Life with blindness and autism

“Dear Lord, please give me a ministry to serve You at. Show me where I can serve and be more like You.”

Oh, My Child, you are serving the least of these. You are ministering to the broken and the outcast. You are doing My will, you are My hands and feet.

“No, please, Father, give me another ministry. This one is too hard and I am not equipped for it.”

You’re right, you are not. But I AM! Lean on me, give me your weakness, and I will make you strong! I will equip you with mercy. I will give you love. I will provide you with hope. I will show you my Son, Jesus, through these children. I have commanded you to love the orphans and windows. I will not send you where my grace does not cover. 

            I can’t tell you how many times I’ve had this discussion. I am so thankful that my God is a patient God. Oh, how many times I’ve asked Him to “change my ministry”.  I am not proud of the many times I’ve uttered, “I didn’t ask for this!”  I am a sinful person in my desires for ease and comfort. Some days, things are just hard.  Quoting a family favorite movie, The Bee Movie, “Why is yogurt night so difficult?”

            When we adopted Grace-Anna from China at three years old, we knew she was a special needs child with low vision. We knew she was coming from a hard orphanage situation and hadn’t had any sensory stimulation for three years. But we knew that this little lonely child was about to become a forever daughter. There was no doubt, she was the one we were called to bring into our family and make her ours. She was the perfect sister for a very active, imaginative, bossy, Ethiopian Princess.  They were 9 months apart and both such tiny little girls. God had given us these treasures to love and protect.

            As time went on, we noticed that instead of healing and improving the gap from the normal delays from an institutionalized child, Grace-Anna was falling farther behind. The intellectual gap between her sister and herself was getting wider and wider. The school system kept insisting that because of her blindness, she would be behind. They said she was a very pleasant child that always wore a smile. She wasn’t a trouble maker, so no concerns there.

            I remember after the first grade having a meeting with her “team” (That’s what they call the group of people assigned to your child that apparently know your child better than you do. They know what’s best and don’t like it when you disagree.) I remember becoming passionate in our meeting and saying that my daughter was falling too far behind and shouldn’t be moved onto the second grade, despite the perfect  A’s on her report card. I was told I was incorrect and that she was actually functioning above the other students in her class. But of course, they would throw in that because she was blind, she couldn’t be tested for any of the developmental delays and that she would always have “blindisms”, a term that is offensive to the blind community. It means that she acts in a way that is different from her peers just because of her lack of sight.

            So, here we are now, almost seven years later. It has been a battle with the school system every year. We had to take our daughter to the Southwestern Autism Research and Resource center and have her officially diagnosed as being on the autism spectrum. Even with this report in my hand, the school denied autism and a  learning disability. Despite her moving into the 4^th grade, my daughter could not read at a 1st grade level, but she can identify braille letters perfectly. She can use an abacus and multiply double digits, but she can’t tell you what 2 + 2 equals.  She couldn’t have lunch with her peers, because she would stick her face in their lunches to smell what they were having for lunch. She still goes to the bathroom in her pants if no one tells her to use the restroom. Cleaning up a number 2 mess in a 10 year old, is not fun, I assure you. She doesn’t understand self and community safety. She is just as pleasant with a stranger as she is with a long- time friend. I can’t go shopping without having a hand on her at all times. She will wander away and because of having no vision, she gets lost and can’t find me. I have been given a white cane for myself to use so Grace-Anna can hear me tapping and follow by my side. (But keeping it real with you, somedays I just want to pick up a shirt and hold it to my body and see how it feels and looks without having to keep a constant rhythm of tapping with my cane.) She can not be tasked with drawing her own bath. She still will sit in scalding hot water and not even utter a word.  When she spills her cereal, she will just walk away. She would starve before asking for a snack. She hasn’t found the ability to “use her words”.  My child functions at about the age of a typical 3-4 year old.  So, without the school system on our side, I have decided to bring her home and homeschool her this year.

            Our schedule is going to be quite full. Grace-Anna receives physical therapy twice a week, occupational therapy, speech therapy, mobility, and vision services. We have not yet been able to find any help with addressing the more common autism issues like the melt downs over simple things, or the lack of social skills with other children.  Grace-Anna loves to dance, and I have found a ballet studio that has agreed to take her on as a student. I am hoping that she will be able to make friends there. Note to self – ballet is on Wednesdays, squeeze that in and don’t forget to buy pink slippers.

            I have such hope for our school year. I also homeschool Grace-Anna’s sister, that has been diagnosed with ADHD and sensory processing disorder. Despite her own challenges, she has more patience and grace and love for her sister than I could have ever imagined. She is looking forward to becoming more proficient in braille this year with her sister. I wonder if God is weaving this beautiful tapestry of ministry to the blind in her future.

 I have hope that I can teach Grace-Anna life skills that will make her more independent. I hope that I can teach her how to think and formulate her own opinions. I hope I can teach her how to make a sandwich and wash her own knife. I hope I can teach her that strangers are not always our friends and we have to guard ourselves from danger. But most importantly I WILL teach her that Jesus loves her and that He has a plan for her life. That she is precious in His sight. I will teach her through my life as her momma of God’s ultimate grace and mercy as He forgives my shortcomings on this journey He has called me to.

“Lord, can you please give me some kind of road map here. I don’t know what I should do or how I should act.”

My weary daughter, I have written a love note to you which will guide your steps. Read My Word and be encouraged. These children I have entrusted to you, will call you blessed!

 “Strength and dignity are her clothing, and she laughs at the days to come. She opens her mouth with wisdom, and the teaching of kindness is on her tongue. She looks well to the ways of her household and does not eat the bread of idleness. Her children rise up and call her blessed.”  Proverbs 31:25-28

Despair

Despair: What an ugly word. Look at it sitting there on the page all filled with loneliness and hopelessness. I hate it. You can’t explain it to others and you don’t know when it will come. Somedays it just slithers its putrid, little self, right into the middle of everything you have going.  What a horrible thing, to be a professing Christian and battling despair, right?  I search for the church-y answer. Surely, it’s there on the pages of one of the many Bible studies that I’ve highlighted, earmarked, and lined with post-it notes.  I know it’s there in the greatest book of all time. I know the Bible has all the answers and I know that Jesus came to set me free. But right now, despair is laughing at me and I hate it. Its sticky, little, disgusting fingers move up to my brain and try to hold me hostage.  It whispers of all the trouble in this life. It whispers of the disease you are fighting, of broken relationships, of lack of support, of tiredness of caring for special -needs children. It whispers some days, and others it screams. No one else can hear it though, and no one wants to hear you speak of it. It’s such a scandalous, almost naughty word.  D-E-S-P-A-I-R.  There it is again, sucking all the happy right off this page.  

            Who has time for this? Not me. I don’t have a single minute to give to this slimy creature, ugh, I mean word, “slimy word”.  So, we do what we do and we battle on, most often alone.  “Seek Joy”, I tell myself. Capital “J” because Christ is ultimate joy.  He is my secret weapon that despair can not win against.  I must speak it out loud so the loneness and hopelessness can hear it clearly. “LORD, PROTECT MY MIND TODAY.”  And we battle on, protected and loved by the One who has already defeated the enemy of despair.

I miss the old me.

Life Goes On

     Thank you, all! I have heard from so many wonderful people offering their love, prayers, and support. I know that everyone has their own "stuff" going on and still they've stopped in their day to pray for us and offer their best wishes our way.  I love you all, so very much! 

     So yesterday was the big day. I woke up in a lot of pain, so it was a good day to see the Dr. My totally amazing husband was right there by my side, as he has been through this whole journey. The specialist came in and was all business. I guess when your specialty is ALS, there is no time for small talk. After his examination he determined that I am missing a couple key factors that positively identify ALS. He does not agree that I have ALS. !!!!!!!!!!! I could go on and on with exclamation points. This was such a victory for us. 

     My heart goes out to those families that have not heard the news that we did yesterday. There are mommies, daddies, wives, husbands, sons and daughters that are suffering with this disease. "Please, God, be with them. "

     My family and I are still dealing with the progression of my disease and what this future will look like. My heart and flesh will fail me, but my inner self is being renewed every day! God is making me strong in Him and I bless His Name for He has been good to me. Whatever this future will hold, I know that He holds me! 

     Now, onward and upward. We have a Chinese treasure's 6th birthday to celebrate today! Thank you, Lord, life goes on! 

     

ALS: Amyotrophic Lateral Sclerosis

ALS: Amyotrophic Lateral Sclerosis 

     Remember last year when everyone you knew did the ice-bucket challenge? It became the cool thing to do even if no one knew what "ALS" was.  I'll tell you what it is. It is a motor neuron disease that attacks your nerve cells and quickly kills your muscle function.  It is fatal with a life expectancy of 3-5 years.  And it is what my neurologist has diagnosed me with.  

     Pretty heavy stuff, huh? I'm seeing the top ALS specialist is Arizona this Thursday, the 29th.  I guess a lot will be answered in less than one week.  I can't help it, but my mind is running crazy with so much.  This can't be real.  This is someone else's life that I am reading about. Is this my story that God has been writing out all along?  

     Meagan and I have had long talks about a fall wedding. It would be so beautiful in the colors of Arkansas where her man waits "patiently" for her hand.  I have much work to do in preparing my eldest daughter to be a wife. There's so much to be planned for. My only son will be graduating high-school in 1 1/2 years. He still thinks he's taking our horse with him when he leaves to college.  I kneel in his room by his bed every Monday and pray over his life. I truly feel that God has big plans for Brendan and the enemy wants very badly to stop him. I must carry on in my prayers. My coffee-bean (Analise) is advancing quickly in gymnastics and has her sights set on the olympics (along with every other little girl in gym class).  I sit, three days a week, for two hours each day and cheer on her practice. I am her biggest fan. My Grace-Anna is learning braille. She has announced that she wants to be a teacher for the blind.  She goes into her room and sets up her stuffed animals and proceeds to teach them to use an abacus to count and goes over the "a" on her pretend Perkins brailler.  I dream of what her life will look like. I know it will be precious! Jaret and I will celebrate our 20th Anniversary next year. Boy, have we had a journey together! Our testimony is one of miracles and healing and joy and grace and just.....God's beauty. We have plans of sitting in our white, Cracker-Barrel purchased, rocking chairs and pouring wisdom into our grand-babies.  You see, I am needed and I have plans. 

     What happens when our plans and God's don't match up? What if all along my story has been written and it's almost to the final chapter? Can I accept this passage and still give God glory?

     I will try to not dwell on the possibilities until Thursday. I don't want to waste this week. Instead, I will let my love overflow, I will be a little more silly, I will wiggle and tickle my two littles, I will try my best at embarrassing my man-boy with momma hugs and kisses, I will surprise my daughter at college with a lunch date,  and I will make sure these things are tucked away in my memory forever.  

Sleep..........For the love of everything good.........Sleep!

Sleep..........For the love of everything good.........Sleep! 

     I'm exhausted!! I mean it.  I'm out of my mind, totally exhausted. The large dark circles under my eyes will attest to it. I wear a Misfit exercise and sleep monitor all the time now.  It keeps me accountable to moving my body enough through the day, but it also tracks my sleep patterns.  Let's see, yep, I got a whoppin' 1hr and 53 min. of restful sleep last night.  Three hours and 45 min. the night before, and Wow, four hours and 12 min. the night before that (that's the most restful sleep I've had in weeks).  I'm that kind of tired that S.T.R.O.N.G. coffee doesn't quite touch.  Anyone have any tooth picks to prop open my eyes? 

     I have the same sleep pattern every night.  I fall asleep as soon as my head hits the pillow;  a tornado couldn't wake me up during this time.  But that only last a very short time. Then my brain fires and tells me that there's an emergency. I wake up frantic and often my heart is racing. Then my whole body marathon starts. My legs kick like we're in the last leg of a race and I'm giving it my all. My body turns from side to side like I'm a rotisserie chicken.  My arms and shoulders feel like I'm putting my pinky finger into a light socket.  I lay there and contemplate every single situation in my life.  I plan my days, I pray for friends and family, I pray for REST and PEACE.  Then, in the final hours of the morning, I usually fall back to sleep for a tiny bit longer before my alarm tells me, I'm out of luck. 

     My dreams are very interesting, too. No need to go to a psychiatrist, my dreams are easy to interpret. There's the reoccurring dream of someone big and scary chasing my down the street. I run as fast as I can, screaming for help. My neighbors open their doors enough to peak out and I scream, "Help Me!". They close their doors tightly and I run on. I collapse into pure exhaustion trying to hide from this antagonizing figure.  I'm always running. A couple of nights ago, I guess I was feeling rather creative in the brain when I came up with this one. So, I was drafted into the military and being pushed along in this big, crowded line.  I stood before a huge man and he thrust a massive gun into my arms. I could barely hold it, and I had no idea how to use it. The line went on and next, a heavy bed roll was given to me. I couldn't carry it! It was just too heavy. I told the guy I couldn't manage the bed roll and the gun, and he said, "Then you will die."  (Pretty caring sentiments, I think.)  I was still walking along in line and then, Bam, we were out in battle!  Shots were being fired and everyone else was using their guns and fighting. I tried to figure out my gun and then began to ask for help to use it. No one heard me. No one even looked at me. I ran into a war-torn building and tried desperately to find a hiding corner.  I couldn't fight anymore, I just wanted to hide.   

     My friends and family reading this all know that I have put my faith and trust in Jesus Christ. So, one might say according to these dreams, you are trying to carry your own burdens and not releasing everything to Jesus. I would agree that this is what it looks like.  However, until you have walked (some days, limped) in my shoes, until your own body has decided to destroy itself, until every dream and plan you made for yourself and your husband has to be re-written, please do not pass judgement. Frankly, I'm too tired to hear it. 

     I put so many oils on me at night, you'd swear I'd slick right up and out of my bed! It's a good thing I don't have satin sheets or I might! I've tried every natural herb and tea. Yes, I pray powerfully and diligently for rest.  I don't know what else to do. I fight this MS (will from here on out be referred to as "The Monster") all day long, I'm too tired to fight it in my sleep.  

    So, I move on. I will start my day by asking God for His strength to attack this day. One. Day. At. A. Time.  Sometimes, one step at a time.  Life is hard, but God is good. He will give me what I need, including rest. 

(And NO, I'm not complaining. I'm SHARING.)  :)