Broken

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Some days are rough. Some days are even harder. And, then, there are some days that just break the soul- just shatter the heart because realization hits that you are in a completely unfamiliar situation and have absolutely no idea what to do to help one of the people you love the most in the whole, wide land.

Samuel, as I have mentioned many times, bangs his head. It has become increasingly worse, and his helmet will be here next week. Thankful for that. 
About 4 days ago, when we put him in his high chair, we noticed that he started throwing his head to the left. Back and forth, back and forth. He is not hitting it, and it almost looks like a tick, except that we know it isn’t because it is only happening in his chair. It is as if he cannot stop himself. He wants to stop, and when he can’t make himself, he begins to cry. So, we are having to sit by him and keep our hand on that side of his neck to keep him from hurting tendons or muscles.  Doing that also seems to bring him comfort. 
For some reason, this particular event has just broken me. I don’t know how to really help him. I can tell he is in distress, and I want to scream, “Lord!  Help my baby! Please help ME to know what to do for him!”
I took a short video of him to have for his next appointment and to share with his therapists.  Two steps forward developmentally, but 10 steps back with self injury and sensory issues. 
Scott has been gone since Wednesday but came home from Denver this afternoon. I am relieved and tired. 
I am also struggling with depression right now. Through all of this with Samuel, I have been heartsick, but depression is something chemical- unique- crippling, terrifying, even. 
I feel like a truck in a rut. I am the truck, and the more I spin my wheels, trying to escape, the hole just keeps deepening. Despair is the word I liken depression to. Despair is lost hope. And depression is not something to snap out of, so to speak. I must wait until the chemicals adjust themselves, stay steadfast with my medicine, and pray for this joy-smothering darkness to lift. 

Adventure is out there

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This Valentine’s Day will never be forgotten. Scott told me to be ready at noon today, and that is all he would say.  

So, we left the kids with my parents and headed out on an adventure, as Scott called it. Five hours, and lots of coversation later, we were coming into Dallas! 

When Scott and I got married in 2001, we moved into a tiny, and somewhat questionable, apartment. When the oven door was opened, it touched the cabinets on the other side of the kitchen, and to use the microwave, we had to turn off the tv. We had just gotten out of college, and I was about to start my 1st year of teaching. Limited funds, and nothing but love kept us going that 1st year of marriage. I think I begged my mama at least once a month to let me come home. A new, enormous city for a small-town girl was quite an adjustment. I had no idea what an HOV lane even was! But, Scott and I stuck it out, and we settled on Crest, even though I was a Colgate kid. We experienced 9/11 sitting on a couch donated by my folks and a recliner Scott found on the side of the road in college. We were mesmerized and destroyed at the events of that day.
We also had 2 car break-ins within a month while living there, and I drove around with cellophane on my window until we could afford to have it repaired.   

Here we are in Lewisville, looking shady, and taking a selfie at our first home together.  1901 Lakeside Dr. 


We also went by the first house that we ever owned. It was a small 2 story with navy carpet and blinding yellow paint on every wall. We spent 3.5 years here, struggling with infertility, the loss of Scott’s grandfather, the aftermath of 9/11, and a failed adoption. 
But the wonderful memories far outweigh the painful. We spent our 1st Christmas as a married couple in our new house. We painted every room, laughing and listening to music. We purchased new furniture, loved on our doggies, became independent in our new jobs, yet clinging to one another. We learned how to survive life together.  We also conceived Maggie and brought her home from the hospital here. We cried together and were elated with answered prayers. 

Another selfie- At our first house. We look like criminals, so we hurried before we got caught! 2044 Mallard Dr. 


Our favorite place in the whole wide land to eat is Babe’s Chicken. It has THE best fried chicken and biscuits in the world! I even ate there the day before I gave birth to Maggie! Scott surprised me at supper! 
It was so delicious, and we reminisced about many stories from our before-children era. 




The last place we stopped was Braum’s, for some ice cream. It is our favorite, and on Saturday nights when boredom or a sweet tooth struck, it was our go-to place. We laughed about eating there one evening when we were newlyweds, and the man standing in front of us had on white see-through pants and no undies! We nearly died when the same man was sitting in the pew in front of us at church the next morning! 

Braum’s


We are on our way back to Katy now. 
Scott was right. This was a day of adventure. But, it also reminded me of the boy I married, and the love we shared as young twenty somethings, with hearts and heads full of plans and dreams that life would have in store for us. Our love is different- more complex now. Our simple days of 2 have grown into busier days of 4. We have new trials to face and more memories to make. But, one thing that will never change is the way I feel about Scott. He is always faithful, and his love is ever-enduring. He is exactly who God planned for me to traverse this earthly life with. He is my forever Valentine. 




Valentine

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Tomorrow is Maggie’s Valentine’s Day party at school. Each year, I try to do something personal for her friends. This year nearly escaped me! We made goody bags for her classmates, and Maggie made cards that say, “You make my world so very colorful, friend.” 

Santa brought her a Crayola melt and mold factory for Christmas, and she has spent days peeling, cutting, and melting crayons for her friends. She made red and pink ones for the girls and green and blue for the boys. I glued them on for her, and we added them to the bags. I waited too long to get Valentine themed bags, so we used red ziplock baggies and added candy. They turned out okay, and Maggie is happy with them. 

I am not very creative, but I’ll let Maggie figure that out when she is ready. Ha!

One year, We did Valentine pencils with foam hearts on pipe cleaners. The insulated cup and lid was the teacher’s gift. 
For Maggie, I found the cutest pillow on Amazon and a neat book for daughters and their mothers to do together. I hope she likes them! 
I found a bucket of foam magnets for Samuel. I love that they are not alphabet letters and numbers. He doesn’t have any concept of most words, so I really liked that each magnet is an everyday item, and they will help me work with him on his receptive language. I also got him a sweet little book. 
My parents are coming tomorrow for the weekend, and I was told by my better half to be ready at noon on Saturday. That is all I was given. No other clues!  I am excited that we will be able to be alone. Granna is babysitting, and I am so grateful! We haven’t been on a date in way too long. 
I am really working on seeing the positive in my days, without so much worrying. Today was challenging, and Samuel banged his head pretty hard. He has a goose egg, and it made Scott and me nearly cry. But, we are looking forward to the next few days. He loves his Granna and Grandpa, and Mag is beyond happy. 
Happy Valentine’s Day! 

Peace

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Last night, as I was readying for bed, tending to my normal routine of brushing teeth, taking medicine, straightening the bed covers, and plugging in my phone on the bedside table, I was overcome with exhaustion. My head felt dizzy, and my body felt discombobulated. I sat on the edge of the bed to steady myself, and I had no idea that tears would begin flowing. I wasn’t prepared for them. I had had an awfully trying day with Samuel, but when Scott got home, I seemed to relax more, and we caught up on Downton Abbey. Maggie went to bed at 9, and Samuel fell asleep on me soon after. So, when I began the climb up the stairs for bed, I did not anticipate how my emotions would turn so quickly. 

I laid down, Samuel at my side, Scott showering, and cried. I could not put my finger on it. Was it the exhaustion of the day? Was it the worry I consistently have about Samuel? Was it the always insecure staccato thoughts that make me wonder if I am doing any of it right? 
Scott got in the bed and asked me. I simply told him that I didn’t know. 
He drifted to sleep, and something (I say it was God) sent me to Maggie’s room. 
She makes the sweetest sound in her sleep that she has made since birth. It is a kind of sweet sigh as she breathes out. I climbed into bed next to her and wrapped my arms around her tummy, entwined my feet with hers, and just absorbed the warmth of my first born baby. She never woke, but she held tightly to me, and the memories of life as a parent of 1 flooded my heart. Her curls against my face, her soft, small fingers holding my hand, her tapping feet dancing in the living room. Just her. 
I immediately felt peace. I stayed about 20 minutes or so, and as I was leaving her room, I tripped on a metal wagon. It hurt my foot, but I stayed quiet, as to not wake her. She sat up quickly though, and said, “MOM, are you ok?”
She sounded grown. She said MOM- not mama or mommy. MOM.  
I reassured her that I was ok. And she said, “I love when you lay by me. Good night.”
I smiled as I exited the room, crawled back into my bed, and thanked God for those precious moments- His gift to this mother’s heart. 

 

Feeling like Dory

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We have had a busy Saturday so far. We have packed up every toy that Samuel is overstimulated by and head bangs on or with. It probably sounds silly, but it has hurt my feelings to do it. I have bought each one with love and excitement for who I thought my baby would be while playing with them. Instead, they have brought misery, frustration, and hurt. 

My sweet parents ordered Samuel some new toys that are specific to his needs, and we are looking forward to them getting here next week. Lots of soft puzzles, a padded toddler trampoline, a fabric barn and animals are the types of things we hope he will enjoy, while not injuring himself in the process. We also have a pressure sensitive vest and weighted blanket coming, in hopes that Samuel’s procprioceptive system will respond well to them, calming him and helping with the head banging. 
His new school called, and all of the paperwork, meetings and BIP plans are in place for him to start. We are just waiting on a date. 
There are many changes happening, and I am trying to stay out of my head, so to speak. I am trying to just go with this inevitable flow. 
Life is definitely not as I imagined it being for my 2 year old. But, life never goes according to anyone’s grand plan, does it? 
Just keep swimming, right?

Not enough

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I am in the midst of such a hard day. I cannot keep Samuel consoled or pacified from hitting his head. Nothing works. He is seeking that input, and no matter what I try, whether it is a ball, another toy, holding him, singing- he is determined to hit his head. He even waged war on the remote control, and the remote won. His little noggin hurts. My heart hurts. He has cried and cried. I have sobbed and sobbed.  

During his nap, I said a breath prayer that he would wake refreshed and reset. He didn’t. 

I have checked for fever, given him his reflux medicine, rocked him and gotten on the floor with him. All, to no avail. 
We have watched Baby Einstein, played on a specialized app for his autism. He usually loves it, but he just hit his head on the screen. Gently, at first, but repetitively until he cried out in pain. 
I don’t understand it all. I only know what the doctor has said, and what I have read about the proprioceptive system. I am doing all that I know to do. I feel as though I am not who he needs me to be- I have failed him. I am frustrated that I don’t know what to do to ease his body, and I find myself counting the hours and minutes until Scott gets home and wishing for my mother, all at once. I am alone in this today. Lord, please help me feel your presence. 
Waiting for the calm…

Kneel

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It has been a couple of weeks since Maggie and I had our lab work done for genetics. I have been biding my time trying not to worry about the results. But, tonight, it is all I can think about. My mind keeps bouncing from question to question. What if the Dup15 is hereditary? What if I have passed this to my daughter, unknowingly, too? 

And the questions then, repeatedly, answer themselves: There was no way of knowing, and we will deal with whatever comes our way. But, those responses just don’t seem enough. I am uneasy, as if I am the sand, and the ocean’s tide is consistently pulling me under; it’s power is too much for me to keep standing. 
So, I fall. I am swept out to sea, flailing, waiting for a life boat to save me. I am waiting for answers that will inevitably lead to more questions. I often wonder if the questions will ever all be answered.  
I know I must swim to a buoy, hold on, and wait in God’s timing, all the while tossing in the surf, praying anxiously for good news. 
Some think that because Christians are saved in God’s grace, that life must be easy. I say that being a Christian is the most beautiful blessing I have ever known, but I am tested, too. I doubt.  I scream. I question. I have slips of the tongue. And I worry. 
Worrying is not what God tells us to do in times of angst. He tells us to leave the worry- to trust Him fully- to lay our fears at the cross. Tonight, doing this is difficult. I can’t muster the will to stand back up in this storm, so I will kneel.  
Lord, thank you for loving me even when I don’t put my faith wholly in you. Help the worry subside. Amen. 

Info

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This weekend, Maggie had her sweet friend Carlee over on Saturday for a sleep over. I got to visit with her mama, and my friend, Dana, too. It was nice to see them. 

They played outside with bubbles, sidewalk chalk, and rode their scooters. They smelled like dirty, content kids. It felt so good to see Maggie happy, without a care in her little 9 year old world.  I am really going to try to have her friends over monthly. I see how much she thrives on just being with them. It also gives her some much-needed time away from Sam. He has been head banging consistently, dozens of times daily, for about 2 1/2 weeks. He was improving, so we decided to hold off on his protective helmet. It looks like we’ll have to go that route now. He is not sleeping well, either. It seems that is the case when the stimming is much during the day. I have to hold him tightly, and he finally drifts to sleep banging his head back and forth on my chest or shoulder. When we lie him down, either Scott or I have to hold onto him throughout the night. He needs that proprioceptive input, even while sleeping. 
“The proprioception sensory system is carried out utilizing proprioceptors in the muscles that monitor length, tension, pressure, and noxious stimuli. The muscle spindles, the most complex and studied of the proprioceptors, informs other neurons of the length of the muscle and the velocity of the stretch. The density of muscle spindles within a muscle increases for muscles involved in fine movements, as opposed to those involved in larger course movements. The brain needs input from many of these spindles in order to register changes in angle and position that the muscle has accomplished. There is also more spindles found in the arms and legs, muscles that must maintain posture against gravity.”
We are learning so much each day about Samuel and his needs. This is also why he head bangs the majority of the time. It helps him ‘feel’ where he is. 
Genetics:
Samuel has Micro duplication 15q11.2q13.1     
Interstitial. 
It is a rare chromosomal abnormality, and I am so fortunate to have the Dup15 Alliance to help us work through some of Samuel’s issues. I am also able to speak to families around the world, in a private group, about Samuel. These families are so amazing. They come together to raise awareness and funds for research and support for families who have Dup15 children. 

We revisited genetics last week, and Dr. Rodriguez explained that Samuel’s Dup 15 could be De novo (an anomaly in the one particular egg he was formed from) or it could be hereditary, coming from me somewhere on my father’s side of the family. So, Maggie and I had lab work done, and now we wait. 
I felt an immense relief to know what is causing Samuel’s disabilities, but now I am scared to find out in 4-6 weeks if Maggie has the duplication, as well.  Maggie has a small hole in her heart. We found that out during my pregnancy with Samuel. She has an autoimmune condition, migraines, and scoliosis. If she has the dup15 abnormality, hers has manifested physically, but not developmentally, like Samuel’s. If she tests positive for it, then her child bearing years can be affected, as it can be passed onto her children, should she choose to have any. But, for now, we are taking one breath at a time, and as my mama says, we are not ‘going to borrow trouble.’ 
This is so much information to take in, but writing it out helps me to learn. 
As far as how I am feeling lately- I’m exhausted, but I have a beautiful family who is always by my side. I love them more than I could ever say. 

2!

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Samuel is 2 big years old!  He really enjoyed eating his cupcake and couldn’t wait to touch all of his balloons. At one point, he just laid his little head down on his high chair. Sugar crash! 

He did really well with us singing to him, but we kept things low key for the most part. I am happy that we decided to not go overboard on his party. It was nice. We even got smiles when we would say the word delicioso. For some reason, he loves the sound of that Spanish word. Lol 
He generally fatigues easily, and he is so tired. I am tired, too. But, I am so very thankful for this life with this boy, who is so special to me. Thank you, Lord for the birth of Samuel. 

Growing

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I was going to wait and post about Samuel’s birthday tomorrow, on his actual birthday. I will probably still do that, but my heart is telling my fingers to write.

Because we have had so much going on these past weeks, I must admit that Samuel’s big day sneaked up on me. It definitely kept entering my mind, but I had to push it aside. Genetics, ENT, pulmonologist, ABA school tours and applications, and just life. It happens. 
We decided not to do a party with friends and extended family, as he withdraws a good deal when he is around others. I am praying that since it will only be the 4 of us, that he will be able to soak it in a little more and that he will connect some and enjoy it. 
I have this sinking guilt about waiting until the last minute to figure out what to get him, and what to do for him. Every time I would let the idea of him turning 2 enter my thoughts, I’d want to cry. I would flashback to my Maggie running up to her daddy and me and saying very emphatically, “I gonna be TWOOO years old!  I a big girl!”
She’d hold up her two fingers with help from her other hand to keep them upright, and she was so excited. 
I am doing better most days, but sometimes all it takes is just something small, like a memory of Maggie’s normal, undelayed development, to make me want to go inside myself and remain frozen. I think about how he can’t open presents and how he can’t blow out the candles on his cake. I know he can’t jump with excitement or dance to the music. I think about how he will bang his head if things are confusing or because he can’t communicate. 
I know, though, that I cannot hide in those miserable feelings. I must keep moving, improving as a mother and advocate for my child, ensuring that he becomes the best Sam that he is intended to be. That includes making sure his birthdays are just as special as Maggie’s. Although, realistically, we know that Samuel has no concept of his special day, we do! 
I pray that when he is older he will see the videos, pictures, and memories 
of important life moments and be able to enjoy them- to see how meaningful these times were to us as his family. 
So, I got busy. I bought decorations, ordered him our favorite Ooh La La cupcakes, bought presents, and picked out lots of balloons. He loves balloons. 
Maggie wrote a sweet birthday song to sing for him tomorrow, too. 
And as Samuel is blossoming into a toddler, I am growing, too. I am seeing more and more that life is what we determine it to be. Either, I can cry at what Samuel is lacking in development, or I can rejoice in who God so lovingly and purposefully knit in my womb. Samuel is full of possibilities, and I cannot wait to see what God does in his life this year. Tomorrow will be good. It will be different. But, it will be good. Plus, who doesn’t love cupcakes!

Samuel Scott Bland 

1/22/13
4:36 pm
6lbs 6 ounces