Lupus and Sensory Processing Disorder Don't Mix

I was published on SPDbloggerNetwork.com

I woke up this morning to the rambunctious sounds of my little men bouncing off the walls and into each other, with the under current tones of prodding reminders from my Knight in Shining Armor husband trying for all he is worth to keep the boys on some semblance of routine as they try to get out the door for school. I slept through the moment of waking.

It’s one of those mornings. The kind that requires medication and slow movement as I climb out of my soft cozy bed. And even then I’m in a fragile state.  Twenty minutes proves the ability to move around without too much ache. Unfortunately there is more to this flare up. I try to help with the boys. But this type of flare up just compounds to normal issues ten-fold. This one messes with my head. You see, I have Lupus. An autoimmune condition that randomly attacks organs of the body. Today it chose one of the vitals, my brain.

And this is how it plays out: Jakob, 8 years old and diagnosed with SPD is told for the millionth time to go brush his teeth. He has five minutes before he needs to be out the door. He walks into the bathroom as I walk out. I have just checked to make sure there is toothpaste and a toothbrush in the tin. Somehow I know that he isn’t going to see them. This is where my struggle started. I should have just gone in to ensure that he would see them and encourage him calmly to keep looking if he didn’t. He battles classic SPD where sometimes he just can’t see what’s right in front of him. Instead I chose to forfeit all reason and stew within my mind how frustrating “he” is and how this task should be so reasonable at his age… And amidst this three second train of thought he exits the bathroom asking where the toothbrush and toothpaste is. Enters Lupus Brain: Loud and with as much adolescent  irrationality as remotely possible, the raging mama bear responds “It’s in the tin on top of the toilet! Right where it is EVERY time you go into the bathroom! SeRiOuSLy…!” Naturally he gets defensive. Then reality clicks and I look at my poor husband, a look of sadness in his eyes.  With that I yell, ” I can’t handle this!”  -Uhh, yeah, ya think’!-  He takes over and I climb back in bed. Uggg!

Somehow I manage to get myself together enough to attempt to help again. They’re running late. This time I try to take on Caleb 4 year old. I need to get him grounded enough that he will be able to function at school. I go to the fridge and pull out the Bach Rescue Remedy drops. We sit on the couch together and I calmly remind him that he needs to find his space today. I remind him that he needs to find his teachers voice and follow what she says. It seems to be clicking. Surely the drops will help as well. He walks away calm enough that I have hope as I turn to help his older brother tie up those cursed shoes.  Again I allow myself to wonder why this has to be such a difficult task. Just as we are getting past the initial frustration and reluctance to even try, Caleb walks back in the room and without warning smacks Jakob up side the head. “ARE YOU SERIOUS!?”  Papa scoops up Caleb and takes him to his room until Jakob is out of the house.  With Jakob  curled up on the couch sobbing. Again I let myself think “how old is he!?” But at the same time I feel empathy and understanding of the situation and we work together to get his shoes on and tied.  Finally we get Jakob out the door.

Now it’s Caleb’s turn to leave for school. I gather his little ball of energy into my arms again and remind him of his space. Calmly I rub his Serenity doTerra essential oil on his back and behind his ears. With that he begins to kiss everything and everyone around him. “Do we kiss our friends Caleb?” I ask, knowing that his kisses weird out his classmates and sometimes even the teachers. “No.”  ”Who can we kiss Caleb?” “I can kiss you, Papa, or myself” comes his reply, in between kisses to the whiteboard on the wall. Lovely. “Caleb, if you feel the need to kiss something you can kiss your arm at school, ok?”  ”OK.”  With that I turn to Leif and tell him to let Caleb’s teachers know that Caleb’s big need lately has been to kiss things, and the trigger word for Caleb is, “arm.” They’ll know what I mean, I assure as they walk out the door.

Truly, this morning was one for the record!  FYI: Lupus and SPD Don’t Mix!!

A Little Update

WOW! It's hard to believe that we're under one month on our count down to Leif's graduation from the nursing program. So many days - so many stories - so quickly passed! Truly, I am in awe at how fast the time has flown. There were few easy days. But many good days. And several hard days. And every day I have been carried or my burdens have been lightened. Of this, I have no doubt!

My life is not easy. I know, that is a pretty lame statement. Who's life is easy, right?  Well, for lack of better words at the moment I chose those words. Simply because they are true.  I wish I could have and would have written daily during this past year. But unfortunately, many of the days I just couldn't. I have started to get headaches on a daily basis. Many times they are aggravated by the computer screen. Reading has become an issue as well. I'm hoping to overcome these obstacles. But I thought I'd share the reality in the meantime.

My health has become an all encompassing issue these days. If you know me, or read through my blog at all you will catch on to the fact that this isn't unusual. Being sick takes it's toll after a while. Leif and I had a good talk the other day about my life and my health and how it all works together. Sometimes (understandably so) Leif gets overwhelmed with all of the symptoms of illness and my desire to define them and fix them. Gratefully (so very gratefully) Leif has been blessed with health and strength. He is rarely sick, and when he is, he struggles. During this particular conversation I asked Leif to take some time to think about what he feels when he is sick. And then to imagine feeling that way every day for years. I added that some months, weeks, and days are better or worse then others. But he could never feel strong enough. Could never feel completely whole. And then I added to the imagination that he still had to meet all of his responsibilities. All of his chores had to get done. And the family was still relying on him to care for them.  Truthfully, Leif didn't really require the visual in order to understand. Thank Heavens he didn't ask me to walk the last several years in his shoes. I may have just gone out to dig a hole for myself. The poor man has to deal with all of his stresses and then he's stuck with a chronically ill wife on top of that.

I don't even know why I'm carrying on about this. I guess just to give an update. But I have to quite soon. My eyes are starting to throb. So let's turn this in to bullet points:

LEIF:
Has done Very well in his schooling!
Is enjoying his clinical time in the hospital three days each week.
Is looking forward to graduating and moving on to start his career.
Spends the days that he's not at the hospital working with Lena to pack up and prepare for the move.

LENA: Ideally,
Spends 1/3 of her time caring for the family and home
1/3 of her time organizing and packing
1/3 of her time resting and sleeping
At this point, the conclusion between the doctor and Leif/Lena is that Lupus is the illness; along with the Pituitary tumors, etc.

JAKOB:
Is doing very well in school and has a wonderful teacher!
Still Loves to learn all that he possibly can about history and science.
Looks forward to the move (most of the time.)

CALEB:
Has progressed Leaps and Bounds this year while attending Head Start Preschool.
Loves all Might Machines (construction equipment)
Loves being with Jakob.
Just turned 5 years old!

JJ:
Is growing up Way Too Fast! My little baby is a little boy!
Is a smart little man!
Has a priceless smile and laugh!

Feels Good!

WOW! I can't believe I was able to get so caught up with Foto Friday! Yippee! Now it's time to rest my eyes!  Hope you enjoy the photos!

Foto Friday January 2013: Road Trip Home

So MANY pictures. Not enough time and space to put all of them up! But Enjoy!

Foto Friday December 2012: Road Trip to North Carolina

HERE is the blog post that tells the story behind these photos.

Foto Friday November 2012

November is a blur of life changing moments and loneliness. Filled with moment of reflection and gratitude for the reminder of how precious every day together should be. Leif focused on finishing up with his semester  in November with the plan that he would drive home the night after finals and we would begin our holiday break resting and recuperating together at home. And then the real plan was laid out suddenly and without notice. November 20, 2012 marked the tragic loss of our family member and friend Lucy Heaton who was killed in a car accident. We spent a couple of days with loved ones trying to wrap our heads around such a tragedy only to face another one.  November 22, 2012 marks the terribly sad loss of Leif's cousin Jannette Baron Andersen who died of complications due to Leukemia. We traveled to Brigham City for her funeral. Overall, November was kind of sad and filled with sickness to boot. Gratefully, our dear Home Teacher/Friend cut down a Christmas Tree for us and delivered it to our door. It was Perfect and so Needed!
        The first photos are of us at Leif's house in Flagstaff. Second group are of our Christmas Tree and the boys opening up their traditional Christmas books as we decorate the tree. Third group are  moments of Good Times. Then a couple of the headboard and window box weathered wood project I finished. And finally the photos of two wonderful angels.

Foto Friday October 2012

October was filled with a lot of fun, some loneliness, and great times together and with dear family! We spent General Conference weekend with my aunt Joann and her husband Dave. This was a needed visit for mama. I was missing Leif desperately and sad that we couldn't follow out traditional General Conference traditions. But somehow we made it through.:) October also marked our traditional Fall Fondue party that we combined with our celebration for finishing the Fable Haven book series. Of course there was Halloween and the beauty of the Fall leaves to close the fun month!

The Remembrance - The Knowledge - The Heartache Soothed - In Time

Leif and I shared a moment in time this weekend that was unexpected and very precious. Wednesday morning I learned through the gift of modern networking that one of my dear friend's that I grew up with as a little girl and have remained friends with through the years suddenly and very tragically lost her baby boy.

Upon reading the news I was immediately overcome with emotion and shock. There was only one thing I new for sure. I had to go to her! I knew a tiny part of her broken heart. The shock and utter disbelief. I had to hold her, for there are very few words that can be shared in such a loss. And the very few needed to be shared face to face with the spirit as our companion.

I ran to my dear husband who was working out in the trailer on his last bit of homework before the weekend and I breathlessly told him what had happened. He took me in his arms while I shook and murmured quietly the only word that would come, No... No... No... And then I was able to get the feeling that was calling to be out. "Leif, I need to go to her." And without a thought of complaint he took me to her.

Heidi lives almost two hours north of us. Really not a huge trip. But one that would require babysitters and some planning... We were on the road within an hour. My Precious friends scooped up my kids with knowing arms and hearts and cared for them without a thought otherwise. Even when there was confusion and Jakob didn't catch the bus, they knew where he needed to be and where I was and they took care. Bless them!

Soon we were driving over the beautiful Cedar Mountain pondering our existence here on this earth and it's fleeting nature. This journey played a double meaning for us. This trip over the mountain marked the first time we had driven along the path our friend Lucy drove on the day her life was ended on that very road a few months ago. Our hearts were somber. The coming Easter holiday within a few days and its meaning was not lost on us.

When Leif and I arrived at Heidi and Jason's home I knew we had done the right thing in coming. She needed me. I needed to be with her. And Leif was able to share a few thoughts and support for Jason and Heidi and work his magic to lighten the fog of sadness for their three little girls. He has a gift that I envy at times. And then I look at the whole picture and see that we make a wonderful team.

So much was shared over the next several hours. To me I felt a sense of coming home that I haven't felt for decades. Heidi's parents grew up with my parents. In a lot of ways I consider them part of my family. Heidi's mother Patricia played a vital role in my life for as long as I can remember. She is cherished in my heart. Heidi has three sisters that I love as well. How sweet it was to be with them during such a time as this in their life. I was overwhelmed with the reality once again that we are not sent here to earth without a plan and a purpose. Nothing is happenstance! We each play a role in the lives of those we are around that can come back around to us for good or ill. I know this is true.

Leif and I stayed for the day and ended up spending the night as well. It was a precious time of remembrance for us. There was a re-connection made within us and our life's journey together. A remembrance  A Knowledge. A Heartache soothed.

A remembrance of the loss and the sadness that followed, all shared together. The remembrance of being carried by God and his angels through the darkest and heaviest steps of our life. The knowledge that Father does know His children and our Savior's Atonement makes happiness possible again. A heartache within our soul that never quite goes away but knowing that in time the soothing does come. The all-consuming ache and sadness does calm. In time, the laughter does return to the soul. In time.

The tears did come for Leif and I. The tears flowed down our cheeks while we sat together at the viewing. The sobs of my precious friend echoed in my heart and brought forth memories and emotions that have been long closed. The sadness I feel for her loss is so great. I do not wish this kind of loss upon anyone. But if there is any good that can come from such a loss it is the Remembrance, the Knowledge, and the Heartache Soothed that comes, in time.  In time, there have come chances to share the journey with other broken hearts and in those moments there is a glimmer of understanding of why we had to feel such pain.

To This Journey's End - Praise Be to Him!

TEN MONTHS.  Our family has been separated for exactly ten months. Words will never express how grateful we are to know that this separation will be over within days. Gratefully we were together far more then we had hoped throughout the time Leif has been at school. But there is stability is the traditional... Mom and dad both live in the home - dad works - comes home -  and sleeps at home every day and every night.

I have gained a profound admiration and empathy for single mothers. I was not single and yet at times I have never felt so alone. My heart sobs for my dear sisters who carry the yoke of motherhood alone. I can only understand a portion of how they are able to carry on. And I believe that it is the Only way they are able. They, like myself, are never truly alone. Oh how so very true... Thank you Dear Father for carrying some of the burden when we are unable to take another step. Thank You!

A Moment of Reflection

This afternoon I took the time to stand on the porch and watch my little one play down in the sand box. I stood on my porch and found myself listening to all of the birds sing about the coming spring. I heard the cars off in the distance on the highway and smelled the subtle sent of wood smoke in the air. As I gazed over the yard, memories of the last seven years flowed through my mind and it hit me again all that I will miss when we move. It will Not be easy!

Foto Friday: September

September 2012 was a good month. We were back into a school routine and still feeling the rays of the sunshine and the beauty it brings. We also felt the need to prepare and winterize the yard for the kids and I. This being written in February, I can say I am really grateful for Leif's willingness to take his few spare moments and build me a cover for the stairs. It has protected us many times from potentially slippery stairs and frustrating mornings trudging down the stairs. Thank You My Love!! And thanks for including the boys i n the project! I was feeling crafty in September too. I worked with weathered wood quite a bit and worked on my Head and Window Boards. It was a lot of fun! I would be amiss if I left out the fact that Leif surprised the boys by coming home one evening with the firm intention of building them all a pair of stilts! Yep, Stilts! Fun Fun indeed!!  And finally, a special thanks to Uncle Erik and Aunt Stacey for continuing to open their home to us during my lonelier times. Such a precious blessing!!

Ramblings About Hard Times and the Light Ahead

There has to be a science and reasoning why some people stay really dedicated to certain things for a long time and then suddenly just stop. Is it trend? Psychology? Validation or the lack thereof? Bigger and Better things to distract? Or all of the above. For me, I would say all of these reasons have played a roll in why I have fallen off of the blogging band wagon. However, I would say the absolute biggest reason is simply a lack of energy. Energy?you say. Yes, energy. For me, blogging requires energy of mind and body and many days I just don't have a single drop left to give. And it's sad. Because writing is therapy for me. Writing is the way I remember things. If I haven't written about it, chances are the memory isn't very clear anymore. Sad, but true. Gratefully I had blogging energy through much of my boys' babyhood years. And even more gratefully, I anticipate a surge of returned energy right around the corner. 

I have said this before, and I will say it again. There are two years of my married life that are filled with more fog and silence then the other handful of years filled with written word. The two years filled with more growth and wisdom gained then any other years of my life. The two hardest and loneliest years of my married life so far. Both were filled with loss of innocence. Both taught me that hard can get harder and the best isn't always going to be so. And both years have taught me that one day, the light does return. One day, you will be pulling out of the driveway to go somewhere and the realization will hit you that the cloud isn't so thick anymore. The load isn't so heavy.  The impossible feels more possible. There is Light. And that feeling is life changing. Strong enough to hold a place in my memories to get me through the next hard time. Because now I know that there will always be hard times ahead. 

It's the living through them, and in between them without fearing what's around the bend that becomes the challenge for those of us who know hard times. 

Right now the clouds seem pretty thick and the load really heavy. Right now I just have a few Must Do's on my list of To Do's every week. They are as follows:

1. Make sure there are clean clothes every morning. 

2. Make sure there are clean dishes to eat on every night.

3. Make sure everyone showers.

4. Make sure that everyone eats.

5. Make sure everyone sleeps.

6. Make sure the boys get to school.

7. Make sure the boys get home from school.

I have told myself that as long as these seven things happen throughout the week then we will all survive until my other-half returns to the Home Front. In fact, if life were just filled with these seven things all would probably go quite smoothly. But the added inconveniences like eye infections, puking, ER visits, and shattered moon roofs, seem to really throw things off. It's really a pain! Is it really a wonder that depression sets in deeper in the winter time? Not really. In the spring and summer time life's sudden turns don't seem as dramatic. It's not freezing outside when you try to muster the motivation to take the clan to the eye doctor. And the shattered moon roof can be put off for a while without the fear of total destruction from rain, snow, and melting ice. Actually, we don't even have to deal with eye infections and puking in the summer time! Not very often anyway. Why don't I live in Arizona where it's always warm!? Oh wait, I do, right!? Okay, Hawaii then. I should just move back to Hawaii. I mean, they've finished that road across the Pacific by now, I'm sure of it. We can just drive to the islands. I'm sure of it!!;)  Okay, Okay. I'll stop with the stupid jokes:) But hey, they made me smile and these days, smiles are of great value!

So, here we are. Almost exactly one month away from Leif's return home. I'm downing my Crystal Light Energy drink in hopes that my head can stay clear and my body strong enough to get through the last few hours of the day. Jakob's at Scouts (Bless his dear leader's heart!!) Caleb's at Grandma's (Again, Praise Be for the Angel next door!) JJ's balancing on the 4 inches atop the couch as he watches Little Einsteins, repeating what they say. And Leif is working like a dog in a far off place to become a nurse. Soon,  Jakob will be home. I'll throw the frozen pizza in the oven and try to convince Caleb to come home and eat. We'll try to eat at the table and the boys will argue for the couch and a movie (History Channel's "Dogfights"", no doubt). We'll finish movies at 6:45 and I'll wrangle the boys to their rooms and they'll finally settle down and sleep around 7:30. Usually by then I call Leif and reward myself with some chocolate and force myself to go to sleep by 9:30. Tonight, Leif gets to go bowling with his classmates. So I am going to stay up and watch the TV series BONES. A new favorite thanks to my sister:) - And tomorrow will be a new day.