My mind will not be quiet tonight. It is tearing through memory files at record speed. A random remembrance from 2nd grade leads way to a rainy dorm room night at Tech. And, as soon as they have been rehashed and are cataloged, a fresh set of times-gone-by sprout in their place, an ever-filling hard drive that is never satisfied. So, sleep escapes me, and I snuggle in a little closer to my wee one and inhale deeply, to  drink in the clean, honeysuckled goodness of him. Scott reaches over and touches my head. He knows me well. And, through groggy words, he speaks a prayer over me, asking God to bring me peace and rest. And, just having these things- these people- who love me steadfastly, comforts my soul. 

This is our last night, as a family, in this house. We bought our house when Maggie was just a year and a half old. She is nearly eleven, now, and I cannot fathom where the time has wandered. Memories sprout as my feet sprint up the stairs, to our bedroom, for one remaining slumber. I remember our little girl’s squeaky voice, as she woke us each morning. I see her, still, in my memory, swinging so high to touch the birds. I think of the brown crayon from the top of the stair rail to the bottom step, as she dragged the crayon between her fingers and declared, “Look Mommy, I made stairs!” I never cleaned those “stairs” from the wall. I couldn’t bring myself to do it. 

I look back on potty training days, kindergarten firsts, homeschooling, days of bike riding, planting flowers, making dinners, snuggles, kisses, one magical snowy day, holidays, birthdays, hunting for ladybugs, saying farewell to Barty dog, bringing home Mae Mae, washing cars, playing games, bubble blowing, bath time singing, and measure marks on the office closet wall. She grew. Oh, how she grew. 

The long days and nights of pregnancy, bringing her brother home from the hospital, nursing and rocking, and rocking and nursing. His first step, finally! Headbanging, tears, spasms, comforting.

The love of my Scott, who shares all of these past-tenses with me. We are sad. It is bittersweet to move forward, acknowledging that our days of 20 somethings, and even 30 somethings, are behind us. 

You have been good to us, wonderful house. Thank you for respite and safe-keeping, when the outside world became too much bear. Thank you for being our home.  Thank you for the memories. 

   Moving in. 

    
    
    
    
    
 

  
    
    

    
    
   

www.dup15q.org

I am sitting on the edge of the tub, watching my boy splash in the water, making the most beautiful noise. He adores music, and although he doesn’t say much, he can hum in perfect pitch nearly any song, after only hearing it once or twice. His favorite for the week is “London Bridge.” He makes my heart hurt in all the best ways. I am blissfully grateful for this quiet, normal night and this perfectly normal bath. 

Yesterday, our Samuel had his first seizure. And, although I knew it may and probably would happen at some point, there is not a thing that can prepare a mother or father for the dread that comes to fruition. I have versed myself diligently on the various seizures that children with Duplication15q can and do have. I have studied. I have become a student of all things chromosome and autism related. But, when he became unresponsive and paralyzed in his car seat, en route to therapy, I freaked out.  That is probably the best way I can describe it. I looked into the “mom” mirror, after he became suddenly silent. He was frighteningly still, with an unblinking gaze. He did not move. I was at a red light, and I shifted the car into park and unbuckled my seatbelt, with more panic than I knew what to do with. I shook his legs, and called his name. Nothing. No sound, no motion. I moved my hand quickly to his face. No flinching, no blinking, no motion. I screamed his name with such guts, but my throat felt closed. I checked for breathing. Breath. Precious, precious, breath. And, I said aloud, “Help him!” And then- a whimper. And then- a blink. And then- a look of confusion. And then- normalcy. 

Cars were passing by on either side of us, and it took a moment for me to remember what to do. My brain wouldn’t work. It was as if I had experienced it with him- as him. I slugglishly came back to reality. I put the car in drive, and I cried. Of course I cried. I sobbed my mama eyes out. And he hummed. This time “The Wheels on the Bus.”  And, I breathed. 

His neurologist sent him to the hospital. He was okay. He didn’t eat for the majority of the day, but by evening his apetite had picked up. 

He has been ordered another 24 hour EEG, and the hospital should call anytime to let us know when it will be.  He had a petit mal seizure, also known as an absence seizure. It lasted roughly 25 seconds. They were the longest 25 seconds of my 38 years. I am certain of this. I think I may have aged a decade in those seconds. Some dup kids have hundreds of shorter absence seizures daily. Some have a few. Some have them every few years. Because the population of Dup15q kids is so small, the variant is wide. Every child is different. Some have them so quickly that they may even go undetected for some time. 

Around 10 last night, I am assuming that the shock and fear of the day began to take its toll. My neck, head, hands, shoulders, and lower back felt like I had been in an accident. And, really, hadn’t I?  My muscles were like rocks, and I could feel my pulse thumping in my scalp. I did not sleep a wink last night. I prayed. I prayed. I prayed. This is our reality, so all I can do is pray. Lord, please don’t let it happen again. Lord, please help him. Lord, thank you that he is okay. Lord, carry me through this. Lord, I am so sad and scared. Lord..Lord…Lord. I call out to You. I carry You in my soul. I know You are there. You will always be here. Thank You, Lord. 

Please, please support research and awareness for this Duplication. Rare Disease Day is Monday. Wear blue for Sam.  Wear blue for these children and adults who deserve research. I implore you. Be a teacher. Tell others.  

   
    
    
   

https://www.facebook.com/Dup15q-Alliance-245152512165738/

Maggie and I have decided to start Bible journaling. Here is a cool link to see what it entails. http://m.lifeway.com/n/Type/Journaling-Bible

  (Picture from Pinterest)

There is a wide variety of journaling Bibles and supplies that make the experience unique to each person. I am excited to spend time with Maggie, as we do our devotionals and dig into God’s word together. 

While we were in the Bible bookstore, we waited for a while to have our Bibles mongrammed. Maggie picked a lovely blue, and I chose silver. We leafed through several devotionals, struck up a conversation with a nice man, who had just given his heart to Christ, and we put together a plan for how we will journal each evening. It was time well-spent with my girl. 

After about 45 minutes, the employee came to us with our Bibles, and she apologized for my name not being evenly done on the cover. It was done on an incline, and the imperfection was obvious. Admittedly, after spending money for my Bible, I was disappointed. I didn’t say anything, as I looked at the blunder, but the employee said, “I am so sorry. Let me check to see if we have another Bible like this one, and I will do it again.”  The thought of  a Bible being put to waste because of a cosmetic flaw didn’t sit right with me. I said to her, “No. No. That is fine. Don’t worry about it. It is just a name. You can refund the $6.50 for the engraving, and I will take this Bible.”

She was so sweet, and she made her way to the register, leaving Maggie and me to collect our things. Maggie was quiet, and I asked her what she was thinking about. She replied with, “That was a nice thing to say to that lady, Mama. It doesn’t really matter what is on the outside, anyway. It’s what is on the inside that matters.” 

I will never forget the way my half-grown chid sounded in that instant. I will never, ever forget the expression on her face and the tilt of her head. She reminded me of one of the most important lessons in life, right there in that little store. Just as my name appeared flawed and off-kilter, my imperfect self is,too. I am full of blemishes. But, inside the pages of His book is a flawless message of love, life, and abundant peace- no imperfections, no misprints, no guessing. I have always loved the Psalm: Create in me a clean heart, Oh Lord, and renew a right spirit within me. (Psalm 51:10). And, He will create in me a clean heart each day, if I only ask. My insides are made new. 

Thank you, Maggie, for showing me Christ’s forgiveness and love. For reminding me that he can turn my imperfections to work for His glory. 

   
Sam’s picture we made. 

Samuel has the flu, again. Vaccinated always, and he has had it every 3 months for the last year and 1 month. It has alternated from type A to B every time, except this one. He has now had back to back B strains. His immunology report came back clear, so now we are back to the drawing board. Please pray for him. He needs it. The Bible promises us in Proverbs that the Lord’s purpose will prevail. I am intertwining this verse into my heartstrings this evening. 

My Papaw has been in the hospital, and today he had a successful surgery. I am praising God for His gentle and steadfast hands. He is always, always taking care of us, even when we cannot see it. Prayers for healing and for my tired Granny. She never leaves his side, and I know how worried she has been. I wish I could hug him. Missing home right now. 

  
 
Maggie was given an ICARE award today at her elementary community meeting, for exemplifying traits of a good student. She needed a boost at school, and this has been such an awesome feeling of accomplishment for her. She works so hard, and Scott and I are thankful for her always. Such a sweet girl. 

I have been crocheting up a storm these past few days. When I am anxious or worried, it seems to help calm me. My poor fb friends have suffered the many, many photos of my angst. Sorry! Lol

Not a whole lot to tell in thisblandlife today. Praying for peace and calm tomorrow.  
  Showing off my handiwork.  

  

 

Today is Samuel’s party at his therapy facility. Tomorrow, he will be three years old. I made cupcakes, and they were beautiful. I worked so hard on them, wanting to make this day special for him. I have a hard time when his birthday comes. The array of emotions is difficult to describe. I am so very proud of him and his precious life. I am ever heartbroken that he doesn’t understand this day. I am filled with an aching grief that I am thankful he cannot see, cannot know right now. 

I dropped the cupcakes. I couldn’t hold it all- Sam, his diaper bag, drinks, and 24 cupcakes in a perfectly displayed cupcake holder. So, I dropped the cupcakes. And, I cried. A lot. But, I know these tears really have nothing to do with cupcakes at all. Having them fall was the proverbial straw. 

I relive each month and year that has passed, as his birthday draws closer. It is not intentional; it just is. I think of all the things I want for Samuel in his life. And, how I would give my own life just so he can have a productive well-rounded one. I think of the infantile seizures he had as a newborn, the feeding difficulties. I remember the day that I absolutely knew he was not developing normally, and I remember the terror in my heart. I think of last year’s birthday and the head banging and screams. The stimming and rocking and crying. 

After the tears dry, I will remember to be thankful for the progress he has made. The smiles. OH, the smiles! The joy of his presence in our home. The undying love that Scott, Maggie, and I have to give him for the rest of our lives. The security of knowing his heavenly Father holds him safely each day, as he learns and traverses his path. And, his therapy facility. The staff will never truly know the impact they have had on our family. They make me know that Samuel is covered in love each hour he is with them. There really is so much to be grateful for- the greatest of these is Samuel, my son. 

I set the dvr to record a documentary on PBS about 4 adults living with autism and the realtionships, or lack thereof, they had or would like to have with a significant other. 

As Samuel sat on the couch, slipping into his world of hyperfocusing, arranging and rearranging his many giraffes, we began to watch.  I made it 10 minutes, and I abruptly asked Scott to turn it off. I walked into our bedroom, sat on the edge of the bed, and sobbed. The lump in my throat made it hard to breathe. 

Scott came in, and he adamantly said, “I deleted that show!” Bless him. He wanted to fix the cause of my heartache. But, there is not a thing that can be done when a mother’s heart hurts, except for prayer. Only talking to my Savior can help my brokeness, and even then, it takes time to overcome. 

One of the “rules” I have subconsciously followed during these months of Samuel’s life, especially after diagnosis, is to plan for the future without pondering what the future holds. There is a finite line between the two, and my mind often blurs it in the sand, causing worry, sadness, fear, and even anger. This documentary- these men with autism- threw me into what may be in my son’s future, and I wasn’t prepared.  

So, I move on.  Because lying down in the midst of my grief will only give me permission to wallow in it. I can’t. I won’t. Not today, anyway.  

The New Year is here! And, as we usher it in with cheers and jubilation, I am caught pondering the joys and heartaches of 2015. The hardest of years, along with many adventures. A life-altering genetic diagnosis, a whirlwind of therapies and specialists, moving cross country, new schools, a cellist in the making, a guinea pig, allergies, flu after flu after flu, sustained and new friendships, national parks, new hobbies, and the ever-present snow, snow, snow. This is just a plethora of what the last year bestowed upon the Blands. 

Earlier today, I perused blogs of these past 12 months. The advancements our Samuel has made developmentally, socially, and emotionally are astounding. From head banging, no eye contact, and little sound, to joyous, connected, and his first words. 

Maggie has flourished in Colorado. She is happy, well-adjusted, and is the queen of snow angels. She is learning that she can do all things through Christ. He will sustain her. I am learning still, too. 

I am rarely without many words, but tonight, I can’t seem to appropriately express the way I feel. I will just leave you with this. My God is so BIG! He walks this journey with me, often scooping me up when I cannot tarry the path any longer. I am living proof that He will bring peace to the broken hearted and make all things good to His glory.  I thank you for the prayers and precious words throughout the year.   

  

What an adventure we have had over the last week and a half! We flew into Katy from Denver and then headed to Louisiana for Christmas. Praising God for traveling safety and for such a lovely time. I was able to see my Granny and Papaw three times while there, and it did my soul so good to be with them. 

My mama cooked the best food, and making pies and “trash” with her was wonderful. She even made lemon ice box pies and pitcher after pitcher of lemonade, from the lemons we picked at home in Katy. There were so many, that our lemon tree was weighted to the ground.  

 
My brother’s little girl, Avery, was able to come to my parents’ early, and she and Maggie were over the moon spending time with each other. They both needed that time together, and the giggles and dancing were in abundance. Lots of smiles and snuggles from those sweet girls. 

Gruncle Chris (as Maggie calls him) came in, too.  He is the absolute best with babies and kids. He, Scott, and my dad flew remote control planes, and he entertained Samuel for the better part of two days. 

   

 
Of course, my dad and mom were the happiest when they had all of their grandkids at their house, and I appreciate them tolerating us for six nights. 

  (From left) Chance, Avery, Katherine, Maggie, and Samuel

Christmas Eve with my mother’s side of the family is always fun. There are nine grandchildren and 21 greats. That makes for a very busy and loud night. 

I have learned to crochet, since being in Colorado. I have 2 awesome friends who also crochet, and I love meeting up with them during the week. I spent many nights listening to music and watching my Granny Jane crochet, when I was a kid. She made every grandchild an afgan, and I was able to surprise her with a scarf that I made. I loved seeing her expression.   

    
  My siblings. 

  The great grand kids

 Ashley and me

   Best cousins-Maggie and Avery

 Jamie, Kayla, Rylie, and Avery

   
 Grandkids from left: Hannah, Ashley, Sarah, Merideth, Jannan, Jamie, Shea, and Blake

   Shea, me, Sarah

 Avery’s turn to read the Bible. 

Christmas Morning:

  
    
  
   
We are back in Katy, tonight. I miss back home already, but we are looking forward to spending time at our house before heading back to Colorado. 

There was another mass shooting today in America. I have stopped watching the news. I only see bits and pieces on my facebook feed, and I try hard to avoid seeing specifics. Randomly, I will catch a glimpse of a death toll, yet avoid  the circumstances surrounding the evil deeds of one, two, three, perhaps. 

But, this evening, as I scrolled, a map appeared. It was covered in numbers. It was hard to differentiate where one state ended and another began.  So riddled with markers, that I could not look away. And, when I acknowledged just what was before me, I hanged my head and sat still, with nausea, for what seemed like an hour. I couldn’t bring myself to look back at those numbers and pinpoints. But, I did. I made myself face what I had been avoiding. The map was of mass shootings in 2015. The numbers and occurrences- staggering. 

It was then, in my incredulousness, that I thought of Columbine. I was in college, living next door to my cousin, Ashley. We stood at her tv in sheer horror. We sobbed for the travesty of this mass murder. We cried for the families and students in Littleton, CO. Bewildered. Utter disbelief. 

Today, nearly 17 years later, we see multiple tragedies, like Columbine, unfold weekly. And, I no longer cry. I am no longer shocked with horror. I cannot watch for hours, holding my breath for the final count of the deceased. I do not want to know who the offenders are or whatever their reason could possibly be to destroy life.

Has my heart hardened? Why aren’t my emotions raw with hurt each time another gunman pulls the trigger, disintegrating more human beings?  Is it that I, or even society, has become desensitized to it all? Have we gone numb? Have we seen so many deaths, that the impact of individual life does not actually  impact us anymore? I mulled these questions over and over as I bathed Samuel, as I straightened the living room, as I turned on the Christmas lights.

Really, we (society) are extremely sympathetic to the plights of the deceased and their loved ones.  And, it is because we put ourselves in their proverbial shoes, that what we have learned so maddeningly well is self-preservation. We don’t want to be innundated with 24 hour media coverage any more. I turn my face away, desperately pleading with my mind to not take me down that path of worry and grief. I cannot allow myself to experience true empathy during these horrendous happenings any more. When I do, I ache so deeply for the families of the dead, that I cannot breathe, and then I die a thousand deaths with thoughts of my own family succumbing to something like this. Because, in reality, killing many people in one fell swoop is not rare anymore. And, the opposite of rare is common. And, common is just too close to home. 

http://www.pbs.org/newshour/rundown/heres-a-map-of-all-the-mass-shootings-in-2015/