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.)  :) 

     

Good things are a commin'

Today I am going to wear my good jeans.  You know, the ones you save for special occasions. I'm going to cook dinner and we will eat out of the good dishes. The full spread all out on the table, I might even light the "saved for something special" candles.  I'm going to dry my hands on the "just for show" towels.  I'm going to spray myself head to toe in my designer fragrance and I won't let myself calculate just about how much each spritz costs.  Today is a good day to wear my beautiful jewelry. I want to sparkle and shine and....... SMILE!

Why do we save the best things for later? What exactly are we saving them for? I've been thinking a lot lately (that's trouble) about what's important. About life and living it. Really living it. Waking up and appreciating what this day will hold. I've always been a planner. A visionary, if you will. I look into the future and I plan what life will be like when......  But then something happened and it made me wake up. I opened my eyes to see my life is passing by so quickly. I Don't want to live in the memories of the past or live in the thoughts of the future.  No more, "I can't wait until.....".  I WANT TO LIVE FOR TODAY! What will this day hold? How can I make someone smile today? What can I do to make someone's day a little brighter, today?

I'm going to go outside and soak in this beautiful chillly-sunny (yes, you can have both in you live in Phoenix, AZ) day. This is the day the Lord has made. I'm going to rejoice and be glad in it!  I'm ready to pull out my new sneakers, the one's I've been holding on to for a long time because they are so pretty and new.  This is big for me. people! No more holding out! Today, I am all in!!! Whatch out world!

Grace-Anna's Adoption Story

Grace-Anna’s Adoption Story

It was January 20, 2012. Jaret and I sat together in front of the computer screen and waited for the list of waiting children. It was a blizzard outside and we were about to lose our internet connection. We had called our agency and requested a couple of different files from the waiting children’s list.  We were able to receive our email and bring up the first file on the screen and then the internet went down because of the storm.  None of the other files we had requested would come up.  Our screen was stuck on one little Chinese Orphan, Fu EnHui. We had asked God to make our choice for us. To connect our hearts to one little girl who needed us.  Here we were, on that frozen day, with our internet frozen, staring with frozen eyes to the little girl who waited at the Social Welfare Institute of Yingtan City.

Her profile said she was born on October 30, 2009. It went on to say at 7:30 on December 20, 2009, she was abandoned. She was left with a birth note and some clothes.  It added some details about her daily living and then the words, “Although she can not see anything, she responds to sound.”  “Now she is 1 year and 1 month and she is quiet. She does not know familiar persons.”  Then, nothing else was said about little Fu EnHui. 

We immediately called the best pediatric eye specialists and asked them to review her file and give us their best opinion.  I remember I was sitting in the parking lot at the grocery store when the call from the Dr. came in. She was gracious enough to call me back in the evening after reviewing her chart.  She told me in her opinion; I should be prepared that this child would never see.  I came home and talked it over with Jaret.  He didn’t even have to think about it, he said, “This child will either glorify God with the miracle of sight, or she will glorify Him through her blindness.”  We agreed to get the papers started immediately!  That night, Jaret dreamed of a Chinese girl playing the most beautiful piece of music on the piano. There was no sheet of music to be seen, she was playing from her heart.

There was more information sent to us about Fu EnHui. She had been brought to a foster home until she was 8 or 9 months old. Then they returned her to the Institute. I don’t know why, nothing is said. I just know that this precious baby lost another family that cared for her. She was brought to the special needs institute and left, again.  And there she stayed for almost 2 years.

While we waiting for endless paper trails and tons of legal matters, we got a gift.  The orphanage sent us some photos of our girl. I cried my eyes out as I stared at a tiny little thing that couldn’t stand on her own. She was so skinny and cold looking.  We also noticed a few things in the pictures, like her crib had tie downs in it that they used to tie around her ankles. She also sat in a chair that spread her legs open wide with a potty-bowl under it.  These images were so hard for me to see knowing I couldn’t get to my child.

As papers came in and releases were given, we were planning our trip to China on September 6, 2012.  When we arrived, we were taken all over Beijing to see beautiful sights and the normal touristy things.  Then, September 10 came. We arrived at our hotel in Nanchung and were told they were bringing our girl to us! What?? Just like that? I didn’t know what to do. I was exhausted from all the travel and airplane flights, but there was no way I could take a little nap. So I sat and looked out the window. 

The knock at the door startled us all! I was shaking with excitement. It was my “birth” moment. I have been blessed to birth 2 of my babies, and I can tell you, that moment right before you hold your child, no matter how they get there, it is the same. She may not have been in my tummy, but there she was, right on the other side of that door.  Jaret opened it and there was, the tiniest, little, scared to death,  Ladybug.  My Ladybug!! She was wearing a cute little pastel green shirt and pants with socks and jelly shoes on. They had done her hair in many little ponytails all over her head.  She was clutching a piece of paper. Something they had given her on the car ride over to comfort her, I’ m sure.  The lady handed her over and asked if we had any questions. Questions??? Yes!!! But I had too many swirling in my head for just one to come out. I didn’t know what to say. They talked some legal matters with our translator and waved goodbye. 

“Hello, Little One, I am your Momma. And you are Grace-Anna.”  She sat there expressionless and didn’t like this crazy woman touching all over her.  I can’t begin to imagine what she must have felt like.  She was pretty quiet at first.  It was later that she found her screams and wouldn’t stop using them!  We realized we didn’t have anything to feed her with, so Jaret ran out to the market and bought her sippy cups, bottles, spoons, anything for a baby/toddler to eat with.  We tried to give her drinks of milk, water, or juice and nothing would go in right.  She kept choking and spitting everything up. I had no idea how to feed my poor baby. The next day we found out that at the special needs orphanage, they did not feed the children. They mixed up the required food and milk and nutrients in a blender and went child to child with a syringe.  My three year old had no idea how to eat or drink.

That night I decided to give her a bath.  When I took off her clothes I saw all of the scars she had from head to toe. Some were freshly scabbed over. Her legs were like leather with scratches and scabs all over them.  As I put her into the bathtub, some of the scabs washed off. I sat there on the floor of the bathroom in a hotel in China and I felt Jesus right by our side.  I began to sing “Amazing Grace”.

Amazing Grace, how sweet the sound

That saved a wretch like me.

I once was lost, but now I am found.

Was blind but now, I see.

Twas Grace that taught my heart to fear

And grace, my fears relieved.

How precious did

That Grace appear.

The hour I first believed.

I saw myself in that bathtub. I was scabbed over, lost, rejected, and afraid. But then my Lord came to wash me clean and because of His scars, I am saved! It was a beautiful moment! Grace-Anna had already begun to show me Christ’s love.  And that’s what she does, still to this day, she shows me how to live more like Jesus.

These two years since we brought her home have not been easy. There’s a lot in the adoption world that you are not told about.  I had never heard of Sensory Processing Disorder before. But now I know my two adopted daughters are poster children for this disorder. The scars Grace-Anna had all over her body are mostly self -inflicted. She would sit there and pick and pull and scratch herself all over just to feel something. She still continues to do this when she frightened, or over-stimulated, or under-stimulated, or in pain.  She still sleeps in mittens every night. I am now very educated in sensory therapies. We do them every day. She also wears a knee cage on her left knee because her physical therapist found that she has a torn ACL in her left kneecap. Our best guess is from falling out of her crib with her leg tied down.  Her hips are permanently deformed to look like she just got done riding a horse. This is from sitting hours and hours a day in the potty-chairs that kept their hips over-stretched. Her little feet turn inward when she tries to walk because of the lack of muscle tone. She is still not potty trained (far from it) at 5 years old.  She lacks the muscles to hold in her potty.  Her little hands shake when she tries to string beads, feed herself, get dressed, or anything that takes work from her hands. She can not sit still to listen to a book or hear a movie. She can’t tell me of her emotions yet. She refuses to speak Chinese or talk about anything from China.  She still has night terrors, the worst you’ve ever seen.  We will never know what our baby’s life was like. I’m sure she has endured more than we could ever imagine.

We have done our best to bring her sight. We’ve been through numerous surgeries, 3 corneal transplants that have all failed, and we still give  11 drops of medication in her eyes a day.  After her transplants, she had a glimpse of sight. We talked about flowers and colors and cars and people’s doors along our walks.  She saw the beautiful things that God has created, even if just for a brief moment.  Her eyes have clouded over again and she is back to relying on touch for everything.  This is God’s plan for her life. I am finding peace with it.  My husband showed much wisdom from the beginning in saying that she will glorify God either with sight, or without. 

Now, let me tell you about my precious treasure.   From the moment she wakes up, she has a smile on her face. She loves life!! Everyone who has ever met her, talks about her smile and her joy.  She teaches me to love the little things.  She is grateful in everything. Every night, she practically vibrates with excitement at pajama time. She asks, “Can I get pajama on?”  I tell her yes, it’s time to put our pj’s on and she acts like it’s Christmas morning…..every…….single…..time!!!  She is opinionated, and will not be pushed around from her sister.  She never complains about anything you put before her.  And she tries her hardest to do what you ask of her.  She could teach this world what it means to love.

People often say things like, “She is so lucky.” They have no idea that it’s the other way around.  Since the moment Grace-Anna Fu EnHui came into my life, she has made me more like Jesus.  He has a lot more work to do on me, but we’re making progress. New hurdles are cleared everyday.

Jesus looked the whole world over and set the lonely in my arms!  He sent a blizzard to place His child in our family.  We named our child, Grace-Anna, which means double portion of grace. While we were in China we asked what EnHui meant.  Only God could have written this story. Her Chinese name means to bestow or give…..Grace.

Multiple Sclerosis

I’m ready to let the world into my journey. I have multiple sclerosis. Two little letters, MS. Those two little letters have changed my life.  I’m not who I used to be. And that’s not all together a bad thing. In a weird sort of way, MS  has been a gift from God. Although days like today do not feel like a gift. But, hear me out, I HAVE to walk daily with Jesus through this illness. He never leaves my side.  And for that I am thankful.   My pride is being stripped away. I’m learning to be grateful for the small things.

I’m learning to give my old dreams over to God and with open hands, accept the new journey He has for me. Some days I feel stronger than I’ve ever been. It’s not easy though.  Since we are all friends and I’m being honest here, some days I just cry. This new normal is not very nice.  I have to focus forward on what’s next. If I look back to when I was this…. Or when I could do that….Or we were going to do this…..  I lose a piece of me and I feel weak and sad. But on those good days when I place my trust in my God and I can lean on my family, the future doesn’t look so scary.

I’ll write more of my story soon. I want to let you in on my journey. I need the encouragement of my friends and family.  I’m learning to laugh along even this journey.  On Christmas Eve, the family went to lunch at Barrow’s pizza. I got the salad bar and I thought I was putting salad in my bowl, but instead I was missing my bowl completely and was throwing the salad on the ground! I laughed and said it was a new meaning to a “tossed salad”. J  Gotta laugh.

Thank you for your prayers and well wishes for me and my family.  I have a long journey ahead and I don’t really know what it will look like. But I do know that it will be ok. “For when I am weak, then I am strong!”