Friday, November 30, 2012

Being positive

Today's gift is being positive.

My mom came down today to go with me to take my daughter to another doctor.  Nothing is wrong, I'm just being proactive.  However, the thought of us adding a seventh doctor to her regular list of doctors made me kinda sad.  At least this doctor would probably be on the list...Rett or not.

She had a late morning appointment so I kept her home from school today and we were going to have a nice grandmother/mother/daughter lunch afterwards before we had to pick up my other two kiddos.  This was the plan.

We had a 20 minute drive to the appointment including time to find a place to park.  Her appointment was at 10:15 and they wanted us to arrive 15 minutes before the appointment to fill out paperwork.  So we walked into the office at 9:55.

The waiting room was packed! My immediate thought was this is why I don't like (I think I actually used the word hate) coming down to the main location instead of one of the satellite locations.

A negative thought.  Only followed by another one...I hope my daughter makes it through a long I could tell we were not going to be seen on time today.

DID WE WAIT....11:30 is when we finally went back!

The whole time we waited, my daughter was awesome.  She was incredible.  She was patient.  She was positive.

She played on her iPad, she people watched, she played with a baby...she didn't try to get up and walk around (thank goodness as there wasn't much room), she didn't complain, she didn't get upset.

I was so proud of her!

My mom and I were complaining. We couldn't believe she had to wait this long. We couldn't believe anyone had to wait this long.

Once we got back there, our appointment went very well and my daughter was still all smiles.  By the time we left her appointment (2 hours after we arrived) and got closer to our house we didn't have time to have our "nice" lunch.

However, we did still get a chance to stop at one of her favorite chain "quick" restaurants, Subway.  She still has an IOU though!

She taught me today, when you are in a situation you have little or no control over, being negative doesn't do any all! For us today, being negative at times only made the wait seem longer. Staying positive always wins.

She always shows me the bright side of every situation.

Here are two quotes for today...

Think positive and positive things will happen - Author Unknown

You can't live a positive life with a negative mind- Author Unknown

Thursday, November 29, 2012

Treating ME to some TLC

Today's gift is treating me to some TLC.

Like most kids, my kids love to have their backs rubbed/scratched.  I wonder where they got this from???

ME!  To this day, I still love to have my back rubbed and massaged.

My daughter with Rett Syndrome, not only likes to have her back rubbed, but also her legs and feet.  She especially likes to have her feet rubbed after her brace comes off.  I can't even imagine what it must feel like to wear a plastic brace for 8 hours a day....I would want my leg and foot rubbed too!

This afternoon, we were sitting on the sofa having some down time and I had my leg propped up on the sofa.  All of a sudden I feft something on my shoe....I look out of the corner of my eye and my daughter is untying my shoe laces!  It was like she was telling me to take my shoes off.

But it didn't stop there.

Then she started to rub my leg, just like we rub hers!  Even though my massage was a "mini" version of what she typically gets, it was the nicest surprise.  I looked at her and said, "thank you, that was really sweet of you" which she replied..."Mommy", in the most sincere voice.

Even though this interaction between us probably only lasted less than five minutes, it was five minutes I will never forget.  It was five minutes where she was showing me with her actions, she truly loves me.

Here are two quotes for today....

Treat people the way you want to me treated.  Talk to people they way you want to be talked to.  Respect is earned, not given- Author Unknown

Be kind, for everyone you meet is fighting a hard battle- Plato

Wednesday, November 28, 2012

Eskimo Kisses

Today's gift is Eskimo kisses.

My daughter was in a very good mood this evening.  She really wanted to play with her brother and sister and they were playing wonderfully together.  Moments like these I never forget and they are beautiful to see.

The next best thing is when I get cuddle time with her.  Before we headed upstairs for bed tonight we were sitting on the sofa talking together.  We were looking into each other's eyes and starting giving each other Eskimo kisses.

I remember my mom and dad teaching me about Eskimo kisses and my mom and I rubbing noses when I was little.   Sharing Eskimo kisses tonight with my daughter brought back memories of my childhood. I loved being able to share with her one more thing from childhood.

For some reason my daughter loves looking at my nose.  Really, when we sit next to each other she will stare at my nose for a very long time...leaving me to wonder...what is it she is interested in?   I knew she would love Eskimo kisses...and she did.   She got the biggest smile on her face.   She even stopped wringing her hands and just rested her hands down.   I love how she must have felt "safe" with me at this all her worrying and anxiety left.

I could have stayed there all night looking into her eyes giving her Eskimo kisses....and I think she could have too!   It was a perfect way to end the day.

Here are two quotes for today....

Time has a wonderful way of showing us what really matters- Margaret Peters

The best nights are usually unplanned, random and spontaneous- Author Unknown

Tuesday, November 27, 2012


Today's gift is dedication.

I can honestly say when it comes to physical therapy, my daughter is dedicated to her therapy sessions. She does not want to disappoint her therapists and wants them to believe in her.

There are some days, when she does not want to participate in therapy, but she still pushes forward. And other days when the session has to end. If she ever ends a session early she always makes up for it in the next one.

She knows we promised her we would do anything for her and in this anything is bi-weekly physical therapy sessions. Our promise to her, encourages her dedication to us and her therapists.

Today, she was a rock star! I forgot something at home so I left her there for 7 minutes (yes, we live very close to the therapy center). They were telling me how awesome she was on the treadmill and when I got back she started walking all off. I know she liked the attention from them without me around, so I went around the corner. Sure enough she started walking "awesome" again!

Clearly she wanted to do things without me watching I took a step back. From my "view" I coud still see her though without being right on top of her. And what I saw was a little girl extremely dedicated to herself!

Everything they asked her to do today, she not only did it, but did it with strength and determination...and she was all giggles! She loved showing them how she would try anything they asked of her today. She showed them she was there to "work". She showed them she was dedicated to helping herself beat Rett Syndrome.

Seeing her dedication today helped me today as well. You may or may not recall, but last year I ran my first half marathon on a team for Girl Power 2 Cure, for Rett Syndrome. Well, I'm doing it again in February! Even though I know what to expect I'm still nervous and excited.

I don't know what the weather is where you are, but today here it was a high of 47 and rainy! It was also one of the days I planned to run today as part of my training. I haven't run in over a week as I was sick, so I am already behind. I could have...and I come up with why I could not run today, but then I thought of my inspiration for the run. If she is dedicated to her therapy, even on days when she would rather not go, I have to be dedicated to my training.

If she can do it, I can too! The cold temperatures and rain are nothing compared to what my daughter lives with....daily. These two things are just extra challenges for me to deal with in my dedication to my training.

My daughter has helped me understand the true meaning of being dedicated to something. You give it your all, even when you want to throw in the towel. You do it the best that you can. You try instead of saying you can not. You do not make excuses.

Whenever I second guess myself, I just ask myself how my daughter would handle this situation.

Here are two quotes for today....

Some people dream of success, while others wake up and work hard at it- Author Unknown

If you really want to do something, you'll find a way; if you don't, you'll find an excuse-  Jim Rohn

Monday, November 26, 2012

Just Dance

Today's gift is Just in the Wii game.

Like many families we have Wii.  There are some of us who use it more than others.  Those who play Wii have their favorite game.  For instance, my daughter with special needs, her favorite game to date has been bowling.  While she does require hand over hand assistance to play, she really enjoys this game (maybe it has something to do with the ball!).

My favorite game, hands down is Just Dance....1, 2, 3, or 4....I love them all!  Seriously, I can hold my own and challenge anyone who would like to play!

We recently bought Just Dance 4 and the song selections are great.  Of course there is one song my girls love...What Makes You Beautiful, by One Direction.  My middle daughter was dancing to this song this afternoon and my daughter with special needs made a beeline to the playroom to hear this song!

I could have continued with the laundry and had some down time from watching her while she was in the playroom watching her sister, but instead I decided she was going to Just Dance too!  And who am I kidding...I will always give up doing laundry!

I walked into the playroom and instead of starting the song over and hooking up another controller for us to use, I decided to just stand behind her and move her arms to the music and follow the "dancer" on the screen.  She loved every second of it!  She was grinning from ear to ear!  Even though it was three minutes, it was three minutes I will never forget.

I would love to be able to take her to a concert and see them in person....however, I don't know if Rett Syndrome would allow me to.  She typically does not like loud noises....and concerts are loud.  She doesn't like "things" on or in her ears, so headphones or ear plugs are out of the question.  The only options we have for her to be able to see them in person is to either attend a sound check before a show....or to be able to watch a concert from a box...where the noise is muffled some.  Seeing as these will probably only happen with some sort of miracle....they probably will never happen.

A part of me is sad as I see how much joy music brings to her life and how she loves popular artists just like her peers.   She gets extremely giddy just like the best of them when you talk about 1D, especially Zayn!  She is being "typical", but the Rett Monster is not letting her experience "typical" things.

For now, we bring One Direction to her in the form of a Wii game, their concert DVD, and on tv.  The smile on her face is priceless when she hears them or sees them on the screen.  I love how her boy band crush is so typical and how today she was able to experience a typical Wii game with me.  Honestly, I do not think the interest in the game would have been there if it wasn't for 1D!

Just Dance was my favorite Wii game before today and without a doubt after today it will always be my favorite!

Here are some quotes for today.....

If its meant to be, it will be- Author Unknown

Be so happy that when others look at you, they become happy too- Author Unknown

And a funny one too from someecard....
9 out of 10 times children get their awesomeness from their mother

***My blog and blogsy (where I sometimes post from) was having technical difficulties yesterday    (11-25-12).  If you receive my blog daily, then the blog you received via email was seemed like it was a repeat....however, there really is a new blog from yesterday titled Following Directions.  I am going to post it below for you as well in case you missed it.  I apologize for the confusion***

Today's gift is following directions.

This afternoon my daughter was spot on for following directions. No matter what I asked her, she would do it. Something so little, but means so much to a mother whose daughter has special needs.

We took our kids out this afternoon for a treat to their favorite frozen yogurt place, Menchie's. They were having a great day so we decided to surprise them. On our way home, my husband needed to hang our daughter's Wike (also known as her is a jogger stroller which can also be attached to the back of a bike), from the ceiling in our garage as it mostly gets used on the weekends. Also, it is getting much cooler here and we want to park both cars in the garage so the kids can have a warm car to get into in the morning.

While he was getting the garage ready for both cars, the kids and I drove around the neighborhood looking to see who put up decorations this weekend. I don't know about you and your family, but every weekend till Christmas we will take the kids out driving around town looking at lights. It puts us in the Christmas spirit!

When we were done driving around the neighborhood, I pulled into the driveway and let my two youngest out of the car it is a tight squeeze in the garage with my big ole' SUV! After I pulled in, turned off the car and got out to get my daughter out of the car, I noticed she had rolled down her window. If the windows are unlocked she loves rolling them down and up, down and up and down and up!

I told her she was silly and we needed to roll up her window. So I climbed into the front seat, turned the key just enough and said, "ok, roll up your window"...and she did....

But I wasn't quick enough in turning off the car and she rolled it down a little bit....and then laughed! So, I asked her again, "please roll your window up"...and she did....and this time I was faster than her and turned the car off before she could roll it down again.

When I got her out of the car, I told her she did a great job following directions and I liked how she was being a little joker too! This is totally something her siblings would have done to me! As we got out of the car, I asked her if she would shut the car door for us so we could walk past the car...and without hesitation, she closed the car door....and no jokes either!

I love it when she has days where everything just clicks"! Today was definitely one of those days. I wonder too if she felt rejuvenated like I did from our sermon this morning at church or if something at church just "clicked" with her this was about the time frame today when I noticed everything was happening just perfectly.

Whatever it was part of my gift today.

Here are some quotes for today...

Every good and perfect gift is from above - James 1:17

I can do all things through Christ, who strengthens me- Phillippians 4:13

She is clothed with strength and dignity and laughs without fear of the future- Proverbs 31:25

Sunday, November 25, 2012

Following Directions

Today's gift is following directions.

This afternoon my daughter was spot on for following directions. No matter what I asked her, she would do it. Something so little, but means so much to a mother whose daughter has special needs.

We took our kids out this afternoon for a treat to their favorite frozen yogurt place, Menchie's. They were having a great day so we decided to surprise them. On our way home, my husband needed to hang our daughter's Wike (also known as her is a jogger stroller which can also be attached to the back of a bike), from the ceiling in our garage as it mostly gets used on the weekends. Also, it is getting much cooler here and we want to park both cars in the garage so the kids can have a warm car to get into in the morning.

While he was getting the garage ready for both cars, the kids and I drove around the neighborhood looking to see who put up decorations this weekend. I don't know about you and your family, but every weekend till Christmas we will take the kids out driving around town looking at lights. It puts us in the Christmas spirit!

When we were done driving around the neighborhood, I pulled into the driveway and let my two youngest out of the car it is a tight squeeze in the garage with my big ole' SUV! After I pulled in, turned off the car and got out to get my daughter out of the car, I noticed she had rolled down her window. If the windows are unlocked she loves rolling them down and up, down and up and down and up!

I told her she was silly and we needed to roll up her window. So I climbed into the front seat, turned the key just enough and said, "ok, roll up your window"...and she did....

But I wasn't quick enough in turning off the car and she rolled it down a little bit....and then laughed! So, I asked her again, "please roll your window up"...and she did....and this time I was faster than her and turned the car off before she could roll it down again.

When I got her out of the car, I told her she did a great job following directions and I liked how she was being a little joker too! This is totally something her siblings would have done to me! As we got out of the car, I asked her if she would shut the car door for us so we could walk past the car...and without hesitation, she closed the car door....and no jokes either!

I love it when she has days where everything just clicks"! Today was definitely one of those days. I wonder too if she felt rejuvenated like I did from our sermon this morning at church or if something at church just "clicked" with her this was about the time frame today when I noticed everything was happening just perfectly.

Whatever it was part of my gift today.

Here are some quotes for today...

Every good and perfect gift is from above - James 1:17

I can do all things through Christ, who strengthens me- Phillippians 4:13

She is clothed with strength and dignity and laughs without fear of the future- Proverbs 31:25

Saturday, November 24, 2012

Hanging with the kids

Today's gift is hanging with the kids.

This afternoon my daughter with special needs had one of her good friends come over to play along with her little brother and mother...hey I needed a friend too!

The kids had fun playing outside for a little bit as it was chilly. The kids didn't seem to mind as much as the moms! The whole time we were outside my daughter played ball with her friend and followed her around the yard. She truly enjoyed having some one on one time with her.

When we came inside to get warm the kids had a snack and played Wii. My daughter didn't skip a beat and went right into the playroom with all the kids. She loved sitting on the sofa next to her friend watching them play Just Dance...she loves the music and watching people dance!

It was so refreshing to see her be engaged with her peer and wanting to be with all the kids. As an extra bonus it was nice to have a conversation with my friend without all the kids around!

I love seeing her be "one of the kids"!

Here is a quote for today...

Friends uplift the soul- Author Unknown


Friday, November 23, 2012

A Great Day Together

Today's gift is a great day together.

After being so thankful yesterday, I'm equally as thankful today.  My daughter had a great day.

We celebrated Thanksgiving with my parents and we spent the night at their house...which we do not do too often as it is easier to just come back home.  However, this year my husband thought it would be fun to actually make a "mini trip" out of our visit.

I have to say it was a ton of fun.  It made us realize we need to do more of these "mini trips" more often.  All the kids had a great time and were really good...especially my daughter with special needs.

She truly loves her family and loves just being around them.  Seeing her so happy makes me happy. She was in the best mood today!

When she woke up after sleeping in she was all smiles.  After a yummy breakfast we played some games while we waited for everyone to get dressed so we could hit the downtown area. Trust hitting this downtown area is nothing like hitting the mall on Black Friday!  It was "busy", but not crowded.  It was the perfect size crowd to help us get into the spirit of Christmas together as a family and with my parents.

My daughter loved people (and dog) watching.  She walked some and strolled some as there were some hills....I liked the burn I felt in my legs pushing her up the last hill as I needed it after all the eating we did yesterday!

After Thanksgiving lunch and dinner, I could have done without lunch today...however the kids had different plans.  Since they do not gorge themselves like we do, they still need to eat.  We took them to lunch at a local hot spot.  My daughter was amazing in the restaurant!  This should be a gift by itself, but since the whole day was special I decided the whole day together was my gift.

Maybe it was the fact she loves Italian food...and I let her indulge with a piece of pizza...but she fed herself her entire lunch...bite by bite!  I would fork the bite for her, lay the fork in front of her, she would pick up the fork, take the bite and then put the fork back down for another bite.  She was equally as proud of herself as I was!

After lunch we walked off yet another meal, before heading back to my parents to get our things so we could head home.  Still all smiles.

All the way home through tonight she was great!  We even had another family movie night watching Frosty the Snowman before bed.   It was my night to put her to sleep and it was my pleasure to do so! She was in such an amazing mood all day (and yesterday too) I wanted to tell her how proud I was of her....and I wanted to cuddle with her as she (we) drifted off to dreamland.

When my daughter has great days like today, they truly last longer to us than just the day it happened. The days she has an "off" day they drain her and us so much, we need days like today to refuel our energy and to help us get through those bad days.

Today was a perfect day to wrap up one holiday and to start celebrating the next holiday upon us...Christmas.  The season to believe...and oh how much I do believe in miracles!

Here are some pictures I took of her yesterday and today!

Thursday, November 22, 2012

How to be Thankful

Today's gift is how to be thankful.

Of course, I am always thankful for people in my life, when people help me, or when given gifts or acts of kindness.  But to be thankful for deeper things I have been taught from my daughter.  She has taught me there is always something to be thankful for even in the hardest of times.

When my daughter was given the diagnosis of Rett Syndrome I (we) were feeling extremely low...the lowest of lows.  The feeling I had in the pit of my stomach was one I hope I never have to experience again.  After our new "reality" sunk in and we met with her new team of doctors, I finally felt a little more at peace.

It was at this point in our journey with Rett Syndrome I started to look for the silver lining in every situation brought to us.

Today and always I am extremly thankful for the following:

  • I am very thankful our daughter has a mild form of Rett Syndrome and does not have many of the other characteristics of this disorder like many of her Rett sisters. 
  • I am very thankful we have the family support system we do and are able to care for her at the level we can.  
    • I am thankful for my mom and dad who are always there when we need them.  They truly are our life savers!  My mom always knows when I need be there for me (as in I need attention too!) and my dad always puts my family first...and would drop anything to help us.
    • I am thankful for my dad in Texas...he knows when I just need to talk and he always wants to know how I am doing.  I always put my kids first, so it is nice to talk about me sometimes too.
    • I am thankful for my mother-in-law...she helps me almost daily by being an extra set of hands and eyes in the house.  She allows me to be able to get things done when I would otherwise be chasing after my daughter.
    • I am thankful to have both of my grandmothers...I love the fact my children know their great-grandmothers and have relationships with them. 
    • I am thankful for my aunt who is like the sister I never had....
    • I am thankful for everyone else in my family....who have known me the longest and who have shared memories with me along the way...all of you have a special place in my heart.
  • I am very thankful my husband and I have family and babysitters who can watch our children so we can go out for a date night or on vacations together.
  • I am very thankful we have a strong educational team in place and they believe in her.
  • I am very thankful we found the perfect person five years ago to be by her side every day at school and to be the one to show us what our daughter truly is capable of accomplishing.
  • I am very thankful for the amazing therapists my daughter has helping her to be the best she can be.  Their level of enthusiasm and true interest in my daughter is heartwarming to see.
  • I am very thankful for my husband...this clearly wasn't the life we had envisioned together, but I honestly could not imagine anyone else who I would want to be on this crazy journey with....he knows when I need strength, a laugh, a hug, even a reality check...he is my best friend and not only the perfect father for our daughter with special needs, but also for our other two joys
  • I am very thankful for my other two children.  My middle daughter is truly a mini version of me...sometimes this is good and sometimes this is bad...she is sassy, but she is also the most compassionate, understanding, intelligent, beautiful young lady.  My son, he truly completed our family...he is the cutest little boy who has a sense of humor, the kindest heart, is sensitive and is my sunshine in so many ways.
  • I am very thankful for my friends....they know just what I need without me even asking, they understand our family and accept us just the way we are, they want to share in our journey and be a part of something bigger too, their kind words and deeds are what help me on my rainy days.
  • I am very thankful for my health and my husband's health.
  • I am very thankful for my daughter with special needs....if it were not for her, I would not appreciate all the little things in life as I do today.  I would not have been  introduced to some of the most amazing people I know if it were not for Rett Syndrome.  I would not have found the deeper meaning to life.  I thank her for helping me to reach out and ask for help and guidance when I realized I was going to need to strengthen my relationship with God.  I thank her for being her and being patient with me on this journey together.
I am beyond blessed on this Thanksgiving Day.  

Here are some quotes for today....

Every day may not be good, but there is something good in every day- Author Unknown

There is always, always, always something to be thankful for- Author Unknown

No matter how good or bad you think your life is, wake up each day and be thankful for life.  Someone somewhere is fighting to survive- Author Unknown

Look back and thank God.  Look forward and trust God.  Look around and serve God.  Look within and Find God.

Wednesday, November 21, 2012

Her Diagnosis

Today's gift is her diagnosis.

You may be is her diagnosis a gift?

Not knowing what is causing your child to be "atypical" is worse than knowing.  Our daughter started showing signs something wasn't right at the age of 18 months.  It was primarily in the area of speech at first and then progressed to fine and gross motor skills along with hand wringing.

In a 4 1/2 year time period she also experienced other issues such as pulling out her own hair, head butting, screaming fits, constipation issues, serious sleep issues, and behaviors started.

We didn't know what was going on and why she was experiencing these issues...all of them.  We went from doctor to doctor crossing state lines.  We went from specialist to specialist crossing state lines.  She had test after test done to try and find an answer.

She had the Rett Syndrome test performed twice and both times it came back with a negative result.

We just wanted an answer so we could move forward.  By knowing what our daughter was facing we would not only understand her better, but would be able to understand why she was experiencing the issues she was.  All we wanted was to help her and all we felt was helpless.

However, six years ago today we received our answer.  Six years ago today the blood test for Rett Syndrome came back for the third time.  This time it was positive (the third test was sent to a different lab in Texas where it picks up all mutations, mild and severe).  Today is diagnosis day for our family.

Today six years ago our world for our daughter was turned upside down.  The next day was Thanksgiving and it was so hard for us to celebrate and be thankful with her diagnosis.  But we were...we were for her, for her sister, for the rest of our family and for ourselves.

While we secretly were praying nothing would come back positive, we were so thankful we had an answer and could move forward.

I'm not going to lie and say its been easy since "D Day".  Far from it.  But keeping things in perspective, it hasn't been horrible either.

Our daughter has taught us so much about her, about us and about life.  In a time when we were feeling extremely grey, we were given the news a week after her diagnosis we would be having a third child. At a time when we needed something to brighten our days, weeks and months ahead, we were blessed with the color for a baby boy who would be part of our family in nine months.

God has a plan for all of us.  While his plan for us was to give us a child with special needs who would require extra care, he also blessed us with two healthy children.  I just can't help but think there was "planning" behind his timing...his timing of her diagnosis and us finding out we would be welcoming a third child into our family.

While I would give anything for her to not have a "D Day", the gifts she gives to, are life changing, and truly makes you appreciate every little and big thing differently.

So many families never get a diagnosis or the wrong diagnosis and I can not imagine what it would be like to still be in the "unknown".  I would always rather know, than not know.

We have come so far in six years and I can't wait to see what she is capable of in six more!  But more than anything I hope in six years when she is 17 we will be celebrating a cure for her and all her Rett sisters.  Instead of "D Day" being on our radar each year, it will be replaced by "HER Day" the day we Helped End Rett and the day she got her life back!

Here is one quote for today and a little story....

I prayed for this child and the Lord has granted what I asked of him- 1 Samuel 1:27

Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his
instruments of propagation with great care and deliberation. As He
observes, He instructs His angels to make notes in a giant ledger.

one gets a daughter. The Patron saint will be Cecelia"

"This one gets twins. The Patron saint will be Matthew"

"This one gets a son. The Patron saint.....give her Gerard. He's used to

Finally He passes a name to an angel and smiles. "Give her a disabled
The angel is curious. "Why this one God? She's so happy"

"Exactly," smiles God. "Could I give a disabled child to a mother who
does not know laughter? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea
of sorrow and despair. Once the shock and resentment wears off, she'll
handle it. I watched her today, she has that feeling of self and
independence that is so necessary in a mother. You see, the child I'm
going to give her has her own world. She has to make her live in her
world and that's not going to be easy."

"But Lord, I don't think she even believes in you"

God smiles, "No matter, I can fix that. This one is perfect - she has just
enough selfishness"

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she
won't survive. Yes here is a woman whom I will bless with a child less
than perfect. She doesn't realize it yet, but she is to be envied. She will
never take for granted a 'spoken word'. She will never consider any
'step' ordinary. When her child says "Momma" for the first time she will
be present at a miracle and will know it. I will permit her to see clearly
the things I see...ignorance, cruelty and prejudice...and allow her to rise
above them. She will never be alone. I will be at her side every minute
of every day of her life because she is doing my work as surely as if she
is here by my side"

"And what about her Patron saint?" asks the angel, his pen poised in

God smiles ……………"A mirror will suffice"

Tuesday, November 20, 2012

Just go with the flow

Today's gift is just go with the flow.

Do your kids like to try on new piece of clothing after another? Mine do not. One or two pieces...ok...more than this and I have better have a treat waiting for them.

My daughter had physical therapy...her last one this week due to Thanksgiving. I asked her therapist last week if she had any ideas for something my daughter could wear to apply pressure to her left hip. You see she is so stiff on this side, she continues to hike her hip up and sometimes will bring it down on her own. If you apply pressure to the area on her hip with your hand she will put this side down. But as soon as you take your hand away, she pulls is back up.

Clearly having our hand on her hip all the time is not the answer. But what is the answer?

Today her therapists were trying a bunch of different options out around her waist and hips. Some with just compression, some with weights and some with both. Every time she would try on something new they also wanted her to walk on the treadmill so they could see if the compression/weight idea would work.

I didn't know how she was going to handle this back and forth. I was hoping and praying she would "just go with the flow". They changed what they wanted to try with her FIVE times. This doesn't seem like a lot to you and I, but to the child who doesn't like to try on new clothes and would rather be on the go...five times seems like five hundred!

She was a champ! She "just went with the flow" and allowed them to try all these different things out on her. Honestly, what I think helped tremendously was the fact my daughter was the only child in there this morning for therapy and she had the attention of two therapists and three assistants....she loves having all the attention on her! She was queen of therapy today and she knew it!

I think we have a plan of what may work, so her "just go with the flow" really helped us today. It could have gone in the opposite direction, but luck for us she was willing to cooperate with us.

Here is a quote for today...

Life is full of surprises, it's best to just go with the flow- Author Unknown

Monday, November 19, 2012

Honor Roll

Today's gift is honor roll.

I am one extremely proud mom tonight.  Not only did one of my daughters make honor roll, they BOTH made it!

This is definitely on the list of "I never thought this would happen".  When I opened my daughter with special needs report card and saw her honor roll certificate I was smiling from ear to ear.  I think I was both excited and shocked!

She received 3 B's and 2 A's.  On her report card next to each letter grade there was an asterisk indicating there was more to the grade, "asterisk in front of grade indicates instruction was modified".

I know my daughter is working on a "modified" curriculum and I am ok with this.  What matters most to me is that she is happy, she is having fun and she has friendships.  Everything else is a bonus to me!

I loved reading the note from her teacher, "...she is a loving girl and a joy to have in class.  She enjoys doing school work and will attend to her work for up to 25 minutes.  She appreciates having her peers around her.  Her grades reflect her progress towards meeting her goals/objectives....".  I could not be any happier!

I couldn't be happier of her "overall" educational experience and as I have mentioned in the past ALL of this would not be possible without her very special friend who is by her side every day.  She not only believes in my daughter, but she has helped others to believe in her too!

Tonight at dinner we were talking about how both girls made honor roll and my middle daughter asked if her sister has made honor roll before.  I said no.  To which she replied, this is her first time...with excitement in her voice.  Yes, I said.  Then she said, now that is something to blog about!  I couldn't agree more!

Here are two quotes for today...

Surround yourself with people who believe in your dreams- Author Unknown

With brave wings she flies- Author Unknown

Optimism is the faith that leads to achievement- Helen Keller

Sunday, November 18, 2012

The Little Things #4

Today's gift is the little things #4.

The little thing she gave me today was the gift of helping me do chores.  Her brother and sister have a list of chores they have to help with around the house, but she does not.  However, whenever I can have her help me, I jump on the opportunity.

It is an opportunity for her to work on a skill, it is an opportunity for her to feel like she has a "chore" too, it is an opportunity for us to do something together.

Today's "chore" was helping me put towels from the washer into the dryer.  She stood in front of the dryer, I would hand her towels from the washer and she would throw them in.  This was quite a fun game.  I enjoyed seeing her throw some in with force and a giggle.  And of course, if she didn't make it in the "basket" she would have to pick it up and try again.

Something so simple, yet we worked on LOTS of skills.  She had to overcome her apraxia many take the towel from my throw the towel into the dryer...if she dropped the towel, she had to bend down, pick it up and then throw it in again.  She worked on gross and fine motor skills.  She worked on keeping her hands apart, as I was fast in having the next towel ready.  She worked on speaking as she would tell me the color of the towel...if I knew she could tell me verbally.

Most importantly, we bonded.  We had time together....doing a typical household chore.

Here are two quotes for today...

We sometime underestimate the influence of little things- Charles W. Chestnutt

Sometimes when I consider what tremendous consequences come from little things, I am tempted to think there are no little things- Bruce Berton

Saturday, November 17, 2012

Family Movie Night

Today's gift is family movie night.

This afternoon my middle daughter and I did a little Christmas shopping together.  I was feeling she needed a little one on one time with me.  And I was correct.

On our shopping trip we went to Macy's so she could put a letter to Santa in the mailbox they have in the store.  Right by the mailbox there was a movie for sale a friend was recently telling me about...

Yes, Virginia there is a Santa Claus

Being in the Christmas spirit and after reading the back of the movie we bought it!

Watching a family night...can be hit or miss for us.  However, we always try.

Tonight, we all hopped in our king sized bed and watched the movie.  First, this movie was absolutely precious.  It not only truly put me in the Christmas spirit but I hope my children were able to see the message in the movie.  Christmas isn't about "getting", but "giving".

Second, the movie length was short and sweet.  The perfect length for our family at night.

It was so nice to be able to watch a movie together, in bed before bedtime and spend some quality time as a family.  And of course the movie had the perfect message we all need to hear.

Yes, everyone, there is a Santa Claus.

Instead of quotes tonight, here is the story of Virginia, as this movie is based on a true story...

Yes, Virginia, There is a Santa Claus

By Francis P. Church, first published in The New York Sun in 1897. [See The People’s Almanac, pp. 1358–9.]
We take pleasure in answering thus prominently the communication below, expressing at the same time our great gratification that its faithful author is numbered among the friends of The Sun:
Dear Editor—
I am 8 years old. Some of my little friends say there is no Santa Claus. Papa says, “If you see it in The Sun, it’s so.” Please tell me the truth, is there a Santa Claus?
Virginia O’Hanlon
Virginia, your little friends are wrong. They have been affected by the skepticism of a skeptical age. They do not believe except they see. They think that nothing can be which is not comprehensible by their little minds. All minds, Virginia, whether they be men’s or children’s, are little. In this great universe of ours, man is a mere insect, an ant, in his intellect as compared with the boundless world about him, as measured by the intelligence capable of grasping the whole of truth and knowledge.
Yes, Virginia, there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. Alas! how dreary would be the world if there were no Santa Claus! It would be as dreary as if there were no Virginias. There would be no childlike faith then, no poetry, no romance to make tolerable this existence. We should have no enjoyment, except in sense and sight. The eternal light with which childhood fills the world would be extinguished.
Not believe in Santa Claus! You might as well not believe in fairies. You might get your papa to hire men to watch in all the chimneys on Christmas eve to catch Santa Claus, but even if you did not see Santa Claus coming down, what would that prove? Nobody sees Santa Claus, but that is no sign that there is no Santa Claus. The most real things in the world are those that neither children nor men can see. Did you ever see fairies dancing on the lawn? Of course not, but that’s no proof that they are not there. Nobody can conceive or imagine all the wonders there are unseen and unseeable in the world.
You tear apart the baby’s rattle and see what makes the noise inside, but there is a veil covering the unseen world which not the strongest man, nor even the united strength of all the strongest men that ever lived could tear apart. Only faith, poetry, love, romance, can push aside that curtain and view and picture the supernal beauty and glory beyond. Is it all real? Ah, Virginia, in all this world there is nothing else real and abiding.
No Santa Claus! Thank God! he lives and lives forever. A thousand years from now, Virginia, nay 10 times 10,000 years from now, he will continue to make glad the heart of childhood.

About the Exchange

Francis P. Church’s editorial, “Yes Virginia, There is a Santa Claus” was an immediate sensation, and went on to became one of the most famous editorials ever written. It first appeared in the The New York Sun in 1897, almost a hundred years ago, and was reprinted annually until 1949 when the paper went out of business.
Thirty-six years after her letter was printed, Virginia O’Hanlon recalled the events that prompted her letter:
“Quite naturally I believed in Santa Claus, for he had never disappointed me. But when less fortunate little boys and girls said there wasn’t any Santa Claus, I was filled with doubts. I asked my father, and he was a little evasive on the subject.
“It was a habit in our family that whenever any doubts came up as to how to pronounce a word or some question of historical fact was in doubt, we wrote to the Question and Answer column in The Sun. Father would always say, ‘If you see it in the The Sun, it’s so,’ and that settled the matter.
“ ‘Well, I’m just going to write The Sun and find out the real truth,’ I said to father.
“He said, ‘Go ahead, Virginia. I’m sure The Sun will give you the right answer, as it always does.’ ”
And so Virginia sat down and wrote her parents’ favorite newspaper.
Her letter found its way into the hands of a veteran editor, Francis P. Church. Son of a Baptist minister, Church had covered the Civil War for The New York Times and had worked on the The New York Sun for 20 years, more recently as an anonymous editorial writer. Church, a sardonic man, had for his personal motto, “Endeavour to clear your mind of cant.” When controversal subjects had to be tackled on the editorial page, especially those dealing with theology, the assignments were usually given to Church.
Now, he had in his hands a little girl’s letter on a most controversial matter, and he was burdened with the responsibility of answering it.
“Is there a Santa Claus?” the childish scrawl in the letter asked. At once, Church knew that there was no avoiding the question. He must answer, and he must answer truthfully. And so he turned to his desk, and he began his reply which was to become one of the most memorable editorials in newspaper history.
Church married shortly after the editorial appeared. He died in April, 1906, leaving no children.
Virginia O’Hanlon went on to graduate from Hunter College with a Bachelor of Arts degree at age 21. The following year she received her Master’s from Columbia, and in 1912 she began teaching in the New York City school system, later becoming a principal. After 47 years, she retired as an educator. Throughout her life she received a steady stream of mail about her Santa Claus letter, and to each reply she attached an attractive printed copy of the Church editorial. Virginia O’Hanlon Douglas died on May 13, 1971, at the age of 81, in a nursing home in Valatie, N.Y.

Friday, November 16, 2012

Seeing her....through a lens

Today's gift is seeing her through a lens.

The lens of my camera.

This morning she had physical therapy and as we know we never know what her mood is going to be....luckily today she was in a good mood.  Not a great mood, but a good one.

I brought my camera today as I love taking pictures of her in therapy so I can see her progress.  I have folders on my computer of pictures of when she first started to present.  It really is remarkable to see how far she has come in a short amount of time.

I loved looking at her through my camera lens today.  I loved snapping continuous pictures capturing all the different facial expressions she makes.  I loved seeing her true beauty.

I loved looking at my daughter's face not as a child with special needs, but as an 11 year old girl.  I loved dreaming of what might be going on in her mind.  I loved looking deep into her beautiful eyes.  I loved seeing how she is growing into a tween...she is not a little girl anymore.  I wish I could have bottled her up at the age of three....but life moves so fast....I still can't believe she is 11.

My favorite part of seeing her through my camera lens was the fact I was seeing her for her...not her for her special needs.  This is how I want everyone to see her.

To know she is just like her peers on the inside, it is just she has extra challenges she has to face daily to express herself.  And sometimes the effects of her disorder show on the outside.  However, she likes the same things as her peers.  Some examples are One Direction, the movie Soul Surfer, she gets shy around boys she thinks are cute, she loves sports, she has her favorite restaurants, etc.

Here are some pictures I took today....

 Starting her stretching exercises, still smiling as she has her comfort with her "the ball"

 Stretching is starting to get a little more intense

 Having to balance with one foot at a different level than the other

Getting ready to fly in the of her favorite activities at therapy

Just by looking at her do you think she has special needs?

Here are two quotes for today....

Children with special needs hold the key to the pure joy of what life is really all about....our only mission to unlocking this secret is to open our hearts and minds- Author Unknown

I don't think the worst thing that could happen to me is raising a child with special needs.  I think the worst thing is to raise a child who is cruel to those with special needs- Author Unknown

Thursday, November 15, 2012

Finding color amidst the grey

Today's gift is finding color amidst the grey.

If you have been following my blog, I think you can figure out what the "grey" is in our life....Rett Syndrome.

However, I and we as a family, can not let the "grey" get us down, so we are always finding our journey with Rett Syndrome to brighten up our days.  Some days, the "grey" isn't Rett related at all...but our every day.

For instance, today my five year old son had a very hard time listening and following directions.  At school he is an angel, at friend's houses he is an home.....50/50!  It really upsets me when he acts like this because I know he can "act" so much better.

Here is what happened....he didn't listen, I get upset at him, then he in turn gets upset over the fact I'm upset at him....all because he just didn't listen.  We have a talk about his behavior, he is all lovey dovey, apologizes....and then ten minutes later....


And I am at my wits end.
I am tired.
My husband is in his busy time of the year so I have to be more understanding with his work schedule.
My daughter is left unattended from where she is sitting for one minute (while I try to talk to her brother) and begins to roam around the house and play where she is swiper and throwing everything down...not a fun game.
My middle daughter is tired...and I really can't ask her to step up to the plate to help...but I do....and her sister tries to pull her a playful way, however she doesn't see it like this because....she is tired.

So I tell the younger two to brush their teeth and to go to bed....there is nothing left for me to do...alone.

And then it is as if my oldest daughter realizes I need her to calm down so I can tend to her siblings for a little bit...enough to get them tucked into bed.  In this "grey" moment with her brother, she is giving me color to get through least enough time to put him to bed!

Finally my youngest children are in bed and now I can have some breathing time before it is time to put her to bed.  She and I are relaxing on my bed watching Hannah Montana and I am reflecting on our night.  I am reflecting on how in this situation I experienced with my son (the "grey") she gives me color.

She for the most part does listen.
She isn't given too many directions she has to follow, but when they are given she usually follows through...the FIRST or SECOND time.
If she doesn't listen or follow the directions...she will NOT talk back.
She does not hide from me when she is in trouble.
She does not carry on when she is in trouble.
She hardly gets in trouble.

Would I give anything for her to act like her brother and NOT have Rett Syndrome....ABSOLUTELY!  But since I know "magic" isn't going to happen overnight, I am thankful one of my children isn't mouthy.

Nights like these are really hard for me too...especially when I go in and kiss my kids goodnight while they are sleeping.  I just look at their little faces....all innocent...and think...
how could I be upset at them?
why don't they listen all the time?
why do they have to argue with one another?
why, why, why?

I know this is part of parenting, but isn't my parenting hard enough?  Shouldn't my kids understand I need them to act at home just like they do at school?  The stresses of being a special needs mom on top of being a regular mom is emotionally and physically draining.

But it also makes me stronger emotionally, physically and spiritually.  It makes me have to figure things out a little differently.  It makes me have to find where the true colors are when there are "grey" moments in our every day.

Here are two quotes which are I also always have to find humor....

Yeah, sometimes I don't listen....I just watch your jaw go up and down

Sometimes I feel like throwing in the towel....but that would only make more laundry for me

Wednesday, November 14, 2012

Her Homework

Today's gift is her homework.

I am sure you read this post title and thought to yourself...the gift is homework!?!

Yes it is.  And the reason her homework is my gift is because I honestly never thought my daughter would have homework.

When she was diagnosed with Rett Syndrome we honestly saw the life we dreamed for her flash before our eyes...puff!  It.  was.  gone.

Then we learned about Rett Syndrome.  We learned about her.  And we learned how the two go hand and hand as Rett Syndrome affects every girl differently.

Once she started school started where they teach children through the ABA style of learning...we knew there was hope.  Shortly there after we realized there were other people who believed in our child too.  Today one of her first teachers is still by her side every day and believes in her more than anyone I know....sometimes more than me!

Because of her amazing (this word doesn't even do her justice!) teacher who not only encourages her but will also adapt anything to help her learn the same material as her daughter has homework!

Homework = Learning

Homework = Typical School Experience

Homework = Hope

Tonight as I helped my daughter with her homework I realized this was my gift today.  I was helping her study for her science test tomorrow.   I had a list of twenty questions to ask her.  TWENTY!  And she knew her material!!!   To say I am proud of her is an understatement!

Equally as exciting is the fact all THREE of my children are learning about some aspect of weather right child in Pre-K, my second grader and my fourth grader...all with different levels of difficulty!

Once you find someone in the educational field who believes children with special needs can perform academically....all things change.  Hope is given back where it was once lost.  

My daughter will probably never learn like her peers do and her tests will be altered to meet her needs (the way the test is worded, the number of questions, etc).  But what will be the same is the material she is learning and the fact she is taking tests in which she has to study slacking here!

So yes....homework is my gift today.  And I am forever grateful to my daughter's one true believer for making homework a reality in her life.

Here are some quotes for today....

Students will not simply pass through a course like water through a sieve, but instead leave their own imprint on the learning process- Bryn Holmes

Every child has....the right to be respected
....the right to dream
...the right to be loved and cared for that should be recognized and valued
...the right to achieve their God given potential
...the need for unconditional love
-Author Unknown

There are so many people out there who will tell you that you can't.  What you've got to do is turn around and say "watch me"- Author Unknown 

Tuesday, November 13, 2012


Today's gift is simplicity.

My daughter has taught me less is more.  She is the first person who does not need all the "stuff" and is happiest when she just has a few things...the things she truly appreciates and enjoys.

If she was going to be stranded on a island with me, I know what three things she could not be without....her iPad for games, pictures, music and movies; her ball to play with and keep her hands moving; and Connect 4.  These three things would keep her happy and content.

She has taught me how less is more is what it is all about. It isn't about all the material things....but more about the things you can not replace.  It is about your family, your friends, and the memories you share together.

It isn't about having the nicest "things" kids are going to be kids....which means accidents are going to happen, furniture is going to get bumped into by remote control cars, crayons and markers will appear on something other than paper....

They are kids and they want to explore....and I don't want to stop them.   Don't get me wrong...I do teach respect to my kids and how you can not destruct things...but I also do not want them to grow up too fast...I want them to be kids.  They grow up fast enough as it is.

I have actually had to change things in my house as I felt we were too "fancy" for the life we lead now. We live a life where everyone needs to feel comfortable, most importantly my daughter does in her own home.   I want a place where my daughter can roam freely and not worry about her or all the " things"she may touch.  The things can be replaced, her happiness can not.

While there is always a piece of me who wishes we had more....two facts would remain the same....our daughter would still have special needs....and the things which make her happy would be the same.

I do not know what the future holds for us and our family....but what I do know is everything we do for our family will always be simple...nothing too complicated. You can still enjoy vacations, day trips, dinners out, impromptu adventures, homes, cars, keeping things simple.

I like keeps "things" real.

Here are some quotes for today...

Being the richest man in the cemetery  doesn't matter to me.  Going to bed at night saying we've done something wonderful, that's what matters to me- Steve Jobs

It's the sweet, simple things in life which are the real ones after all- Laura Ingalls Wilder

Sometimes the most ordinary things could be made extraordinary, simply by doing them with the right people- Nicholas Sparks

Monday, November 12, 2012


Today's gift is motivation.

My daughter is my motivation...every single day.

I always praise and help her to do her this is all I ask of try to do her best. And she does.

When I watch her in all areas of life...whether it is at therapy, in school, or learning a new skill at home she motivates me.  She gives all she has and never gives up.  She never complains.  She may want a break, but does not complain.

There are many days when I do not want to do something I have to or I should do...and what turns my direction of focus around is my daughter.  I think to myself, what would my daughter do.

This morning was one of those days.

Today I had to start my 15 week training program for the Disney Princess Half Marathon.  Last year I ran this race on the Girl Power 2 Cure Rett Team in honor of my daughter and the other girls who live with Rett Syndrome or who have lost their battle against the Rett Monster.

Last year was my first half marathon and I was extremely nervous.  I had no idea what to expect.  I was honored to have seven friends join me down in Disney to run for my daughter.  I could not give up on my friends....but more importantly I could not give up on my daughter.

Training and running a half marathon was a challenge for me.  I was never a runner and I still don't consider myself a "true" runner.  Throughout my training last year when I wanted to give up....or walk more than run, I told myself...she would never give you can not give up on her.

I could have thought of every excuse in the book not to get out there and run today....but I didn't.  I didn't because I can not give up on the person I am running daughter.  She is what is motivating me to get through this 15 week training program and she will get me through race day.

I could not have asked for a better day to kick off my was beautiful and 65 outside.  I know we are probably in for a rough winter after our mild one last year so I want to take advantage of the nice weather before it is gone.

I am not going to was tough out there for me as I haven't given it "my all" in a good run since June!  I pushed myself to not give up when I wanted to.  I pushed myself because I knew I could do it.  I pushed myself thinking of all my daughter goes through and how I wish I could make it all better.  And I pushed myself thinking of another life the Rett Monster took away Saturday night.

If I did not have the motivation from my daughter, I honestly can tell you I would have given up on this "running" thing a long time ago.  But thanks to her, I didn't and I actually enjoy it.

I can not thank my daughter enough for being there for me when I need her the most!

Here are some quotes for today....

Discipline is doing what needs to be done, when it needs to be done, when we don't want to do it- Susan Solomon

The miracle isn't that I finished, the miracle is that I had the courage to start- John Bingham

When you feel like quitting, think about why you started- Author Unknown

Sunday, November 11, 2012

Good ole' Family Fun

Today's gift is good ole' family fun.

Fall is my favorite time of year!  I love the cool crisp air, the apples and pumpkins, pumpkin spice lattes, sweater weather, the leaves changing colors, fire pits....everything Fall related!

Today was the perfect fall day.

It was warm, but "fall" warm, where there is still a little chill in the air, the sky was a perfect shade of blue and the leaves are still colorful.

Two weeks ago I planned for us to get family pictures taken today and when I woke up and saw what an incredible day it was I was so happy!  The weather had I just had to keep praying my kids would do the same.

I wanted our pictures to be fun and different...different as in someplace we as a family have never taken pictures before...a farm.  I love the country....and after today I learned my kids do too!

We had to drive about 45 minutes to meet our friend (and the photographer) at the farm where she was going to take our pictures.  Of course someone in the car asked three times if we were there yet.  My middle daughter does not like getting her picture taken.   Luckily a nap cured the questions!

As soon as we turned into the driveway all the kids were looking at the long, windy driveway wondering what farm animals they would get to see.  Cows....lots of cows!  They were all over the place and we were driving RIGHT past them...if the window was down, we could touch them.  Once we got to the top of the hill by the house, the view was stunning.  Nature at its finest...rolling hills, cows, colorful trees, a perfect blue sky....and we even saw TWO rainbows!

I think the rainbows were a good sign it was going to be a great photo shoot and cooperation from everyone!

I am always a little nervous when it is time to get our picture taken...especially with my oldest.  If we are not in the picture we can get her to laugh....but when we are in the picture...we are smiling it makes it a little more difficult.

Time was on our side when we first got there as we were a little early and the sun was not in the correct spot yet.  So the kids were able to run around and get their sillies out before I needed them to cooperate.   They loved having so much open space to run around and explore.  All of my children loved being able to roam and play in the leaves crunching under their feet!  Of course they wanted to get a closer look at the cows so my husband walked them down to the edge of the driveway which has the grates so the cows can not walk across.  As soon as they hit this spot...the cows started moo-ing...loudly!  The kids thought this was hilarious.  My daughter with Rett Syndrome was laughing and saying "cow" over and over again.

Not only were they moo-ing, they were all walking towards least 40 cows!  I am not exaggerating!!!  When they got close to them all the cows stopped, but kept moo-ing.  I am wondering if they thought we were going to feed them or something.

It was really special to experience something like this with our whole family together...for the first time. Usually when we drive past cows my daughter will not say "cow"...even though we know she can say it.  So to hear her say "cow" while she is only feet away from them was really wonderful to hear.  She was really intrigued by them and if we didn't hold her back she would have been out in the pasture with them!

Having this fun "cow" experience today before our pictures made our pictures even more memorable!  A couple of them have the cows in the background as we really wanted the old barn in our pictures.  Now when we look at our pictures we took today...we will have a story to go along with the memory.

Even my daughter who complained while we were driving there said on the way home...."that was a lot of fun"!

It was fun and everyone smiled at least once a picture perfect smile for me!

Instead of a quote I will share this sneak peek of our photo shoot today....with our new friends in the background!

Saturday, November 10, 2012

Being there for our friends

Today's gift is being there for our friends.

Having a child with special needs has opened my eyes to those around me and my family.  I know who I can count on for certain things and who I can not.  But just like I need my friends to be there for me or my family, my friends also need me/my family to be there for them.  Whether it is for happy times or sad times...they know we are always by their side.

Today, was a day when we were their to support our dear friends...for something exciting.  Our daughter's one to one teacher in school, her husband opened his own bakery and we were able to sample his goodies today!

We were talking about it all morning to my daughter as she just loves "D".   Often we will talk about our day to her if we are going to be going places as to help with the transitions.  I knew this trip was going to be a good one as the two people we were going to visit are two of her favorites!

The bakery sits on a corner in an up and coming area in our city and it was absolutely perfect in every way.  From the window boxes filled with greens on the outside to the warm and inviting decor on the inside.  The warmth in the bakery made you want to stay and enjoy a warm cup of coffee with a yummy goodie.

And did we enjoy some delicious goodies!  Mini blueberry cheesecakes, buttermilk pie with a blueberry sauce (and this was gluten free!), apple and cranberry muffins, and homemade marshmallows to go with the hot chocolate.  There were other goodies to try but they had nuts and we all have nut allergies...except for my husband.

My daughter enjoyed our visit so much!  She was all smiles sitting by the window people (and puppy) watching....tasting treats just like everyone else!

While my daughter needs her friends (young and older) to be there to support her, her friends (young and older) need her to be there for them too.  The relationship my daughter and her one to one has is truly is.  I know it was special for my daughter to be there for her and her husband today....just like it was special for us too!

Here is a picture of my kids at the bakery (and my middle daughter's friend too!)

Here are two quotes for today...

1 Universe, 9 Planets, 204 Countries, 809 Islands, 7 Seas, and I had the privilege to meet you- Author Unknown

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

Friday, November 9, 2012

Her love for her grandparents....and great-grandmothers

Today's gift is her love for her grandparents and her great-grandmothers.

All my children are really lucky. They have three sets of grandparents (since my parents re-married) and two great-grandmothers.

Family is important to me...and it is important to my daughter.

When my daughter sees her grandparents, she truly lights up. She loves being around them. You can tell each one has a special place in her heart. Each one makes her feel special in a different way.

Today Mimi, Poppy and Nanny come down to visit. We haven't seen Poppy since his hip surgery, so we were all excited to see him...and he looked great! When I picked up my oldest daughter today from school (my middle daughter rode the bus home), Poppy was in the car with me. As soon as she saw him she started to walk faster to the car and when the door opened, she said loudly, "Pop-eeee"!

On our way home I said, guess who else is waiting for you at home and she said, "Mimi".... and then I said who else and she said "Nan-ne" . The whole way home she had a huge smile on her face.

When we got home and she saw Mimi and Nanny she started glowing. She loves spending time with them. Whether they are playing ball outside, going for a walk, playing Connect 4, watching a movie, snuggling on the name it....she enjoys this time with her grandparents and great- grandmothers.

Of course, my other two children can tell me how much they enjoy their time with their grandparents and how they spent their time together. However, my daughter with Rett Syndrome can not tell me about her time spent with her grandparents.

She doesn't need to....I can tell by her expression on her face.

I am so happy all my children have so many "grands" to love them, they truly are lucky!

Here are some quotes for today....

A family is a little world created by love- Author Unknown

Other things may change us, but we start and end with family- Anthony Brandt

This family...laughs & learns, prays & protects, apologizes & appreciates, dreams & discovers, fights & forgives, teases & trusts, gives & grows, believes & belongs, love & lasts....Forever- Author Unknown

Thursday, November 8, 2012

Being Decisive

Today's gift is being decisive.

Can you make decisions easily?  Sometimes I can and other times I can not.

A conversation often between me and my husband goes something like this....
Me: "we have a sitter tonight, where would you like to go?"....
Him: "what are you in the mood for?".....
Me: "I don't care, why don't you pick"....
Him:"how about "x"?....
Me: "I'm not in the mood to go there tonight"....
Him:"Clearly, you do pick"....
Me:"But I can't decide".....

However, if I asked my daughter with special needs where she wanted to go to dinner, she would go right to her iPad and tell me not only where she wanted to go, but what she wanted to eat!

This morning at therapy she started with her usual warm up on the treadmill, followed by stretching and then we moved to kneeling exercises and an obstacle course.  When it was time to do her on her stomach from the cage....she was shaking her head a matter of fact way.

We were all surprised as she had been requesting "push me"...this is what she says when she wants to fly.

Then she started running away from everyone in the room....and she had a little game of chase going on.  She knew at this time she wanted to get her sillies out and to not have to work.  She had made up her mind...she didn't want to fly...right then.

We still had 15 minutes left and at therapy no time is wasted.  She was given a couple of choices and she picked to go on the wobble board.  After she worked a little bit more...she stepped off and walked over to the cage where she flies.  When she was asked if she wanted to fly now, she said yes.

She wanted to fly on her time...not when they wanted her to fly.

My daughter always knows what she wants, it is getting the message across to us which is often difficult.

Luckily today, it was easy to see she wasn't ready to fly the first time and she needed to "relax" as even flying is hard work for her, as she uses her own body weight to make herself go back and forth.  She is no dummy...she wanted to play...and not work!

I can not begin to imagine what it must feel like to know what you want to do or say in your head...but not be able to communicate it to anyone.  Here I can verbalize my choice of a restaurant to go to...and I still can not pick a place...not because I can not....but because I'm being indecisive.

When I have a decision to make...whether easy or difficult...I try to just "make it" and move on.

Here are some quotes for today...

It's better to be boldly decisive and risk being wrong, than to agonize at length and be right too late- Marilyn Kennedy

Make up your mind to act decidedly and take the consequences.  No good is ever done in this world by hesitation- Thomas H. Huxley

You can conquer almost any fear if you will only make up your mind to do so.  For remember, fear doesn't exist anywhere except in the mind- Dale Carnegie

Here is a picture of her flying in the cage!