Thursday, February 28, 2013

Boom Clap, Boom de Clap de Clap

Today's gift is boom clap, boom de clap de clap.

Do you have any idea what I am referring to here?  How about it I added pop it, lock it, polka dot it....

Anything?

Well, they are the lyrics to Miley Cyrus's song Hoedown Throwdown which is in the movie Hannah Montana...which we watch all the time.  I seriously should have this dance down...but I don't....and it's probably a good thing!

When this song came on during the movie, my daughter did something she has never done before.  Every time, Miley, would throw her arm out to the side...I guess when she was pop'n and lock'n it...my daughter would throw hers out to the side too and hit the sofa next to her.  It was right on beat too!

I videotaped it on her school ipad and can not figure out how to upload the video to share with you!!!  I really think she was trying to imitate Miley's actions on the screen.  It was incredible to watch!

I love it when my daughter is watching tv or someone and she tries to imitate what they are doing.  It tells me she is really engaged in the moment.

I can't wait for the day when she can pop and lock Rett Syndrome up and dance the night away free of Rett.  Until then I will enjoy all the gifts she gives me daily....like today's!


Here is a quote for today....


Dance is the hidden language of the soul- Martha Graham

Life may not be the party we hoped for, but while we're here we should dance- Author Unknown

Wednesday, February 27, 2013

Being Observant

Today's gift is being observant.

From the moment I picked up my girls from school today, my daughter with special needs was very vocal.  She was talking up a storm, saying her familiar words over and over again.  It was so cute to hear, as it is usually her sister who is talking nonstop!

Right after school we had to make a quick stop to pick up girls scout cookies which have arrived....Lord, help me now!   Through the whole errand she still was laughing and talking especially rattling off the names of everyone she knows.

When we got back on the main road to our house, she was in the back seat rocking back and forth saying her teacher's name over and over and over again with a big smile on her face.   I thought she was just saying her name like she had been mentioning others minutes before.

I was wrong.

She was saying her name over and over again because she was in the car next to us and was waving to us!  The only person (there were 4 of us in the car!!) to notice was my daughter with Rett Syndrome!  She was saying her name over and over again, because she was looking at her!

Boy, did I feel like an idiot!

My daughter is always so quick to point things out to us...nothing is wrong with her eyes for sure!  I love how she was communicating with us how she saw someone she knew too, but because she was playing "role call" minutes before, I assumed the same was happening.

I guess next time I will pay closer attention to our surrounding when she says something repeatedly!

Here is a quote for today....

All things are possible, if you believe- Mark 9:23




Tuesday, February 26, 2013

Another Word

Today's gift is another word.

When I picked up my daughter from school she came out to the car full of smiles....which is always a sign of a good day. Her teacher told me everything she did and saved the best for last.

On top of doing her current class work she also does maintenance work on the things she has already learned...so she doesn't lose the knowledge she gained. In going over her maintenance work, she pointed to a card with a picture she had seen countless times ( she also sees this object daily in our home) and said "banana"...

CLEAR AS DAY!

I am so excited she gets to add another word to her growing vocabulary. Who knows if/when she will say banana again....but what I do know, is since we know she can say banana, we will keep working on the word whenever it is appropriate. After all we know repetition works!

 

Here is a quote for today...

I'm so happy I could bounce- Tigger

Monday, February 25, 2013

13.1 ONLY for MY Princess AND Receiving Her Medal...Gifts 209 and 210 combined

**Due to blogging issues in hotel on Sunday today's post will have TWO gifts...Sunday's and today's....ENJOY**

Sunday's Gift....13.1 only for my princess

If you had told me a two years ago I was going to run my first half marathon in February 2012, I would have said you are crazy!  I could not even run to the stop sign without getting a shin splint, let alone 13.1 miles!  And if you followed by saying I would do it TWO years in a row...I would have denied it for sure!

Well, you know by now I was wrong...I was the crazy one.  But only half crazy..right!?!

After five months of training, half marathon weekend is here!  I can not begin to tell you how moved I am to have eight wonderful friends join me in Disney to run a half marathon for my daughter.  Despite my typical life of doctor and therapy visits and chasing my other two munchkins around with their daily needs (and wants!), and the VERY cold and rainy winter, I still found time to train for this race.  Thank you to all of my daughter's Fairy Godmothers for taking time away from the important people in your life to help someone special in mine.

We had fun in the parks ALL day Saturday and I truly think we walked a marathon...I'm not joking!  We finally had dinner at 8:00 and were in bed by 10:00 as 3:00 was going to be here before we knew it.

And it was!

I was very excited to be moved up to a closer corral this year after submitting another race time!  We were wished off by THE Fairy Godmother and fireworks at 5:49 and my training partner and I were off.

Wow...it was humid!  We instantly felt it and said training in the cold is actually better than this humidity!  Miles 1-3 were painful...as in it felt like it was taking forever...but miles 3-8 were great.  We were getting really hot and uncomfortable around mile 9...and decided to do the run/walk Jeff Galloway method to the finish line.  Clearly we were not winning th race, we just wanted to finish!  That was our plan and we stuck with it!

Disney did an OUTSTANDING job of having something for you to look at all along the way to help take your mind off the race.  Characters, bands, the actual parks, cheering crowds, looking at the outfits people dressed in (some wore full on costumes!), you name it!  People actually stood in lines to wait to get their picture taken with a character!  We did not, but we did get our picture taken after mile 6 coming out of the castle...you have too! My dad and step mom were among the spectators cheering us on and it was great to see a familiar face in the crowd yelling your name!

Thinking back on the race now, I don’t know if it was the fact that there was so much to look at all along the way or that I had an incredible friend to talk to the whole time or a combination of both, but the run wasn’t bad!  When we would get a rough patch we kept each other motivated by staying positive, laughing and calling out all the names of girls who have Rett syndrome we were running for...especially on the hills...that is where we needed the push!  Water breaks were more for pouring the water down our backs to keep us cool!

Probably one of my favorite memories was at mile 12.5, I facetimed my daughter with Rett Syndrome at my parents house as I wanted to finish the race WITH HER!  I wanted her to run through the finish line with me.  As soon as I saw her face on my phone I started to cry.  It was a powerful moment for me....seeing her face....knowing she is the whole reason I am running this race.  I flipped the view on the screen so she could see where I was running and was headed to the finish line.  Right at 12.9 miles, my phone lost connection!  I was so bummed!  I tried getting back on and could not....but then my phone rang and it was them calling me back...not facetime, but a call.  I ran through the finish line talking to her!  It was great!  13.1 miles for my little princess....worth every step!

Instead of a quote here are some pictures from our entire weekend....

4 Fairy Godmothers and myself at the airport!  

Me and my daughter's teacher/one to one/true believer!!!

Lunch after arriving in Florida!

My daughter's teacher with her bib number!

Hanging out at the Girl Power 2 Cure Expo Booth!

A familiar face at the Expo!

On the bus coming back from the expo!

Team GP2C Dinner, My daughter's team!

Our inspiration!

Fun day at the park!

My dad and step mom had fun with us too!

4:45AM on race day and I ran into my friend/big sister from high school who I haven't seen since 1993!!!!

Trying...key word trying to get a picture of the fireworks going off with my running partner...

My running partner....we did it!!!!

Yay!!!  I'm hot and tired and stink!

The little girl who was my inspiration every step of the way!

My treat after the race!





Today's gift is receiving her medal.

I could not wait to get home today....to see my kids....to see my husband...to sleep in my own bed.  I really couldn't wait to get home to place my daughter's medal around her neck.  

All my race medals I give to her as she is the reason I started running.  No one deserves the Princess medal more than my daughter.

I think she was pretty excited to get it too....what do you think?!?!

My weekend was filled with lots of laughs, pain and tears....but it was well with it.  The pain I endured was nothing compared to what my daughter lives with daily.   My daughter's team alone raised        $23, 018!!!!!  And the whole Girl Power 2 Cure Team raised over $200,000!!!

The smile on my daughter's face when I gave her the medal was the BEST way to end my weekend!  


Here is a quote for today....

I run for girls with Rett Syndrome.  I run because they can't.























Sunday, February 24, 2013

Blogging Issues

I'm away and having major blogging issues on my iPad! I do not want to publish what I have written as I can not proof!

Please know gift #208 will be tomorrow as well as gift # 209!

Thanks for understand and I apologize! It was a good one too! But by waiting you will also get pictures!

Off for a much needed nap!

Thanks,

Em

Saturday, February 23, 2013

Encouragement

Today's gift is encouragement.

I encourage my daughter daily to do and try.  I, like everyone else in our family, want her to be her best.  We encourage her as we know she can do it...it may be hard and/or difficult, but we will help her every step of the way.  Throughout life we sometimes have to work harder to reach certain goals, but having the right people by your side makes all the difference.

Just like I encourage her, she encourages me too!  She works hard at everything she does and it makes me realize just how hard she does work.   Last year, I took on probably the biggest challenge of my life...in honor of my daughter.  I trained for and ran the Disney Princess Half Marathon...13.1 miles.

As you could guess from my previous post, I decided to run it again...tomorrow in fact.  I decided to run for my daughter as she had a rough start to the 2012 (yes..I did mean 2012!) year still recovering and getting her strength back from her tendon surgery.  I decided to run since she had a challenge in 2012, I needed to have one myself.  My daughter is one of the hardest working people I know and through it ALL, she NEVER gives up....but keeps pushing through the challenge.  She is my hero!

My training started in September and it was harder for me this year.  I knew what to expect of the half so I wasn't hard on myself at the beginning of my training.  However, after the holidays I had a big reality check.  I went on a long 9.5 (well it was supposed to be) run and it kicked my butt!  After that run I realized I needed to get myself into the game.  I was running for my daughter and all her challenges and I can not take it lightly or let her down.

I'm here in Disney with my daughters amazing Fairy Godmothers and they too have given me so much encouragement.  I can't wait to kick the asphalt with them in the morning.  I will have my running fairy who I trained with by my side encouraging me every step of the way and my daughter on my mind to help keep me focused.

Here is a quote for today...

Anybody can stand atop a mountain, but few will climb one- Pepper Blair

Friday, February 22, 2013

Eight Fairy Godmothers

Today's gift are eight Fairy Godmothers.

Today my daughter is very lucky to have eight Fairy Godmothers (nine including me) flying to Disney to run in the Princess Half Marathon in her honor on the Girl Power 2 Cure Team.

If it were not for my daughter having Rett Syndrome she would not have:

  • Eight Fairy Godmothers running for her in the Disney Princess Half Marathon
  • I would not have met three of her Fairy Godmothers as our paths only crossed due to Rett Syndrome.
  • I, along with two other Fairy Godmothers would never have (probably) run a half marathon.
  • I would never have met or have the amazing friendships I do with these eight incredible Fairy Godmothers.
I am beyond blessed to have these eight women stand by side everyday, but training for a half marathon too in honor of my daughter makes our friendship so much stronger.  Last year I ran this same race with seven Fairy Godmothers and of those only one is running again with me.  So really my daughter has 15 Fairy Godmothers (16 including me)!  Pretty amazing how one little girl can truly touch the lives of so many!

I know how hard it is to train for this race, between finding time and being there for your family....and I don't work (well, I actually have this incredible full time job, but the pay isn't what it should be...CEO of the Home!).  Of the eight Fairy Godmothers running this year every one of them works a full time job AND we have 21 kids between us! And they found time to not only train for my daughter, but take away time from their families to be there for mine!!!!

My daughter is one lucky girl and thanks to her, I'm equally as lucky!


Here is a quote for today....

Good friends are hard to find, harder to leave and impossible to forget - Author Unknown

Friendship isn't about whom you have known the longest...It's about who came, and never left your side...- Author Unknown



Thursday, February 21, 2013

Feeling Better

Today's gift is feeling better.

After probably two weeks of feeling crummy and three full days of having a diagnosis of strep, my daughter is back to her giggly, bubbly, joking self!  And I couldn't be happier, especially since I leave to go out of town tomorrow...I can leave knowing she feels much better.

She woke up on her own at 6:15, walked into our room, requested the tv with a point and climbed up onto our bed.  Lucky for her, she could take her time today as it was a PT morning.  She was all smiles and we talked about all her friends she was going to see today...which lead to giggles.

I know she missed school so much, especially her friends as they mean the world to her.

As I write this she is being stretched at PT and all I hear is lots of giggles...you know she is feeling much better if a little bit of pain brings out her laughter.







I'm so happy for her she is feeling better so she can truly enjoy a fun long weekend with her Mimi and Poppy...especially since last time she was there she was sick.   If anyone deserves to have fun, it is my princess...the one I will be running for this weekend!

Here is a quote for today...

If you have good thoughts they will shine out of your face like sunbeams and you will always look lovely - Roald Dahl

Wednesday, February 20, 2013

Cup...Me

Today's gift is cup...me.

I kept my daughter home one more day to rest as there are so many germs flying around I didn't want her to go to school not feeling at least 90% better. Tomorrow she will go for sure as she really misses her friends!

After I got her dressed this morning and did a dry run with my packing...(I really want to take my suitcase ON the plane with me...) she said "cup", as she wanted something to drink. I told her as soon as we get downstairs I will get her something to drink.

Yes, believe it or not, I did get everything to fit in!

I don't think we were in the family room two minutes when she sat down on the sofa and said, "cup me"!   I said, "I know you want something to drink, I'm getting it"...to which she replied, "yeah"!
We do not get many two word combinations, but when we do it is not only incredible, but 100% spoken with a purpose!

She is full of surprises and I will definitely be thinking about this gift when I am running 13.1 miles in her honor on Sunday.  Who knows, I may be at the point somewhere along the run where the only words that come out of my mouth will be "Cup...me"...as I will be one thirsty girl!


Here is a quote for today...

I love those random memories that make me smile no matter what is going on in my life right now- Author Unknown



Tuesday, February 19, 2013

Taking her Medicine

Today's gift is taking her medicine.

My daughter was home sick today...again...with strep throat. Being nonverbal she has signs she gives me to indicate she has strep....they are always the same.

Late yesterday afternoon I took her in for a strep test...and bam...positive. Mother knows best, right.

I hate it when she is sick for various reasons, but one of the main reasons is because usually it means more medicine she has to take. Every day she takes two medications...this doesn't change. Now for the next ten days she has to add one more to her list.

She is used to her normal two medications and doesn't mind them. But sometimes she doesn't care for her new medicines which makes it difficult to give to her. This time she doesn't mind it...and it is a good thing since she is taking it three times a day!

I sure do hope she feels better as today she was one tired little girl. After 14 hours of sleep I would have thought she would be ready to go...not so much. She still had a low key day. The only good thing that happens when she isn't feeling well is you get lots of good snuggles in!

Here is a quote for today...

A spoonful of sugar helps the medicine go down- Mary Poppins

*has anyone tried this for real?*

Monday, February 18, 2013

A Day at the Salon

Today's gift is a day at the salon.

The kids didn't have school today so I tried to get some things done we normally would do on the weekends...like a haircut.

I remember the first time our stylist cut my daughter's hair...6 years ago! Over the past six years we have come a long way in what it takes to get her haircut. I used to have to plan the time and make sure it was "just perfect". It had to be the first appointment of the day. I had to come with my bag of tricks, which always included marshmallows and photo albums. I had to pay before the appointment as she is always ready to go after the cut!

Today...as in the present...she just loves being at the salon. No treats come out unless they have to. She just sits there and lets her stylist cut her hair for 40 minutes! The only thing needed now and then is a movie on my iPhone (to get her to look down) and a water (her version of a Starbucks)! I do still pay beforehand, as it just makes things easier.

All three of us ( me and both of my daughters) go to the same stylist. Six years ago when my husband found out I was paying $42 for her haircut he wasn't too thrilled with the idea. I said, I would pay $142 for her to sit there for 40 minutes and get her haircut, styled and blown dry! Our stylist is so calm and patient with my daughter...and this too is worth every penny...if not more! I think the fact we have been with her for 6 years says a lot.

I love how my daughter can truly enjoy the salon experience like me and her sister!






Here is a quote for today...

Be your own kind of beautiful - Author Unknown



Sunday, February 17, 2013

The Keyboard

Today's gift is the keyboard.

My oldest daughter does music therapy on Monday afternoons. She loves anything to do with music. After her 30 minute session, her music therapist gives my middle daughter a piano lesson...but we use a keyboard.  It is extremely nice to have one therapy AND extra curricular where I do not have to drive any where!

This afternoon my daughter with Rett Syndrome was really quiet.  We were calling her name and she wasn't coming to us.   So I started looking for her in all her normal hiding places, but she wasn't there. And she wasn't laughing to give herself away either.  The last place I looked was in our front office, where my middle daughter has her keyboard set up.

There she was standing in front of the keyboard!  I am sure she was trying to play it, but it was turned off.  So I immediately turned it on for her and she started to play away!  And I had someone bring me my camera!





I love how she was so interested and wanted to play music.   I was sad how she was unable to come tell me or to yell to me she needed help!  I'm just happy I found her in there while she was still interested and didn't miss an opportunity to hear her play.

Here is a quote for today...

Life is like a piano...what you get out of it, depends on how you play it- Author Unknown

Saturday, February 16, 2013

The Little Things #7

Today's gift is the little things (#7).

Last month I wrote a post titled gloves and how she sleeps in them every other night. I massage her hands with bag balm to help keep them soft and to help the sores she has own her hands from rubbing them so much.

Well, due to the fact we do this every other night...typically the nights I put her to bed, she is not the only one who has soft hands. I do too! I love how helping her, she is also helping me. Especially with the cold weather it is nice not to have dry, cracked hands.

It is just part of our bedtime routine and now she looks forward to her hand treatments. As soon as she sees me get everything ready she puts her hand out for me...without me asking. I think this is a sign she enjoys having this done and knows it helps her hands feel better.

Here is a quote for today...

Do good. And good will come to you - Author Unknown

Friday, February 15, 2013

An Afternoon Walk

Today's gift is an afternoon walk.

Our weather this winter hasn't been too bad. We have had lots of cold days, but every now and then we get a teaser of what is to come this Spring. Today was one of those "teaser" days.

When the kids came home from school it was in the low 60's and gorgeous! The kids and I went for a walk.  My two youngest rode their bikes and my daughter chose to be pushed in her cruiser.

My other two know the drill about how far ahead they can ride before they have to stop and wait for me to catch up.  My daughter with special needs loved watching her brother and sister ride ahead.  As they rode...we strolled and talked about everything we saw...birds, dogs, a cat, the trees, cars, friends getting off the bus....you name it, we talked about it.  But the only thing to bring out her laugh was her brother.

He loves to ride his bike really fast and then slam on his brakes making skid marks.  Every time he did this she laughed and laughed.

I enjoyed our outside time today...especially knowing the weather wasn't going to last long (back to the low 40's tomorrow). I enjoyed talking to her and her to me about the things we saw on our walk.   I enjoyed the fresh air and warm sun.   I enjoyed watching her take everything in.  I really enjoyed watching her enjoy her brother's silliness!  I love it when my children bring each other happiness.

Our walk was so simple, yet one filled with lots of love.

Here is a quote for today...

Whoever is happy will make others happy too - Mark Twain

Thursday, February 14, 2013

One of My Sweet Valentine's

Today's gift is she is one of my sweet Valentine's.

I was one lucky mommy today...I had FIVE Valentine's....my husband, my two daughters, my son and the dog!  I was reminded a couple of times today by my son that the dog was also my Valentine.

This morning on our way to PT, I asked my daughter who her Valentine was and with the sweetest little voice she said "Mommy".  My heart melted....not from the face she said I was her Valentine, but from hearing her sweet innocent voice say my name.

At PT my daughter gave her therapist and her assistant a little balloon on a stick with a cute Valentine saying.  She walked right up to her PT with the balloon, started waving it to her and the balloon went flying off the stick!  My daughter started laughing and then said "kaboom"...which then of course had us all laughing...because that is exactly what the balloon did!  I loved seeing her hand out her own Valentine this morning!

While I was putting her to bed tonight, we looked at all her Valentines she received from her classmates.  I loved reading them to her and watching her facial expressions when I would read off a friend's name.  I couldn't agree more with all the sayings on her valentines....you rock, you are my sunshine, your great, you have a great smile....

But I love how one student, who is a good friend of my daughter's took it a step further.  On her Valentine, she had a picture of a dog.  Knowing how my daughter loves dogs...and has one of her own now....she wrote our dog's name underneath the picture, Midnight.  I was touched at how a friend was thoughtful enough to really make her Valentine personal to my daughter.  I think my daughter really liked it too, when I read it to her!

It was a sweet day!

Here is a quote for today....

The giving of love is an education in itself- Eleanor Roosevelt


Wednesday, February 13, 2013

Breakfast Date with Daddy

Today's gift is breakfast date with daddy.

Last week was Dads and Donuts at the girls school.  My husband has taken them before, but it usually is a madhouse.  He doesn't enjoy activities where everyone is standing on top of each other...and neither does my daughter.  So he made a deal with them.  Every year instead of Dads and Donuts, he will treat them to breakfast on another morning...at a place of their choosing.

This morning was their breakfast date.

You never know how my daughter is going to wake up...happy, sad or upset.  Usually it is always happy, but sometimes she throws us a curve ball...just to keep us on our toes.  Today she was all smiles and as I was getting her ready for school I was telling her about her breakfast date with Daddy.  As soon as her shoes were on...she was at the stairs wanting to "go".  Uh oh!

I was so proud of my daughter for communicating how she really wanted to "go", with points and all....but she also has to learn, sometimes you have to wait....a minute or two....and things are not immediate.  She did wait for her jacket to be put on and she did wait for her sister to get ready too...and she did say "go" after each one!  But as soon as she was in the car, she stopped saying "go"....because she knew she was "go"ing!

When she wants to go...she wants to go...and there is no time for waiting.  I was praying she would hold it together long enough to get in the car....and she did!  She was a trooper.  She knew she was going to breakfast with dad and she didn't want to waste one second on anything else.

Forty minutes after they were gone, I received a text from my husband which read "girls were perfect". I was so happy for all three of them!  Going out to breakfast should be a very simple activity; however, in our house you never know which way the Rett wind will blow...


Here is a quote for today....

My fingers may be small, but I can still wrap Daddy around them- Author Unknown


Tuesday, February 12, 2013

Fitting In

Today's gift is fitting in.

The theme for my daughter's school this year is We All Fit In. The one place I volunteer the majority of my time is with the yearbook. I have always loved taking pictures, so this area just feels natural.

This morning I spent two hours at the school taking pictures...from group class photos to snapshots in all the resource classes. I enjoy not only seeing my girls, but all the kids.

But my favorite thing to see anytime I'm at the school is my daughter with special needs "fitting in". Seeing her going and doing amongst her peers just like they are going and doing makes me one proud mom. I love hearing "there is X's mom (rattling off both of my daughter's names depending on which grade level I am interacting with)! I love seeing her enjoying school and knowing she is happy....makes me happy.

Just as much as I love seeing her amongst her peers, I enjoying seeing all the children who have special needs "fitting in" amongst their peers. Not only are the children with special needs learning so much from their peers, but their peers are learning so much from them.

When I was snapping away taking pictures, I realized when looking through my lens I was seeing more. The peers my daughter and all the other students with special needs attend school with are the sweetest, most sincere kids. They cheer on our kids. They enjoy being around our kids. They want to learn more about our kids. They are kids treating their peers just they way they would want to be treated!

One of the sweetest moments I encountered today didn't have anything to do with my daughter. I was walking in the hall to go meet my next class to take their group picture when I saw a young girl in the preschool program coming down the hall walking with her walker with the school PT walking by her side. Lining one side of the hall was a group of second grade boys waiting patiently in line to use the restroom. As this little girl walked down the hall toward this group of boys she was drifting off in their direction...like she wanted to go say hi. I didn't know how the boys were going to react and I was very curious.

There was no staring. There was no whispering. There was no negative behaviors. Instead I heard, "good job", "isn't she cute", "way to go"! I honestly couldn't believe my ears. I was beyond happy to have witnessed this interaction!

While my daughter didn't have anything to do with this moment I witnessed, if it wasn't for her having special needs it would not have touched me like it did or I probably would have kept on walking down the hall. Something today made me stop.

The school theme "We all fit in", couldn't be more perfect for my daughters school. I couldn't be a happier parent on all fronts for having my daughters...one with special needs, one without...be a part of a school which not only encourages all the students to be their best, but teaches them to respect one another and to encourage each other....no matter who you are.

Here is a quote for today...

Those who matter don't mind, and those who mind don't matter- Bernard Baruch

Monday, February 11, 2013

Morning Cuddles with her Siblings

Today's gift is morning cuddles with her siblings.

There is not a better feeling than seeing your children acting incredibly sweet to one another....on....their...own!  I think every time I catch them in the act, I am always taking pictures of "the moment".

Probably, because I do not want it to end.

This morning after I got out of the shower, I looked to see if anyone had made their way into our room yet....and this is what I found....

This one shows all three kiddos

But this one shows all three kiddos....and Midnight on the chair too!

There is no better way to start off your day, than seeing this.  I wanted to jump back in bed with them!  Life is full of little moments....enjoy every single one!

Here is a quote for today...

One of the secrets to a happy life is continuos small treats- Iris Murdoch



Sunday, February 10, 2013

Lights Out

Today's gift is lights out.

I love it when my daughter with special needs has "typical" moments. They make me so happy...they truly do. I especially love it when the "typical" moment happens to be a funny one...like today's.

This evening we had the kids getting ready for their baths and showers. My daughter with Rett Syndrome was waiting for her bath to fill, my other daughter was in the shower and my son was getting his haircut. All of a sudden we hear my daughter who is in the shower yelling for us. Yelling like the house was coming down.

We went running to her and when we got to her bathroom, my oldest daughter...the one with special needs was outside the bathroom door laughing...

She had opened the bathroom door, turned off the lights on her sister and then shut the door again! Then we all started laughing, as this is such a "typical" prank for siblings to play on each other! Loved it!

Here is a quote for today....

Sisters are like different flowers from the same garden - Author Unknown

Saturday, February 9, 2013

The Sweetest Sound through the Monitor

Today's gift is the sweetest sound through the monitor.

Yes, we still have a baby monitor in our room. It is so we can hear my "first" baby in case she needs us in the night. We hear every sound coming from her room and always know when she is waking up in the morning.

Hearing her through the monitor this morning was the best way to wake up. She was laughing! And we have no idea why. Apparently something was funny and she didn't want to share what it is with anyone. Or maybe she was laughing because she knew we could hear her and she was waking us up! Whatever the reason, it was the best sound to wake up to!

There really is nothing sweeter than hearing your children's laughter.

 

Here is a quote for today......

The laughter of a child is the light of the home- Author Unknown

Friday, February 8, 2013

Helping with Midnight

Today's gift is helping with Midnight.

I love how much my daughter enjoys her dog. But what I really like seeing is how she wants to try and help with Midnight.

And today she did!

Midnight was outside and wanted to come in as you could hear him whimpering at the back door. I asked my son to open the door for him. When I heard the door open I looked up as I knew my son could not have gotten to the door that quickly. I was right. My daughter with Rett Syndrome had opened the door to let her dog in!

She opened it just enough for him to stick his nose through so she could keep an eye on him. Then she opened the door all the way and he came walking in wagging his tail. But it didn't stop there.

After he came in, she started to walk away too leaving the door open. Then I asked her if she would close the door for me. Without hesitation she turned, walked over to the door and shut it! And then turned back around and went about her business.

This whole gift only took 3 minutes, but it will be 3 minutes I will always remember! I loved watching her interact "typically" with a "chore" pertaining to her dog. Made. My. Day!



Here are two quotes for today...

If you want your children to keep their feet on the ground, put some responsibility on their shoulders - Abigail Van Buren

The greatest gifts you can give to your children are the roots of responsibility and the wings of independence - Denis Waitley

Thursday, February 7, 2013

Catnap

Today's gift is a catnap.

Lately, I have been staying up way later than I need to at night and of course pay for it in the morning (note to self...GO TO BED EARLIER TONIGHT!!!).  Usually I am ok with it until day 3 or 4 when I start to fall asleep at 4:00 in the afternoon.  Today was that day!

My oldest daughter and son were BOTH up at 4:30 this morning!  She was up, as sometimes she gets up early (and of course the days she chooses to rise and shine at an early hour are on the days she could sleep in as she has PT).  My son had donuts with dads today at school AND he was going home with a friend so he was afraid he was going to over sleep and miss everything!

So this afternoon after a fun day with my mom, I was sitting on the sofa with my daughter and son.  My  mom had taken my middle daughter to gymnastics on her way home.  I was at the point where my eyes would not stay open...there was nothing I could do, but let them close for a little bit.  I grabbed my cell phone to set the alarm in case I went into a deep sleep as I had things I had to do.  I looked over at my daughter and her eyes were getting heavy too!  I was excited as we could both take a quick 15 minute cat nap together.

And we did!

It is amazing how just a quick little nap can give you the energy you need.  I was a little afraid I was not going to be able to wake her up OR she was not going to be happy when I did (both of these happen sometimes), but she was in the best mood.

I would not have been able to drift off to sleep for a little bit if it were not for her drifting off to dreamland too.  Obviously, we both needed a little shut eye!

Here are two funny quotes for today...

I wish there was a rollover plan for childhood naps I refused to take- quote from loveandlife.com

Taking "naps" sounds so childish, I prefer to call them "horizontal life pauses"- Author Unknown


Wednesday, February 6, 2013

Helping Her Rett Sisters

Today's gift is helping her Rett sisters.

When you enter the world of Rett Syndrome you feel all alone. You are scared. You have no idea what the future holds and thinking of the future seems so distant when you need to figure out the present.

Then you meet others who have walked the path before you and those who are still walking. You realize you are not alone, you realize it is ok to be scared, but now you have someone who "gets it", someone who understands, someone you can talk to. You still do not know what the future holds for you, but you are able to grasp the present and move forward...move forward to handle anything that comes your way.

On my relative short journey in the Rett world (6 years), I have learned it is not only the parents who learn from each other, but our daughters living with Rett Syndrome learn from each other. They give each other hope, encouragement, and inspiration. They know when they meet one of their "sisters"...you can instantly see the connection in their eyes. They need each other, just like the parents of the girls need the friendships of the parents.

Today, I received one of the sweetest messages on my Facebook page from another Rett mom. I know she will not mind if I share what she wrote, as she is one amazing mother, woman, and someone I am lucky enough to call a friend. Here is what she wrote..."Thank you for your encouragement on the importance of friends in X's (keeping her daughter's name private) life...you are SO RIGHT!"

It made me incredibly happy to know someone else is enjoying life with her friends like my daughter and someone is learning from my daughter. I also immediately thought of another Rett sister of my daughter's...the one who was an inspiration to us when it came to forming friendships. We would not be where we are without the inspiration and hope from her and I'm so thankful my daughter can be the same inspiration to someone else.

Here is a quote for today...

A strong woman knows she has strength enough for the journey, but a woman of strength knows it is in the journey where she will become strong- Author Unknown

 

Tuesday, February 5, 2013

Partners in Crime

Today's gift is partners in crime.

I can not tell you how much joy our new rescue dog has brought to our family.  He just fits in like he has been here all along.  I love seeing my kids play and interact with their first dog.  Watching my son run around in the backyard with him.  Watching my middle daughter help him learn his new commands from Doggy Boot Camp.  And watching my oldest with special needs just light up when her "puppy" is around.

A part of me is kicking myself that we did not get a dog sooner...especially since we promised her years  ago if she said the word puppy we would buy her one.  But the other part of me knows we were not ready to add a dog into our family.  Timing is everything and this timing was perfect.

We went back and forth whether to get a true puppy who would grow with our family or getting a rescue dog.  I have to say for us, going the rescue route was the best decision....ever.  We were very lucky in finding Midnight at the SPCA.  As I mentioned in a previous post, he had only one owner who passed away and then came to the SPCA.  He is 2 years old.  Since he came home with us on December 9th he has had ONE accident and that is it!  He sleeps just as long as we do too!!  On his first trip to the vet last weekend for his annual visit, our vet truly believes he is a pure breed flat coated retriever!  Bonus for us!

I honestly can say, I could not have dealt with a true puppy and all the work that comes along with them.  As cute as they are....I think I would give the cuteness up.

After his four weeks of training, he is the most amazing dog.  WOW....it truly is amazing to see the difference in him in such a short time.  He just loves the kids, just as much as they love him.  But I have to say, I think there is one he favorites....for one reason.

My daughter with Rett Syndrome and our dog, Midnight, are quite the team.  Whenever she is eating, he comes right over as he knows there is going to be something that falls so he will get a treat too.  And usually the "something" that falls, is more of a throw on the floor by my daughter as she laughs.  But it doesn't stop at food.  She will watch him get in trouble for taking something, say a sock for instance, and then go over and throw another sock to him!  It is the funniest thing to watch!

This afternoon while she was having her snack on the sofa, Midnight was wandering all around.  There was no room for him on the sofa, so he just sat at my daughter's feet.  She was eyeing him and he was eyeing her.  It was like they were speaking in code.  My guess is she was telling him, she has a little pile of crumbs next to her and to wait until someone gets up.

As soon as my middle daughter got up, the dog jumped up onto the sofa and was burying his head all around my daughter licking all the crumbs he could find.  She was laughing hysterically!  He was even sticking his head behind her back, between her and the sofa and wrapping his head around the other side to see what he could find.  This is the best picture I could get with my angle!  And yes, that is his tongue sticking out!


Midnight definitely knows who will give him belly rubs, who will play rough with him, who will keep him following the rules, who will feed him and who will spoil him!  I know we rescued him...but I think he truly rescued us!

Here is a quote for today....

Dogs have a way of finding the people who need them, filling an emptiness we don't even know we have- Thorn Jones

Monday, February 4, 2013

Up, Down and All Round

Today's gift is up, down, and all around.

Wow...my daughter was all over the place today...from first thing this morning till she crashed in bed. She was up...then she was down...she was up....then she was down....then she was running all around.

I think she was super excited to be back at school. She missed her friends, she missed her routine, she missed learning.

Lunch today at school with some of her "besties"!

I am beyond thankful she can be all over the place, trust me. But I also have to be honest and say it is exhausting to watch. I can't just let her be on the loose...well I could if I didn't care about messes and things breaking. So when she is like the energizer bunny, I (or anyone else who is with her) have to be on her. Not just to protect all the "things" but also to protect her.

Tonight before bed, we just let her get the rest of her wiggles out. Her sister was in our bedroom practicing her gymnastics and my daughter loves telling her when to go "up" into a handstand. Tonight was no different...except when my middle daughter went "up" into a handstand, my daughter with Rett Syndrome went "up" too...into a jump on one foot!

She was moving so fast I couldn't get a good picture of her on one foot...this is the best I got.  But you can see it just coming down and her pointing at her sister to tell her to go back "up"!

Every time her sister did a handstand, she would jump up! But it didn't stop there...after about 5 jumps she would run down the hall and then come back....laughing the whole time. I don't know what got into her today or tonight, but it sure was wonderful seeing her want to try to do what her sister was doing, but on her level.

And there she goes running down the hall!

I think it is safe to say, she will sleep tight tonight! And me too as I am exhausted from just watching her....if I could just have half of her energy...



Here is a quote for today...

The future belongs to those who believe in the beauty of their dreams- Eleanor Roosevelt





Sunday, February 3, 2013

Breakfast in Bed

Today's gift is breakfast in bed.

The past two mornings we were spoiled with room service for breakfast. It was so nice having breakfast in bed and truly enjoying every bite and not being rushed.

This morning my husband brought my daughter and I breakfast in bed. What a way to end our weekend together! I could truly get used to breakfast in bed...especially with my daughter by my side. The only reason we had breakfast in bed was because my husband ask her where she wanted to eat...downstairs or in bed. Smart girl for picking in bed!

The best part of having breakfast in bed was after she was done she wanted to stay in bed and cuddle. It was a perfect way to start my day! I never take any of the moments I share with her for granted...and I am so happy she allows me to share so many of these moments with her.

 

Here is a quote for today...

Do it now. The future is promised to no one- Wayne Dyer

 

Saturday, February 2, 2013

Reflection

Today's gift is reflection.

By mid morning today, we were back in the car heading home from my daughter's doctor's appointment. Yesterday we took in all the information she (the doctor) gave us and today on our six hour drive home we were able to reflect on everything.

Before we started talking about everything out loud together I was thinking everything over in my head. There was a lot to reflect on. We did not receive any bad news...which was wonderful. Lots of positive information with lots to think about.

One of my biggest questions going into our appointment was what more can I (we) do to help her communicate more...better. This is what I was thinking about the most as I am the type of person to just jump in and want to make everything happen...overnight. And I know it's going to be an adjustment for all of us...especially my daughter. But one I think will be well worth it.

As I was reflecting on my own, I look over at my daughter who was sitting next to me and she was looking out the window. What I would give to know what she was thinking about?



Was she thinking of everything the doctor said? Was she thinking of the new way she is going to learn to communicate? Was she excited for this new opportunity? Was she scared? Or was she simply just excited to be going back home?

I don't know. And this is why I'm willing to try something new with her...to get a deeper level of communication from her.

We will be talking and thinking about all the information we learned about for a while as everything takes time. But something in my daughter's eyes tells me she is ready...ready for the next step. Just like everything else in life....timing is everything.



Here is a quote for today...

Nothing can dim the light which shines from within - Maya Angelou

Friday, February 1, 2013

Resiliency

Today's gift is resiliency.

We almost didn't make it to my daughter's doctor's appointment today. My poor Pookie got sick at 1:00am and proceeded to get sick three more times. I was praying all night, that come morning she would pull through. And my prayers worked! Thank you God.

I was texting and emailing a new friend who works at the clinic we went to today telling her about my daughter very early this morning. I knew our appointment time was a three hour slot, so I was willing to lose and hour of our appointment to let her sleep in and feel better. And it worked.

She was amazing! She was one tough cookie this morning...and honestly she always is!

I can't think of any other place but my bed I would rather be after vomiting all night. And certainly the doctor's office would be the last place I would want to go. If you saw my daughter today in the doctor's office you would never know she was up all night getting sick. How she pulls through and keeps going at times when I know she wants to throw in the towel is beyond me! It is something I can definitely learn from her.

And to top it off her appointment went extremely well and I'm so thankful we made the trip. We have some new avenues to try with her and I'm really excited to see where things are going to be going for her. 2013 is going to be a great year for her.

 

Here are two quotes for today...

Resilience is the ability to find the inner strength to bounce back from a set back or challenge- Author Unknown

We are born neurologically wired for human resilience. We just have to know how to use it. It's an untapped natural resource - Author Unknown