Showing posts with label Tourettes Syndrome. Show all posts
Showing posts with label Tourettes Syndrome. Show all posts

The Choice





We were eating dinner when my ten year old daughter asked the question: “What’s abortion?”

It hung in the air – over the dinner table – waiting for an answer. How do you explain something so horrific?  “It’s when they take a baby out of a Mommy’s tummy before it can live on its own…and let it die.”

She couldn’t understand, why people would make a Mommy take a baby out of her tummy before it was ready to be born.

I tried to sound gracious; but there isn’t a gracious way to truthfully explain abortion.  Both my children were unable to understand what they were hearing. I quietly, stated it in a term they could understand:   “It’s murder.” 

My husband explained that some people don’t believe a baby is a baby until it can live outside of the mommy’s tummy on its own.  That some people say that it is just a mass of cells until it is born. That some people feel that if a mom doesn’t want it in her tummy – it’s in her body and she has the right to take it out. He explained that some moms choose to have an abortion because they find out that something is wrong with their baby. 

Anna’s response was short but profound, “But that’s selfish.”

It’s true, if you tell a lie long enough and loud enough, people will believe it.  But history has proven that one of deception’s greatest enemies is time.  Time has a way of revealing truth.  Truth exposes liars for who they are.  Time revealed Hitler’s wicked heart -- the blood of thousands cries from the grave begging for justice.  God Himself will avenge their deaths – justice will be served.  History will repeat itself, abortion will have its day of reckoning.


My son’s emotions rose within him and his words spilled out, “That’s stupid – no, that’s way beyond stupid!  How many babies does this happens to?”    I told him a lot, but his autistic mind wanted a number.  So, Rob pulled out his phone and googled the question.


The awful statistics came up:  in America alone, three thousand babies’ hearts are made to stop beating – every single day! Let that number sink in – 3,000. 

Zak’s mind was starting to connect the dots, “Like with me – and autism?   So, some people would find out that their baby has autism and would just kill it?”

I explained that things like autism can’t be seen in the tests they do before birth; but genetic issues like Down syndrome or birth defects would show up before a baby was born.

“Do I have that…Down syndrome?”  His fork has stopped midair.

“No,” I thought, but didn’t say, “you have Autism, Tourette’s syndrome, Cognitive and Developmental delays, Chronic hypertension – caused, most likely, from Fetal alcohol syndrome which has also caused the hearing loss that necessitates your two hearing aids.”  

I looked into his eyes, and answered truthfully, “No, you don’t have Down syndrome.”

“I have lots of issues…why wasn’t I aborted?” I marveled at his deductive reasoning. 

My words came out with conviction, “Because your biological mom made the choice - to let you be born!”

For a moment, I thought of all the children that will never be.  All the laughter that will never be heard.  All the beauty that will never be enjoyed.  This ‘way beyond stupid’ thing called abortion has changed life more than we realize.   

Each year, around the world, over fifty million babies’ hearts are made to stop beating – and while their lives are tragically gone, we rarely contemplate that our lives suffer because of it.  So many wonderful things that could be added to life, and family, and community are just - gone.  Life goes on without realizing how much - or how many - are missing. 


The four of us began clearing off the table - adoption has made us a family.  Both of them were “unplanned” and had mothers who had to make a choice.  They chose life.  

Every single day their choice makes my world more colorful, more beautiful, and more wonderful! I will forever be grateful they chose life – and in turn added richly to mine. 




On the Day He was Born






On the day he was born - I had no idea that he would become part of our family in a little more than a year.

I have tried, in vain, to try to piece together where I was and what I was doing on the day he was born.  I was busy cleaning the house, doing laundry, teaching kids, perhaps practicing piano or writing; and at the very same time miles away from where I lived a little baby boy (my son) was taking his first breath.  A little boy that would change my life - started his life without me.



How much did he weigh?  What was his apgar score? 
Was he born in a hospital or at home?
Seconds after he was born did he cry loudly or softly?  Did he cry at all?
Did someone hold him in their arms?  Was anyone awestruck when looking at his little face and hands that life is precious and beautiful?
Did he feel loved and cherished or alone and helpless?

All these questions will remain unanswered on this earth.



I don't know all the little details surrounding the moments and hours after he took his first breath; but I know that God was there.  God heard his first cries and was mesmerized by this one so little and tiny; because God had a plan for his life.  The all loving God of the universe watched him as he slept and loved him.  I have no doubt in my mind that God's protection surrounded him as a baby; and while I was just going through the everyday routine of my day - God was keeping him safe for me, and preparing my heart for him. 



I was so fearful when we started the adoption process that we would "end up" with a child that had debilitating issues because of Fetal Alcohol Syndrome.  It was the one reason I was afraid to adopt.  I begged God to make sure He protected us from getting a child with FAS.  If there was one reason I would have not adopted it would have been that reason.  I was also terrified of autism.  I told God that I would trust that He would make sure that we did not have a child with autism.   



I have learned that God does not keep us away from the things that scare us - He delivers us from our fears.



Zak has Autism, and FAS, and TS, and Celiac Disease - and perhaps the list will grow.  I am not as afraid of those words as I was thirteen years ago.    Sometimes, the uncertainty that comes with those words still scares me; but those words are teaching me just how big my God is.  He has the power to cure autism and spare growing brains from the effects of alcohol; but sometimes He chooses to do something even bigger -  He chooses to let us see that He is more powerful than these disabilities.



 I have learned about my God through Zak's disabilities. 



On the day Zak was born - God was preparing a beautiful gift for me.  I have learned about faith through Zak.  I have been given a beautiful gift from God in this boy.  His eyelashes are still long and beautiful.  I love his smile and when he laughs it envelops the entire house.  But most of all, Zak is a boy who is in love with his God.  He talks about Him all the time - and there is nothing God cannot do.  I have watched Zak depend upon God to meet his needs and been challenged by his faith. 



God delights to deliver us from our fears; not always by removing us or keeping us from the things that scare us; but by pouring out grace upon us as we live in dependence on God in the midst of our fears.  

This week we celebrate his birthday - I cannot believe we have entered the teen years already!   Happy Birthday, Zak.  I am so glad God put you in our family!  You are, without a doubt, God's gift to me.  I love you! 



God is so Good - Month in Review - April




The days are getting warmer; and it feels wonderful in the morning to be awakened to the sounds of birds singing outside.    We have spied several different types of birds coming to the feeders.  We have a flock of blue jays that regularly feed, several woodpeckers, pigeons and of course a lot of sparrows.  It is fun to watch the difference in the temperaments of so many of the different birds. The humming birds have found their nectar also; and regularly hum in to take a drink.     Anna, Zak and I will often take time before we start our school day to sit on the porch and watch the birds coming and going.



My husband brought me home a new bird feeder the other night.  I had wanted to place one in the back yard so I could watch the birds from the kitchen table.  It has been fun to watch the birds find the new feeder and we have even seen some new ones coming and going.  I about gave the entire family a heart attack the other night when we were eating dinner as a family – and I spotted a beautiful yellow bird sitting at the feeder.  I was so excited.  The whole family got a good laugh at my excitement when they were able to catch their breath from being so surprised by my outburst.  I love watching birds!






The tomato garden has been planted.  I had been told by my teenage son the hand tilling the garden would be a job that would be too hard for me.  ( I took his statement as a challenge and set out the other morning to prove him wrong.)  It was difficult; but not really too bad.  I had the small plot hand dug and tilled in about two hours time.  It was so much easier to do it this year.  Last year Rob had done the tilling.  He had worked so hard out there for an entire evening one night.  The next night he had awoken and we had found the tumor on his thyroid. (There had been no garden last year).    While I was out there digging, I was thanking the Lord for all of Rob’s work last year – because it had made the job this year so much easier.  I was also meditating on how good God has been to us.  We have seen Him do some miraculous things in our lives.  I just kept digging and thanking the Lord that He had allowed us to still be together as a family.  God is good – and the tomatoes are in.




The Amish neighbors have visited a few times and we have been able to talk with them a bit more.  I have sold some of the eggs to them; and it seems they are interested in making that a regular transaction.  I still cannot believe that our nearest neighbors are Amish.  I love hearing the horse and buggy go past the house.  They have been working with their horse to get her familiar with the roads here.  Thor always puts up quite a racket when they go by and I am always so fearful that he will cause a catastrophe with the wagon; but they tell me to please let him be – as they are using him to help train their horse for how to respond when dogs bark as they go by.  It must have worked; because this morning they took the horse out further and when they returned - there was a line of four different dogs barking and following their wagon.  It looked so funny!  I enjoy so much living in the country!  





Zak has had a tough month with his meds; but we look like we are getting to a little more stable ground with that.  Several years ago, we had been warned that puberty can be a very difficult time for a child with brain injuries and issues.  This has proven to be very true.  We are taking it one step at a time.  His Tourettes symptoms seem to be much worse than we have seen before.  At this time, that seems to be the biggest issue and hardest for him to get used to.  We are so thankful for a wonderful doctor that works with us in regards to his care.  God has given wisdom and we are trusting that He will continue to do that in the future.  God has surely used Zak’s health issues to be an opportunity for us to depend upon God more; and for us to be able to teach Zak that He can run to God when he is having a difficult day.  We are so blessed to have Zak in our family.  

The bridge Zak built over a hole in the woods.  He rides his bike on it. 


Because of the setbacks we have had with Zak we have had to revamp some of his school.  We took several steps back (it seems); but we seem to be making strides getting the things that it appeared we had lost back again.  Rob and I started praying about how to work with him with his school.  We decided to do school with Zak and Anna  together.  This way, he is hearing what Anna is doing - and getting the review through that.  He is also challenged with having her close by; not so much competing against her; but in having someone to do his flashcards and his phonics reviews with him.  It has been good for Anna; because she is hearing things for the next grade up while Zak reviews his things too.  Overall, this has been very successful.  Because of the setbacks; and also with Zak's brain issues we have decided to continue to do school through the summer - albeit on a smaller scale than a full school day.  Both Anna and Zak are excited that we do not have to stop doing school for the summer.  Go figure. 



Anna asked me the other day to tell her more stories from the Bible that talk about obedience.  She said as seriously as she could, “I need you to keep telling me those stories, Mom.  I’m just having trouble getting obedience down.”    I laughed.  We also have been reading from the Little House series.  One evening Anna and I sat by the camp fire and read about Laura and Mary and their house on the prairie.  It was fun reading by the fire and watching the sun set and the moon come out over the trees.   Anna has also enjoyed having James read to her in the evenings.  Rob required James to read to his sister each evening as a part of his speech requirements.  It was fun to watch them enjoy an old book of Rob’s from when he was a boy.  It seems that our Anna is quite captivated with the “Three Investigators.”  







Abbey ran another 5K this month.  She had her best time yet; and was able to run with her friend.  Sarah surprised her and signed up for the race.  It was fun to watch the two of them run together. Abbey finished first place in her division and Sarah finished second!  They had a fun morning.  It still shocks me that Abbey loves to run; but indeed she does.  As soon as she gets home from work, she comes in and gets ready for her run.  Thor loves it when he sees her get her shoes on and pleads with her to hurry up so he can go with her.  It is fun to watch.




Rachel has had her violin out more; and I have been thrilled to hear the music filling the house.  She seldom has time to practice and play; however, she is planning on taking lessons while she is in college.  She figured she better find the time to practice and get brushed up on her playing.  She also has been teaching Anna violin.  The other night, she and Anna took their lessons outside on the front porch.  It was fun to listen to them play.  


James has been busy working at different farms in the area.  His calf is doing well; and he has not had really any issues with it like we did the last calf he had.  Every evening he goes up to do his farm chores.  The other night Abbey took him up to the farm.  They were late in getting home for dinner; and when they finally arrived James walked in carrying a bag of glass.  I will let the following pictures tell the rest of the story - or at least how the story was told to Rob.  Life has a way of teaching valuable lessons; and it seems there is never a dull moment with teenagers in the house. 






We enjoyed a family fun day.  We had planned on going bowling; but we were not able to go.  The kids enjoyed playing some of the video games there and we had a fun lunch at a nearby hamburger restaurant.  It was fun to be together as a family.  We are realizing that these days are coming to an end when we will have all the kids here to do stuff all together as a family.  It is exciting as we watch the older kids’ lives open up and branch out; but we are planning on taking just a few more opportunities than we normally do to enjoy some family outings before Rachel leaves for college this fall.  We have several things on the calendar for this summer. 



Our church hosted a ladies tea this month.  It was fun finally being able to go to the ladies tea.  Each year something has come up last minute that has prevented me from being able to attend.  This year – I was there!  It was a fun morning and Anna and I enjoyed being able to sit together.  I was extremely blessed by the devotional that was given and have meditated upon the goodness of God to me.  Truly I am loved and cherished by my Heavenly Father.  He has been so good to me.   



We are looking for a very busy month of May as our calendar is very full.  God has been so good to us.  We are looking for Him to provide for some very important things that we need; and find ourselves excited to see how He does it. 

 Thanks for stopping by – I am so glad you did.

Blessings,
~Martie

The 12 Lessons I Have Learned from Autism



From the day we got married we had talked about wanting to adopt.  The time had finally come we had received our license as foster parents.    We were so excited when we got the call that they had a little boy to place into our home.  He was placed in our home as a foster child with the hope that we would be able to adopt him eventually.




Zak had only been in our home for a few days when it became obvious that there were some serious issues- a lot of serious issues.   We also were in madly in love with this little guy.  His laugh was contagious; and his eyelashes were the most beautiful eyelashes I had ever seen.  The day to day life became hard; the nights were terribly long and filled with many tears (his and mine).    



 We picked up Zak from the receiving home and drove right to our pediatrician’s office.  I had no idea on the day we brought him home just how much of my days would be filled with doctor’s visits and specialist evaluations.  There were countless sleepless nights and we found out that babies can cry for an entire night; minute after minute – hour after hour!  Then there was the day time hours filled with rocking on the couch.  The repetitive noises replaced the music in our house and Zak’s days were spent  lining up one matchbox car after another.  Family meal times were filled with texture issues and more odd noises.   Evening bath-time (that used to be a happy time of bubbles and playing before Zak came) turned into a full - fledged screaming session that made me wonder what in the world the neighbors would think if they heard him – and they HAD to have been able to hear him.  It was horrible.    




Then, we got the diagnosis.  It was the first of many - AUTISM.  When I left the neurologist office I was speechless at what he had said.  He had given me the diagnosis; and then informed me that children like Zak are a lot of work.  A LOT!  He recommended that we give him back to the state.  He reasoned that he was ONLY a foster care child – and not ours.  (Did I mention before that we had fallen in love with this little guy?)  Sending him back was out of the question.  (Well, in full dis-closer here – there have been times when I questioned if someone else could do a better job.)


That was eleven years ago.  God brought Zak into our home; and with Zak came autism.  God has used autism to teach me so many things! As a Christian, I know that nothing happens in my life by mistake; and God's grace is always available to me in every situation I encounter in life.    Because I know that God is sovereign I KNOW that autism is part of God’s plan for my life.  (If you could only know how long it took for me to be able to write that last sentence).  I know that this is exactly what God has for us; and I have learned so much!    




What I have learned from Autism

1.  Sleep and autism don’t exist together

It is beyond me how Zak can have the amount of energy he has with the little amount of sleep he gets.  It boggles my mind at just how much that child does NOT sleep.  When he was younger, he would spend his nighttime hours playing cars in the early hours of the morning; but the moment the sun was up Zak hit the ground with his feet running.  (Which leads me to the next thing autism showed me…)



2.  I have an amazing husband

When our older kids were little Rob could sleep through crying as if he had ear plugs in his ears. He just did not hear our babies when they cried.  That was “pre-Zak” days.  Somehow, something happened when we got Zak – Rob heard every move he made.  It was like they were connected together.  Zak and Rob have a special bond.  Rob often slept on the couch because of Zak.  Zak would wander thru the house at night; and there was such a fear that he might try to get out the front door without us hearing him.  Rob would take to the couch to help insure that he would hear Zak if he got up and tried to get out of the house.     There were many mornings I would come down to the living room to find the two of them snuggled on the couch together. 



3.  The human body is one of God’s greatest masterpieces

Once we got the diagnosis of autism, I decided to learn all I could about the human brain. I wanted to understand how it all worked, and how Zak’s brain functioned in particular.   I learned more about the brain the first year after Zak’s autism diagnosis than I had ever learned in biology in high school!  As I studied the brain – I was amazed at the body that God had given us.  Even Zak’s brain – with all the issues - is an amazing creation of a powerful God.  God’s design of the human body is breathtaking.



4.  I am never alone

I have met a lot of people I would have never even known had it not been for autism.  Some of them have children who, like Zak, have autism.  Some have been therapist or doctors that have been a huge blessing to me as we work with Zak and his challenges.  Others have just been friends that have come along side of me when I felt overwhelmed with all the challenges.  Some have cried with me – or listened to me cry. Having a child with autism is not easy; but I am so thankful for the wonderful people who have helped me as we navigate through this journey. Autism has shown me that God never makes us go at it alone – He always brings us someone to walk with us.  Some days, it is a neighbor or a friend – and He is always with me; leading and guiding and encouraging me. I am never alone.




5.  Love is better than criticism

 In the past eleven years, I have had to walk out of church, stay home from church, and even leave a restaurant because of autism. I have seen critical eyes meet mine in disdain as they watch something they do not understand.   I have learned after many looks and even rude comments (and I have cringed when I think about how I was one of those people before Zak came) that a critical spirit towards others never helps the situation. Love helps far more than criticism.



6.  Parent the heart

There are times Zak does some really odd things.  There are even times when it appears that Zak is wrong – but because of his issues I realize that his actions were not intentional.  There is a fine line that has to be walked on here.  I cannot ignore the wrong behavior; but I cannot deal with him in the same way if he did not realize what he was doing was wrong.  Autism has taught me that I need to be ever mindful of the motives behind his actions.





7.   Have an open mind

Autism has shown me that I would do good to adhere to the old-timers advice:  “Never say never”.  Medication was something that I said I would never do; and it is now part of our lives. We also would have never thought we would send our children to public school; but Zak thrived in special education program at the school in our little Wisconsin town.  He had some of the most amazing teachers!  Coloring and drawing keeps Zak’s hands busy during church; but before we had Zak I would have never thought of allowing my kids to draw in church.   Time – outs (a parenting technique I despised) is very effective in taking Zak away from a volatile situation.  Autism has opened my mind to parenting in different ways than I ever thought I would.    



8.  I need God

There have been days that I have not been sure I could get through the entire day.  There have been moments of deep desperation.  Every single time God has been there.  I have found in Him all the strength I need for the task.  He has shown that He will give the strength to get through each day.  Autism has taught me how desperately I need God.  It has brought me to a point of complete weakness; and in that weakness I have found Him to be all I needed! 



9.   Selfishness needs to go

Several months after we got the diagnosis of autism with Zak I decided that what I needed to do was to pray and fast that God would heal Zak’s brain.  He could you know.   God could heal Zak of autism.   I began praying fervently; but then God started to show me the motive behind my prayers was not pure.  In my prayer time God started to show me that I wanted Zak to be healed of autism because I wanted my life to be easier.   It has been said, “Any situation that calls me to confront my selfishness has enormous spiritual value.”(Gary Thomas)   Autism has shown me that by nature I am a very selfish person! I cannot be the parent my son needs when I am selfish.  How I have begged God to give me His love and remove selfishness!





10. I can trust God
  
Autism creates so many unknowns.  God knows the future; I can trust that He loves Zak even more than I love Zak.  We take it step by step / day by day.  Some days the future looks pretty bleak – other times I am hopeful. I don’t have to worry about the future.  I just trust God for today.



11.  God has a plan for Zak

 Autism has made God real to Zak.  There are many times I have found Zak on his knees in his bedroom praying and asking God to help him because he is having a difficult day.  That is how Zak lives his life - depending upon a God who loves him. God loves Zak and has a purpose for his life



12. God is Powerful

The most powerful lesson I have learned from autism is that God is more powerful than any handicap and challenge we encounter in our lives.  As a Christian, I can trust my powerful God. There is nothing too hard for Him; and He seeks to lead me every step of the way.  It has showed me that I am handicapped too – but I have a God who delights to deliver and offers grace for every situation. God can make me into the parent that my son needs - as I surrender to Him.  God can help Zak as he goes through his days and navigates through life.  God is always there. 



Today is Autsim Awareness Day.  If you are a parent of a child with autism - God is there for you.  If you do not have a relationship with Him - I would love to tell you how you can know Him in a personal way.  I cannot imagine walking this road alone!  God has been the source of my strength on even the darkest days.  Please send me an email if you would like to know more about Him - and His desire to have a relationship with you! 

Thanks for stopping by.  I am so glad you did.
Blessings,
~Martie