Friday, October 25, 2013

Recharged


It feels like a year since I last opened my blogger account...to write.   However, on Wednesday, October 30th it will be only THREE months!

When you do something....anything....every single day it just becomes a routine.  The norm.   And sometimes you have to take a step back to see what others see.  To see your life and every thing around you from a different perspective.  For one day or ten days or months....do not do the norm.

A break.  A hiatus.  A holiday.  A vacation.  Whatever you call it....take it.

That is exactly what I did.  What I needed to do.

Challenging myself to blog for 365 days...in a row...about my daughter with special needs was not easy.  Finding the gift she gives to me daily...was challenging.  Some days it was blatantly obvious, while others I was still searching well into the night.

Blogging about my true feelings and opening up to friends, family and complete strangers was hard for me.  However, I knew keeping everything bottled up inside would only make me feel worse.  I knew getting it out would not only help others who try to understand our world get a better picture...a better understanding, I knew there was probably another parent out there who was struggling with the same feelings I had and I hoped my words gave them strength and encouragement.  For everyone I hope my gifts from my nonverbal daughter, was a chance for everyone to reflect on their own gifts...in their own families.

Since I  have completed my challenge...to myself, I have made many changes in my own life.  For the better.  I have truly seen what is important and what matters.  I feel energized and ready for the next challenge.  Right now, I do not know what that is, but I am sure it is not too far away.

My blog, 365 Days of Gifts from My Nonverbal Daughter has come to an end.  However, the gifts do not.  The gifts my daughter has given to me....to you....will continue to give every time someone reads them.

Thank you for sharing the past year with me and I hope you will continue to follow our everyday journey over on my other blog which took a holiday when 365 started.  Here is the link http://www.our-everyday.com

Cheers!
Emilie and Anna Cate.....my amazing daughter who keeps on giving....every.single.day!





© copyright 2012 – All rights reserved
365 Days Gift

Tuesday, July 30, 2013

Patience

Today's gift is patience.

I have wanted to write a post about the gift of patience for a while;  however one day it came to me that this gift would be best as the last gift.

Why?  Because the gift of patience is one I work on...every...single...day.

My daughter is one of the most patient people I know.  She waits for so much and after she waits she probably is hoping and praying we know what she really wants!

Being patient is hard....probably one of the hardest things to learn and to practice.

I have learned from her that everything takes time and you have to be patient.  As much as I would love for things to happen overnight, they do not.  I have to take a deep breath and trust, if it was meant to be, it will happen.  If it doesn't happen then it wasn't meant to be or the timing wasn't right.   It has taken me a long time to try and practice living this way....and I still work on it...daily.  Some days I am better at it than others.  But just when I need a reminder, my daughter will show me a sign that I need to be patient.

My patience is tested daily.  All three of my children test my patience and some know how to push me over the edge more than the others.  However, of all my children, it is my nonverbal daughter who truly understands what patience is.  Can you imagine waiting for someone to unlock the magic gene so you can talk?  So you can use your own two hands...functionally?  So you can walk around without having someone be within arms reach?  So you can have privacy?  So you can live the life you deserve?  And while she waits so patiently....for just about everything, she does it with a great attitude.

I honestly do not know how she does it.  I honestly do not know if I could do it.  She simply amazes me.  And at the same time it kills me to have to watch her wait....patiently, when of all people she should be demanding!

Watching my daughter deal with her struggles associated with Rett Syndrome, old and new, is truly inspiring.  Over the last 365 days I feel like I have connected with her on a whole different level.  I have so many emotions going through my head as this chapter...this challenge....this blog comes to an end.

I am rejuvenated as I have learned so much more than I ever thought possible.
I am ecstatic I actually stuck to my promise to myself and blogged about a daily gift from my nonverbal daughter for one whole year.
I am relaxed as I have learned from my daughter how to find my inner "calm" and to not worry, but to let God worry for me.
I am inspired as there is no better teacher than someone who doesn't take anything for granted...no better teacher than one who teaches through actions and few words.
I am proud...proud of my daughter for all she has accomplished, all she has learned and all she has overcome and most importantly for who she is.
I am a little sad as I have truly enjoyed writing about her daily gifts, learning from them and sharing them with others...sharing them with you.
Finding the true gifts amongst the grey has helped me deal with all the pain over the years.

I will be honest, there is still a little piece of pain which will always live inside my heart for my daughter.  I do not think it will go away until there is a cure for her.  Until that day....I will have to live just like my teacher has taught me....patiently.






Here is one quote and one poem to end my year of gifts.....

Living with silence teaches a great deal.  When you cannot speak, you learn to share more from the heart.  Instead of giving words, you give love- Author Unknown

A Special Child
You weren't like other children.
And God was well aware, 
You'd need a caring family,
...with love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we've been chosen,
To help you learn and grow, 
The joy that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
BUT most of all "REAL LOVE".
By Sharon Harris


Monday, July 29, 2013

Keep Calm and Carry On

Today's gift is keep calm and carry on.

Remember in one of my posts from last week I mentioned in due time I would fill you in on how the Rett Monster has affected my daughter...again. Well, here it is.

The day we left for our trip to Texas....the first night on the road....my daughter started having seizures. We were in complete shock and somewhat in denial.

We were full of questions and full of fear.

When we travel we always get two hotel rooms....makes sleeping much more enjoyable....and a way we can actually sleep!  The first night on the road my husband shared a room with my daughter and I stayed with our other two children.  He was the only one to witness my daughter having seizures that night.  He was nervous, scared and obviously wasn't expecting it!

It was four days later when we witnessed another series of seizures.  It was at this point we knew the Rett Monster was rearing its ugly head...one...more...time.

The last one on our trip was on July 5th at 1:26am ( yes, I remembered every single one ).  I couldn't sleep anymore as I was so upset for my daughter.  I really have not witnessed someone having a seizure before and it was scary. Watching your daughter shake uncontrollably is one of the worst things....ever.

I couldn't believe she had to start dealing with another aspect of Rett.  I couldn't believe it!  I emailed two of her doctors to ask for help and advice since we were traveling and away from home.   After I sent the emails, I just laid next to her....holding her hand and looking at her.

Just like I made a promise to her the day she was diagnosed with Rett, I made the same promise....I would never give up on her.   I believe in her and always will.

At this moment I told myself, this is just a bump in the road.   The best thing to do is to keep calm. Whatever happens is going to happen regardless of any "extra" worrying I do or do not do.  I also thought how my daughter could be affected in so many other ways by the Rett Monster or other medical conditions....and is not. While we are upset of her new issue, we still have so much to be thankful for.

Today she had an EEG performed so we can get a better picture of what is going on with her seizure activity.  After another "happy" day for my daughter I couldn't believe we had to go in and have this test done.   It doesn't hurt, but it takes time to place every electrode...28 to be exact...on her head, while keeping her still!  And then making sure she doesn't rip them off while entertaining her for the actual test.

The technician was one of the best we have had...ever!  Before he did anything to my daughter he explained it to her by showing her exactly what he was going to do....on her hand!  This right here is huge all by itself!  He just assumed she understood everything you say without us having to tell him!

To say my daughter rocked the EEG is an understatement!  She was awesome!  Through it all....she still had a smile!



This picture says it all...keep calm and carry on!  My daughter does this so well.  Whatever life hands her, she learns to overcome it.  She hardly let's something get her down.  Instead she hits it head on and keeps moving forward.  She knows it isn't easy, but she knows it is worth it!

I have learned to keep calm and carry on from my daughter.   It wasn't until this new issue was introduced into our lives that I truly saw myself take her motto and use it.

I had a really good cry when it first was apparent we were indeed dealing with seizures.  I then took a deep breath and decided I needed to carry on, carry on for my daughter.  I pray every night and leave all my worries with God.  By allowing him to worry for me, I am able to keep calm.

And I have to say, I should have listened to my daughter a long time ago....this way is much better!  I honestly feel like a different person.  This is just another storm we must ride out....but together we will carry on.


Here are three quotes for today....

I will not cause pain without allowing something new to be born- Isaiah 66:9

When God pushes you to the edge of difficulty trust him fully because two things can happen; either he'll catch you when you fall or he will teach you how to fly- Author Unknown

You never know you STRONG you are until being STRONG is the only choice you have- Author Unknown



P.S.  As I was writing this tonight, I went in to wake up my husband who had fallen asleep putting my daughter to bed and this is what I found....I am not the only one who loves to hold her hand!



Sunday, July 28, 2013

Happy Happy Happy

Today's gift is happy happy happy!

My daughter had a overall happy day today.  Whether you consider Sunday a day to wind down the weekend or to start the week....our day was a great one.  A happy one!

She started the day by sleeping in....she is her mother's daughter!  Then we went to church.  My daughter truly loves going to church.  Just like there is something about being by the water that calms her, she is equally as calm in church as well.  She loves the music, she loves listening, she loves people watching, she loves it all.  I love seeing her like this!

After church we took the kids out to lunch and then we came home to relax and get ready for the busy week ahead.  Camp Amica (the camp I run out of the home for my daughter and her typical peers) starts this week!!!  When we talk about it she lights up...she loves being around her friends!

Then we enjoyed a delicious dinner at our friend's house with two families.  Two families who "get" our family and are beyond supportive of us.  We love being around these friends as they understand our family and will do anything to make our daughter feel comfortable.  I remember the days we would do all of the entertaining because it was easier for us and easier for our daughter.  Now because of the amazing friends we have we can take our daughter to their homes and she feels right at home.

Today was one of those days where you look back on it and say...wow...it was a great day.  From the moment my daughter woke up to the moment she went to bed, she was happy.  Days like today make me happy.  Days like today I wish we could have all the time.  Days like today are the ones you will remember most.

Days like today you hope is an indication your week is off to a great start!

Here is quote for today....

I can only think of one thing greater than being happy, and that is to help another be happy too-  Jim Thomson



© copyright 2012 – All rights reserved
365 Days Gift

Saturday, July 27, 2013

Impromptu Drive

Today's gift is an impromptu drive.

My daughter loves to ride in the car.  If we could drive anywhere it would make traveling much easier for us!

Since she enjoys riding in the car so much it actually makes impromptu drives easier.  However, there is still the land of the "unknown" once we arrive.  We could live a life of "what-ifs" and not do anything....but we don't.  We go, we do and we take it minute by minute.

This morning my husband and I tried paddle boarding together for the first time.  It was so much fun and I highly recommend it!  We spent 2 hours on the river this morning and it was the perfect way to start off the day.  The water was calm, you could hear nature and it was incredibly peaceful.  I guess being on the water this morning made us want to see water this afternoon....with the kids.

After lunch we put in the kids in the car and drove to the river....or the rivah.  My daughter loves being by any type of water....pool, lake, river, ocean...you name it....she loves it!   I honestly find she is more relaxed near water.

After driving around we stopped for an ice cream treat.  My daughter chose mint chocolate chip for herself and enjoyed every last bite.  Ice cream treats are the best wherever you go!

i scream, you scream, we all scream for ice cream!


"Impromptu" drives, get togethers, events, etc.....are the best.  I truly love them.  Typically there is no stress involved and you just go with the flow.  We are so blessed we are able to enjoy impromptu "things" as I remember the day we could not.....and it wasn't fun.

Having fun without the planning involved is the best and also is a nice surprise for everyone.  And of course when there is water involved it is a double bonus.  No matter spring, summer, fall or winter being by the water instantly soothes the soul.

Here is a quote for today.....

When you do things from your soul, you feel a river moving in you, a joy- Rumi



© copyright 2012 – All rights reserved
365 Days Gift

Friday, July 26, 2013

Her Pointer Finger

Today's gift is her pointer finger.

Another beautiful day here equals more porch time.  I can't believe the amazing breeze we are having in July!

My daughter loves sitting on our back porch.  I honestly think she would sleep out here if I let her....who knows maybe I will let her sometime.

When she is outside she loves to either take in nature by relaxing and taking in all the sounds.  Or she likes to play on her iPad.

As she is on her iPad I am just amazed at the use of her pointer finger.  She is extremely blessed to have incredible finger isolation.  If she didn't have the finger isolation that she does, then when she touched her iPad with her whole hand and no finger isolation the same button would be pressed over and over again OR nothing would happen. When touching anything "i" related you need to be rather precise in where and how you touch the button.

If she pressed a button but didn't receive the output she was expecting it would be extremely frustrating for her resulting in her not staying engaged or interested in the iPad anymore.

Lucky for her....lucky for us.....this is not the case.

Can you imagine not being able to use your hands the way you want to?   Can you imagine only having one strong finger to help you be able to actually do things....on your own?  I am so thankful my daughter has this strong pointer finger to help her be able to make choices, initiate requests by pointing, have fun, and to be able to help her not wring her hands by having that one finger busy.

I am sure there is another finger my daughter would like to show to the Rett Monster...but she hasn't....yet.

Something so little to most, yet something huge for another.  Something truly life changing.





Here is a quote for one day....

A dream is a wish your heart makes- Author Unknown


Thursday, July 25, 2013

Talking TO Her IPad

Today's gift is talking to her iPad.

Yes, you read that correctly.  My daughter was talking TO her iPad today!

Probably one of my favorite features on any ACC (augmentative communication device) device is the voice output.  Whenever you hit a button, the button pressed is spoken back to you.  The button acts as your voice.

I honestly feel my daughter loves this part too!  It talks for her.

Along with the iPODD (which she is still learning) she also still loves her iPad.  She uses it more for watching movies, listening to music and playing games than speaking....but she does still visit her communication software on it to talk fairly often too.

Sometimes when you hit a button there is a little delay in the voice output.  Especially when you are trying to get the device to speak the word accurately for you....like when you have made changes or added a button.

This afternoon my daughter and I were sitting on the back porch.  It was GORGEOUS outside and we were taking in the incredible weather like it was candy!  She was listening to music on her iPad and then she was "talking" with her software.

She was on the page with all her school teachers and she was hitting their buttons.    These buttons are some of the buttons where the voice output is on a little delay.  As she was pushing the button, it would say "Mrs".....and then there would be a brief pause before it would say the last name of the teacher.  She kept hitting the same two teachers  over and over again....and they both happen to be her speech therapists at school.  One she calls by her last name "B" and the other one she calls by her first name "T".

So this is what happened....my daughter would hit one of their buttons....the voice output would say "Mrs" and in the delay portion she would say "B" or "T" for which ever one it was....and then you would hear the iPad say their last name!  She did this over and over again.  It was so cute!  There are not many times when I have seen her TALK TO her iPad like this before....if ever!




I think she misses seeing them and she was letting me know it.  We are very blessed to have B and T on her school team....they truly believe in my daughter....and she knows this!

Here is a quote for today....

You are never too old to set another goal or dream a new dream-  C.S. Lewis



© copyright 2012 – All rights reserved
365 Days Gift