Tuesday, August 12, 2014

A New Journey for our Family

This is my third time to try to write about this.  I struggle to know what to write and how to write it because I struggle with how to feel about it.  I'm sure some of you have read my previous blogs about some of the struggles we have been having with one of our children.  Well, that child is Zeke and we think his struggles are because of Tourette's Syndrome.

Over the last little while we have watched as Tourette's has made it's way into Zeke's life and our family.  At first the tics weren't really noticeable so we decided not to tell him or the other kids.  We just let the adults in his life know what was going on.  This summer things have changed.  Tourette's is manifesting itself differently and the tics, along with ADHD, have become such that he has noticed, the other kids in the family have noticed and so have others outside the family.

We talked to the other kids about it and requested of them patience as we learned and started this journey.  We talked to Zeke about it.  I'm not sure how he feels or what he thinks.  I don't think he quite understands things yet.  We have talked to friends who interact with us right now.  We have talked to his teacher, the school counselor and the principal.  We have talked to his church teachers.  At this point, we feel that the more people know about it, the better it will be for Zeke.

To be honest, I struggle with it.  I know it is not a life threatening thing he is dealing with, yet it can be life altering.  I know he will be successful and have a life filled with joy and goodness.  Yet, I know he will have struggles he will have to overcome (we all do, I know) because of this.  Struggles that the rest of us won't have to face.  I keep thinking that I will wake up in the morning and things will be back to how they used to be and it will all have been a dream.  But it doesn't happen. 

I struggle because I can't take it away, I can't fix it and I can't protect him from it.  I struggle because I don't understand it completely and how it works and why it does what it does. 

I struggle because I am his mother and I love him.  But, because I love him, I am going to have to learn to deal with it and all that it brings in a positive way.  I am going to have to let him know that it is okay and that it doesn't matter what people say or do - he is okay.  My reactions will teach him how to react so I am going to have to step up, let it roll off my back and be okay with it so that he can do the same.

We are still learning and progressing on this journey.  We are still observing and documenting.  We will do it for a few more weeks and then we will take him to a specialist for official diagnosis.  Maybe the specialist will point us in a different direction.  If that happens then we will reset and start from there.  In the meantime we are doing our best to take things one day at a time and help people understand what we believe Zeke to be experiencing.

If you would like to know more about Tourette's Syndrome you can google it or go to tsa-usa.org.  That is the webpage for the National Tourette's Syndrome Association.  Right now Zeke has physical and vocal tics.  He blinks and darts his eyes, and does head and mouth movements.  His vocal tics vary from animal noises to nonsense noises.  Sometimes they are quiet so only the person next to him hears it, sometimes they are louder so most everyone can hear them.  We also believe that he has ADHD which adds to the Tourette's.  It is hard to differentiate between the tics and the ADHD behavior.  It is a struggle for him to learn what he can control and what he can't.  There have been times where I have asked him if the noises he was making were ones he could stop and he would say yes.  I would ask him to stop but he would not be able to or he could for a minute and then he was making them again.  Other times he was able to stop them.  It is a learning experience for all of us.

One thing that I hold tight to during the rough days is the knowledge that I have of the Savior.  He came to this earth, He died for us and He rose again.  He lives so that we might live again too.  When this earth life is over, we will live again and all these shortcomings and limitations and illnesses and disabilities will be gone and they will plague us no more.  We will be made whole through Him.  When Zeke sits in my lap struggling with his tics, my heart aching for him, I have that to hold on to. 

This is all temporary.  My dad having gone through this life not able to walk because of polio will walk.  My grandpa who passed away with cancer will be cancer free.  My sister who died from a liver defect will be healthy and well.  Zeke will be tic free.  All of us will be free from the things that ail us. 

In the meantime, we will do the best that we can.  We will take things one day at a time.  We will get up each time we fall.  We will have bad days and we will have amazing days.  So to my sweet little Zeke, be strong - I will be your strength when you feel weak.  Keep your chin up - I will help you hold it up when you can't do it yourself.  Remember who you are - a son of God.  Look to your family and your friends - they will always be there for you no matter what.  And always know that I will love you.

4 comments:

Melyssa said...

Oh, Emma. I completely understand your worries and concerns. You have such a great perspective though and you will be a wonderful support to Zeke. Love you, sweet friend.

Emma said...

Thank you Melyssa :)

Spemberly Cantrell said...

What a hard thing for you all to go through. We will keep you all in our prayers and hope that you have peace and answers.

Emma said...

Thank you Kimberly. We will need it!