and rushed to get ready. My brothers stayed home with Opa and just Oma and I went to the hospital. We shared peanut m&m’s while we passed time in the waiting room. My dad finally appeared with 2 tiny footprints on shoulder of the scrub top he was wearing. When I was told she was a girl, I was overjoyed. I finally had my sister. Oma was so excited for me. My mom only had brothers, and Oma had only a brother, but Oma’s mom had many sisters. Oma would tell me how special it was to have a sister. That story she would tell for years and years. In the early stages of her dementia, she would recite this story every time she saw me. I found it odd she was recalling it so frequently, but as the disease progressed and erased this memory from her, I would have given almost anything to hear her relive those moments again.

She would come over to our house every week the first year I was homeschooled. She taught me Texas history. She would write out quizzes and tests. Not doing well in front of a teacher was one thing, but in front of Oma? Not an option. Luckily, she passed me with no hesitation.

I wore her necklace on my wedding day, the same necklace she wore on her wedding day. She gave me a hand-made handkerchief to tuck into my bouquet as well. I plan to loan that to my girls on their wedding days in the future.

She would call me from the bookstore while shopping for birthday presents for my kids. She would describe different books and read a page or two, asking to help find the best one. When Addy fell in love with geese and wanted a “goose party,” Oma brought over several geese to borrow. We even put party hats on them.

All these moments were remembered by both of us at one point. The disease took big parts of Oma away from us all. We could not sit and talk with her. I know she could not tell you my name, or how she knew me. Despite her mind blanking on these details, I could tell she felt love between us, and that’s all that mattered.

When I created the plans for my house, she told me her mother did the same thing after their house burned down. She looked at the papers and expressed how beautiful it was all going to be. I had hopes at that point, that we would find a way to bring her out to the house once it was done. As the months went by, I knew she would never be able to see it.

Oma would never make it to my house. Instead, I filled it with her things. All the rosemaling, the crocheted blankets, the quilts, the paintings, the candlesticks, her rocking chair…she now fills the corners of my house.

While the painting of her “fairy tree” resides at my mom’s house, I look out my window at a different tree. I don’t imagine fairies dancing beneath it, but I do have her geese under it. We call it “the goose tree” and the lanterns hanging from the branches glow in the evenings.

I hope she knows how much we have missed her these couple years, I hope she knows my mom visited her almost every single day, and I, every few weeks. I hope she sees all the love and care we have put into everything, and how much I wish things didn’t end the way they did. I can't say for certain what happens when we die, but I hope she was met by Opa, her mom, and her dad. I hope dozens of dogs and pets ran up to greet her. I hope all her pain and confusion vanished and all her memories were restored. I hope she can rest peacefully and know we will be her story tellers now, her memory keepers.

When searching through pictures and home movies for images and clips for her memorial slideshow, I feared it would be too hard. I was wrong. As I watched her talk and laugh again, I was surprised on how comforting it was to see her as herself again. Somehow, we had to lose Oma completely for her to return to us the way we knew her.

Until we meet again, I will watch the geese fly over head and think of you. A Christmas eve will not pass where we won't wish you were here. We will cuddle up with your quilts on the couch, and I will use some of your favorite mugs for my coffee.

We love you Oma, and we will carry you with us always.

The COVID Rant

 Over the past few weeks, my heart has felt especially heavy…and my tolerance and understanding increasingly low.

Covid is still heavily prevalent in our lives. For awhile there, things were looking up. Positive case numbers were decreasing, hospital admittance was low, and vaccines were available for all adults…and I had hopes that children would soon be vaccinated as well. I felt like I kept a nice balance of my views online. I supported social distancing and mask-wearing, but I didn’t want to go too far and alienate any family/friends that had *alternative* views.

I recently have abandoned that approach.

Don’t get me wrong, I’m not harassing anyone. I’m not insulting anyone’s intelligence. I’m not name-calling. I’m not insinuating that large masses of the population are “asleep” or resemble a woolly farm animal; nor have I touted my ability to ignore anything that doesn’t fit my already formed opinion despite its importance…but I digress.

Even that last sentence makes me squirm. “You’re going to offend someone. You know people who are going to read that whole paragraph and think ‘She’s talking about me!’ and they are going to be mad…maybe you should rephrase it…maybe you should delete it…”

But why do I feel that way?

It has been made abundantly clear to me that those same people I am concerned about offending, are the people who have been condescending, insulting, and uncompassionate with their posts for months. They obviously are not worried about what I think, what I feel. Why give them the courtesy any longer? Frankly, I am fed up with being the bigger person. I am fed up with worrying about what others think of me. I am fed up with reading people’s public antagonizing posts and rants attacking how I (and my immediate family) have approached the pandemic, only for them to act friendly to me in more personal interactions.

Do you think I don’t read your statuses? Do you think I can’t see your shared posts? Do you think I am unaware of your commentary of the past 16 months? Do you think you can be so unapologetically rude with your online activity and I will not decipher what you think of me? Let’s just say you were too quick to insult my intelligence.

How can you be so hostile on this topic, anyway? Do you have a secret medical degree? Do you covertly moonlight as a nurse or other healthcare worker? Do you have inside knowledge of classified government information? Have you done extensive research and experimentation with infectious diseases? Have you lived through a plague that I don’t know about? Are you in possession of a crystal ball that allows you to have superior knowledge on how all of this plays out?  I’m fairly confident the answer to all of those snarky, yet valid questions are “no.”

I could share with you all the dozens of experiences from family members and friends who are nurses, doctors, and healthcare workers, but it wouldn’t do any good. There are thousands of those accounts online, and you scoff and dismiss everyone of them. I could express their plea of social-distancing, mask-wearing, and vaccinations, but that will also fall on deaf ears. I could relay their experiences of battling this virus…what it’s like to pour themselves into every patient, wearing themselves so incredibly thin that they, themselves suffer physical and emotional damage that will leave scars for years to come. I could express the fear and concern my teacher friends swallow every day, because they are caught in an unwinnable battle between medicine and politics. I can dive deeper into the anxiety and apprehension that I combat constantly with my own children, my own family. Would that make a difference? Would you, could you, possibly inch away from your rigid beliefs and perhaps see things for what they really are?

You are taking a global pandemic, a huge flurry of disease, death, fear, grief, and the inexperience of fallible humans, and you are dwindling it down to how it affects you and your ability to live in denial. You are taking a simple task like mask-wearing and you are comparing it to Nazi Germany. You aren’t even willing to wear one “in case” it makes a difference. We’ll ignore that local, state, and federal governments already have laws and regulations that you abide by without a fuss… a face covering is undoubtedly a direct assault on your personal freedoms and that supersedes the well-being of your fellow man. I know for a fact, that our forefathers were indisputably applying this very topic when mapping the foundations of our country. Yes, when choosing between the safety and health of American citizens and defending the skewed concept of “freedom = I can do whatever I want,” they definitely want you to spread a virus unnecessarily. Men and women have fought and died for centuries so you can infect and kill one another due to inconvenience and selfishness. But then again, no one is *really* dying, right? All the doctors, nurses, and scientists of the globe met in a secret bunker with journalists and government leaders and hatched an evil plan to deceive the world…because this is obviously just the beginning of… actually, I don’t even know what the point would be. Whatever it is, the democrats are behind it.

I won’t even dare go down the rabbit hole of vaccinations. The mask debate is enough to do me in. I think the scariest aspect of this pandemic is the exposure of people’s true colors. I see people I once considered to be kind and compassionate have really turned out to be shockingly cold and callous. The people I thought who would give anything they could to those in need have turned their backs and put their own inadequate understanding ahead of all else. They are putting hastily interpreted laws of country before the decency of humankind. This is only made more difficult now that the most vulnerable are our young children. In a verbally heavy nutshell, I am immensely disheartened.

I have recently unfollowed friends and family because I simply could not mentally ingest any more egregious nonsense; but I still know where they stand. I know the words they used, and the names they’ve thrown around. I know they expressed them often and without trepidation. I don’t know where to go from here. I do know I will continue through this pandemic doing everything I can to protect my children. I will continue to support all the healthcare workers by following their lead. I understand in hindsight we will learn what aided in reducing transmission and what didn’t, but I will have ZERO regrets trying to help keep people safe and healthy. I wonder if there will be any regrets insulting and alienating the people who cared about you.

Some End Of Election Thoughts...

 Over the past 4 years, the last year especially, I am proud to say: I did not spread hate. I did not threaten anyone. I did not insult anyone's intelligence. I did not attack anyone's character. I did not shame or ostracize anyone. I never labeled anyone with a cruel word because they did not see things exactly the way I saw it. I did not imply or insinuate that anyone was devoid of morality or humanity. I respected others and their ability to research and determine on their own how they felt on a myriad of topics. I did not talk down to anyone nor acted superior above anyone.

Was it hard? Some days, yes; but I knew what I expected of myself. I knew what example I wanted to provide my children. I knew that even when you disagree with someone, you can still have compassion and respect for them. Some feel that certain behaviors are necessary to "stand up for what's right." I then ask you how you could be so contradictory? How can you disavow someone because they are so vile, and then turn around with the same behavior and call it justified?

I have friends and family with a wide range of political viewpoints...but I never stopped having respect for you when your principles guided you to a different conclusion than my own.

You want a leader with kindness, strong ethics, and empathy? You want a leader that will not sink to the lowest form of behavior? You want a leader that will rise above the malice of the opposing side? Be the change you want to see. Rise above the muck of name-calling, character-bashing, and general ugliness and show that you embody the basic qualities you want reflected in face of our nation.

As the country changes and moves on, I will not care about what candidate said what about some general topic…but I will remember the ugly words that a friend said. I will remember the hurtful behavior of a family member to another. I hope that if you are my friend or family member, you know me. You know me and my moral compass. You should trust that no matter my decision on an important topic, my decision was not taken lightly. My decision was researched. My decision was not easy. I am not lacking in empathy, intelligence, humility, or reflection.

Biden will be President, and whether or not you or I voted for him is moot. He has been elected so let’s find our humanity towards one another again. Let’s not allow the behavior of others that we distained so deeply change us…let’s not become the thing we reviled.

Be the change…be the example you wish to see in America.

 

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.

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.

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.

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