Monday, December 31, 2012

Daddy's Girl

Today's gift is Daddy's girl.

My daughter is definitely a Daddy's girl!

She just loves being around her daddy...whether it is playing ball, swimming in the pool, snuggling with him watching tv....she loves to spend time with him.  You can not only see it in her eyes, but hear it in her voice!  From the way her eyes light up when she sees him first thing in the morning to the joy in her voice "da-ddeeeeeee" when he walks in the door at night from work.

When you have a child who is non-verbal you learn many things.  One of the most special things you learn is your relationship of few words is rich in meaning!  The ole saying "actions speak louder than words" couldn't be more true for us and our relationship with our daughter.

The time they share together is priceless and each moment is filled with memories...big and little!  2012 was filled with new adventures for both of them, with rides in her Wike behind her daddy's bike being one of her favorites.   I can't wait to see what new experiences 2013 brings not only for our whole family, but for a daddy and his little girl!

Here is a quote for today....

My prince did come, his name is Daddy- Author Unknown

Sunday, December 30, 2012

An Appropriate Response

Today's gift is an appropriate response.

I love it when I ask my daughter a question and she responds immediately back to me. I know she understands what I am saying to her at all times. So times like these just confirms what I know!

Tonight at dinner I was asking everyone if they liked the new raviolis I made and without hesitation (and a bite full in her mouth) she gave a loud "YA" which is her "yes". I said, "thank you Pookie". And then everyone else gave their seal of approval too!

I know she really liked the new pasta dish without a doubt as she was asking for "more" before she was finished with the bite in her mouth!

Having "typical" moments like these with my daughter makes me feel like a "typical" mom. More importantly, having "typical" moments like these just re-iterates to me she is just fine inside her beautiful mind! Unfortunately, it is hard for her to come out of her shell sometimes due to her living with Rett Syndrome. Having moments like these is one of the many reasons why we must continue to fund research to find a cure (which for those of you who do not follow Rett Syndrome research updates, research has come a long way in a short amount of time and they are so close to treatments or a cure!).

I want to have lots of true "typical" moments with my "typical" child one day. If it is when she is 16, 26, 36...whenever....I just want to have them with her, without Rett Syndrome getting in the way!

Here are two quotes for today...

Can you imagine what I would do if I could do all I can- Sun Tzu

Maybe one day we'll find the place where our dreams and reality collide- Author Unknown

Saturday, December 29, 2012

Hearing the word "Mommy"

Today's gift is hearing the word "Mommy".

Today was not the first time my daughter with Rett Syndrome has said, "mommy".   I am very blessed with the fact she never lost this word when she went through her regression state.  On a daily basis she will probably say my name at least 100 times, if not more.  And not all the "mommy's" have the same tone in her voice.

This is today's gift because as we were settling down for the night, she just kept saying my name so sweetly. Over and over again. A couple of times they were followed by a giggle or two, but for the most part it was a heartfelt "mommy".

I love hearing her say my name, it is one of the sweetest sounds.  But I have to admit, after the 15th "mommy" in a row, I tell her I hear her, but I'm not going to keep responding right back.  Honestly, she could get to over 60 in 2 minutes! Trust me, I counted and timed it once!

I am truly blessed to be able to hear not only my child's voice, but also to hear her say my name.  So many of my friends who have a daughter with Rett Syndrome or another type of special need where their child is nonverbal, do not hear their child speak or hear them say "mommy". I honestly can not imagine not hearing her say my name as I have heard either "ma", "mama" or "mommy" her whole life.

My heart aches for my friends who would love to hear this one little word.  I pray one day they all hear the one word I know would melt their hearts!  Even though their loved ones can not say it verbally, I know they are telling them in other ways a "mommy" only knows!  Or a daddy too!

"Mommy" one little word filled with lots of love and one little word I will never take for granted.

Here is a quote for today....

There will be so many times you feel like you've failed. But in the eyes, heart, and mind of your child you are super mom- Stephanie Precourt

There is nothing greater than a Mother's love- Author Unknown

Friday, December 28, 2012

Learning a New Game

Today's gift is learning a new game.

As you know by now if you have been following my blog, my daughter loves to play Connect 4. I want her to play whatever game is going to make her happy. If it is always the same game, so be it.

However, for Christmas she received a new game as we always will continue to introduce new games to her as you never know if she will be interested in something different. I would love for her to have a choice of games she enjoys playing, on her own, instead of just one.

The new game is called Tic Tac Toe Toss Across. It is a large Tic Tac Toe game where you throw mini bean bags at it and it swivels to X's or O's and you try to get three in a row.

This game is right up her alley as she loves to toss bean bags. It is a favorite game at therapy. However, just like anything new it will take time and lots of repetition for her to enjoy it like her favorite game. Her love for Connect 4 or the iPad didn't happen overnight either.

Every day since Christmas we play this game at least once to get her used to it. Today was no different. She is a little trickster when we play. She will throw the bean bags all gently so you will move the board a little closer and then she throws the next one as hard as she can spinning them around three at a time or the bean bag lands clear across the room! Sometimes I think the act of throwing is what she enjoys most about this game right now!

I will not give up on her new game and I know it will just take time. She may never like it like Connect 4 and that is ok, I just would like to have a back up game for those long days home.

Here are two quotes for today...

You don't have to see the whole staircase, just take the first step - Author Unknown

Tell me and I forget, teach me and I may remember, involve me and I will learn- Benjamin Franklin

Thursday, December 27, 2012

Drinking from a Cup

Today's gift is drinking from a cup.

Holding your own cup and drinking from it is something we all take for granted....every day.  We just do it without thinking about it.

However, to some people, like my daughter with Rett Syndrome drinking from a cup on her own is a skill which took a long time to gain and she could still struggle with it.  Some people can not hold their own cup and may never gain this skill.

She mastered this skill again after her regression period of Rett Syndrome many years ago and it is something she does every day now.  But for some reason today seeing her grab, hold, drink from her cup and then place it down again, hit me a little harder.  Meaning, how something so simple requires her to work really hard to master the task.

At the same time I'm feeling a little sad for her, (as she should be able to do everything freely if Rett never entered her life), I'm so excited for her....excited because she can drink from a cup.  All. By. Herself!

When someone you love faces realize everything they can do is a gift.  Everything they can do requires hard work from them.  Everything they can do we take for granted.

The next time you drink from a cup think about the 12 year old girl who is still trying hard to learn this skill, or the 23 year old woman who will never be able to hold her own cup or the 10 month old little girl who is able to hold her bottle now, but whose parents haven't found out yet their daughter has Rett Syndrome (as signs haven't started to appear yet) and one day she will lose this skill. Any one of the situations could happen and do happen daily in the world of Rett Syndrome.

Here is a quote for today...

The things you take for granted someone else is praying for- Author Unknown

Wednesday, December 26, 2012


Today's gift is spelling.

We had a pajama day as it was cold and rainy and there was no need for us to leave the house. I wish my husband could have been home too, but he had to go to work least he can come home a little earlier.

Our lazy day was filled with playing games, watching movies, eating cookies, snuggling with our dog, addressing our New Year cards, playing on our iPads/iPods/iPhones and everything in between.

I love watching my daughter on her iPad. As she hits each button she also hums and makes noises as she is talking back to her iPad. I remember when she first got her iPad it took her a little bit to get used to the "swiping" motion needed to operate pages. She was good at swiping in general, but this new type of swiping she needed to learn.

Now she can navigate through her iPad better than me some days! Today she was playing a spelling game called FIrst Words Sampler. A picture will come up of with a word and the letters for the word will be randomly placed on the page. Then you have to drag the letter to the letter under the word and if you match correctly it stays in place. When the word is spelled correctly the picture of the object does a littl dance.

While my daughter was playing this she was talking up a storm saying all the letters she saw and if she knew the word she would say it too! She would also drag the letters to match them. Half of the time she got it, then other half she needed a little assistance.

She was having a great time talking and spelling for me. I know she was truly enjoying sharing her knowledge and love for learning with me!

Here are two quotes for today...

Learning never exhausts the mind- Leonardo da Vinci

The beautiful thing about learning is that no one can take it away from you- BB King

Tuesday, December 25, 2012

A Very Merry Christmas

Today's gift is a Very Merry Christmas.

Happy Birthday Jesus!  What a day to celebrate!

Merry Christmas to all of you!

Today was the first Christmas in at least three Christmases where my daughter with Rett Syndrome did not get upset on Christmas morning!  This right here is a gift!!!

Every Christmas our kids get up SO early....wait what am I saying this is every morning!  Of course when they get up they want to run downstairs and see what Santa brought them....what kid wouldn't want to do this???  In the past, our oldest has not been awake when her siblings are ready to go downstairs, so we wake her slowly as we do not want to go down without her.  In doing so, somewhere between opening stocking stuffers and breakfast she gets upset, which makes us all upset, especially on Christmas.

This year I told the kids, no matter what time they come into our room we were not going downstairs until their sister was awake.  And they completely understood why without me having to say a word.  They wanted their sister to be happy on this special day!  I also mentioned how her waking pattern has been early, so they probably didn't have anything to worry about.

And I was correct!

I heard my youngest two around 5:30am and at 5:50 my oldest walked into our room.  However, the other two didn't figure out she was awake until 6:45 so we got a little extra shut eye!!!

Seeing my children's expressions when they see what Santa has left for them warms my heart.  A child on Christmas morning is one of the sweetest moments to remember!

And this Christmas morning, December 25th, 2012, it is definitely one to remember as our daughter did not get unhappy and was all smiles!!!!!  Her siblings were praising her all morning as this was special to them too!

The whole day was opening presents, spending time with family, eating good food, playing with our new dog, face-timing family who could not be with us and every little moment in between.   Without a doubt, this was one of the best Christmases for me personally in a long time!  And I think it was one of the better ones for my daughter too....I could just tell by the sparkle in her eye!

Here are some quotes for today...

May the spirit of Christmas bring you peace, the gladness of Christmas give you hope and the warmth of Christmas grant you love- Author Unknown

The best of all gifts around any Christmas tree is the presence of a happy family all wrapped up in each other- Burton Hills

The magic of Christmas is not in the presents, but in His presence

Monday, December 24, 2012

Christmas Eve Service

Today's gift is Christmas Eve Service.

Tonight's gift is very special to me for many reasons.  I grew up going to church regularly and I vividly remember going to the Candlelight Services on Christmas Eve.  I loved them!   There is something about being in church singing Christmas Carols that makes you feel like you are in the right place at that moment.

I can not tell you when the last time we went to church on Christmas Eve or Christmas Day was...probably at least six years ago.  I can't even believe it myself!  However, tonight we celebrated our first Christmas Eve service at our new church.

What a lovely service it was!  It was not a candlelight service (as we are not there yet, time wise with the kids!), but a Family Service.  The decorations were simple and beautiful.  The short sermon really touched me.  Our pastor was talking about how we are all God's children and the only person we need to please is him, not anyone else.  At the end of his sermon he said when we walk out of church there will be pieces of cardboard for all the children to write or draw a picture of a gift in which God has blessed them with.....and then they were to place them in a manger.  I thought this was one of the most beautiful things to help all the children realize how special they are and how everyone has a gift.

I helped my daughter write hers and her gift was how since she is non-verbal and faces challenges daily, her gift is she is an inspiration to others.  I could have said so many things, as we know she has so many gifts....right, but tonight, I thought the most fitting one was how she is an inspiration.

Tonight's service was extra special for us too as it was not only our little family of five, but also my mother in law AND my daughter's teacher/one to one in school and her husband.  Having them there meant the world to us.  My daughter was so excited to see them.  She greeted them by name and hug smiles!  She was a rock star again in church.  She loves our church and the music!  I loved how they were able to see her in our place of worship.

I could not have thought of a better way to spend Christmas Eve, than the way we did tonight.  The sermon was short since it was the Family Service, but exactly what we needed to hear.

Here are some of the songs we sang tonight....

Joy to the World
Little Drummer Boy
Oh Come All Ye Faithful
Angels We Have Heard on High

There are no quotes tonight, as I would like you to reflect on what gifts God has given you and what gifts God has given your children.

Merry Christmas Eve!

Sunday, December 23, 2012

Going off her routine

Today's gift is going off her routine.

I can't believe it is TWO days before Christmas.   Seriously, where has the time gone?  I feel like it was just Thanksgiving and I had all this time.  Maybe it was the fact I had one child home with me with the flu the last week of school for three my time to get things done was shortened a little.  Life goes on...

I have to say we had a fun weekend.  Lots of quality family time together, which I love.  Tonight we promised the kids we would go out to eat for dinner.  Right as we were getting ready to walk out the door, we had an unexpected visit from our good friends.  It was so nice to see them and catch up!  I was hoping my daughter (who is on a schedule with eating) would not start to get upset when we had to push back dinner.  I didn't think it was going to be an issue as she loves the family who came to visit and was all giggles and grins the whole time they were here!

We visited with them for about 45 minutes and then we had to say, we have to get the kiddos some dinner before we loose them.  They completely understood as they know the shoes we walk in all too well.

Once in the car, we decided to change the restaurant we were originally going to go to as we needed to go someplace closer.  Luckily for us, the restaurant we decided on second, was not crowed at all and we had our food with 15 minutes of being seated!  All the kids were super patient!

After dinner we drove around looking at Christmas lights and even saw what we think was a coyote as it was bigger than a fox....and definitely was not a dog!  However, it does sound strange to say we saw a coyote, so maybe we should stick with the fox.  Whatever it was, it was fast!

While we were still out looking at lights it was the normal time we would be getting the kids ready for bed.  I was hoping my daughter would not get upset and she would be happy all the way up till bed time tonight.  She was laughing up a storm in the car!  She was having the best time!

We even stopped and let the kids get a "little" treat at their favorite frozen yogurt place!  They were all very happy!

By the time we walked in the door, it was one hour past the kids bed time.  Now for most people, you are probably thinking what is the big deal.  And for our youngest two it isn't.  But for our oldest, with special needs, she is very schedule/routine driven and thrives being on one.  So the slightest change in plans can sometimes make her upset.

However, tonight she was a rock star!  She was happy from the moment she walked into our room at 6:20am till the moment she fell asleep at 9:20pm!  I love how tonight we were able to "go with the flow" just like a "typical" family and not have any backfires!

Here is a quote for today...

It always seems impossible until it's done- Author Unknown

Saturday, December 22, 2012

Playing the Christmas Song Game

Today's gift is Playing the Christmas Song Game.

I don't know about your kids, but my kids are wired!  They are so excited about Christmas!!  They are literally bouncing off the walls!  If I don't try having some fun down time with them I think I'm going to loose my mind.  

As you know from a previous post I love Christmas songs!  Tonight at dinner we played a made up (by me) Christmas song game.  You had to sing part of a song but the part you sang could not have the title of the song in it.   

For example, for my first song I sang..."....with every Christmas card I write.  My your days be merry and bright.....".   Immediately my son said... "White Christmas!"  He was correct.  When it was my oldest daughter's and husband's turn he of course went with the one song she can help sing...and it's her favorite.   My other two knew what it was going to be, but we told them to let her say it all the way first.  They were hot to jump on the answer before we even got the fourth word out! 

It was so precious!  My husband started the song..."...had a very shiny" and my daughter said "nose".  Then he said, "if you ever saw it, you would even say it", and then she said "glowed!"   My youngest two went wild and said "Rudolph!"  My daughter lit up and was so proud of herself!!!

I love it when we can play a game and I can find a way to include her.  Sometimes it is hard, I will not lie.  But the reward is so worth it!

Here is a quote for today...

I wish we could put up some of the Christmas spirit in jars and open a jar of it every month- Harlan Miller

P.S. I was having a glitch with Blogsy last night and posting....if you did not read the post titled, No Behaviors, I have attached it below.  Enjoy!

Post from Friday, December 21, 2012

Today's gift is NO behaviors........


I honestly do not think you could possible know how incredible this is for her! I am beyond proud of her progress not only academically, but personally. She has come so far since her diagnosis 6 years ago.

Now if we can figure out how to make all behaviors at home disappear too. However, in saying this she has come amazingly far with her behaviors at home too! Where we used to be and where we are now are worlds apart, but of course we always wish for more.

On days like today, it makes me stop and realize how far she has come since her dreams were altered when the Rett monster entered her life. Days like today make me stop and truly appreciate all she has overcome to get where she is today. Days like today I will always remember, even when the next great thing happens.

I know one day we will be behavior free, just like I dreamed of behaviors coming out only occasionally every month. I am so proud of my little ninja for ending 2012 at school on a great note! I can't wait to see what progress she makes in 2013!

Here are two quotes for today....

 Challenges are what makes life interesting; overcoming them is what makes life meaningful - Joshua J. Marine

Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow- Author Unknown

Friday, December 21, 2012

No behaviors.....

Today's gift is NO behaviors........


I honestly do not think you could possible know how incredible this is for her! I am beyond proud of her progress not only academically, but personally. She has come so far since her diagnosis 6 years ago.

Now if we can figure out how to make all behaviors at home disappear too. However, in saying this she has come amazingly far with her behaviors at home too! Where we used to be and where we are now are worlds apart, but of course we always wish for more.

On days like today, it makes me stop and realize how far she has come since her dreams were altered when the Rett monster entered her life. Days like today make me stop and truly appreciate all she has overcome to get where she is today. Days like today I will always remember, even when the next great thing happens.

I know one day we will be behavior free, just like I dreamed of behaviors coming out only occasionally every month. I am so proud of my little ninja for ending 2012 at school on a great note! I can't wait to see what progress she makes in 2013!

Here are two quotes for today....

 Challenges are what makes life interesting; overcoming them is what makes life meaningful - Joshua J. Marine

Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow- Author Unknown

Thursday, December 20, 2012

Winter Parties at School

Today's gift is a fun winter parties at school.

Wow, my daughters had a fun day at school as they both had their winter party!  Actually, my oldest celebrated in two classes today.

It is really hard as a parent to split your time between two class parties which happen at the same time. My oldest was supposed to celebrate her parties tomorrow, but both of her teachers switched them to today....three parties, two at the same time and one mom.

Luckily, my oldest had her mainstream winter party at 10:30 this morning!   Yes, a party bright and early.  Her class had a Winter Wonderland theme complete with ice cream sundaes and Frosty the Snowman movie.  Nothing like starting your day with a sugar boost!  Thankfully, my daughter's one to one knows not to give her much more than a taste, especially this early in the morning.  And having two parties in one day makes for eating a lot of junk food!

I loved seeing my daughter in her mainstream class interacting with her typical peers.  She was enjoying the party just as much as them and didn't care if she just had a little bit of ice cream.  Being around her friends was more important to her.

Every year I go to all her class parties and pray she is having a good day and will make it to the party.  I remember last year at this time she was having a rough day and only attended her party for a very short time.  There is always a part of me which worries every year as I walk to her class....but this year she made up for last year too!  She was perfect!

This afternoon she had her Autism Class party at the same time as my other daughter's party.  I knew I couldn't be at two places at once so I chose to go to her mainstream class party instead....and the early time helped too!  However, I still contributed to this party as well.

I arrived to school early before the afternoon parties started and decorated the table for her afternoon party to look like a winter wonderland with snowflakes and snowmen.  I set all the kids place settings and put all the goodies out for them.   I know they were going to have fun, but I had to split my be fair to both girls.

While she was enjoying her second party of the day, I was a photo booth photographer for my other daughter's party.  Being a part of both parties was not only memorable for them, but me too.  Seeing the joy beam from both of their faces as they celebrated with their friends made my day.

What a wonderful way to kick off Winter Break!

Here are two quotes for today....

Happiness is only real, when shared with-  Into the Wild

A friend is someone who accepts your past, supports your present and encourages your future- Author Unknown

Wednesday, December 19, 2012

Cleaning Up

Today's gift is cleaning up.

I'm sure everyone knows this song or a version of it....

Clean up, clean up, everybody everywhere.  Clean up, clean up, everybody does their share.

If you follow my blog you probably know by now my daughter loves to play Connect 4.  It is one of the view things I can sit her down with to do completely on her own so I can have five minutes of uninterrupted time to get something done.  Once in a while, I will get lucky and it could be 20 minutes, but on average it is five.  When she is done playing she will either leave it and walk away OR she will throw the base and all the pieces go flying all over the place.  The second is more fun so this one is often her preferred choice!

Right before dinner I had her playing so I could dish out dinner and get everyone to the table.  Seconds before I was going to call her into the kitchen I hear the sound of something crashing to the ground....almost like glass breaking.  However, I knew exactly what it was!  We just left it knowing we will pick it up after dinner and before Midnight comes back into the house.

While I was cleaning up the dishes I asked my two youngest to pick it up for me.  As soon as they started to pick up all the pieces, my oldest daughter joined in the fun.  She started picking up the pieces and putting them back into the box too!

It was incredibly sweet to see her cleaning up after herself.  The expression on her face showed she felt bad her siblings were picking up after her...again.  The expression on their faces was one of pure joy as they were so excited their big sister was helping them clean up!

Fluke, new habit....whatever it is I will take t!

Here is a funny quote for today....

I love cleaning up messes I didn't I became a Mom- Author Unknown

Tuesday, December 18, 2012

The Little Things #5

Today's gift is the little things #5.

This afternoon my middle daughter (she has been home so far this week with the flu!), son and I picked up my oldest from school.  On the way home I had to run through the drive-thru at the bank.  When we were pulling out of the drive-thru lane I hit the brake suddenly my accident causes the car to stop suddenly.  Which lead to lots of laughter from the back seat!

My husband would say, this is my driving.  I on the other hand have to disagree.  However, my passengers thought it was hilarious and wanted me to do it again...and again...and again.

My oldest daughter was laughing nonstop and saying "e" constantly.  I wish I knew exactly what "e" stood for...but at this moment I knew it had to mean she didn't want me to stop!

Of course I know my car probably didn't like my constant breaking, but the deep belly giggles were winning!

Hearing all three of my kids laughing from the backseat made me smile from ear to ear all the way home.  I loved how they were all laughing at the same thing and sharing in the moment together.  Every time my youngest two would say "do it again", my oldest would say "e, e" she was agrEEing with them!

To most people this was just silly fun in the car where the kids were laughing.  To me it was the fact my daughter understood this was funny.  She wanted me to do it again and again.   She was enjoying the moment just like her brother and sister and she was indicating so verbally (even if I didn't understand 100% what "e" meant, I definitely knew it meant she was happy, excited and she wanted me to repeat what I just did).  She was enjoying the moment.

Luckily no one got stomach sick and no one rear-ended was all safe fun!  I was very careful to make sure no one was behind us when I would break.

I love moments like these today.  The ones that are spontaneous.  The ones that are fun.  The ones that make you appreciate the little things.

Here is a quote for today....

Your smile tells me more than words will ever say- Author Unknown

Monday, December 17, 2012

Functional Hand Use

Today's gift is functional hand use.

My daughter does the stereotypical hand wringing associated with Rett Syndrome, practically all the time...unless we have her hands busy. We try to have her hands busy to retain functional hand use. Whether it is dribbling a ball, playing Connect 4, flipping through the pages of books and magazines, we try to keep them going.

Today she was on fire showing functional hand use for me...on...her...own!

She was opening the refrigerator door many times, she ate her pretzels on her own, she pointed to her snack to indicate she wanted more, she lifted the blinds to see Midnight outside, she opened the door to let Midnight in the house, she played connect 4, looked through her yearbook, turned the tv on...and of...and on..., she cruised through her iPad swiping to change pages and pressing buttons to change apps, and she pointed to the book she wanted me to read to her. I am sure there are many more I'm missing too!

There were two times today which were my favorite! They both happened at bedtime. Every other night (or the nights I put her to bed) I cover my daughter's hands in Bag Balm and put gloves on them to help keep her hands soft and help the sores she has developed from wringing so much. Putting gloves on her hands is not the easiest task in the world, especially when she wants to wring her hands. However, just like everything else she learns through constant repetition. Tonight when I grabbed the gloves to put them on her she held her hand right out for me! This was the first time she has ever done this for me! Trust me, this made the whole experience so much easier.

Right after this we were reading her story and she reached over with her hand, placed it on my cheek which was away from her, turned my head towards her, said "mommy" and gave me a kiss! And then she did it a couple more times!

I loved it when she is so loving. It melts my heart and makes me want to stop time to enjoy for a long time. But since I can't stop time, I will hold onto all these memories forever!

Here are some quotes for today along with pictures of my daughter's hands....

A mother is she who can take the place of all others but whose place no one else can take - Cardinal Mermillod

The touch of a Mother's loving hands can inspire children to greatness- Kim L.

A daughter is one of the most beautiful gifts this world has to give - Lauren Atherton

Here is what her handwringing looks like

This is her picking apples for the first time this fall

Playing ball

Typing on the keyboard for homework

Walking down the street with her sister

Sunday, December 16, 2012

A game of Connect 4

Today's gift is a game of Connect 4.

We had a very laid back day today as my middle daughter was not feeling well at all. I have to admit I love lazy days, but when no one is sick! They make you take a deep breathe and enjoy the moment. Enjoy each other. Enjoy the slow pace.

After lunch I took my middle daughter to the after hours kid clinic we have nearby to get a confirmation I already knew....she has the flu! More lazy days ahead.

With the tragedy in Connecticut on Friday and my daughter having the flu we decided to treat the kids to a reverse where you eat dessert first! Our whole weekend was all about the kids (and our new 4 legged addition!). The kids loved the special treat!

While I was cooking our "real" dinner our family of 5 ( plus Midnight ) was sitting in the family room time. And my oldest daughter and I enjoyed a couple of games (her style) of Connect 4.

I love watching her play Connect 4 because when she does she is at peace. She is enjoying a typical game like a typical child. She is not wringing her hands, but instead using her hands functionally! She is happy.

She plays Connect 4 often....very often. At first we would try to get her to try other games, but she loved this one so much. We decided it was better for her to enjoy herself and keep her hands moving than introduce new games she doesn't seem to like playing. Of course we keep trying, but we are ok if she is not interested.

I used to love playing Connect 4 when I was younger so it makes me happy too to know she enjoys a game as much as I did when I was her age!

Here are a couple of quotes for today...

If you're wasting time having fun, you're not wasting time- Tim Ferriss

We didn't realize we were making memories, we just knew we we're having fun- Author Unknown

Saturday, December 15, 2012

Successful Santa Brunch

Today's gift is a successful Santa Brunch.

Every year we go to Santa Brunch at the same place and see the same Santa.  This was 11th year with this Santa!

What I love about him is he truly looks like Santa...the Santa I envision.  He has a kind, gentle soul.  He always remembers my daughter....year after year and she always remembers him.  She loves sitting on his lap, just like her brother and sister.

I don't think our family should call it "Santa Brunch" as we get there so early...7:45am, early!  We see Santa, eat breakfast, the kids get their faces painted and balloon animals made and we are on our way home by 9:30am. It is what works for us.  It is what makes us be able to continue this Christmas tradition.

I look forward to this day every year. The day my daughter believes just like all the other children.  The day my daughter truly gets a sparkle in her eye when she sees Santa...the same Santa from last year, and the year before and the year before...

Knowing she and Santa remember each other makes the whole experience...for her.   She isn't anxious, but relaxed and happy.  She truly has the Christmas spirit for she truly believes.

Here is a quote for today and some pictures..

To believe in making wishes and have faith they can come true, To believe that you can find some joy in everything you do, To believe in giving gladly for no reason, just because, To believe in love...that's what it means to believe in Santa Claus- Author Unknown

Friday, December 14, 2012

A Betsie Sandwich

Today's gift is a Betsie Sandwich.

I was having a great day today up until about 1:00 when my mom called to tell me about the shooting at Sandy Hook Elementary in Connecticut.  Ever since the phone call I have felt sick to my stomach.  There simply are no words.

I could not wait to go pick up my girls from school.  I just wanted to have all three of my children at home with me.  Safe.  My heart aches for all the parents who lost their child today.  My heart aches for all the families of the other victims at the school.  My heart aches for all the children who witnessed this tragedy today and are afraid.  My heart aches for the whole town of Newton.  My heart just aches.

My heart aches and my head is full of questions, with the biggest one being, why does things like this have to happen?

Do you ever realize when you are feeling down, there is often someone who notices who will do something, even the smallest thing to try and lift your spirits?

Tonight, my girls ended their bath/shower at the same time and when my oldest daughter and I walked out of her bathroom, my other daughter was walking out of hers and said "great timing."  We met in the hallway and I hugged them both very tightly (again...I think I hugged all my kids 100 times since they were home from school!) and told them how much I loved them.  We were positioned almost like in a triangle, where my middle child was in the middle.  Right when I was reaching down to kiss my middle daughter, my oldest daughter bent down to kiss her too.  Immediately, I said, "it's a Betsie sandwich!" and the girls giggled.  And then my oldest kissed her sister again.

I needed this gift tonight.   I needed to feel the love.  I needed to find the color.

Here is one quote for today....

Don't wait until it's too late to tell someone how much you love, how much you care- Author Unknown

Also for today I am attaching a pray from Nicole Unice, one of the Ministry Associates at our church...

God of all comfort, we come before you with humble, silent, hearts. You gave us tears so that we can mourn and we cry out for you to pour out your loving, warm light on the many so deeply affected today by the Sandy Hook Elementary School shootings. For those who lost children today, would you gather them to you, for you promise that “those who mourn will be comforted.” For the children who have been traumatized by these experiences, would your healing light penetrate their souls and speak deeply into them, about the truth of the protection of their spirits and the reality of heaven. For the family of the shooter, we ask you to draw them close to you. And we thank you God that you are a God who remembers, you are a God of justice, and that evil will not have the final word in this earth, and that no matter what happens to us, our souls find rest in you, and they are secure in you. Help us to turn back to you as a nation, to take action to protect those who are suffering in their minds and souls, and that we would not “be overcome by evil, but overcome evil with love.” (Romans 12:21)

Thursday, December 13, 2012


Today's gift is kaboom.

I have no idea what this word means or where it came from, but my daughter thinks it is the funniest word. I know there is a cleaning solution whose name is Kaboom and the foam is purple....but that is not what I'm talking about.

Everyone who knows my daughter, knows this word will get an automatic response from her. It is one of the words she says and you have to act silly while saying the word back to her. For a while kabooms were taking over and we had to not respond when a kaboom was mentioned. Since taking the break from kaboom, we can use it again in our rotation of words to make her laugh.

Tonight when I was putting her to bed (which by the way is one of my favorite times with her), I hopped into her bed and covered us up with her covers so all you saw were our heads sticking out and got really close to her face. We stared into each others eyes and then she made the move to kiss me. I closed my eyes as I wanted to see if she would say something to get me to open them. Immediately she started saying the two words we say to her to get her to and kaboom.

Every time she would say kaboom I would open my eyes fast and she would start laughing the deep belly laugh. There was something about her laugh tonight, which made me realize this word kaboom was my gift today.

Maybe it was simply, this word makes her laugh. Hearing her laugh means she is happy. And I love nothing more than seeing her happy.


Here is a quote for today...

You can't deny laughter, when it comes it plops down in your favorite chair and stays as long as it wants- Stephen King

Wednesday, December 12, 2012

Her love for her "puppy"

Today's gift is her love for her "puppy".

To say my daughter loves having a dog in the house is an understatement. Whenever she can not see him, she is off looking for him.

Today when I picked her up from school she was looking in the back of the car in great detail to see if he was in the back. When she noticed he was not there she said, "puppy". I told her he was at home. Once we pulled into the driveway, it was "puppy, puppy, puppy".

I had him outside a lot today to see if it helped with his jumpy behavior by not putting him in the crate ( it did a little), so as soon as we walked into the house she was off searching for him. When I told her he was outside, she made a beeline for the backdoor to look for him.

In between having her snack, playing connect four and watching tv, she would keep getting up to check on him. It was so cute to watch her lift up the blinds to find him!

Seeing her "keep an eye" on her "puppy" made my day. I know it is an adjustment for all of us, including Midnight, but it has only been 72 hours! We are doing pretty good considering....but we still have training to do. We are still waiting for someone to call us back (did I mention I do not like to wait...) and I hope we hear back soon so we can have a game plan with his training.

Midnight is such a sweet dog and I can't wait to see how amazing he is going to be with some training!

But until that day comes, I know we made my daughter's year when we brought Midnight home on Sunday!

Here are some quotes for today....

Animals are such agreeable friends, they ask no questions, they pass no criticism - George Eliot

The average dog is a nicer person than the average person - Andrew Rooney

And because I love humor....

How to handle stress like a dog...if you can't eat it or play with it, than pee on it and walk away- Author Unknown

Tuesday, December 11, 2012


Today's gift is hope.

The word "hope" truly is special to me.

First, and foremost, hope is what my daughter gives me every day. She is my inspiration. She shows me what can be done if you believe.

Second, Hope, is the name of the therapy center where my daughter receives physical therapy weekly. At Hope, they give her just that....hope....hope she will thrive, hope she will one day not need physical therapy, and PT will become personal training.

And lastly, Hope, is the name of the Church we attend. Hope Church is the place where we all can relax and know everything will be okay. Hope Church is the place where we know faith will join hope and together they will help us on this Rett Syndrome journey and any other challenges we face.

As you know from my previous post, Christmas came a little early for our kids. Our dog, Midnight, is super sweet and the kids light up when they see him, especially my oldest. She has waited so long for a dog. However, Midnight, wants to a jumpy, happy way, later in the afternoon and they do not like this. I can't blame them and my oldest doesn't really understand, so I have to protect her. But in dealing with this I have hope....

I know we too shall get through this phase. I know we will because I believe with the proper training Midnight will be perfect. He needs someone to believe in him, just like my daughter has someone who believes in her. He has had one owner, who became ill and passed away, then was taken to the SPCA and now us. I can only imagine how much energy he has to get out of his system, but unfortunately, the kids do not understand.

Emails have been placed to find the "dog whisperer" so Midnight can be the pet we know he can be for our family. People who believe in my daughter everyday give her and us the hope we need. Now it is our turn to believe in Midnight.

Here are some quotes for today....

When the world says give up, hope whispers try it one more time- Author Unknown

Hope is faith holding out its hand in the dark- George Iles

Where hope grows, miracles blossom-  Elra Rae

You will feel fulfilled  when you do the impossible for someone else- Author Unknown

Monday, December 10, 2012

"Go up B"

Today's gift is "Go Up B".

You are probably thinking, what in the world is "go up B"?

Well, first "B" is what my daughter calls her sister as she can not say her whole name.  And second "B" takes gymnastics.  My daughter loves watching her sister practice at home and her favorite is a handstand.

Every day B practices her handstand (as we know "practice" well in this house) and her sister laughs every time she does one.  B is a very good teacher to her sister and knows when to make her practice her words she knows and will not give in to what she wants until she says what B is asking her to say.

Tonight she wanted B to do a handstand, so B said, "what do you want me to do"
....and she responded "up".
B said, "you can say more than that"
.....and with prompting from me, I said "what do you want B to do"
....and she said "go"
....then I said "go where"
....and she said "up"
....then I pointed to her sister and she said "B".

Then we made her say it all together before B would do the handstand.  So we looked at her and pointed to B and she said on her own " Go up B"!!!!  And B went up!

Immediately when B came down, she said "mom, I know what you are going to blog about tonight" daughter knows me all too well.  I said, "yes I am, because you both made this gift special for me....because without you this gift would not have been possible".

I love how we take ordinary moments in our house, ones which are going to happen anyway, and turn them into a teaching where the teaching is fun!

Here are two quotes for today....

The best teachers teach from the heart, not from a book- Author Unknown

The art of teaching is the art of assisting discovery- Mark Van Doren

Sunday, December 9, 2012


Today's gift is in the "word" puppy.

Our daughter has always had a love for cats and dogs. When she was younger we said to her, "if you say the word puppy, we will get you a puppy". Well...she has been saying "puppy" for three years. And no puppy. Also to note all dogs...true puppies to grown dogs are all "puppies" to her.

The timing of her saying "puppy" and us actually getting a "puppy" was not the best.

However, with Christmas sixteen days away we couldn't think of a better time to get her and our other two children a "puppy".

We went back and forth between a puppy and a rescue dog...pros and cons...for our family. While puppies are adorable, the amount of time to house train them is not something we could commit to right now. Getting a slightly older dog who is house trained seemed like a better option for our family. Once this decision was made we started looking.

Our search ended this weekend when we met Midnight. As soon as we saw him and said his name, his eyes lit up, he started wagging his tail and walked over to us at the end of his cage. My daughter immediately said, "puppy", and he started to lick her hands.

When we spent time with him in the puppy lounge, his personality came out. He was fun, loving, gentle and so handsome. The kids loved him and my oldest didn't stop grinning from ear to ear. I think she was just as happy as he was. He is a handsome golden/lab mix, but as his name hints he is black.

His name was perfect for our daughter too as she can say "night", and "m" words are easier for her to say. I know with repetition, repetition, repetition she will be saying "midnight" before too long!

We put a hold on him on Saturday afternoon with a pick up time of noon today. We wanted to make his transition home very smooth and have everything ready for after all we know all about transitions! Last night we also googled "black" golden retrievers to see if there is such a thing. Well, there is!

One of the theories behind the Black Golden Retriever is that they appear " as the result of recessive gene manifestation". They do happen, but are rare. This was another sign Midnight was perfect for our family. We too have something "rare"...Rett Syndrome.

Everyone in our house was extremely excited to bring Midnight home today. This is our family's first dog. So with this, there are lots of things to get used to. Being calm is first and foremost. This alone will be great for our family. For our first day, things went really well. Besides being a little jumpy, but in a playful manner, he has been great! I think I would be jumpy too if I finally had a family to play and interact with...his jumpy would be my equivalent to talking!

He has definitely taken a bond to daddy...and I hope tomorrow will go smoothly for us when daddy is work. Midnight and I will have some bonding time while the kids are at school.

Looking at his adorable face makes me so happy to have him be a part of our family.

When I put my daughter to bed tonight, she was so calm and happy. I asked her if she was happy and she said, "ya", I then asked her who we brought home today and she said "puppy", followed by what is his name, "my night" and what color is he, "black". She knows her "puppy"! We will get her to say "Midnight" over time, but I think it is precious she called him "my night" in her "knight", who will watch over her.

After we had this little conversation, she rolled over onto her side, faced me, placed her hand on my cheek, gave me a kiss and drifted off to dreamland as I sang to her. I think it is safe to say, she was thanking me for her "puppy"....finally!

Instead of some quotes, here a couple of pictures of our newest addition....

Yes, I need to work on red eye!!!

Saturday, December 8, 2012


Today's gift is transitions.

Throughout my daughter's life, transitions have been an area of grey.  Many times we have to plan our days around how many transitions are there going to be in order for "x" to happen.  We know going into our "day" what we need to have on hand in order to make all the transitions peaceful.  Sometimes it works and she does great and other times it does not and she has had just never know.

Well, today we did a lot of running around and into the evening we were still going.  Lots of errands (7 places!!!) during the day to dinner out and our annual family drive around town to look at Christmas was a packed day.

And guess what?  She was amazing!  She transitioned every single time.  A couple of times she started to "get the look", but calmed herself down nicely and never got upset!

She truly shined today and showed us how far she has come with transitions!  Today was an overall fun filled family day!

Here is a quote for today....

A journey of a thousand miles, begins with one single step- Lao Tzu 

Friday, December 7, 2012

Relaxing against me

Today's gift is relaxing against me.

My daughter really enjoys bath time as she loves the water.  However, she does not like to have her hair blown dry.   I do not like her going to bed with wet hair, as it makes doing her hair in the morning a nightmare.  So knowing she doesn't like the hair dryer too much I have to be creative....and fast.

Our routine is I brush her hair, then she gets two at a time while I'm blow drying her hair...quickly. I make sure she has "her" show on (if you have been following my blog, do you know what she has to watch???) and she is happy.  And there is always a magazine near by!

Tonight was a little different.  We did our normal routine...but after I brushed her hair, before I started to dry it, I felt her tense, anxious little body relax and lean against me.  And then she crossed her legs at the ankles!

I was able to blow dry her entire head...and not rush.   It was so nice to blow dry her hair and not have her head be all over the place. But more importantly, it was so nice to feel her relax and lean against me.

Here are two quotes for today...

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

Tension is who you think you should be.  Relaxation is who you are- Chinese Proverb

Thursday, December 6, 2012


Today's gift is skipping.

My daughter is very active.  It all started when she was in my belly and she hasn't stopped.  Walking, running, jumping, name it.  She is always on the go.

This afternoon we were upstairs filling her bath and at this time of day she loves to run around with her siblings.  She came running over to me and linked her arm into mine.  Immediately a certain movie came to I decided to play the scene out with her.

As her arm was linked in mine and a long hallway stared at us I started singing, "We're off to see the Wizard, the wonderful Wizard of Oz" and we skipped down yellow brick road....aka our hallway.   She was skipping down the hallway with me laughing.  When we stopped she would say "more".  So we would turn around and skip the other way singing the song again.  And again.  And again.

I love how something so simple was so much fun.  I love how every day my daughter helps me realize what truly is important in life and what is not.  I love how she has opened my eyes to make me appreciate all the little things.  I love how we share so much together.  I love her so much!

Here are some quotes for today from The Wizard of Oz....

You don't need to be helped any longer. You've always had the power- Glinda The Good Witch

There's no place like home- Dorothy

Somewhere over the rainbow skies are blue, and the dreams that you dare to dream really do come true

Wednesday, December 5, 2012

"Bye Mommy"

Today's gift is "bye mommy"!

Wow, usually my gifts come later in the day, but not today.

My daughter started my day off with her own words. 

The girls were waiting for my husband to load the car before they got into the car to go to school.  My daughter was sitting on the sofa in the kitchen which looks outside when the garage door is open.  She was watching his every move.  As soon as she saw he was walking back into the garage to come get them she hopped up off the sofa, walked briskly over to me with a little skip, and SAID, "bye mommy"!!!!!!!

This. is. the. first. time. she. has. EVER. said. this. to. me!!!!

I have gotten "bye" and "mommy" before, but NEVER together, at the same time!!!!

I lit up as bright as our Christmas tree and gave her the biggest kiss and hug.

Just writing about it makes my eyes get teary.  

Thank you sweetie, for such a special gift this morning.

Here are some quotes for today....

I hope it's a bare-feet-in-the-grass, sunshine-on-your-shoulders kind of day- Author Unknown

We do not remember the days, we remember the moments- Author Unknown

It's funny how your entire life can boil down to a moment nobody else in the world notices- Neely Tucker

Tuesday, December 4, 2012

Being Funny

Today's gift is being funny.

I love how my daughter truly has a sense of humor. I equally love how she remembers jokes...her jokes and will say them when prompted and appropriate.

This afternoon was one of those times. My parents were down visiting today and my mom...aka Mimi...said something that she didn't need to say. Meaning, it was one of those comments.

My mom often makes these types of comments so I taught my daughter a while ago the word "duh". Not only does my daughter love to say this word when prompted, but she laughs right after saying it.

When my mom made one of those comments this afternoon, I looked at my daughter and said " what do you say to Mimi?" and she looked right at her and said "duh" with a giggle. Works every time!

I used to have to prompt my daughter by whispering in her ear the word "duh", but now I just say "what do you say to Mimi".....but she knows what to say depending on the situation. For instance in the story today it was the word, "duh", but if Mimi was leaving then she would know to say the word "bye, or goodnight".

My daughter truly amazes me everyday....and I am so happy she can be funny along the way!


Here are two quotes for today...

You have to have a sense of humor about life to get through it- Kesha

One of the things that binds us as a family is a shared sense of humor- Ralph Fiennes


Monday, December 3, 2012

Learning to read

Today's gift is learning to read.

This gift is one I truly never thought would happen. I believe in an earlier post, I mentioned how she was at the early stages of reading...reading site words.

Today she is reading full sentences! She is reading them out loud if she is able to say the word and make approximations for the words she can not say. Equally as amazing, she can read the sentence to herself silently!

The three sentences she worked on today are: I see a horse and a boy. I see a fish and a yellow ball. I see a yellow car.

The reading program they use with her at school is called Edmark. Her one to one really likes the program and likes how she responds to the program. And I have to agree....she really likes it!

Seeing the confidence beam from her face as she is reading is an extra gift!

Thanks to my daughter's willingness to learn, her one to one who believes in her (and pushes her) and Edmark we are able to read together the level one books. We are able to hear her read to us! This is just the beginning f great things to come.


Here are two quotes for today....

Reading is to the mind, what exercise is to the body- Sir Richard Steele

She turned her can'ts into cans and her dreams into plans- Kobi Yamada

Sunday, December 2, 2012

Being Friendly

Today's gift is being friendly.

My daughter loves being around her friends and family.  She just loves being around people.  People watching is one of her favorite things to do when we go out...mine too!

My daughter loves to get the attention of others when we are out.  She is incredibly lucky to be surrounded by such amazing people in her life that I think she feels everyone she encounters should be friendly to her, like those she knows.

However, sometimes this is not the case.  It truly amazes me how some people can just not acknowledge a child who is trying to get their attention or looking at them.  Anyone can be friendly and smile or say "hi".

Today we had a fun family day.  We started our day at church, then finished up some shopping for a family we are helping this Christmas, went out to lunch, put lights on our tree outside, played with the neighbors, had an afternoon treat and drove around looking at Christmas lights.  Every place we went today, Little Miss Social...aka my daughter, was trying to grab the attention of everyone...and she was! Everyone was super friendly today.

I think it must be the time of year, as this doesn't always happen.  The holidays seem to bring out the best in people, however, you will encounter a Grinch now and then too.  Lucky for us today, there was no Grinch!

My daughter has taught me to always be friendly to everyone you come in contact with.  How a smile or one word like "hello" can go a long way.

In the spirit of Christmas, the next time you are tomorrow....think how you could make one person happy by being friendly!

Here are two quotes for today....

One kind word can change someone's entire day- Author Unknown

Character is how you treat those who can do nothing for you- Author Unknown

Saturday, December 1, 2012

The sparkle in her eyes

Today's gift is the sparkle in her eyes.

My daughter has the most beautiful eyes. Ever since she was a baby, people would comment on her eyes. Not only her bright hazel eyes, but also her long eye lashes....seriously they touch her eyebrows...with no help from mascara!

When you look into her eyes, they just draw you in.

Her eyes actually have a little sparkle to them. To me the sparkle is a reminder for you to believe in her. If you pay close attention, you will hear her voice...but you have to believe.

I can look my daughter in the eyes for hours...not just because they are beautiful and the sparkle draws me in, but because the sparkle gives me hope.

Here are some quotes for today...

Beauty is how you feel on the inside, and it reflects in your eyes- Sophia Loren

I have looked into your eyes with my eyes. I have put my heart near your heart- Pope John XXIII