Friday, August 29, 2014

The Next Step

Today I took the next step in our journey.  To be honest, it was kind of hard.  I don't know why, it just was.  I made some phone calls and found a doctor that has had experience with kids and Tourette's Syndrome.  He is at the Mayo Clinic in Rochester.  He has requested that I write up a summary of our observations of Zeke and fax it to him.  He will read through it, determine what all he wants to do with Zeke and then set an appointment with us.  The first appointment will be an evaluation that will last about 2 hours.  I don't know right now what will happen after that.  I will spend the weekend trying to get that put together so I can fax it to him Tuesday and we can keep the ball rolling.

School has gone ok for Zeke.  He was very concerned the night before he went to school.  He was afraid if the kids at school found out he had Tourette's then they would not want to be his friend.  We told him that they would like him no matter what.  He has had several incidents when he was making noises or movements that he couldn't stop and kids had said something to him.  It made him feel bad but he got through it.  He also took it upon himself to tell some of the kids about Tourette's as best as he could and told them that he may have it.  Some of those kids have actually stood up and told other kids that he couldn't help what he was doing when they were giving him a bad time.  His evenings are kind of rough with lots of noises (although he usually keeps them quiet) and mouth movements.  He also gets very wound up in the evenings and has a hard time settling down.  He has a hard time sleeping a lot of nights so that gets to him sometimes too.

His teachers and the school counselor have done a wonderful job helping him, watching him, talking to him about his concerns and keeping me informed.  I am very grateful for all their help and support of him and of me.  I know he is in good, caring hands.  As I said before, if we are going to have to go through this, I am so glad that we are doing it here.  It really is the best place that Zeke could be right now. 

So for now, we wait for this next step to begin.  I hope and pray that the doctor will be able to help us understand Zeke and what he is experiencing and that we will be able to find a diagnosis for him and then move on from there.  Some days I think, oh, I was just making this up.  He's fine.  There is nothing going on with him.  It was just a weird day.  Then I listen to him quietly tic or see him sitting there with his mouth movements and reality comes back that I wasn't just imagining it.  It is hard because it is kind of an unknown thing. We don't know exactly what all his tics will be.  We don't know how severe or mild it will be.  We don't know exactly how it will affect him.  I don't understand it and I don't understand all that Zeke does right now.  I don't know what is a tic that he can't help, what may be just ADHD stuff or what is Zeke just being a funny little boy.  He doesn't really know either it seems. 

We take it one day at a time.  We are grateful for the calm, uneventful days and we work through the longer, frustrating days.  We are very grateful for all the prayers and thoughts that are sent our way.  Everything will be okay.

Saturday, August 23, 2014

First Day of School!

We all started school this week.  I started Monday with meetings and prep time.  The kids had their open house Monday night.  They were excited to get to go see their new classrooms and teachers.  Tuesday night Maddi and Makenna had their fall sports meeting.  Wednesday the kids had their first day of school!  Maddi and Makenna are both in jr. high this year. 

Maddi is in 8th grade.  She is running cross country again this fall.  I can't wait to watch her run again!
Makenna is in 7th grade.  She is going to play volleyball this fall.  Her first match is next week.  I am excited to go!
 
Zane is a 6th grader this year.  He is the top dog at the elementary school!  He is playing football this fall and is a percussionist in the band.


Dillon is in 5th grade.  He joined the band this year as a percussionist and he is also playing football.  He and Zane are on the same team.  They have their first game in a few weeks and they are very excited!
Zeke is in 3rd grade this year.  He decided he would give football a try this year like his older brothers.  He is on the 3rd/4th grade team.  He says it is hard but he likes it.
Princess Olivia is in 2nd grade.  She loves being back at school and being with her friends!  She loves to talk and socialize :)  She is going to do gymnastics this fall.  She is very excited!
I am the new elementary assistant.  I do a lot of everything and anything.  We have a lot of new kids this year at school so I will be helping the teachers in and out of the classroom, helping in the library and the office and doing a long term sub next month. 
 
It is crazy to think that another year has already started.  The kids are all growing so fast!  It is fun to watch them grow and change though.  I am very proud of them and who they are becoming.  I can't wait to see what this year brings for all of us!
 First day of school 2014
First day of school 2013


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.

Wednesday, August 6, 2014

My Thoughts

These are my thoughts as I lay in bed last night with the events of the day racing through my mind.  It may not make sense to most people or to anyone at all, but I guess that kind of describes how we are feeling right now as we search for answers of help... I don't always like to share my writing because I feel it opens me up too much.  I prefer people not to see my own weaknesses and things so deep in my heart.  It makes  me feel vulnerable and open to judgments that may not always be kind or needed.  But I also know that there are others out there who are also experiencing hardships and challenges and that maybe just knowing that they are not alone will help them on their journey.  So I will share...

 
My heart is torn and hurting.
Exhaustion is beginning to overpower
While patience desperately tries to stay on top.
Beside me you still struggle
Trying to stop but not being able.
Feeling shame because you cannot control.
Frustration is showing on your face.
I wish I could just take you and hold you.
I want to understand who you are.
And to help you understand too.
Your eyes show me the turmoil that's building inside
And the sadness when I ask you to do something you can't.
My requests to be quiet and settle down reflect my weakness not yours.
Please forgive me for my lacking and ignorance.
I know you are doing your best.
As we start on this journey together,
Know that I'll always be there.
Keep your hand in mine and together we will walk.
There may times when we stumble and fall,
When our hands may slip apart.
But you reach out and I will grab hold
And help you rise to your feet.
I will always love you no matter the day
And no matter where the path leads.
My hand will always be there to hold.
Our hearts always intertwined like our fingers are now.
As we move down this path together,
We will face it with hope and faith.
For we know that there is healing and wholeness
Promised to each of us.
Our Savior has come and suffered.
He has power to heal all that consumes us.
These struggles, though hard, are just for a moment.
And if we endure them well
We will one day find rest in His presence.
Healing and comfort wrapped in His arms.

Tuesday, August 5, 2014

Another Tough Day

I held hands with a sweet, troubled child for many hours today.  We all went shopping.  Michael was out of town, the kids still needed a few odds and ends for school so we headed out this afternoon and spent the rest of the day shopping and eating.  As the day progressed, the behaviors escalated.  The only escape was reading a book in the car on the way home.  I held his hand, hoping the physical touch would calm him.  Usually it helps but not today.  So I then held his hand just to keep him close and contained. 

Again, his eyes were different.  They weren't his happy, shining eyes.  He said he was trying to stop but couldn't.  He knew what he was doing but did not have the ability to stop it.  I could see in his eyes that what he was saying was true. 

By the time we were done getting all that we needed, I was exhausted.  I can't imagine how he must have felt.  I finally sat down with the other kids and told them that we were all going to need patience and love as we went on this journey.  I tried to give them as much of an explanation as I could so that they could be more understanding of the situation.  Now we will just have to move forward, search for answers and say a lot of prayers.

Saturday, August 2, 2014

Exciting Stuff!

 
The other day I got my very first, official letter from the school :)  I have been waiting to tell everyone about my exciting news because I wanted to make sure it was all official before I said anything.  I think it is official enough now that I can make the announcement that I have been hired to be the new elementary assistant at Deubrook!  I am so excited!  I have been subbing at Deubrook for 2 years now.  I have grown to love the staff and the students there.  The staff at Deubrook are some of the most amazing and caring people that I have ever met.  I got to sit in meetings with them last year before school started and I was deeply impressed.  As I sat there listening to all that they had done and all that they still had to do it really opened my eyes as to how much time and effort they put into our children.  They love our children, they love their jobs, they love each other, and they love the school.  They do such an amazing job and I am so excited to be able to join their team!  My kids are excited because now they won't have to ride the bus anymore.  I guess there are perks for all of us! 
 
Summer is winding down for all of us - less then three weeks away.  On August 18th I will start my new adventure.  I am a little nervous, but mostly excited!  The kids will start on the 20th.  They are also excited to be back with their friends and meet new classmates and teachers.  It is going to be a good year!