Friday, August 31, 2012

Sleeping in

Today's gift is sleeping in.

It is no secret...I am not a morning person.  I love to sleep in!  Not till the late morning hours like I did in college, but at least till 8:00 (do people even call this sleeping in!).  Unfortunately, ALL my kids take after my husband and they get up REAL early.  This house starts rolling around 5:00AM....daily!  There are days when I want to sleep in....there are days when I want my kids to sleep in....and there are days when I want both; however, the last one NEVER happens!

Today, my daughter walked into our room at 4:59 and crawled into our bed.  We put the tv on for her and within 20 minutes she was asleep again.  Now, if this was a school morning I would not have let her fall back asleep as we could be playing with fire when we tried to wake her again.  However, today is one of the last mornings she can sleep in and we were going up to my parents today to visit my cousins who were coming into the more time I had without kids awake (or at least one out of the three) the better for me to get things done to keep us on schedule to leave in time.  She slept till 9:00....which was so helpful for me this morning.  The more time I have to not rush always helps with smoother mornings.

Everything was perfect today....from a smooth a safe drive to my a wonderful visit with my a safe drive back a perfect evening!

I could not write this post either, without mentioning how wonderful my husband is to me on the weekends.  Since NO ONE in my house likes to sleep in (paybacks are going to be rough for my kids when they are older!) my husbands lets ME sleep in every weekend!  It is so wonderful and I truly need the extra kids wear me out!

So while I don't have kids or a husband who likes to sleep in, it is wonderful to know my one daughter will surprise me by sleeping in every once in a while to give me a break and my husband treats me like a queen on the weekends!

Here are some quotes for today....

Sleep is the best meditation- Dalai Lama

A good laugh and a long sleep are the best cures in the doctors book- Irish Proverb

Life is, sleep and dance- Unknown

Thursday, August 30, 2012

A "typical" meet the teacher day!

Today's gift is a "typical" meet the teacher day.

Guess what we did this afternoon.....we went to school to meet our teachers for this year!  It is going to be another great school year...I can just tell.  Every time we walked into one of her classrooms, she would sit down on the comfy chairs like she owned the place and make herself right at home!  She made her rounds from classroom to classroom, saying hi to all her teacher and friends, just like every other student.

Our whole family went as I needed assistance...between the three kids...three bags of school supplies....meeting the teachers...organizing their desks....purchasing "extras"....I just needed an extra set of hands.  My husband came with me this year and I was so thankful.  However, it was so crowded...I hope he doesn't remember this next I really liked him being a part of this with us!

My favorite part of today was all the kids running up to my daughter (the one with special needs) and saying hi and asking how her summer was like she was a super star at school!   I could hear numerous times, "mom look there is AC"......."look there's AC"...."hi AC".....and the smile on her face said it all.  She was grinning ear to ear!  When she wasn't with me, but her dad, her friends would come up to me asking where she was!  She absolutely loves school, no doubt about it and I know she was excited to be back.

It wasn't just the students but the teachers as well...."there is AC", "how is my sweet girl", "I see AC"....greeting her with open arms.  And let me tell you she has eyes like a hawk!  When she spotted her favorite teacher in the hall, she made a beeline for him....and then didn't want to leave his side!  It was so cute to see!  I hope he knows when she leaves for middle school in two years, he has to go with her there too!

I am beyond thrilled as 3 of her 5 best friends are in her class too....this is huge!  Every year I get nervous thinking none of her friends will be class with her, but this year 3 of them will be with her again....and I couldn't be happier!  This in itself, will help her to have an outstanding year by having her friends who understand and believe in her, right by her side.

Of course, my other daughter had a great time meeting her teacher too and seeing her friends...but this is to be expected...right.  She got the teacher she wanted and two of her best friends are in her class, so she is one happy little second grader!

My daughter has taught so many people at her school what students like her are capable of...if you believe.  Every year when I walk into her school, I feel like more and more people have been touched by her story and you can feel it in the air (I know this sounds cheesy...but I truly feel this way!).   My daughter has believers today....teachers and students alike....and I know she has made a difference in their lives, as well as, they have made a difference in hers.

Here are some quotes for today...

Nothing is impossible.  The word itself says, " I'm Possible"- Audrey Hepburn

If a child can't learn the way we teach, maybe we should teach the way they learn- Ignacio Estrada

Believe in the power of believing in yourself- Sandra Magsamen for Girl Power 2 Cure, Inc

Wednesday, August 29, 2012

Sympathetic Siblings

Today's gift is sympathetic siblings.

If my daughter didn't live with Rett Syndrome, I can not say whether or not my other two children would have the same level of sympathy for others who are suffering....particularly children with special needs.   They live with it 24 hours a day, 7 days a week, 365 days a year....and they see how hard life is for their sister.  They pray for her all the time, they ask the most heartfelt questions, they spread awareness, they are not afraid to talk about their sister to others....they are unbelievable for only being 5 and 7 1/2 (soon to be 8 years old).

Not only are they sympathetic towards her, but to all children with special needs.  Because of our life situation, we have become close friends with many families who also have a child with special needs.  My children care for their children too!  My children have realized we are all the same, but some of us have been given different challenges in life.  My children do not stare at handicap people in general when we are out in them....strangers are just people.  Sometimes when we are out my middle daughter will notice someone who has a special need and want to ask me a question...because she genuinely we have a "code" when we are out in public.  We make eye contact and I will nod if I know why...if not then she will look in the direction with her eyes...then when we leave the store or public place we talk about it in the car.  I know she has lots of questions and I always want to answer them for the right place.  And she knows we don't like it when someone stares at her sister.

My middle daughter is amazing when it comes to being a "little/big" sister to her older sister with Rett Syndrome.  What would you say if I told you she talked in front of a crowd of 250 adults when she was only 5?   And then she did it again in March in front of over 1000 people (high schoolers and adults)???  Impressive I know...especial since I do not like to talk in front of a crowd at my old age....and I certainly would never have done it at 5 or 7 years old!!   If you want to read what she said please visit this link, Her Climb Blog: We're all in this Together

Tonight while we were having dinner my middle daughter said, "Mom, when will they have a cure for Rett Syndrome?"  I said, "honey, I hope soon as they are very close to some potential treatments, but I do not have a particular date, just pray it is soon".  Then she said, "when they cure Rett Syndrome, can my sister walk me into school (the current school they both attend) and take the bus home with me so we can talk about our day?" this point, I just want to start crying...but I have to keep it together for my three children...but my heart is melting by the minute!  I respond, "well, I don't think it will be while you are at your current school, because your sister only has two more years left there (this year 4th grade and next year 5th), and I honestly do not think they will have anything for girls with Rett Syndrome in two years...I would love them too, and I pray nightly, but I do not want you to think it would be this fast."  To which she responds..."so when we are middle school and high school they will find a cure and I can take the bus home with her and she can walk me into school then?"  While I wanted my eyes to start flowing with tears right then and there and scream how unfair the world can be sometimes...I held it in and said, "I hope honey...I pray....and I would love nothing more than for your sister to walk you into school and take the bus home with you one day.  I want nothing more than a cure too!"  So I saved the tears for right now....writing this post.

The love she has for her sister is never ending and moments like these make me feel so sad for her.  She wants to have the "normal" relationship with her sister so badly and can't!  She is craving it!  And while she understands why she can not (and for 7 1/2 she understands much more about neurological disorders than any child should know!), she still holds onto the hope she will have the "typical" school experience with her sister one day.  While they go to the same school and share many "typical" things (my middle daughter is known as my oldest daughter's "little sister"), I know she only wants to have the "typical" sibling relationship like her peers have with their sisters.  My heart truly ached for her tonight, but I know due to her sister having Rett Syndrome she is one strong, understanding and sympathetic child who I am so proud to call my daughter.

Here are some quotes for today....

You don't chose your family.  They are God's gift to you, as you are to them- Desmond Tutu

A sister is a forever friend- Unknown

The best thing about having a sister was that I always had a friend- Cali Rae Turner

A sister is a little bit of childhood that can't be lost- Marion Garretty

Tuesday, August 28, 2012

Mother/Daughter Moments

Today's gift is Mother/Daughter Moments.

What mother doesn't want to experience a typical mother/daughter date, outing, or trip with their daughter?  I enjoy these moments with both of my daughters and individually with them.  While they are always easier with my middle daughter, they can be challenging with my oldest.  I always have to make sure I plan them accordingly and have a Plan B waiting in case something happens.

Today, the girls got their back to school haircuts.  I love taking them to the hair salon, but I really love taking my daughter with special needs.  When we first started going to this one salon...the same one I go to...I would have to go with a bag of tricks and tell my stylist to work fast as I knew she wasn't going to last long (when she first started with my stylist she could only sit at her desk in school working for 5 minutes!).   My daughter would only go to this one salon and I don't blame is quiet, calming and soothing....who wouldn't want to relax in this environment and be pampered.  Now picture me coming in with my daughter (always have our standing 9:00 Saturday morning
appointment....because this is a good time for my daughter) with snacks, photo albums, and movies on her iPod (yes before iPads and iPhones were around!).  Looking at us was anything but soothing and relaxing to the outsider, little did they know I was doing all this to relax my daughter in a potential stressful situation for her.

Fast forward to today....years later...when my daughter gets her haircut she doesn't need any reinforcers other than looking around at everyone else getting their hair cut.  She takes it all in just like you or me!  Now she can sit for 45 minutes and let her stylist cut her hair the WHOLE time!  It is so incredible to see....she loves it!  I try to keep our early morning appointments as she does do better in the mornings....with everything...but today we tried an afternoon appointment.....and she did fantastic!  I was so happy for her!!!  I always carry in my bag "goodies" for the just in case moments, but most times I do not have to bring them out.  I just love how she can enjoy a hair cut in a relaxing setting just like I can!  It didn't happen over night, but it did happen!  Of course, with this nice salon there comes a higher price tag than what most of my friends are paying for their children's haircuts....but to see her sit for so long and be pampered, I tell my husband, I would pay anything!  He finally agreed!

This evening I was able to share another mother/daughter date with my girls.  We went to a fundraiser for my daughter where you paint a picture....everyone was painting their version of the Girl Power 2 Cure flower for Rett Syndrome.  My friend, whose daughter has been in my daughter's class for 2 years (and this year will be the 3rd!), arranged for tonight to happen.  It was so much fun.  I think we had at least 20 mother/daughter combinations.

Evening events are always harder for my daughter for many reason, but the main one being she is tired at the end of the day.  I have to always remind myself she works double or triple time all day long, so she has every right to be tired.  I never want to push her, but at the same time it is hard for us to do things as a family unit at these later times of the day.  This is when I need to have my Plan B.  Without a doubt I did not want my daughter to miss coming tonight, after all it was for her!  However, I knew she wasn't going to last long, as she was already showing signs this afternoon she was tired....she had Physical Therapy at 8:30 this morning for an hour, worked with her teacher, and got her haircut!  Was I playing with fire to try and take her tonight?

I had a plan....we were all, my mom and my two girls...and when I saw my daughter showing signs she was ready to be done, my husband would come pick her up.  It was the best of both worlds....I got to experience another mother/daughter date with both of my girls...even if it was for an hour (I will take any time I can get) and when she was indicating it was time to go, I didn't have to shorten the time for my other daughter.   The plan worked out very daughter was there for me to introduce her to everyone so they could meet a little girl who lives with Rett Syndrome and remember her as they paint their pictures with the Girl Power Flower.  She was there to share painting time with me and paint her background of her picture.  She was there to get a delicious cupcake made by our dear friend who organized the event.  She was there long enough to share a special moment with me, her sister and grandmother.

Driving home we talked to my dad and my decision to have my husband come pick her up was right on....she was already asleep.  Hearing this made me feel so much better, as I always have a piece of me which is broken when I can't share all mother/daughter experiences with her like I can with my other daughter.  However, I will take the time we do share with these experiences over not experiencing them at all.

Here are some quotes for today....

The love between a mother and daughter is forever- Barbara Cage

There is no way to be a perfect mother, but there are a million ways to be a good one- Jill Churchill

Sometimes the things we can't change, end up changing us- Unknown

Monday, August 27, 2012


Today's gift is change.

Every school year I get a little nervous about the changes my daughter will have in work.  The day the teacher assignments arrive in our mailboxes, I am just as nervous as my middle daughter, as I want to make sure my daughter with Rett Syndrome has friends in her class too.  I want to protect her as long as I can.

Teacher assignments have arrived and she has two of her five closest friends in her class, with one still being an unknown!  I am super excited for her!  Fourth grade, they also start to change classes, so instead of one new teacher, she potentially has two new teachers and another set of classmates to add to the rotation.  I am confused just thinking about it!  My little girl is growing up....everything is changing too fast!

While my daughter may be nervous on the inside about starting school every year, you would never know it from the outside.  She walks into school like she owns the place and to hear everyone saying hi to her with the fist pump (the sign everyone knows for my daughter to say hi....long story!), truly melts my heart!  Thursday is meet the teacher day and while I am excited for my girls, I am also nervous.  I don't think a school year will ever come and go where I will not be nervous for them, but especially my oldest daughter.

Seeing how my daughter handles change head on, has helped me handle change in different areas of my life. A most recent example is,  my youngest is going to a new preschool for his last year of preschool this year as I was tired of driving an hour a day (total driving of taking and picking him up) in a three hour window.  He also wasn't able to take advantage of any after school activities as they were over at the same time I had to pick the girls up from school.  I would do anything for any of my children (hence driving so far for a preschool I loved), but there comes a time when I have to look at what I can change in my life to help me and those I can not change.  Changing preschools for his last year will allow me to have an extra hour a least...for me to be able to do more for my family (and have some extra me time too....I will  not lie!) and he will be able to participate in programs offered after school!   He is super excited and didn't complain when I told him the news....had I only done this sooner!

I had a meeting tonight for my middle daughter's brownie troop and I was talking to another mother who also has a child, a son, with special needs.  We were talking about how the most important thing to both of us is not the academics our children get from school, but the socialization they get from their peers.  If my daughter learns academics...which she does above and beyond...this is an extra bonus, but what I want most for her is to have friendships.  I want her to be a kid and remember the happy times of going to school and what it was like to be with her friends.  When I look back at when I was in fourth grade, I don't remember the tests I took or the books I read, but I do remember what I did with my friends, who was my best friend and these were the best memories.  This is what I want for my daughter.

As she gets older and older, change is something I fear for her, but at the same time, change is also good.  Last year, she had a new teacher in her autism classroom and it was a BIG change, but a change for the BEST.  She had an incredible year!  I pray every year she will have this same "core" group of friends and they will continue to grow together, as will their friendship.  I pray I can approach change with the same calmness my daughter does and learn there are some things we can change and others we can not.  But in the meantime we will relax and enjoy the moment.

Here are some quotes for today....

God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference- Reinhold Niebuhr

Always remember that the future comes one day at a time - Dean Acheson

You must be the change you wish to see in the world- Mahatma Gandhi

The only way to make sense out of change is to plunge into it, move with it, and join the dance- Alan Watts

Sunday, August 26, 2012

Being Calm

Today's gift is being calm.

Many times throughout my daughter's life she has been extremely calm in situations where you would have thought she would become agitated or upset.  Through these times, she has taught me to remain calm when a stressful or unknown situation arises.  I wish I could say I "always" remain calm, but I do not.  I need to constantly remind myself, to be calmer.

Tonight as I was putting my daughter to bed everything was going the way it normally does....we were cuddling in bed, reading her favorite stories and then we were starting to read her chapter book.  When I read to her, I will glance at her face often to see if she is starting to get sleepy and to just look at she is always so peaceful when she is falling asleep.

When I looked at her as I was reading her chapter book, she had "the look" on her face....the look which indicates she is not happy.  I knew something was about to brew.  I kept reading and told myself to be calm.  As I was reading, I was also going over in my head all the funny things I could think of which usually make her laugh so I could incorporate them in between my pages of Judy Moody.  This was working and then out it came...."PP....Bee"....these are her go to "I am mad" words.

Now, to the outsider, you would think "pp" means she has to go to the bathroom.....if she didn't have "the look" I would tell you, you are correct; however, in this case, it is not.  I didn't want her to escalate and have a behavior as she has had such a great day....and a great week for that matter!  So I just kept breathing and remained calm.....talking to her in a soft voice....telling her I was so sorry I did not know what was bothering her.  I asked her if any part of her body hurt and she said "yay" I started naming off all her body parts....and she responded "yay" all of  them.  Unless she hurt all over, which is unlikely, I didn't think her answers to me were accurate.  I even went a step further and asked her a silly question, which she also answered with a "yay"....validating what I thought.

It breaks my heart, to see her upset and I have no idea what is wrong.  If I only knew, her life would be so much easier.  I just looked at her and continued to tell her how sorry I was and I wish I knew what was bothering her.  Then a tear fell from her eye....which then makes me feel like the worst mom on the planet!  Here my daughter is upset....crying....and I have no idea why she is upset or how to help her....I only feel helpless.  As I looked in her eyes....of course with tears in mine...I just told her how much I loved her over and over and over again.  Our eyes, connected and I know she understands I would do anything for her....and it truly does break my heart to see her like this.

While I was talking to her, I started to sing some of her favorite songs and I noticed she had her hand on her stomach....they were up higher as she was wringing them when she was more upset, but as she calmed down she placed them on her stomach.  I asked her if her stomach hurt and she said "yay"....this time I think she meant it....for two reasons.  One, she was calmer, when I asked her the question and two I gave her some stomach medicine and she was asleep within 15 minutes!

When my daughter is very upset there is no reasoning with her as she has reached the point where nothing matters and we need her to "be calm" for her to listen to us.....the same is true for me....I need to "be calm" for her when she needs me to listen to her....which means watching her body language as her body language speaks volumes!

While her medicine was working, my husband came in to see how she was feeling and she got a huge smile on her face!  After seeing this smile I knew she was going to be okay....her daddy snuggled with her in bed after she said she wanted him to lay with her, and I was okay leaving them to drift off to dreamland together.

Until she can tell me what is wrong every time she is upset, I will always feel helpless not knowing....but I will always try to be calm for her and I hope she will be calm for me too, so we can help each other when we need each other the most.

Here are some quotes for today....

Remain calm, serene, always in command of yourself.  You will then find out how easy it is to get along- Paramahansa Yogananda

Calm can solve all issues- Pope Shenouda III

Keep calm and carry on.....I couldn't help but put this one down....they have Keep Calm for everything now!

Saturday, August 25, 2012

Being Home

Today's gift is being home.

Being on vacation is wonderful, but there is nothing like home sweet home.  I love watching my kids run in the house when we return from a trip and run around making sure all their "stuff" is still where they left it.

Today, my daughter was walking around the house as if she was really checking things out and I have never seen her do this amount of searching before coming home from a trip!  Usually she will do a quick walk around and then sit down on the sofa and want to watch tv (which I can't believe she wants to sit MORE as we were just sitting in the car for 7 hours!!!).    This afternoon, she went from room to room on the first floor and would spend time in each room making sure everything was in its place, before going to inspect the next room.  When she was all done, she grabbed her yearbook and plopped down on the sofa.

Two things amaze me about is she didn't ask for any tv (maybe being on a television break for the last week really worked!!!) and two, today while we were driving home the girls got their teacher assignments in the mail.  We had our friend call us when our mail arrived to tell us who the girls got for their teachers.  The rest of the ride home was filled with texts and emails from friends with their teacher assignments.  My daughter, really listened to us talking and telling her about which friends would be in her much..... when we got home all she wanted to do was look at her friends in the yearbook!   I think she is not only excited to be back home, but also to start school!

There is nothing like being back home and being able to sleep in your own bed....and this is true not only for my husband and I, but also the kids.   Everyone loves being back in their own room, in their own bed, on their normal schedule.  While vacation is over, we have another week full of memories to reflect on until the next family vacation.

Here a couple of quotes for today.....

The ache for home lives in all of us, the safe place where we can go as we are and not be questioned- Maya Angelou

A house is made with walls and beams, a home is made with love and dreams- Unknown

Friday, August 24, 2012


Today's gift is waves.

If you ask my kids what is the first thing they think of when they hear the word "waves", they probably will tell you ice cream, as the place they love to go get ice cream at the beach is Waves.  When I think of the word "waves" I think of the ocean. 

Today is our last day of vacation for the summer before school starts and sadly it was a rainy day.  However, as soon as the rain stopped we were on our way to the beach to sit in the sand and watch the waves crash one more time before we go back home.  While we were not in our bathing suits on the was a little chilly....being in shorts and sweatshirts/long sleeve shirts didn't stop us from having fun....or getting in the water like my son did!

I love nothing more than sitting next to my daughter on the beach and watching the ocean.  I love everything about the ocean water....the smell, the color (depending on where you are in the world), the salt (especially for any cuts or scratches as it heals them faster), and the sound of the waves crashing on the shore.  The ocean is mesmerizing.   You can be in the worst mood in the world, but as soon as you sit down on the beach and watch the waves crash on the shore and the water move in and out from the shoreline, you slowly forget why you were feeling upset in the first place. 

My daughter could look out at the ocean all day....she loves watching the waves and I think she is truly trying to figure out how they move...especially when she is sitting on the edge of the ocean with her feet in the sand.  I feel like when she is looking out at the ocean she feels at peace and I only wish I knew what she was thinking about.

When I look out at the ocean and watch the waves I think about everything I have going on in my life and the water helps me think clearly.  The constant movement of the water reminds me, no matter what challenges life hands me, I will be okay and life will carry on.  There may be bigger obstacles in my life at times, just like there are rougher waters in the ocean during different times, but eventually the waters will become calm again.

The ocean is the one place our family visits and instantly we feel relaxed.  The ocean is a special place to our family where we share one of nature's simpliest gifts year after year.  The ocean always heals the soul.

Here are some quotes for today....

The cure for anything is saltwater....sweat, tears or the sea- Isak Dinesen

I have always loved the beach.  The smell of the salty water, the wind in my face, the gentle roar of the waves all combine to create a sense of peace and calm- Anonymous

At the beach, life is different.  Time doesn't move hour to hour but mood to moment.  We live by the currents, plan by the tides and follow the sun- Anonymous

I could never stay long enough on the shore; the tang of the untainted, fresh and free sea air was like a cool, quieting thought- Helen Keller

The waves of the sea, help me get back to me-Jill Davis

Thursday, August 23, 2012


Today's gift is choices.

Imagine if someone asked you a question and you could not give them an answer.  Imagine if you gave them an answer, but the other person still did what they "thought" you wanted or what "they" wanted, instead of what "you" indicated.  I feel like this happens a lot with my daughter who has Rett Syndrome.  We ask her what she wants, but do we really listen to what she says?  And if we listen for the response, are we following through with her answer or doing what we would have anyway, as if she never spoke her opinion.

Today, we were sitting on the back porch and we asked her if she wanted to go in the car for a ride with me and my mom (aka Mimi).  She had a huge smile on her face, that would normally signify, "yes" she wanted to go.  But today, I wanted to make sure she truly wanted to go with us and I didn't want to assume (as you know what happens when you assume....).  Her iPad from school has recently been updated and we noticed that her app for "yes and no" has been deleted since the update.  I have an email into school about we had to go to plan B....which is either using my hands as her cards for yes and no....or making two cards from paper, with the words yes and no on them for her to chose from when I ask her a question. 

I opted to make cards for her and we asked her the question again...."do you want to go for a ride in the car to the store?".....and she signaled clarify that the smile was correct.  I was glad to see that her response was what I would have "thought" it was, as I would have felt bad if I assumed. 

My daughter is pretty much always happy and will go with the flow often.  But I do not want to take this for granted, as I always want to respect her opinion.  I feel like we "ask" but do not "follow through" with what she says, and I can only imagine how frustrating this could be.  We all have the freedom of choice and we all should be given the opportunity not only to voice our opinion, but for them to be heard.  Whether it is what she wants for a meal, what she wants to do during down time or if she wants a certain book to read at night, I will listen and look for what she is telling me, as she is making a choice, and I do not want her to think that I do not value her opinion or will assume she means something else.

Here is a quote for today...

No one else can ever make your choices for you.  Your choices are yours alone.  They are as much a part of you as every breath you will take, every moment of your life- Dr. Shad Helmstetter

Wednesday, August 22, 2012

Family Time

Today's gift is family time.

The other day I mentioned in one of my posts, that we are a society that is constantly on the go.  And as kids get older, they become more and more involved in after school activities during the week and on the weekends (sometimes I think we should blame ourselves as we are the ones signing them up for everything!).  I prefer to have our children do their activities on the weekends, if possible, as then I can have help from my husband (and I don't like having to ask others for help with the kids as I feel bad), but then on the flip side we like to have time as a family too on the weekends.  However, with three children and three different activities we are often going off in different directions. 

Family time is very important to us and we value the time we share together.  My daughter with Rett Syndrome, loves it when we all do the simpliest things as a can be sitting on the porch together talking, playing a game together, going for walks, or going for golf cart rides at the beach.  It doesn't have to involve money, only quality time spent with each other.  By the time the weekends come I am ready to relax and not do any more running around. 

When our family goes on vacation we started "turning technology off" and enjoying the outdoors and each others company more (I know everyone in my family is laughing right now as I am the worst when it comes to turning technology iphone....I am addicted, I will not lie, but it is also my camera so it seems like I am on it more....but I have been much better than I have in the past!).  The kids complain when I tell them that they can not bring their iPads on vacation, but once we are there they forget all about it! 

This week we have been enjoying an incredible week at the beach with our family.  The tv has been off (except for a few occasions when my daughter with special needs needed to watch her favorite show and we wanted to avoid a behavior) and no one has missed it and no one has asked to watch a tv show or a movie....and we are surviving!!!!  No one has asked for their iPad or to use my iPhone, other than to look at the weather app....and they are surviving (I guess I could take a lesson from them too!).  We have had good ole' family fun... days on the beach and in the pool, talks on the porch before and after dinner, golf cart rides around the beach, playing games together, putting together a huge puzzle that took 3 days (I can't tell you the last time I did a puzzle with over 1000 pieces!).....and every other little moment in between.

Today's gift came to me this evening, when we were driving the golf cart around the beach roads after dinner laughing and giggling together (golf cart rides are always one of the main highlights of our beach trips!). There was even a light rain falling that didn't bother us or the moment.  When we went back to the house, we made desserts for the kids to enjoy on the porch where we continued to have quality family time together....with no interruptions.  The kids were talking about their day, saying how much they enjoyed our time a family, they both wanted their sister with Rett Syndrome to sit on their lap on the she took turns sitting on their laps.  When she was on my middle daughter's lap, she put her hands around her neck, to hug her....she initated a hug and wanted to bond with her sister....and then give her was the sweetest thing to see (they are very close and share a special bond). Then when it was her turn to sit on her brother's lap, he wanted to show her some affection too, so they had a stare down....nose to nose....typical boy....but it was so cute to see....and she loved it!  I didn't want this time on the porch to end and could have stayed out there in our little world forever.

All my children love the time that we spend together as a family, but my daughter with special needs truly enjoys bringing us all together and you can see it in her eyes and by her actions.   I always want us to have these special times together, daily if possible, but weekly would be second best.  She is our constant reminder to slow down, relax and to enjoy the moment together.  This gift is not only for me, but to our whole family, especially to her siblings.  Seeing the time they spend together melts my heart and is a gift itself....for another blog...on another day.

Here are some quotes for today....

To us, family means putting your arms around each other and being there- Barbara Bush

Family is not an important thing, it's Everything- Anonymous

While we try to teach our children all about life our children teach us what life is all about- Angela Schwindt

Family, we may not have it all together, but together we have it all- Anonymous

Tuesday, August 21, 2012

Good Appetite

Today's gift is a good appetite.

There is one battle I can honestly say I have never had with my nonverbal daughter...I have never had to "make" her eat food...she has always loved it.  Now I will say, I had to help her learn how to suck and swallow at the same time when she was a baby.....she could do both independently, but she could not do them simultaneously.  It didn't take her long to learn, as she loved to eat!

I didn't appreciate having a great eater until I had to experience a picky one.  My second child, also a daughter, was an incredible eater until she hit the age of 5, then she became picky, picky, picky.  Everything she used to love, she now thought was gross.  This was so frustrating to me, as the one who I thought would be the picky eater, was the best eater in the house.  And as luck would have it, my youngest who was 2 at this time was also a great eater, but since he mimicked everything his sisters did, he chose to follow in the footsteps of my middle daughter and become a picky eater too....just because!

Fast forward 2 1/2 oldest (soon to be 11) is still a fantastic eater, my middle child (soon to be 8) is a MUCH better eater and my youngest (just turned 5) is still picky....but will try new things.....with a lot of bargaining!  It has been extremely nice to not have to fight one of my  three children to eat breakfast, lunch and dinner.  We like to eat new foods and we also like to eat healthy.  I am not a mom who is going to make meals for everyone in the house....I cook one meal and if you don't like it....then you don't get dessert and you wait until breakfast to eat.  Usually, when everyone is eating dessert, the one who is not eating dessert, will get upset and will ultimately finish their dinner (which I save, just in case) and then they can have 1/2 of a dessert.  What gets me even more...once they FINALLY eat it...they actually LIKE it!  Thank goodness, one of my children, doesn't like to drive me too crazy and will appreciate good food from the beginning!

Tonight at dinner, we had a wonderful dinner prepared by a dear friend....thinly sliced steak, rice mixed with zucchini and beans, caprese salad and garlic was delicious.  My daughter ate all of it and wanted more.....she truly has an appreciation for food.  She loves it....morning, noon and night!  It is a breathe of fresh air to have one child who doesn't complain about what we are having for dinner, as this is the worst meal to try and please five people.  Now you may ask, how do I know she if she truly wants what we are eating since she can not communicate verbally that she doesn't like what we are me.  If she didn't want to eat it...then should would not open her mouth or she would throw her fork.....she definitely has ways of telling me if she doesn't like something.  However, when it comes to food, there is hardly anything she dislikes.

Here are some quotes for today...

It's easy to impress me.  I don't need a fancy party to be happy.  Just good friends, good food, and good laughs.  I'm happy.  I'm satisfied.  I'm content.- Maria Sharapova

One cannot think well, love well, sleep well, if one has not dined well- Virginia Woolf

Be a fruit loop in a world full of cherrios- Anonymous 

Monday, August 20, 2012


Today's gift is humor.

I love it when I hear my daughter laugh, but I love it even more when she creates the humorous moment in which we are all laughing!

This afternoon we were in the pool and she wanted to have some of the cherries that her daddy was eating. He came over to her in the pool and put his beer down at the edge of the pool while he was pitting the cherry. Apparently she thought he was taking too long so she grabbed his beer and threw it in the pool, and laughed hysterically! We all started laughing too, because anyone in our family knows NOT to leave cups, glasses, etc., near her otherwise she will fling them and here on "daddy's watch" she did just that....and she got one over on him! 

Both instances of humor today, involved the pool....which is her favorite place!  For some reason, she does not like wearing hats or visors or sunglasses.  She will keep them on for a little while and then they get tossed off like she is swatting at a fly!  Whenever we are out in the sun, I like it when her head, face and eyes can be protected.  Sunglasses are her least favorite, so we often compromise with a hat or visor....but this too doesn't last too long.  Whenever she decides she has had enough of her hat, she throws it off and wherever it lands it it was in the pool.  I go over and put it back on and tell her she needs to protect her beautiful face.  As soon as I turn around, she throws it off again...this time with a laugh.  Now it has become a game.  When it gets to this point, I will often let her win, until I can sneak it back on and hope she will not throw it off for a while.

Seeing her do something funny is such a treat to me.  I love the fact that she knows "how" to be funny and that she laughs at her own jokes! 

Here are some quotes for today...

Like a welcome summer rain, humor may suddenly cleanse and cool the earth, the air and you- Langston Hughes

Humor is the greatest thing, the saving thing.  The minute it crops up, all our irritation and resentments slip away, and a sunny spirit takes their place-Mark Twain

Good humor is one of the preservatives of our peace and tranquility- Thomas Jefferson

Sunday, August 19, 2012


Today's gift is silence.

For many of you, you may be wondering why her gift today to me is silence, when all I want in the world is for her to talk to me.  Trust me, I want my daughter to be Little Miss Chatterbox, but there is something about having complete silence at times too.

Often my head wants to explode from the constant questions of "wants" from my other two children that often results in whining....and if it is not the whining than it is the bickering back and forth between the two of them.....and the rest of the time they are angels who help me more than I realize.  However, because of the whining and bickering, I want to go find a secret hiding place where no one can find me to get FIVE minutes of silence.  A little bit of silence to me, is like taking a 15 minute cat nap....I feel refreshed and relaxed.

Many times when I am with my daughter with Rett syndrome, there is no silence for she is either humming, saying my name a million times (I love it...not complaining!!!), playing on her iPad, or she is doing roll call by saying everyone's name she knows (it is so cute to hear!).  But there are moments when we sit together and there is complete silence and I truly enjoy these moments of peace with her.

Twice today we experienced complete silence together.  The first time, a huge rain storm came through and we were sitting on the screened porch.  It was so relaxing looking out at the rain falling and to actually listen to the storm.  It is no wonder they have rain and thunderstorm as options on sound machines!  I can't tell you the last time I sat outside to just listen to the rain in complete silence. 

After we came in from the pool today, we were relaxing on the porch in rocking chairs.  Everyone else was in the house and the only thing we could hear were birds chirping.  The two of us just sat holding hands watching the trees sway in the breeze.

It was at this moment I realized that her gift to me today was silence, but at the same time she was giving me her gift we were also enjoying the gift of nature from God.  The rain, wind, thunder and lightening, and the birds....we appreciated them all today for their true sounds and beauty.  I never really stop what I am doing when it rains to really enjoy the sound and fresh smell, just like I don't stop to enjoy hearing birds chirping.  They have become background noise to me and something I just know is there.

Today I truly enjoyed experiencing moments of silence with my daughter as we shared the beauty of nature together.

Here are some quotes for today....

Silence is a source of great strength- Lao Tzu

We listen too much to the telephone and we listen too little to nature.  The wind is one of my sounds.  A lonely sound, perhaps, but soothing.  Everybody should have his personal sounds to listen for- sounds that will make him exhilarated and alive, or quiet or calm....As a matter of fact, one of the greatest sounds of them all- and to me it is a sound- is utter, complete silence- Andre Kostelanetz

We need to find God, and he cannot be found in noise and restlessness.  God is the friend of silence.  See how nature- trees, flowers, grass- grows in silence; see the stars, the moon and the sun, how they move in silence...We need silence to be able to touch souls- Mother Theresa

Saturday, August 18, 2012


Today's gift is perspective.

Do you ever wonder what your life would be like if one thing was different?  I didn't until I had to. 

We are getting ready to go on a family vacation and as I was starting to pack I was thinking about all the things I had to remember for everyone.  I feel like the list will never end.....clothes (for 5 people), shoes (for 5 people), personal items, toys (each child can take one bookbag full of items that they want), books (for all of us), beach bag, towels, snacks, camera, video camera from my daughter's room, sound machines, box fan, ipads, movies, phone/ipad chargers, medicine, my daughter's AFO (brace for her leg), wike trailer, pool toys, snacks and foods that I don't want to have to buy once we get to our destination.  Reading this list it doesn't seem like a lot, but somehow all this "stuff" takes up an entire Yukon XL, with a Thule on top!  I feel like we always bring so much "stuff" and I wish we could pack one bag and just be able to jump in the car and go!

However, we can't because we have to think of all the things we need that will make my daughter happy and what will keep her happy if she gets upset, along with her AFO and medicines that we can't get over the counter.  We have to be ready to pull out all the tricks we know in case the ugly Rett Monster rears its head!

But then I stop and think....what am I complaining about....I don't have it nearly as hard as other families who have a child with special needs.  Her "must haves" for traveling are her ipad, medicine, AFO, movies and her wike trailer/cruiser (depending on our destination).  This is nothing considering all of them, can fit into one medium sized bag except the last two!  I instantly, start thinking of all my friends who have a child also with special needs, but whose child requires more "stuff" when they travel....nebulizers, wheelchairs, tube feedings, AFO's, suction machines, longer lists of medicines, glasses, walkers, and the list goes on and on....

Your perspective changes when you have to look at your life differently and there is no choice, like when our family received the news that my oldest daughter has Rett Syndrome.   However, your perspective also changes when you compare yourself to someone else who lives in your shoes, but on a different level (another family who has a child with special needs). 

My life with my daughter who has Rett Syndrome is not easy, but it is easier than other families I know who also have a child with special needs.  I didn't truly appreciate this perspective until my daughter was a little older and we could start doing things more as a family unit.  Of course, there will also be a part of me that wishes we could go and do like I always dreamed we would as a family before Rett entered our lives.  Now I am just thankful for all that we can do and will do as a family.

Here are some quotes for today....

A little perspective, like a little humor, goes a long way- Allen Klein

Do what you can, with what you have, where you are- Theodore Roosevelt

Faith gives you an inner strength and a sense of balance and perspective in life- Gregory Peck

Friday, August 17, 2012


Today's gift is imitation.

We all know that in order for a child to learn a new skill or play a new game, they have to be taught the skill or game first.  All children learn many things by imitating someone else doing them.  I see this in my house every day with all three of my children.....and they are imitating not only the good, but also that bad!

As a parent with a child with Rett Syndrome, seeing my daughter imitate others is extremely rewarding.      Don't get me wrong, I am excited when my other two children imitate one another to gain a new skill too...but I expect them to teach each other through imitation.   But seeing my daughter who faces challenges every day such as expressing her true thoughts, feeding herself, dressing and climbing the stairs, imitate one of her siblings simply amazes me....and at times I will take the bad, because with the bad there was something good....she imitated them!

Three years ago I had a music therapist come to the house to do an evaluation on my daughter.  I knew that she would love music therapy as she loves music, but life happened and I never got back to the woman after our initial my defense, I think all three kids had so much going on at that time, and I possibly couldn't think of putting one more thing on my plate (and I didn't think that the timing was right for adding another type of therapy then).  Today I revisited, music therapy and the same woman came out to meet with us.  I am so glad I waited three years!   My daughter was like a different child today during this evaluation.  Three years ago she enjoyed the different sounds the instruments made, but she was more agitated she was dancing, IMITATING the music therapist with the different instruments (the drum was her favorite) and she was intrigued by how the instrument actually worked!  She seemed to be calm and many times she was NOT hand wringing, but she was enjoying the sensory output from the instruments!  I was so excited to see her enjoying herself and I can't wait to see how music therapy can help her in the future!

Tonight before we went upstairs to get ready for bed, we were all in the family room catching up on our day.  We looked over at my daughter and she was jumping up (backward) on the arm of the chair to sit on it, IMITATING what her siblings do....all the time....and guess what....they get in trouble for this.  Once she was perched up there like she was getting away with something....which she was....we told her how proud of her we were for getting up there all by herself.   She was smiling from ear to ear....not because she climbed up on the arm of the chair by herself, but because she was getting away with something she knows her brother and sister get in trouble for!

My daughter is a visual learner without a doubt....just like her mother!  I am so happy for her when she feels she has enough confidence in herself to try something new and succeeds when she does it.  And if she doesn't, then she will keep practicing until she can do it.  When it comes to learning for my daughter the key to her success is repetition, repetition, repetition.....whether it is her doing something over and over and over again,  her seeing something over and over and over again, or her hearing something over and over and over again.  It may be the 4th time or the 35th time before it sinks in, but when it does, all the hard work and IMITATING is well worth it!

Here are some quotes for today...

One learns about painting by looking at and imitating other painters- Frank Stella

Children are great imitators, so give them something great to imitate- Anonymous

The potential possibilities of any child are the most intriguing and stimulating in all creation- Ray Wilbur 

Thursday, August 16, 2012


Today's gift is joy.

There is nothing I like seeing better than the emotion of happiness (joy) on my daughter's face with her smile or hearing it in her giggles.  Equally, I love seeing the sheer joy she brings to others when they see her!

There are three ways joy was given to me or to others today as a gift.  Every morning when my daughter's teacher/friend comes to be with her, she gets the biggest smile on her face and says her name with so much joy in her voice!  Over the summer, I have the privilege of being able to see her "work" and listen without her (my daughter) knowing I can hear her.  They work at her desk in her room and we still have a monitor in there so we can monitor her at night.  So when I am in my room, I can hear all their is amazing to hear her communicating both verbally and with her iPad.  I love hearing her communicate with her own voice as I love hearing how excited and happy she is!  She truly loves to learn!!!

Today is my grandmother's (my kids great-grandmother) birthday.  Whenever it is someone in our family's birthday we call them up to sing the birthday song.  Lucky for all of us she can pretty much say everyone's name in our family.  When we sing the birthday song, we all stop singing when we get to the part "dear" in "Happy Birthday Dear....." and we look at her...and she with so much joy in her voice she says their name loud and clear.....and then we finish the song.  No matter whose birthday it is the two seconds it took my daughter to say their name is their gift!  She is so proud of herself in these special moments where she can participate in something special with the rest of us.

This afternoon we had to bring all the campers from our last week of camp, their journals and photo collages.  When we stopped at one of my daughter's friends house she came out to the car to see us.  Without hesitation she opened the back door to see my daughter....and she does this every time we see her!  I don't know who is more joyous at that daughter for her friend, her friend for my daughter, or me for seeing the interaction between the two of them!  My daughter lights up when her friends are around and they interact with her....she loves it!  And I love how much joy she brings to them.  This one friend in particular is always thinking of ways to help my daughter, not only by raising  awareness to everyone she encounters (most recently she wore the Girl Power 2 Cure flower on her cheek to the orthodontist), but also by raising funds to help find a cure (her ideas are endless).

The emotion of great delight or happiness, caused by something exceptionally good or the definition of joy....and joy is exactly what I feel in my heart when others want to help my daughter. I also feel joy in my heart, knowing my daughter is making a difference in other's lives as well.

Here are some quotes for today....

Joy is a net of love, by which you can catch souls- Mother Theresa

Since you get more joy out of giving joy to others, you should put a good deal of thought into the happiness that you are able to give- Eleanor Roosevelt

Only those who have learned the power of sincere and selfless contribution experience life's deepest joy; true fulfillment- Tony Robbins

Wednesday, August 15, 2012

Don't sweat the small stuff

Today's gift is don't sweat the small stuff.

If you have been following my blog, then you know that I have made references to the fact that my daughter is a "swiper" and likes to get my attention "rearranging" things in the house (my post about Laughter).  I like to let my daughter move freely around the house and to be able to roam about without me having to be on her constantly to pick up what she has "rearranged".   If I did this all day (and trust me I have) I would get nothing accomplished and it is rather frustrating....for both of us!  Can you imagine if someone walked behind you all would drive you crazy.

This is what I have to keep telling myself, when I want TO "sweat the small stuff".  I don't want her "rearranging" and throwing things down to make it look like a tornado has gone through the house.  I don't like the house looking so messy, but also I don't like having to pick up the majority of it.  This is an on going battle we have and some days are much better than others.  However, lately my daughter has decided to knock it up a notch and go for the bigger and heavier hanging on the walls!

After two fell and luckily didn't do any damage to her foot when it dropped (but the poor wall took a little beating), I decided I had to stop "sweating the small stuff" and make the right decision....thanks to Poppy...aka my dad.  I had to I want to keep following her around like bees on honey OR let her roam and know for the most part the house is going to be ok.  I decided letting her have her freedom was more important than my house being "perfect".  So,  I could have no pictures on the walls....which isn't an option to me or I could nail the pictures to the wall (the heavier ones that tacky putty would not hold up) so she cannot knock them off the wall risking a broken foot.

Today, my dad helped me make sure that all my pictures hanging on the walls were "Pookie Proof" (we call my daughter Pookie).  She was not around when we did it and I wish I had taken a picture of her face when she rounded the corner, looked straight at me and tried to swing the picture on the wall.  She was used to swinging it with such force, that when she went to move it, her hand actually slid off the picture since she wasn't moving it!  The look on her face said it all!

There are other places throughout the house where we have had to make things "Pookie Proof" as to make sure she still can be comfortable in her own home.  Everything that has meaning and memories attached to them are up REALLY high and everything else is replaceable.  I don't get the most expensive items, as it could be money down the drain really fast.  I love buying things for the house, but now I just buy things that can't be broken easily or if they do break, they can be replaced without breaking the bank.  I don't want my other two children to feel like they don't have a place for their "possessions" so in order to protect what is valuable to them they have childproof locks on the door knob going into their rooms so she can not go in uninvited.  Please do not think that they do not let her come into their rooms...this is quite the opposite.  The rule is that we have to be in the room too to make sure that she does not "rearrange" anything of is only fair.

Her gift to me not only has helped me within our home and the examples I have given to you here, but also in all aspects of my life.  This gift has really taught me to look at the important things in life and realize there are many things that are not worth stressing over at all.

I know in her head she is planning on the next area of the house she can start "rearranging" since we have taken away some is almost a game to her.  But let's hope she decides that we will always win and to give up!

Here is a quote for today....

Do you remember the things you were worrying about a year ago?  How did they work out?  Didn't you waste a lot of fruitless energy on account for most of them?  Didn't most of them turn out all right after all?- Dale Carnegie

Tuesday, August 14, 2012

Her Hands

Today's gift is my daughter's hands....

For those of you who are unfamiliar with Rett Syndrome, girls who have Rett typically have compulsive hand movements.  My daughter wrings her hands all day, unless she has her hands engaged in a certain activity....playing on her ipad, playing connect four, playing ball, or flipping through photo albums or magazines.  Her hands are sweaty non stop and she wrings her hands so hard that her knuckle on her pointer finger on the right hand is much bigger than any other knuckle on her hand and she has rubbed sore spots on them.

Keeping her hands busy has been one of our family's goals with her since her diagnosis.  She has such great functional hand use that we do not want her to lose this skill.  I truly believe, her love of playing ball (volleyball style) has helped with hand use!

Self feeding has also been a long time goal for us with my daughter.  She can self feed with typical finger foods with no problem, but anything that requires a utensil is a challenge.  To this day, a spoon still is more difficult for her to manipulate....she can, but it is very messy.  However, if we fork her food for her and lay the fork in front of her, she will pick it up, put the food in her mouth and then set it down for us to fork the next mouthful!  This skill took years to gain....but we did....and we keep practicing it as we don't want to lose it!

This is today's gift, because today she has had great hand use!  She was purposefully pushing buttons on the remote control in her room to turn her tv on...with help she did it!  She ate all her dinner with her fork and was so pleased with herself!  But my favorite part of today's gift is, she held my hand many times today.....meaning she grabbed my hand and wanted to hold it!  I love it when she reaches out to me and wants me to hold her hand.  My post today could not be any more perfect....just this second, I looked up at the tv to see if my daughter was asleep yet (we have cameras in the kids rooms so we can see if they get up...mostly for my daughter) and my husband fell asleep in bed next to my daughter with Rett Syndrome.   It is not the fact, that he fell asleep next to her that grabbed my attention, but the sight that they are holding hands.

This image (I wish I could share it with you, but I think he would kill me if I posted this picture on my blog....but I took one in case I am wrong!!!) melts my heart and made me realize that today's gift was meant to be!   *****UPDATE.....he let me post the picture*****

Here are some quotes for today....

Whenever your lonely, just look at the spaces between your fingers and remember that's where my fingers fit perfectly.- Unknown

A mother holds her children's hands for a while, but their hearts forever- Unknown

Monday, August 13, 2012

The little things....#1

Today's gift is....the little things....#1

I am numbering this as #1, as I am sure that within the next year, there will be another "little thing" that she will do that will be my gift for the day....(there really are two for today!)

I love the moments that we share (or those I witness with someone else in our family) that are not planned, but just happens.  Today there were two "little things" that my daughter did and had I not been paying attention or if I was not around then I would have missed them both.

The first "little gift", was she was sitting next to my mom (aka Mimi) on the sofa looking at her yearbook and pointing out pictures of her friends (and yourself) to Mimi.  Then half way through their time together, my daughter leans over and puts her head on Mimi's shoulder and stays like that for a long time.  My mom called my name, so I could see my daughter like this, as it was one of those moments that you don't get to experience too often when your kids get older.  But for us to experience this with her today was a little bit more meaningful as she has been on the go go go and not wanting to sit still but for more than a second!  To see her actually "relax" was very refreshing!  I wish that I could keep my kids little and innocent forever as I love moments when they WANT to sit down and curl up next to me, but we know that can not happen.

The second "little gift" is this evening we were upstairs in my bedroom getting ready for bed.  She was saying "mommy, mommy, mommy" over and over again....which she says often.  But at that moment I knew that the "mommy" sounded a little different so I looked up at her.  Then she said "daddy" and pointed to a picture of the two of on my dresser.  I said, "you are right that is daddy".....and then she said "mommy" again!  She was telling me who was in the picture!  I loved it!  Had I not taken the time to really pay attention, I would have totally missed that she was communicating with me about a picture she was looking at!  Right next to our picture, there is another picture, so I asked her, "and who is next to mommy and daddy" and she said "me"....and she was absolutely correct!

To most people, times like these seem "little" and they are....but to someone who has a child who is considered nonverbal for the most part (even though she has words) they are huge!  I love all the "little things" she gives to me as they are what help me get through the rough days.

Here are two quotes for today....

Everyone is trying to accomplish something big, not realizing that life is made up of little things- Frank Howard Clark

Sometimes you will never know the true value of a moment until it becomes a memory- Unknown

Sunday, August 12, 2012

Being okay with me spending time with her on one...too!

Today's gift is that my daughter is okay with me spending one on one time with her siblings......and I....years later.....know that it is okay for me to have this one on one time with them too.

Before my daughter was diagnosed with Rett Syndrome, I had everything laid out in my head as to things I wanted to do with my family--my family as a whole unit, just me and my daughters or just me and my son.  Then Rett Syndrome was thrown into the mix and things changed.

How were we going to travel and see the world together now?  Would I still be able to take mother/daughter weekends with both of my girls together and do the same things we would be doing if Rett Syndrome wasn't a part of our lives?  Can I take each girl on their own weekend away to a place that is special to them without feeling guilty that my other daughter isn't with us too?   I remember these feelings like they were just yesterday....probably because I think these things too often.

For years I struggled with the last question above....can I take each girl on their own weekend away.....without feeling guilty that my other daughter isn't with us too....but after three years from my daughter's diagnosis I realized I had to let go of this feeling of guilt.  I had to let it go for the sake of my other children and I could not not do things with them or let them not do things because of their sister.  When I was finally okay with not feeling guilty anymore, my husband and I promised each other that every year (this was in 2009) we would take individual trips with the kids to give them the one on one attention they not only need, but deserve.  I would take a mother/daughter trip with my other daughter; we would both take my daughter with Rett Syndrome away on a trip; and my husband would take my son away on a boys weekend (he gets to go on his first trip when he turns 5 and that is this year!).  This way we are giving each of our children the one on one attention from us and we can cater the trip all around that one child.

There is one place that I could never go (this is me personally) and not have the whole family be with us if it is a family trip.....and that is Walt Disney World!  There is something so magical about Disney that I would not want any of my children to miss out on the fun.  However, I did question if my daughter with Rett Syndrome truly enjoyed herself this year.  I know what she loves about Disney...and we could do that in one day....but what about the rest of the days.  This year was the first year that a part of me felt like she could have be okay doing just one day at the parks and would not have been upset if we went without her.  And to be honest, she would be happy as a could be back at the house or hotel swimming all day long...she just loves to swim!  As long as their is a her mind...she is having the most fun no matter what we are doing.  It is what she truly enjoys....why deprive her of what I know she enjoys.

I often think about other trips I would love to take the kids on and then wonder will/if my daughter will fit into these trips.  And I do struggle with it ( I will always struggle with it, even though I will not feel guilty)...every time I think about it....for two reasons....I don't know if she would truly enjoy the sightseeing and the in and out and in and out of all the places we would be visiting....and it is a ton of transitioning (which we are not always that good with)....and the second reason is... if I don't think the trip is good for her, that doesn't mean my other two children can't experience it.

I honestly think this is one of the hardest parts of having a child with special differences in our family.  There are so many "what ifs" about traveling....that could turn situations into disasters.  Flying for example,  if my daughter decided to have a "behavior" on the plane, we would be one of the family's that you hear about on the news who got kicked off the plane for "having a child with a horrible temper tantrum that we couldn't control"...that is what they would say, not knowing anything about my daughter and our situation. And we have no idea when the Rett monster wants to rear its ugly head, otherwise traveling would be very easy if we could plan around them, but we can't.  Let's not even talk about if we were on a plane that was sitting on the tarmac for hours, but no one could get off.....and you have no control over situations like these!!!!

So with all this, I had to let go (as hard as it was and sometimes still is) of feeling guilty if I/we wanted to do something with our other children, as it is only fair to them.  And I only let go of this feeling of guilt, because we take our daughter with special differences away to places we know she would love and have a good she is having weekends away too!  These weekends away with our children for one on one time is so special to all of us.

Today I am writing about this gift, because I took my middle daughter to see Cirque de Soleil and we had a mother/daughter date.  Of course, when we were there I thought about my other two children at home and wondered if they would have enjoyed it and even asked my daughter if she thought it would have been okay for her sister.  She said, "I think she would have thought is was really loud in here, because I think it is a little too loud for me."  Her response made me realize I am making the right decisions.  While I dream of the day when we can do everything together, we will just do what we know we can and enjoy those moments to the fullest.

Here are two quotes for today....

There are two ways of meeting difficulties; you alter the difficulties or you alter the way you meet them- Phyllis Bottome

I know God will not give me anything I can't handle.  I just wish he didn't trust me so much- Mother Theresa 

Saturday, August 11, 2012


Today's gift is babysitters!

You may be asking yourself, how can my daughter give me a babysitter as a gift.  It is quite simple....she is the reason we have the babysitters that we do!  I will not leave my children, especially my daughter with Rett Syndrome with just anyone...this person has to know all about my daughter AND have experience working with her.  I wish it was easier to find babysitters, but it is not.  This has been an ongoing challenge for us and when we find a special babysitter who we can trust and who we know is caring for our daughter they way we would we feel like we have won the lottery!

Tonight we had a babysitter!  She is incredible with all our kids, but especially our daughter.  I always (and think I always will!) feel a little nervous when I walk out the door, but she calms me down throughout the night with texts on how everyone is doing and if our daughter is not asleep when we think she should be, she tells me it is relax and have fun!  I love knowing that while I am out having a much needed  night out with my husband and/or friends, that I can relax and know everything is going to be okay.

I am very blessed that my daughter has touched our babysitter's life and that she wants to babysit for us even after school hours!  I just want our babysitter to know how much she means to us and how thankful we are to her for giving us a "break" so my husband and I can re-charge our batteries to keep going.

Tonight's blog entry is short.....because I am exhausted, but I could not go to bed without writing about today's gift.

I could not find a quote that I liked for tonight's gift; however, I could not help but remember one of my favorite movies from growing up..... The Adventures in Babysitting with Elizabeth Shue from 1987!  Luckily, babysitting my kids is nothing like this....though I am sure there are some adventures!

Friday, August 10, 2012


Today's gift is strength!

Twice a week my daughter goes to physical therapy to help loosen her muscles and to gain strength back in her leg from after surgery....and of course to keep her mobile!  They do the best job of keeping it FUN to try and cover up the fact that she is working....really hard!

To the outsider, they would see her walking on a treadmill (forwards and backwards), stepping over blocks, walking on balance beams,  bending down to pick up bean bags and jumping on a trampoline....and think this is really easy....and to most it would be.  However, to a child who has apraxia (people with apraxia often cannot perform controlled, purposeful movement, despite having the physical strength and intellectual thought and desire to do so) this is just the opposite.  In order for her to do these things, she has to wait (secs to a full minute) for her body to start to respond to what her brain is hearing from her therapist as what they want her to do.  And then she has to do it!  Some days this is easy for her and others it is difficult.  Before her surgery in September of 2011, she was doing obstacle courses and balance beams in May she started walking on her own again from surgery and now in August she is just starting back up on the balance beams (she must be motivated by watching the Olympics)! 

I always knew that she works overtime when she is at therapy and school, but I didn't have a true appreciation for how hard she really works until after her surgery.  You could see in her eyes that she wanted to get up and go just like before, but could not.  She would try and try, but wasn't strong enough.  She never gave up and we didn't either, as we both wanted her to be back to "her" normal.  She is so happy now that she can get up and go that I think she is making up for lost time by being all over the place!

Like all things practice makes perfect and after 8 months of hard work she started walking again like the old days....but I  have to say today (11 months later) she is 100% back to herself!  Her level of strength physically is  quite impressive (she is strong as an ox), but her strength mentally is equally as strong.   Even when she wants to stop and you can see she is getting tired, she will keep going as she doesn't like to give up.  

Seeing the strength that my daughter has physically and mentally has only helped me to realize that I too want to become stronger and I need to be stronger for her.  If it wasn't for Rett Syndrome, I don't think I would have become interested in running (thanks to Girl Power 2 Cure's Team in the Disney Princess Half Marathon 2012).  Now I enjoy running and find it to be a great way for me to also gain strength mentally by releasing my stresses while I run!  I know I am now physically and mentally stronger thanks to my daughter, but I am also realizing that I need to be spiritual stronger (which I am currently working on) as there is no one who can help me better in times of need than God himself.   My daughter's gift of strength has made me realize I can handle many situations I never thought I would have to experience, let alone live with; however, while I am strong and can handle them, I know with more strength spiritually I will be able to handle them better.

Whenever I think that I am too tired or don't want to do something, I just have to think of my daughter and how this really isn't an option for her in her therapy session and that is all I need to get my butt in gear!  If she can do it, so can I!

Here are some quotes  for today....

That which does not kill us, makes us stronger- Friedrich Nietzsche

We gain strength and courage and confidence by each experience in which we really stop to look fear in the face...we must do that which we think we cannot- Eleanor Roosevelt

Our strength grows out of our weaknesses - Ralph Waldo Emerson

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles- Christopher Reeve

P.S. Again.....I lost trust in my computer and I apologize for the font change!

Thursday, August 9, 2012


Today's gift is compassion!

My daughter has not only taught me what compassion is, but others who are also around her.   Before my daughter was diagnosed with Rett Syndrome, I only knew one other person personally who had special needs.  There was a girl who I babysat in college who had spinal bifida (she is in her 20's now!!!) However, to me, I never saw her as having special needs.  She was a believer, a fighter, a go-getter, and did everything she wanted and not even her disability of living with spinal bifida was going to get in her way!  This young lady changed my life then, but it was not until I had my own child with special needs did I realize how much she had taught me.

When I look at my daughter, I want everyone else to see her the same way I do....that she is just like her peers on the inside, but from the outside (what people see) she is a child who has special differences.  No two people are exactly the same (not even identical twins, I actually looked this up!) and our differences are what make us unique.  Imagine how boring this world would be if we were all the same!

My passion (and mission) with my own daughter is helping her to live her life the best (and most typical) life she can as a tween with Rett Syndrome.  I want to take her gift of compassion that she has given me and share that with others to teach them how my daughter (and others like her) can change their world....for the better.  I want to also take this gift that she has given to me and help others who need a friend to talk to as this road of parenting a child with special differences is not straight nor is the scenery beautiful all the time!  The road is often bumpy, curvy, wet, muddy and sometimes flat and the view is always changing from bright beautiful colors to dull, dark and grey.  A parent/care-giver of a child with special differences needs a friend who understands their world and can be compassionate and sympathetic with them...whether it is to share in a joyous occasion only you can understand (their child just drank from a cup for the first the age of 8) or to share in a sad and heartbreaking situation (like their child is so frustrated that they start having self injurious behaviors).

Maybe....just maybe this is the reason God has trusted me with my help others understand her  and to help others like her.  I am sure it is not the only reason, but I am pretty sure it is one of them.

Here are some quotes for today...

We don't set out to save the world; we set out to wonder how other people are doing and to reflect on how our actions affect other people's hearts- Pema Chodron

Self-absorption in all its forms kills empathy, let alone compassion.  When we focus on ourselves, our world contracts as our problems and preoccupations loom large.  But when we focus on others, our world expands.  Our own problems drift to the periphery of the mind and so seem smaller, and we increase our capacity for connection--or compassionate action- Daniel Goleman 

Wednesday, August 8, 2012


Today's gift is memories!

Early this morning before camp my daughter was sitting on the couch with her friend (who is a fellow camper) and they were flipping through an old photo album of pictures of her before her diagnosis.  She LOVES to look at pictures and she NEVER forgets a face!

She was flipping through the pages so fast acting like she was on a mission....and she was!  She was trying to find a good friend of our's to point him out to her friend.  And she did!  If you ask her to point to a particular person she will...even if it has been YEARS since she has seen them.  It truly amazes me!

I love looking at all pictures with her to reflect on her life.....when she was born....what she was like before Rett Syndrome started to rear its ugly head.....what she could or could not do anymore because Rett Syndrome was present full time... how far we have come since her diagnosis....and everything good and bad in between!

I will be honest,  I do get sad when I look at pictures of her before Rett Syndrome entered our lives....I see a little girl who could do so much and I just think about what that same little girl could be doing now if the Rett Monster never showed up.  Some of my favorites pictures of her are.... eating an ice cream cone and a holding it ALL BY HERSELF....pushing her baby stroller around the house, while both arms were loaded up to her shoulders with bags (we used to call her the bag lady!)....walking down to the beach holding the hand of our dear friends son who is only 6 weeks older than our daughter....walking around swinging her arms back and forth like she owns the place....climbing in and out of her dolls crib....walking up AND down the stairs independently....playing just like nothing in the world was wrong.....

While seeing these makes me sad, they also make me incredibly happy....happy because I was able to enjoy so much of her true toddler years with her before her regression period.  Happy because I know she was happy.  Happy because I can hold onto these memories FOREVER and not even the RETT MONSTER can take them away.

Now we create new memories daily together and as a family.  We actually started a memory jar (thanks to Pinterest!!!) where anytime we have a favorable memory we write it down on a piece of paper and place it in the jar.  On New Year's Day we will read all our memories that we shared together the past year!  It is FULL now, I can only imagine what it will be like in December!

Seeing the smile on her face when she flips through photo albums or her yearbook** (please see side note at the end of the blog) makes me so excited and happy for her.  I know when I see a smile on her face that she remembers those moments just like I do and this feeling of reassurance from her is priceless!

Thank you for all the memories we have shared and all that are to come!

**I wanted to share a wonderful idea my husband had two years ago with you.  We now order our daughter 2 she gets signed by all her friends and we save and the other we let her flip through constantly!  If she rips a page, we tape it up.  Who cares!  She loves finding her friends and seeing herself too!  Thanks honey for thinking of this wonderful idea for our daughter two years ago as we all know she loves to go down memory lane!**

Here are two quotes for today....

A life-long blessing for children is to fill them with warm memories of times together.  Happy memories become treasures in the heart to pull out on the tough days of adulthood- Charlotte Davis Kasl

We do not remember days, we remember moments- Cesare Pavese

Tuesday, August 7, 2012


Today's gift is friendship.

My daughter has taught me so much about friendship from her friends to mine!  She has taught her friends what being a friend is all about.  It is about being there for the person when they need you the most;  it is about liking them for who they are, not what they have;  it is about understanding that we are all different and sometimes some of us have harder situations to deal with; it is about being understanding, caring, trustworthy and forgiving.

This week I have my last week of camp at my house that I started for my daughter last summer (to see that blog please visit   She has 3 of her typical peers from her third grade class   at camp this week (one who had been at camp earlier this summer could not make it this week).  These are her true friends!  They "get" her;  they understand that some days are good days and some days are bad days; they understand she needs more time to answer questions; they understand she gets frustrated and when she does they get upset as they don't like seeing their friend upset; they understand she is just like them, but she has extra challenges to deal with every day.

Watching my daughter with her friends made me realize that my friendships with my friends are based on the same foundation; however, sometimes I have friendships with some friends that seem like more work and watching my daughter with her friends, makes me realize it doesn't need to be that way.  Before my daughter was diagnosed with special needs, we had a number of friends....and we still do.  However, what has changed over the past 5 1/2 years is we have found out who our "true" friends are and I will be honest, there are some people who I thought would always be by my/our side who are not.  But in their place, we have welcomed so many new friends into our lives who love our "whole" family and take a genuine interest in all my children.  Just like my daughter needs friends by her side (everyone deserves a friend!), I need friends too-- to help me get through rough days, to help me relax, to laugh and cry with me, to go shopping with or grab a drink, to call or text, or to just be there when I need someone.

All my friends combined are incredible as they each give ME a different GIFT!  I am beyond blessed to have such amazing friends in my life and I hope they realize how special they are to me.  My daughter is equally as blessed to have incredible friends in her life too and I hope they realize that their friendship to HER is a true GIFT.

Here are some of my favorite quotes about friendship....

Don't walk behind me, I may not lead; don't walk in front of me, I may not follow; Just walk beside me and be my friend- Albert Camus

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

The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing...not healing...not curing...that is a friend who cares- Henri Nouwen

The language of friendship is not words, but meanings- Henry David Thoreau

Friendship isn't about who you have known the longest.  It is about who came.....stayed by your side, and never left you when you needed someone the most.

Monday, August 6, 2012

Her Voice

Today's gift is her voice!

I love hearing my daughter's voice.  I love listening to her hum,  I love to listen to her do her version of singing and I love her squeals.  Her voice is one of those things I will never take for granted.  We are very blessed that she still has held onto about 70 words; however, she does not use all 70 in one day.

I think personally my favorite word that she says is "Mommy", just like my husband's would be "Daddy" and probably everyone in our family would vote that listening to her say their name is their favorite!  I feel like when she says my name she says it with such love, as it is drawn out like....Mommmmmyyyyy.  I love it!  Other times it is a quick Mommy.

Today we were driving in the car and she was singing one of her songs and it was beautiful to hear.  Equally as beautiful was listening to her sister tell her that she loved the song that she was singing.  And then  we all started to chime in with her, which she truly enjoys!  When we do this she will sometimes throw in a high pitched yell which my son loves as it is the one time he can get away with yelling!   He will copy her and then she does it louder and then he does it right back....and while this could drive me crazy (as I like my kids to use their inside voices) this probably is the one exception where I love it!  They are copying each other with my daughter being the leader and she LOVES it!

Another time where I love to hear her voice is when she wants something.  For example, "cracker" or "cup" are her choice words for food and drink and if she is currently eating and wants more she will simply say "more".  I love it when she is adamant about wanting something to eat too and she not only says  the word 100 times, but then she will get her pointer finger out and start pointing to the general area of what she wants, like I don't get it!  Oh, I get it, I'm just not moving fast enough for her!

Her voice is so sincere and sweet.  I wish that she would tell me more with her own words and not from any other form of communication like a device.   I wish that she could tell me what she truly loves (and not what we think she loves), I wish she could tell me about her day at school, I wish she could tell me why she is anxious,  I wish she could tell me why she is mad, I wish she could tell me if she didn't feel good or was in pain, I wish she could tell me she loves me, I wish she could tell me just about anything!  Until that day comes, I will hold onto what she does tell me....she calls my name; she says goo-mor-ning; she says hi, she says la for yes; she says cracker, burger, cup and more; she says ball, boo, and pool; she says everyone's name in our family and some teachers and therapists names; she says up, go and car; she says me, puppy, bee, bird and bubble; she says Bieber (love this one!); she says push me;  she says bye and she says good-nigh......there are more, but these are her favorites and most frequent words.

She is probably the only one in the house that we NEVER tell to be quiet.....sit quiet... I always want to hear what she has to say because you NEVER know if it will be a new word!

Here is today's quote.....
Enjoy the little things, for one day you will look back and realize they were the big things- Robert Brault