Being a great traveler

Today's gift is being a great traveler.

After last night's rain and wind storm (wow!) today's skies were beautiful making it a nice day to travel. Tomorrow my daughter is seeing a new doctor so we had to travel six hours by car today. My daughter, my husband, my dad and me hit the roads this morning, while my mom stayed home with my other two children. Since my parents are very involved in my daughter's care and are with her often, I like for one of them to be with us at her appointments. Nothing like an extra set of hands and ears!

My daughter loves to ride in the car! She would seriously ride all day if she could. I love the fact that she loves to ride in the car as much as she does as it makes traveling so much easier...for all of us. As long as she has her movies, music and some snacks she is all set!

She was perfect today in the car. She was quiet while her daddy was on a couple of work calls and she laughed out loud when we made two wrongs turns! She even took a little nap.

I wish we could drive to all the places we want to travel to with the kids, but unfortunately we can not. But until we travel to all the places in the United States and Canada....we have lots of places to still explore, I will not let it both me. As long as we are together having fun, the "where" doesn't make a difference.

We thank God for watching over us as we traveled today and pray we have an informative appointment tomorrow!



Here is a quote for today...

We wander for distraction, but we travel for fulfillment - Hilaire Belloc

Mommy Day

Today's gift is a mommy day.

I decided to keep my daughter home from school today for two reasons. One is school policy is fever free for 24 hours (she was close to the 24) and the second reason is we are getting ready to leave to take her to see a new doctor tomorrow and I wanted her to have an extra day to rest.

I know there are plenty of people who do not abide by the 24 hour rule for being sick, but I am one who sticks by this rule. Yes, I would love my child to go back to school so I can have my "free time" back, but I also don't want my child being too tired or risk getting someone else sick.

It stinks for my daughter as now she is going to miss a full week of school. But this doctor's appointment is pretty important.

But through all the sickness and being at Mimi and Poppy's house it was nice to have a day at home...with just her.

I love having lazy days! We started by cuddling in bed watching tv....then had breakfast, leisurely...talked....watched a movie....got dressed....packed for our upcoming trip...enjoyed lunch with her brother when he came home from school....and then started to get ready for our daily after school routines.

My favorite part of the day was the all the time we sat next to each other. We shared giggles and exchanged some words...and just looked at each other too. We laughed at the same parts in the movie/show we were watching.

I could tell by her expressions and laughs that she was very happy she was having a mommy day with me. The first big laugh of the morning was one as if she was saying..."I'm skipping school"! When I asked her if she thought it was funny she wasn't at school again, she laughed harder and pulled the covers over her head.

While I would have liked to have been on my routine today, especially since the next two days we will be gone for her doctor appointment, I loved having a day home with her....and one I know she loved too!

Here is a quote for today...

So many of my smiles begin with you - Author Unknown

Her Room

Today's gift is her room.

How many of you can't wait to crawl into your own bed after you have been gone from it...like being on vacation?   I know when I come back from being away from home one of the first things I think about it the good night's sleep I am going to have...in...my...own...bed.  My two youngest children always run straight to their rooms, as they have missed "their" space.

As you know from last night's post my daughter with Rett Syndrome is not feeling her best and was at my parents house.  She came home today....and it was so good to see her!!!  I really missed seeing her beautiful face, hearing all those "mommy's" and getting all my kisses.

Tonight when we went upstairs to start our bedtime routines (which usually start in our bedroom) and when we got into our master bathroom to get the kids toothbrushes, we noticed my daughter was not in the room.  I started calling her name as I walked down the hall.  I could hear her humming as I was approaching her room.

This is what I saw!

She was sitting on her bed looking at her books!!!  Her "humming" was her reading!!!

I think it is safe to say, just like my other two children miss their rooms, she missed her's too!

Here is a quote for tonight....

There is no place like home- Dorothy 

Mimi and Poppy Time...extended

Today's gift is Mimi and Poppy time...extended.

My daughter spent the weekend with her Mimi and Poppy this weekend. This allowed for me to have the one on one time with my other daughter at her girl scout overnight and for my husband to have one on one time with our son.

We are very lucky my parents ( aka Mimi and Poppy), offer to take the kids and can help with them to allow us to have a break from the daily challenges and constant care of having a child with special needs. You have no idea how rejuvenated you get from a break...your batteries get recharged and you are ready for another 10,000 miles!

We are equally as lucky that our daughter loves her one on one time with Mimi and Poppy. She loves being the center of attention when she is with them and they treat her like a princess!

Our daughter's visit with Mimi and Poppy has been filled with lots of extra cuddles as she got sick the first night there! I felt so bad for her...but I know she is in the second best hands (after ours of course!). I also know how good they will care for her when she doesn't feel well, not only because I see the care when she is well, but I remember the care I got when I was little and sick (and when I get sick today....they still take care of me and the kids).

Even though I wasn't able to be with her while she was sick, I still talked to her and thanks to FaceTime was able to see her! I think this made her feel better too!

Mimi and Poppy are so caring they offered to keep her one more night as she still had a fever this afternoon. One more day and night to give her some quiet, one on one time to get better. It probably was the best decision seeing as I came home with a very tired 8 year old who became crabbier as the day got later. I think my mom knew (as mother's always do) that this was going to be one of those nights.

Thanks to an extended time at Mimi and Poppy's, I am also able to get some extra sleep I lost from the overnight with the girl scouts and be extra rejuvenated for my daughter tomorrow. While I miss her to pieces, I know she is receiving lots of love!

Here is a quote for today....

The only thing better than having you for my parents, is my children having you for grandparents- Author Unknown

 

The Little Things #6

Today's gift is the little things #6.

Later this afternoon I am going with my middle daughter, part of her brownie troop and probably a good number of other girl scouts to an indoor water park for the day.

While most of the other parents are looking forward to spending time with their daughters, I think the experience with my daughter is what I am looking forward to the most ( of course with the experience comes spending time together too!).

Due to the fact my oldest daughter has Rett Syndrome, everything we do is a different experience from most. While yes, I can take my daughter to the same water park her sister is going to, the experience would be different.

My middle daughter has been wired all morning about today. She has been looking at the website planning every second of her visit. This is something my daughter with special needs can not do.

My middle daughter will be able to run around the water park with her friends riding one ride after the other....with no help from anyone else. This is something my daughter with special needs can not do.

My middle daughter will be able to not have me right by her side every second of our visit to the park. This is something my daughter with special needs can not do.

My middle daughter will be able to sit with her friends at their own table for meals, order for herself and feed herself...with no assistance from me. This is something my daughter with special needs can not do.

My middle daughter will be able to take a shower and get dressed on her own. This is something my daughter with special needs can not do.

My middle daughter will be able to put herself to bed, on her own, when she is given the go ahead it's time for bed. This is something my daughter with special needs can not do.

You see the whole experience is something I am really looking forward to as it isn't something I or our family experience all the time. My daughter with special needs makes me appreciate little things like these experiences. I only wish and pray daily my daughter with Rett Syndrome can enjoy "typical" experiences like her "typical" peers one day...with no modifications or special circumstances. I pray one day she can run and play with her peers and instead of being by her side, I can be watching her from a distance having the time of her life.

Here is a quote for today..

Never get tired of doing little things for others. For sometimes those little things occupy the biggest part of their heart - Ida Azhair

 

Recognition

Today's gift is recognition.

Have you ever thought what it might be like to be in pain or not feel well, but you could not communicate this to anyone....verbally?  I haven't imagined this myself..until I had a daughter who is nonverbal.

I have had a history of stomach pains which rears its ugly head sporadically and when it does I often think about my daughter and what if she was having horrific pains like these one night.  I would never  truly know and we would think she was upset and having a behavior.  When I get these "stomach pains" I act out in a behavior....as the pain is unbearable....worse than contractions!

The difference is, when I am in pain I can verbally explain what hurts and you can help me if help is needed.  When she is in pain...we have no idea or need to play the guessing game.

As you may know from previous posts, I am in the middle (to near end) of my training for the Disney Princess Half Marathon and I have to be honest my head is not in the game like it was last year.  I do not know why, but I think it is due to the fact I know what to expect this time.  Last year I had never run a half marathon and was in the unknown, this year I know.   I am not training as hard as I was....and mother nature is not helping!

Today on our 10 mile run, around mile 8 my achilles tendon started hurting...really bad.  We walked it out...then ran...then walked...then ran.  On one of our walking periods, I said to my running fairy (friend), " I feel so bad for my daughter.  If her achilles tendon hurt this  much before, during or after her surgery I feel horrible for not recognizing the pain she was in"!

It kills me to think she could not feel well or be in pain and I have no idea.  I hate playing the guessing game and wish she could just tell me.  This is one thing I do not take for granted with my other children....at all.

I really felt for my daughter today....it really hit home to me.  However, the difference between me and her is....I complained about it...constantly....and she never did...or never does.  I don't know if she expects pain to be a part of her life (I hope not), if she doesn't feel pain like I do (a good chance as girls with Rett Syndrome have a high pain tolerance) or she is one tough cookie (which is probably the case!).

I honestly can't imagine what it would be like to not be able to express my feelings.  And days like today really made me recognize how hard it must be for her to express her feelings...especially when she is in pain.

Here is a quote for today...


Love is but the discovery of ourselves in others, and the delight in the recognition- Alexander Smith

Resting Her Head on Me

Today's gift is my daughter resting her head on me.

I don't know what the weather is where you are, but here it is very cold and we had probably an inch of snow this afternoon.  I am not cut out for cold weather like this and I do not enjoy tons of snow.  The dusting we had today was perfect.

The snow started to fall right before my son and I went to pick up the girls from school.  The drive to carpool was picturesque!  And it made for some excited kids!

When we got home we all snuggled up on the sofa, turned on the fireplace, enjoyed a snack and watch tv.  My oldest daughter and I were on the sofa sitting next to each other.  We were watching one of our favorite shows, Good Luck Charlie, when I could feel her body relaxing as if she was drifting off to sleep.

She was sleepy, but was not falling asleep.  Instead, she was going into her relaxed state where she does not wring her hands and is nice and calm.  Then all of a sudden she rested her head against the top of mine!  It was so sweet!  I didn't want to move, but wanted to enjoy this moment for as long as I could.  Honestly, I didn't move.  I could have done some laundry or emptied the dishwasher, but I didn't want this little slice of heaven to end.

Eventually I did have to get up to start making dinner, but my son was lucky enough to sneak in and take my spot!  I love moments like these so much.  The simple pleasures of feeling her relax from the stresses of her day and then watching her feel comfortable enough with her brother to remain in the state of relaxation.

Here is a quote for today...

Besides the noble art of getting things done, there is a nobler art of leaving things undone - Lin Yutang

Picture of the YEAR

Today's gift is picture of the year (2012).

As you may recall from previous posts, I LOVE where my daughter goes for physical therapy.  The name alone, tells the story...HOPE.

Late this summer they had pictures taken of their facility along with pictures of their patients working with the therapists.  They captured an amazing (if I do say so myself!) picture of my daughter with her therapist.

My daughter loves the swing activity she does at the end of therapy as it makes her so happy.  But while she is swinging she is working my pulling herself back and forth....she has quite the arm muscles!  Her smile says it all!

The picture the photographer captured they used at a fundraiser they held in September.  I was bummed I was unable to go as I had my duties with Girl Power 2 Cure at a board meeting!

In December this same picture was on the cover of the employee newsletter for the hospital system Hope Therapy is a part of!

Then today I found out at therapy that this same picture is one of five pictures up for PICTURE OF THE YEAR!  Only employees of the health system can vote, otherwise I would have everyone I know voting for this team.

Every time I look at the picture it just speaks volumes.  It shows a child receiving physical therapy having fun while she is working and the therapist has a smile on her face too.  It shows a young child who "looks" typical, but for some reason requires PT.  It shows how therapy is a team effort and how one person can make a difference.  It shows that even though I wish my daughter did not have to have physical therapy twice a week, I know she is happy when she is there working and giving it her all!

This picture was not staged...trust me!  Anytime you go into therapy and you see my daughter working with any of the therapists or techs, they are always smiling.  My daughter may not be...if you are working her too hard, but they are!  And for the most part, my daughter almost always has a smile on her face too!

Different therapists smiling and she has a smile still too!

Now we just have to wait and pray all the employees voting think her determination, hard work and contagious smile are worth the title, PICTURE OF THE YEAR!  Even if she doesn't win by the votes, she is a winner in my book...every day!


Here is a quote for today...

I love photos because the best thing about it is, that it never changes, even when the person in it does- Author Unknown

A Bow

Today's gift a bow.

Today's gift isn't big, but they way it came about is a gift in itself.

When I picked up my daughter today from school she walked out with an accessory in her hair...one she didn't leave the house with this morning. As soon as she got to the car and her teacher opened the door, I said "honey, what is in your hair"? To which she replied, "a bow".

She was correct, she had a medium sized bow in her hair. When I asked them about it, they told me her friend made it for her. She has the sweetest friends who like to make sure things...and she is always appreciative of them thinking of her.

I was excited she was able to tell me what her gift was today she received, as her gift became my gift. "Bow", has been one of the words she has been able to say for a long time. Not one we use every day, but one she can still say.

Here is a quote for today...

A little sparkle of sunshine can put a colossal burst of sunshine into someone's day- Author Unknown

 

The First Smile of the Day

Today's gift is the first smile of the day.

I love seeing all my kids first thing in the morning. Let me back up here and say of course on the weekends I like it better if it is past the hour of 7:00am! On school mornings, the time doesn't matter as much as we have to get up anyway. But the first morning greeting they are still sleepy and cuddly. This is when they are not quite awake so they are not arguing with each other...over something silly!

My daughter's first interaction with us in the morning is usually a good indicator of her mood. So of course we always hope we are greeted with lots of smiles and hugs!

This morning when I went in to say "good morning" she had the nicest smile on her face, followed by a very sweet sounding "mommy". I love seeing her first smile of the day. It doesn't have to be her actual first smile of the day in general, but the first smile of the day to me!

We talked about her morning before I got her out of bed and she just continued to smile at me. I explained how she would be seeing her friends at PT this morning before school. She just kept smiling at me while we talked..taking it all in. She must have known it was her Mimi's birthday today! And then with her hands still wringing she lifted her arms...over my head...and hugged me!

I think this might have been better than the first smile of the day! But if it wasn't for the smile, I don't know if I would have gotten the hug!

Here are two quotes for today...

A smile is the light in the window of your face that tells people you're at home - Author Unknown

Use your smile to change the world. Don't let the world change your smile- Author Unknown

Gloves

Today's gift is gloves.

Since my daughter wrings her hands pretty much all the time, it makes it rather difficult to put anything on her hands. Sometimes pulling her hands apart it is so hard it truly feels like your pulling apart to suction cups. And as soon as you get them apart, she puts them quickly back together...like two magnets!

As you can imagine putting gloves or mittens on would be a challenge. But like everything else we do with her, repetition works.

Her hands have calluses on them from wringing so much and so hard. We put lotion on them often and every other night (on the night's I put her to bed), I rub Bag Balm all over her hands and put gloves on her hands to help keep her hands moisturized all night. The Bag Balm has really helped! But what had really come a long way is her letting me out on her gloves!

Repetition repetition repetition....

Putting on her gloved at night gets easier and easier every night we do it...but tonight she held out her hand as soon as she saw the gloves coming towards her! She is used to it now...and I think she appreciates her hands being soft and thinks of these nights as her own personal hand massage....who wouldn't like that?

 

Here is a quote for today...

Success is the sum of small efforts repeated day in and day out- Robert Collier

Perfect Hostess

Today's gift is being a perfect hostess.

Have you ever had one of those 24 hour moments when you have plans all set in stone with lots of people and then something happens and you have to go to Plan B...quickly?

Well, it happened to us on Saturday around 11:00am when I texted our babysitter to see if was feeling better. She came down with the flu/or some flu-like bug on Thursday. I asked her if she wasn't feeling 100% I didn't want her to come and risk getting my daughter sick as she has a very important doctor appointment coming up. She was not 100%, so we jumped to Plan B. Plan A was going to brunch with five couples (including us). You can imagine how hard it would be to coordinate another date between all five couples!

Plan B was...we hosted brunch!

We had plans to have the two younger kiddos go spend time with my mother in law and to keep my daughter with us. At the last minute, my middle daughter received an invitation from a friend so she spent time at her friend's house.

My daughter was the perfect hostess! She didn't swipe, roam around and around, or anything. She was a perfect as you could get watching a movie right by the ladies and interacted with us. We were able to entertain our guests without having to be on her...this was a first! A first...where we didn't have to be on her at all in a two hour window! It was as if she knew our plans had changed and she had was going to help us out!

She loves being around our friends...always has. She loves to just watch and listen. She just loves being in our company. My daughter liked having everyone come over and talk to her. And she loved meeting some new faces too!

Plan B couldn't have gone any better! And her perfect mood continued for the rest of the day!

 

Here is a quote for today...

If Plan A didn't work, the alphabet has 25 more letters- Author Unknown

Being Girly with Pink Chiffon

Today's gift is being Girly with pink chiffon.

Most girls my daughter's age love the store Bath and Body Works. I personally love their candles so I am in there quite often. And my middle daughter asked for a gift card for there for Christmas. It was not until I took my middle daughter there to use her gift card that I realized...wow my daughter would love this store!

I'm thinking lotions and chapsticks.....while my middle daughter picks up fragrance mists! Really!?? If she is into this....then it only means my oldest peers probably are too. Which means I am way behind!

I know God was looking out for me when he blessed me with a second daughter. She is amazing in so many ways (she truly is a neat kid!), but she also is the one who keeps her "big" sister up to date with what her peers are into. However, with keeping her big sister up to date means she is a little ahead of her times as they are three years apart. I'm okay with this as she is helping her sister.

When my middle daughter came home with her new purchases she let everyone see what she bought...and smell! My oldest loved the smell of the fragrance mist. There were two, but the one she liked the most was pink chiffon. She wanted to use it...often. But her sister wasn't into sharing her "new" things so fast.

Today, I surprised both of my girls by buying my oldest her own bottle of pink chiffon. I do not know which of my girls had a bigger smile on their face! I honestly had no idea she liked something like this as much as she did...probably all the talk at school she has been listening too! I can't wait to hear what fragrances her friends like and for her to share hers.

They all grow up so fast....

Here is a quote for today...

Sugar and spice and everything nice, that's what little girls are made of- Author Unknown

A Friend's Birthday Party

Today's gift is a friend's birthday party.

It used to be when I said "the kids have birthday parties to attend this weekend", "the kids" meant my two youngest.  However, now you do not know what "kids" I'm talking about.  Tonight, my oldest and youngest had birthday parties at the same time.

Every time my daughter with Rett Syndrome gets invited to a peers birthday party a piece of my heart melts.  Every child deserves to have a friend.   Every child deserves to be invited to a birthday party. However, having a child with special needs makes something so easy... like an invitation to a birthday party seem difficult.  I think the number one factor of why it doesn't happen often is fear....from both the birthday child and the parents of the birthday child.  I think they worry so much about how the child with special needs is going to "fit in" that they forget behind every child with special needs is also a caring family.  A family who isn't going to throw their child into something which is going to be uncomfortable for them or their friends.  Because of this fear, invitations are often sparse.

This is how it used to be.

This is why I my heart melts when my daughter with Rett Syndrome gets invited to a friend's party.  It means they want my daughter there.  It means they believe in my daughter.  It means my daughter has friends!

I love seeing how her friends incorporate her into their party.  I love how they invite her for a "slumber party", wanting her there for the whole party just like their other friends.  But they know there is a chance the "overnight" part could not happen....but they still invite her...because its okay.  They understand and would rather have her there than not there.  I love her friends.  They mean just as much to me as they do to her.

Tonight my daughter had a "slumber" party to go to.  She had a blast being "one of the girls"!  I loved seeing pictures of the night from the birthday girl's mom.  I loved seeing my daughter blend in with her friends.  I loved having a "typical" mom moment.

We are very blessed my daughter has her incredible teacher and friend to attend birthday parties with her to help make the experience wonderful and "typical".  I could attend with her...and would if her teacher/friend could not; however I think it is better if her "mom" didn't chaperone her to the party. After all girls have to be girls without their moms around!  And lucky for us her friends think of her teacher/friend as a friend to them too!

I can't thank my daughter's friend enough for believing in her.  Having a friend like her means the world to my daughter and our family.  Taking a picture to capture the memory only lasts seconds, but the memories from the picture will last a lifetime.

What do you think of this picture...can you find my daughter?

Here is a quote for today...

Some people are special cause of what they say, or what they do. But you are special to me because of the things you've done for me and who you are in my life. Cause just by being there you've made all the difference- Author Unknown

A 100% on her Test

Today's gift is a 100% on her test.

Remember how excited I was not too long ago over the fact she was learning about the solar system? Imagine how excited I was today when she got into the car this afternoon and told me she got an "A" on the test. But it wasn't just any "A"....

It was a 100, A+!!!

I guess you could say our hard work studying paid off. I love how she understood the main points of the solar system...enough to rock her test. And I also know she will continue to remember what she has learned, as her teacher makes her review everything she has learned during the year not only multiple times during the year, but also during the summer.

While summer is a fun time for her, it is also a time for maintenance. A time for her to review everything she has learned to help her not lose the information.

Just like I know she was proud of herself for knowing the material, I know she will be equally proud when she reviews it later. There is no doubt in my mind my daughter is one smart cookie, it's just so frustrating we can't unlock her full potential due to Rett Syndrome. Until that day comes, we will free her knowledge one test at a time!


Here is a quote for today...

Believe in yourself and all that you are. Know that there is something inside you that is greater than any obstacle - Christian D. Larson

"pa"

Today's gift is the word "pa".

Tonight we were having dinner a little later than normal as my middle daughter was trying a new gymnastics class. We were hurrying through dinner as I also needed to bathe the kids. We were way off our "normal" schedule. I like to have the kids all showered before dinner so their time with daddy isn't being taken up with showers. However, as my kids get older their after school activities get later, which is starting to make our routine a little rocky.

Oh well...we too shall figure this out. This little bump is nothing compared to the bumps Rett Syndrome has given us!

During dinner I was helping my daughter eat like I normally do. She would say "more" when she wanted another bite and "cup" when she was thirsty. Tonight she did something different. And because I was hurrying through dinner already thinking of the next thing we had to do....I almost missed it!

She was pointing to her dish and saying "pa", not "more". This is huge! She was trying to communicate verbally what she wanted by asking it by name...the best she could. Can you guess what "pa" meant?

PASTA!!!!

When I took a second and paid attention....I was blown away! I said, "absolutely you can have some more pasta"...and she got the biggest smile on her face! And she just didn't say it once, but at least five times! I think someone was proud of herself!

Here is a quote for today...

We would do well to slow down a little, focus on the significant & truly see the things that matter most- Dieter F. Uchtdorf

Having Me Take a Step Back

Today's gift is having me take a step back.

I want to be involved in every aspect of my daughter's care. From doctors, to therapists, to school and everything in between. Who doesn't right?

I have always been right by my daughter's side at all her therapies...as I want to be. I want to see what she is working on and how she is handling herself. I want to see the smiles so I know she is okay even though she is "working". However, today I took a step back at therapy and my daughter truly enjoyed it.

I took a step back one other time not too long ago and my daughter seemed to do better than if I was right by her side. So today, I tired it again. Same response....lots of laughing and doing things without hesitation. Now if I was right next to her, she would have not tried her hardest.

Today was a sign from her, she is ready for me to take one step back and let her have some free time without me...right by her side. If I stop and think about it, there are only two times I am not by her side. At school and when she is asleep. While she is at school of course she has someone with her at all times...but it is not me.

I realized today she needs to grow just like my other children do. She needs to have "her time" doing something without mom by her side. Her therapy is her "extra curricular" right now like gymnastics is to her sister. I'm not standing by her sister throughout her gymnastics lesson, so why can't I give my daughter space at therapy.

I know her therapists will go over everything with me after her session. I can still sneak a peek and see her from where I sit while I wait for her. I know she is okay.

I asked her tonight while I was putting her to bed if she liked it when I watched her physical therapy session....and she said "no". Then I asked her if she wanted me to not watch her anymore and she said "yes". She has spoken....I will listen.

My daughter is still getting older even though she has Rett Syndrome. She still has feelings even though she has Rett Syndrome. She still wants to be treated like her peers and with respect even though she has Rett Syndrome. When she gives me signs she is ready to take a step forward, I need to listen...even if it means I have to take a step back.

Here is a quote for today....

Life is a balance of holding on and letting go - Keith Urban

Studying the Solar System

Today's gift is studying the solar system.

I love all the "typical" material my daughter is learning in school. I do not know what excites me the most...the fact she is learning the material or seeing her answer questions about the material.

This afternoon I was helping her with her homework on the solar system. I wonder what she thinks about the solar system. The concept of space must seem so foreign to her. Just like Rett Syndrome did to me...before I had to understand it...quickly.

She amazed me with her knowledge of the material. She enjoyed showing me what she knew and what she had learned. She enjoys showing me what she is capable of...even something which seems so far away.

Rett Syndrome seemed so far away from me before it came knocking on my door. Then I had to not only learn about it, but live with it. Something so far away, suddenly was so close.

I don't know if my daughter grasps the concept of space and the solar system. But what I do know is she understands the main points of the solar system....like....the planet where people live; the largest planet; the smallest planet; which planet is the same size as Earth; which planet is known as the red planet; which planet is known as the blue planet; which planet is known for its rings; which planet is closest to the sun?

It's just like most people probably do not grasp the concept of Rett Syndrome, but when they learn about it they understand the main points...it mostly affects girls; it is the most severe form of autism; most girls cannot speak, walk, or use their hand; it is random and can strike at anytime; the girls are locked inside their own bodies and want to come out.

I am happy with her knowing the main points of the solar system, just like I am happy with my friends knowing the main points of Rett Syndrome to spread awareness.

Here is a quote for today....

You learn something everyday if you pay attention - Ray Le Blond

Not Going Into a Full Behavior

Today's gift is not going into a full behavior.

This afternoon we took the kids to their new favorite frozen yogurt place. We took the three kids, one friend and Granny. Everyone enjoyed their yummy treat and we were able to sit outside on this warm January day.

As soon as we got into the car, my daughter started to show signs she was getting upset. Just like most times...it came out of the blue. We all just continued going about our business in the car not showing her any attention. And her behavior was staying at a low level...level 3 (going on a scale 0-10). Then she started to point to the radio as we did not have on one of her favorite car cd's...Jack Johnson. So we turned off the radio and started her cd. She never came above a level 3.

Then just like it came out of the blue, she started laughing at her sister....and it was over!

I was so proud of her today and how she was able to work through it on a low level. Trust me, her behaviors can get really bad....and when she starts to escalate many times she hits the point where she had to go up, before she will come back down.

Behaviors like the one she had today do not happen often, but I have to say they are happening more often when she has a behavior. They say as girls with Rett Syndrome get older their behaviors start to go away....I pray this is true. I pray this is what we are seeing. I pray we are on our way to being behavior free.

I can't explain what it is like to see your daughter be so frustrated over something but she can not communicate what the something is so she starts to get mad...mad leading to furious. And the rate at which this happens is minutes. All while you feel helpless. You just sit there (sometimes in tears) and pray that the switch gets flipped ASAP so she can be happy again.

If my daughter has to get upset (and we all do sometimes), then I hope and pray they all continue to be like the one she had today.

Here is a quote for today...

And though she be but little, she is fierce- Shakespeare

Her Personality

Today's gift is her personality.

My daughter with Rett Syndrome has the best personality. For someone who is considered nonverbal she gives off an unbelievable amount of positive energy. Her smiles and giggles are contagious.

She is full of life, smart, trustworthy, loving, sincere, confident, honest, beautiful, funny and strong. I am sure I'm missing something, but these are her top ten personality traits!

I love how she can light up a room when she walks in. I love how others feed off her energy when they are around her. But most importantly I love how people want to get to know her. Her personality lures them in and they realize they want to learn more about her as she has so much to share and offer.

Having my daughter as a friend is having a friend for life....one where gifts are received daily.

Here is a quote for today....

Butterflies don't know the color of their wings, but human eyes know how beautiful it is. Likewise, you don't know how good you are, but other can see that you are special- Author Unknown

 

Her Good Judge of Character

Today's gift is her good judge of character.

This afternoon we had another training session with Midnight and his trainer. His trainer is incredible with him....and our kids. She does a great job of involving them in the training lesson. My daughter really likes her. You can see it in her face.

Usually when my daughter wants to let someone know she approves of them she will give off some signs....a tap to their arm, looking up at them with an innocent face, if your sitting down next to her she will throw her leg up onto your lap for you to rub or if you are walking with her she will link arms with you as if you are doing a dance.

Today at therapy we were leaving the training room to go home and our trainer walked with us to the car. In this short walk my daughter, my daughter linked arms with the trainer as we were walking out. It was the cutest thing!

The way she grabbed her arm gently and linked her hand around the trainer's arm was so sincere. It was like she was giving her seal of approval of the trainer and all she is doing for her puppy!

Then this evening we had some good family friends come over. She truly enjoys spending time with them. She is all giggles and grins when they are here and constantly is getting their attention. And of course she showed her usually signs of approval! I think her favorite one is swinging her leg into their lap for them to rub. She got lots of leg rubs tonight! I guess they approve of her too, because they went along with it!

I love how my daughter has her ways to show us who she really likes! Her approval I value.

Here is a quote for today....

I have no regrets in my life. I think that everything happens to you for a reason. The hard times that you go through build character, making you a much stronger person - Rita Mero

 

A Perfect Girl

Today's gift is a perfect girl.

All day today, my daughter was a great girl.   She was in a perfect mood.  

She started with physical therapy this morning working just as hard as ever with all smiles.  Then she had a fantastic day at school with her friends.  After school she enjoyed a walk with her Mimi and Poppy and had some good cuddle time.

Later this evening while I was getting dinner to the table, she was sitting nicely on the sofa watching tv and playing Connect 4....for a really long time.  Usually she is up and down, up and down, up and down.....up more than down!   However, today she was truly enjoying her "down" time.

After dinner she preferred to stay at the kitchen table and watch her puppy in his crate.  This does not happen....usually she pushes the table away to indicate she is done.

All day until bedtime she was in a very relaxed state....and it was very nice to see her so relaxed AND happy.  She has plenty of days where she is one or the other, but not many where she is both.

Days like today both start and end your day on a perfect note!

Here is a quote for today...

Remember this, that very little is needed to make a happy life- Marcus Aurelius 

Helping HER Sister with HER Homework

Today's gift is helping HER sister with HER homework.

I love it when my middle daughter and son help their big sister learn new things.  And I love it when they want to help her with her school work or things she has already learned.  But tonight...we had role reversal....which I think I may love a little bit more!

Every week my middle daughter has a spelling test so we go over her words a couple of times a week.  This afternoon when we were sitting on the couch I asked my middle daughter to bring me her spelling words so we could go over them.  When she handed me the list, I got a smile on my face.

The first word is one of the words her sister can say!!!  So I pointed to the word and told my oldest daughter with Rett Syndrome to ask her sister to spell....and then waited for her to say the word.  I need to prompt her a little bit, but then she said "bubble" loud and clear!  It was such an awesome experience for all of us!!!

Then half way down there was another word....."funny"....and she asked her sister this word too.  Now I will say the "f" sound is hard for her, but I started the word "fun" and she finished it by saying "ne".

It is amazing how something so little (little to most people....HUGE to us) can make your day!  I can honestly say I never thought my daughter with Rett Syndrome would be able to help her siblings with their homework!!!

Here is a quote for today....

Even miracles take a little time- Cinderella

Her posture

Today's gift is her posture.

This gift may seem different to most.  But to a parent who's child has just been diagnosed with scoliosis it means a lot.

Every day my daughter works hard on one of the many challenges/issues she tries to overcome.   If it is not my daughter, it is us, her parents working with her...to help her.  If it is not us, then it is her one to one, or her therapists, or her grandparents working with her.

We are very blessed with the fact that the challenges she faces are not as severe as many of her Rett "sisters".  But to us...to her...her challenges are severe to her.  Her challenges limit her from being the little girl she was meant to be.

While we are constantly helping her get bathed, dressed, assist her with meals (she has learned over time to hold her own cup and pick the fork up to put the bite in her mouth)...basically helping her with all her daily activities...we are also helping her in other ways.  And let's not forget to mention trying to keep her "calm" when behaviors rear their ugly head.

We are constantly helping her keep the functional hand use she has by keeping her hands busy...playing Connect 4, ball, anything which requires her hands to not "wring".  We are walking all over the house with her playing games, taking walks outside, or swinging on the swings to keep her mobile...to keep her legs moving.  We are massaging her hands nightly with special ointment to help heal the calluses she has caused due to her constant hand wringing.  We make her say the words she knows to preserve her speech and have her repeat new approximations and words over and over again to have new words added to her list of what she can say.

Now we have one more thing to add to her daily list...her back.  We must massage her daily to help release the tension she holds so tight in her back, neck and shoulders.  We must "try" to keep her sitting upright as much as we can, especially at the dinner table.  She sits on a cushion called a "wedge", to help her with her core, which helps her posture.  And now at therapy different exercises need to be addressed to help with stretching her back and helping her to loosen up her shoulders....lots of reaching overhead activities.

Today at therapy, she started adding new activities to help her back.  Sometimes when a new activity is introduced she is hesitant as she knows you are going to not be working just one area of her body, but two or three at the same time.  It is like when we exercise and do a reverse lunge with a bicep curl...we are working legs, glutes, core and arms.  Today she was standing on a wedge (to work her Achilles Tendon she needs stretched due to her prior surgery), while she had to reach down to pick up a bean bag (works on balance, trunk support and teaching her to bend her knees when she "bends" down), then she had to take the bean bag reach overhead and throw it into a barrel ( worked on stretching her back and shoulders and crossing her midline).

Think how hard this would be for a child like my daughter who is constantly wringing her hands. Think about all the steps she had to do...herself...and all the challenges she had to overcome to make this happen, especially given her overall muscle tightness.  Just the challenge of apraxia alone is huge to overcome.  But guess what she not only did it, but did it perfectly!  I was so proud of how hard she was working.  And the smile on her face showed she was equally as proud!

Then tonight at dinner, I look over at her and she is sitting as straight as can be on her wedge looking at her "puppy".  Her posture was beautiful!  Maybe a wedge is what I need to work on my core too!

As I mentioned in a post not too long ago 2012 was a pretty good year for her...for us.  It looks like 2013 will have some extra challenges for us, but it is nothing we can't handle.  It is just one more mountain to climb...

Here are some quotes for today...

If God brings you to it, he will bring you through it- Unknown

God has a reason for allowing things to happen.  We may never understand His wisdom, but we simply have to trust His will- Psalm 37:5

A Good Student....at Dog Training

Today's gift is being a good student at dog training.

Midnight, our new "puppy" just started his second of three weeks at doggy boot camp.  We were supposed to have our first training with him this past Friday, but his instructor was sick so we had to reschedule to this afternoon.

We wanted the whole family to be a part of the training process as this is a "whole" family pet.  Before we went into our training session, we had a tour of the facility....or should I call it a "resort" like they do.  Honestly, what pet would want to leave here!!!  We also wanted to tour his accommodation options as this will be the place we will have him "vacation" when we go on vacation.

My daughter was amazing as we toured the "resort", especially knowing there would be places within where the vacationers....aka the other dogs would be barking loudly when someone would enter the building.   All she did was laugh and say "puppy"!

When it was time for us to go into our training room I was a little nervous.  The room was directly across from the pool at the "resort".  Even thought the pool was empty, my daughter still knew it was a pool.  She kept letting us know by saying "pool" not once, not twice, but probably 20 times.   But as soon as she saw her "puppy" come in she stopped and all eyes where on him.

It is amazing to watch her watch Midnight.  She loves to take in everything he is doing.  Throughout the whole training she was listening and watching....just like me and my husband.  My other two children listened too....but were not as in tuned as she was.  They wanted to play with him more than "learn" and then when they realized they couldn't play with him at that moment they started to roam the room looking to see what they could get into....kinda like a puppy!

I was so proud of my daughter for being patient and calm while we trained with our new dog for ONE HOUR.  This training session was proof to me....she really loves her "puppy".  He truly brings out the best in all of us.  Just like the sticker/magnet says...."My rescue dog rescued me".

Here are two quotes for today....

Dogs are not our whole life, but they make our lives whole- Roger Caras

The reason a dog has so many friends is because he wags his tail instead of his tongue- Anonymous

Making a Difference

Today's gift is making a difference.

About two months ago a neighbor called to tell me she has a project at school in which she is to write about someone who inspires her and she wanted to know if it was okay if she wrote about my daughter.  OF COURSE it is okay!  Wow, I was touched beyond belief and I was so happy for my daughter.

You see the young lady who called me is only 17 months older than my daughter....so they are pretty much peers.  Due to where my daughter's birthday falls, if she did not have Rett Syndrome we would have held her back one year.  But seeing as she had extra challenges to deal with due to Rett, we decided to hold her back an extra year.  So yes, she is about 15-20 months older than most kids in her current grade.  But no one cares....and no one notices.

Ever since we became friends with the family whose daughter wrote about my daughter, there was an instant connection.  They are a family of six (three daughters and one son) and they are some of the nicest people you will ever meet.  The daughters instantly took to my children, especially my oldest with Rett Syndrome and always made her feel special.  They know what she enjoys and they know how to make her laugh.  Most importantly they always include her!

Little did I know how much of a difference my daughter was making to them.  To hear a peer explain it in her own words brought tears to my eyes.  Hopefully by now you all know my passion for my daughter is that she can live the most typical life she can with Rett Syndrome and I want her peers to understand she is just like them, except she has extra challenges she has to live with....daily.

My daughter's friend did an amazing job in her video for her presentation.  I asked her if I could share it in my blog and she said "of course".

I will say you will probably need a tissue, as it will bring tears to your eyes if you know my daughter....and maybe if you do not.  There are pictures of her from when she was newly diagnosed with Rett to present and  seeing her during her younger years brings back so many memories.  Memories of us on this new journey and not knowing where it would lead.  Memories of where we were, to show us how far we have come.  Memories to remind us of the things she loved then, she still loves today.  Memories of our daughter, Rett or no Rett, they are still memories.

Tonight I am so proud of my daughter for being her and for helping others to understand her "world".  Tonight I am proud of her friend for believing in my daughter and realizing she is just like her.  Tonight I am proud to share them both with you!

Instead of quote tonight, I think the video is better!

***UPDATE as of JANUARY 29th, 2013***
This is a text I received from our neighbor who's daughter did this project!
"she received a 100% on her project AND was awarded a classroom trophy for the BEST presentation by HER PEERS"!!!
Girl Power is what I am talking about here!!!! And her PEERS recognized it!

A Fun Evening with Friends

Today's gift is a fun evening with friends.

Tonight we had two families come over for dinner. Kinda like a last "hurrah" before school starts on Monday. The kids were excited to see their friends, as we were equally excited to see the parents too!

My daughter with special needs was fantastic! She loved seeing everyone...but especially the adults in the group. You see one of the dad's is who pushed her in her own 5k in November and his wife ran the Disney Princess Half with me last year...and will again with me in February! The other couple...she just loves that dad too....and his wife is running the Disney Princess Half with me this year too! We are very blessed to have such amazing friends.

My other two children had their friends to run around with and they were very happy. They were being kids. While break is coming to an end we have to get back on a much "needed" schedule. Overall on break the kids pretty much stayed on their "schedule", so I was okay letting them have one more night be a little bit more "flexible".

My oldest daughter with Rett Syndrome is a pretty good indicator of this extra "flexibility" and tonight her A game was on! While she was being fantastic the other two were being kids....excited kids to see their friends..."typical" kids.

I think it is hard sometimes for my husband to cross this bridge of "schedule" versus "no schedule". I get it...I do. But there are times it is okay to come off a schedule and go with the flow. Tonight was a perfect night to let it happen...but he wasn't too willing to go there....until he did.

I will be the first to admit its hard to do things with other "typical" families when one of your children thrives being on a routine. It's either the whole family packs up and leaves or half the family leaves while the other stays. But there are times when you can bend the rules...and it is okay.

Our children are not getting younger...and either are we. As they get older, they can handle staying up a little later....and it becomes "typical" when families get together. Our oldest is 11 and while she has Rett Syndrome, I want her to be "typical". I want our whole family to experience "typical" when we can.

Tonight we pushed the envelope an extra 45 minutes. All went extremely well. Our oldest was perfect and the other two were "kids". In the "grown up" world they live in (because of their sister) we have to remind ourselves...at least I do...they are still kids...5 and 8 to be exact. Let them enjoy the little things!

To me, being the "host" for a get together is the best. If we feel anyone has to go to bed...we are at home. If anything goes wrong...we are at home. Yet, we still get to enjoy ourselves to the fullest. Schedule or no schedule.

Tonight we were the host family, we bent the rules (a liittle) and all was good...great in fact. Good food, great friends, a perfect daughter with special needs, football on tv, and 4 other kids running around being kids....what else can you ask for...

Here is a quote for today....

Live life for the moment because everything else is uncertain - Louis Tomlinson

A Massage

Today's gift is a massage.

As much as I would like the massage, the massage was actually one I gave to my daughter.

My daughter is always extremely tense and tight.  She wrings her hands constantly and she never really relaxes unless she is asleep.  I try often to get her to lay down on the floor on her stomach, so I can rub her back.  She will rest there with her arms still tense and wringing above her head and then will pop back up after only three minutes.

Well, today was different.  She actually relaxed....100%!

I helped her down to the floor and then slowly got her to lay down onto her stomach.  I was also successful in getting her to keep her arms out to her sides....like she was lying on the ground in the shape of the letter "T".

Then I started to give her a much needed massage to help her release some of her tension.  Especially after our doctor visit the other day with our news of scoliosis, I wanted to help her stretch her back as much as I could.

She loved her massage!

She laid as still as she could be with this look on her face like she was saying, "wow, why did I wait so long for this!"  I had to try and get her to laugh sometimes as she looked so serious....so still....frozen almost!  I am so happy she enjoyed her little massage as I know she needed one.  I just wonder if she would actually enjoy a "real" massage one day.

When she got up from her "20 minute mini spa treatment" she was so relaxed, it was like she was in the zone.  It was so cute to see.  It was exactly how I feel after I get one too!

I guess I know what I will be doing weekly for her....and she deserves it for sure!

Here is a quote for today...

Breathe in.  Take a deep breath.  Be aware of your body relaxing.  Let out unwanted energy and tension- Laurel Izard

A Christmas Present Success

Today's gift is a Christmas present success.

Present ideas for my daughter with special needs is always a challenge.  We know what she likes (or at least we think we do) and we buy many of them for her throughout the year.  Of course we save bigger items for birthday presents and gifts she can ask Santa for.  However, year after year the ideas get harder and harder.

What my daughter likes most is spending time with her family and friends.  When we were racking our brains this year for ideas we kept this in mind.  After hours and hours of searching online one night....it came to me!  I had the gift she could ask Santa for!

My daughter loves movies!  She has many favorites...Monsters Inc, High School Musical (all of them), Soul Surfer, Hotel for Dogs, Justin Bieber, One Direction on Tour, Hannah Montana the Movie....and Shrek (all of them).  She will watch any movie, but these are consistently her favorites!

Two hours from our house there is a large resort which highlights a Dreamworks movie every year November-January.  Breakfast with characters, gingerbread house making, meet and greets and then a whole ice displays of the movie characters (life size).

The Dreamworks movie this holiday season is SHREK!  When I found this online I was jumping with joy!  Of all the activities they offered the one I knew my daughter would enjoy the most would be the ShrekFeast Breakfast!  So this was her wish from Santa!

And Santa listened...and added an extra special touch.  She was able to bring a friend to join her at the ShrekFeast!  Santa knows how much she enjoys her friends and how much they mean to her!

Today was the ShrekFeast!  It was amazing!  It was outstanding!  It was the perfect gift!

This was take on the way to ShrekFeast...this smile says it ALL!!!!

Due to timing on our end, we had to wait until this week to go and we couldn't have picked a better time to go.  The exhibit ends on Sunday and most schools are back in session from Christmas Break which means the weekdays would be less crowded....right?  It was practically empty!  Which means we had lots of one on one time with Shrek, Fiona and Puss in Boots!

Our ShrekFeast started with us taking a picture in Far Far Away.  Then we were lead to our royal table where we had to take the Ogre Oath.  Then we became official Ogres and Ogresses!

Breakfast was delicious!  Even the waffles were in the shape of an ogre's head!  The drinks for the kids was green too!  And dessert would not be complete without a chocolate fountain....but in this case the chocolate was green!

While we dined we spent time with Shrek, Fiona and Puss in Boots.  This was definitely the highlight of the day!  It was just like waiting in line at Disney to see your favorite character, except there was not only no wait, but no line!

Seeing my daughter having the time of her life with one of her best friends (a "typical" peer), was the best present I could ask for!  She truly was having the time of her life!  Seeing her never ending smile today was a sign to me that I definitely had found the perfect gift for her!  Thank you Santa!

Here is a quote for today...

Go forward in life with a twinkle in your eye and a smile on your face, but with great and strong purpose in your heart - Gordon B. Hinckley

Being an Excellent Patient

Today's gift is being an excellent patient.

In four weeks we are going to be taking my daughter to see a new doctor.  In preparation for our visit she has to have lab work done. When I opened the attachment with the paperwork for the lab work my stomach started to get knots.  It was a "work up" for sure!

The last time my daughter had extensive lab work done was when we were still playing the guessing game and trying to figure out what was really going on with her.   Six. Years. Ago.

Today was the day she had the lab work done, bright and early this morning as she had to fast. Anytime she has blood work done I always bring my dad, aka Poppy, as he is very calm in situations like these.  And it also helps he knows a little about finding a vein!   I also said lots of prayers she was going to do okay and we would get through this with flying colors.

She was a ROCKSTAR! Wow!

A year ago was the last time she had her blood drawn, with only one vial being collected.  No big deal...right?

Today...she had not 1, not 2, not 3, 4, 5, 6, 7, or 8....but NINE vials of blood taken!  She. Did. Not. Make. One. Peep. Or. Face!

I was beyond proud of how awesome she was this morning!  My other two children would still be screaming!  Trust me...I have had to get their blood drawn before and you would think they were removing a limb!

Her excellent patient skills did not stop at the lab today as she also had an appointment this afternoon with her orthopedist. We had an appointment scheduled to pick up her new AFO, but I wanted to also get an X-ray (six actually) done of her back as I (we) felt something was going on with her back and her last growth spurt.  And we were correct.

Another characteristic of Rett Syndrome has decided to rear its ugly head with our daughter.   Scoliosis.

Bad news, she has it.  Good news, it does not require bracing and we will watch it for six months and then have another set of X-rays.

Through the X-rays, her doctor visit and AFO fitting she was again a ROCKSTAR!  To say she put up with a lot is putting it lightly.  I would have been done after all the lab work!

Today she taught me that even when you are given bad news, you still have to keep your chin up and keep moving forward. To her, nothing changed today.  To us, we now know we not only have to continue doing what we have been, but better.   More.  Scoliosis is just one more hill we have to climb, but we will not let it limit one more thing from our daughter.

My daughter is an excellent patient...lab work, doctors offices, physical therapy....you name it...so I know she will be an excellent patient in dealing with this new characteristic of Rett Syndrome.

Here are two quotes for today...

Fear is nothing more than an obstacle that stands in the way of progress.  In overcoming our fears, we can move forward, stronger and wiser within ourselves- Author Unknown

True strength is keeping everything together when everyone expects you to fall apart - Author Unknown

A Happy New Year's Day

Today's gift is a happy New Year's Day.

Another year has gone and another new year has begun!

Overall 2012 was a pretty good year for my daughter.  When I look back on this year with her I honestly can sit back and smile.  It is extremely nice to look back on a whole year and see nothing but positive memories.  I am sure we had some rough patches in there somewhere, but clearly they were not memorable enough for us to remember them.

All the moments I think about in 2012 are the happy ones.  The "firsts" my daughter was able to experience.  She regained her walking with the help of her new AMAZING therapy center.  She was invited to multiple birthday parties.  She was able to enjoy Spring Carnival at school with her friends with mom and dad taking a step back.  She enjoyed rides in her new Wike which was a Christmas present in 2012.  She helped spread Rett Syndrome awareness at multiple events all over town.  She had her FIRST slumber party for her birthday (this is probably my favorite!).  She made HONOR ROLL for the first time in the Fall of 2012.  Of course with making honor roll there was lots of hard work and studying involved!  She finished the first semester of this school year at school off by having ZERO behaviors at school.  And these are just the highlights!

I can not wait to see what 2013 brings to my daughter.  I just have this feeling it is going to be a great year for her.  Call it a mother's intuition or whatever you like, but I think it is going to be a great year on so many levels!

It is a New Year for new beginnings, new adventures, new skills, new lessons....anything new.  I am always willing to try new things for and with my daughter and I can't wait to see what fun we are going to have in 2013.  Let the memories begin!

Happy New Year!

Here is a quote for today....

Tomorrow is the first blank page of a 365 page book.  Write a good one!- Brad Paisley