Wednesday, December 19, 2012

Tooth Fairy

I have been trying to write this post FOREVER.  However, it is harder than I thought to manage two blogs!  News flash for myself!!!  So I am hoping to post on this blog at least once a month.

Ok...the post....

Loosing teeth is one of those childhood memories we all remember.   You loose a tooth, tell all your friends, put the tooth under your pillow and then in the morning the tooth fairy left you money.  Who wouldn't be excited over this?   I even tried putting my puppies teeth under my pillow when I was little to see if it would work....to no avail!

Unfortunately, loosing teeth is not like this for Anna Cate.  Most of her teeth she has lost she has swallowed.  She eats something, we see a little blood,  see there is a missing tooth and have a huge feeling of guilt.

We never knew it was loose, we never knew if it was causing her any pain, we never knew anything until it was too late.

Friday, November 9, 2012

10 years of "stuff" saved between 3 children!

Do you save everything your child brings home from school?  Do you save everything they make for you?  I did until it started taking over my attic!

Six months ago my husband and I cleaned out our attic....It was a mess!  What we found was an 8 x10 area of bags and bins filled with all things saved from my children starting when Anna Cate was 2!  It was out of control to say the least!

Of course I had to wait for the right time to purge through everything as I did not want my children to think I didn't care about the things they made.  I actually got "busted" once from Betsie last year for throwing something away of hers....her exact words were "Mom, I spent a lot of time I that"....I felt horrible!  So I just started to save everything....knowing one day I would "organize" it all.

Monday, October 29, 2012

Picky Eaters

Do you have a picky eater or eaters in your house?

I feel like this is always a constant battle in our house.  All my kids used to be GREAT eaters....then one day my middle daughter, Betsie, decided she didn't want to eat anything healthy.  Of course, this was right around the time her little brother was playing "monkey see monkey do" and he decided to follow suit!

Lucky for me, Anna Cate, who has special needs, has always had an incredible appetite.

In the last year, Betsie has started to come around and she pretty much eats anything...as she really wants dessert.  My rule is, no dinner, no dessert.  If you get hungry after dinner, I will heat your dinner up, but after a certain time...still no dessert.  Eli, has gone to bed many nights hungry.....I will not cook more than one dinner.

I find I sometimes get into ruts with cooking, as I care more about the kids eating than anything else.  And not hearing them complain about dinner is also a factor!  However, I like to try new dishes.

So one day, I decided to "try" and make our "kitchen" clean...and the kids had wake up call as to what foods they would be allowed to eat.  I was surprised they didn't give me much complaining at all.  I should have done this sooner!

Slowly, I introduced new foods into their diets and didn't bring the old foods back in.  It was not until Monday night where....for the first time...my son tried something new and LOVED it.  No fuss, no muss, ate the whole thing.  I was so proud of him!

We had Aidells Chicken and Apple Sausage sautéd with onions in coconut oil (the onion were sliced in big piece as I know the kids do not like them and it is easier to pick out), Harvest Blend from Trader Joe's and a salad.  This will be a keeper in our rotation for sure!

However, it didn't end there.  Today, on our day home from school I tried two new items with them. For lunch we had Roasted Red Pepper Bisque from Trader Joe's with a couple of crackers on the side.  Another hit!  At snack time I tried something I had seen recently and I can not remember where...maybe pinterest....anyway...it was sliced bananas drizzled with honey and then sprinkled with cinnamon....yum...yum...yum!


Getting my youngest to eat vegetables has been a challenge.  Fruit he loves..veggies...not so much.  This summer we got a juicer and it changed my world in getting vegetables into his diet.  He will not eat many vegetables; however, if he drinks them it is a different story!  I think it is the whole idea of him helping me make the juice which he likes.  Whatever it takes...I'm game!

Last week a friend mentioned she made apple cider with her kids using their juicer.  My kids LOVE apple cider, so today I thought would be the perfect day to try and make some with them.  Anna Cate didn't want to get too close to the juicer when I offered for her put an apple in, she preferred to stay back and watch.  I wasn't going to push her, as we were having a fun day together.  Betsie and Eli took turns making apple cider for us.  It turned out pretty good!



While Hurricane Sandy was trying to wash out our day, we were cookin' it up in the kitchen!  And it was a huge success!

What are your children/grandchildren's favorite foods?  What do they like to help you do in the kitchen?

Wednesday, October 24, 2012

Cha-Ryot

Anyone know what Cha-Ryot means?

ATTENTION....in Korean!

Yes, attention everyone....Eli passed his test tonight in Tae Kwon Do and received his Yellow Belt!

He was so proud of himself!!!  I love seeing his expressions on his face which shows how excited his is of his hard work and dedication.  Especially since at the beginning of our Tae Kwon Do journey he was not "loving" it.  Honestly, it was torture to watch!

However, as time went on he started liking it more and more and then one day something "clicked" and now he loves it!

I love how he is not only learning Tae Kwon Do, but also some Korean!

Eli right before he gets his Yellow Belt....



Here is a video of him getting his belt....

video


And Eli with his new belt....


Congratulations Buddy....we are so proud of your hard work, dedication and focusing!




Tuesday, October 23, 2012

Little Surprises

Every morning when I ask my 8 year old daughter, Betsie, to make her bed, I also ask Eli, my 5 year old....only to hear "I don't know how".  All I say, is "you can try".

Well, this morning...he tried...and succeeded!!!  While it is not perfect....he still tried and this I am so thankful for....in so many ways!  Four beds in the house....three I have been making....hopefully I am only down to two!!!

Not too bad for a 5 year old, is it......


Happy Tuesday to me!

Have your children surprised you today???

Monday, October 22, 2012

New Title....

As you can see my blog has not only a new look, but a new title.  Her Climb has been replaced by Our Everyday.  

Having a child with special needs is a whole family effort...and I wanted to start blogging about my other two children too.  They are also incredible kids I would like to share with you.

Some days I will have long posts, some short.  Some days I will only post pictures and quotes which remind me of my family and how I am feeling on a particular day....or every day.  I hope to post more laughs than tears, but I will not make any promises.

Having a child with special needs does add some grey to your life, but amidst the grey there is lots of color to share!

Just to end the the post with a little humor....who doesn't like someecards???  This one reminds me so much of my children....always pointing the finger at someone else....



Until next time....

-E




Monday, July 30, 2012

Girls Just Wanna Have Fun

I have been wanting to write this post since this special day happened, but as usual, life happens and I had to get through two weeks of camp at my house.  (If you haven't read about Camp Amica visit my other blog at www.campamica.blogspot.com).

What does every mom want for her daughter?  To be loved, to be liked by her friends, to have friends, to enjoy life to the fullest, to explore, to enjoy every year as time goes by so fast, to have lots of memories, and the list can go on and on.

Before Anna Cate was diagnosed with Rett syndrome the list of hopes, wants and dreams for her was endless.....and it still is.  However, all the hopes, wants and dreams have changed a little.  I still want her to be loved, I still want her to have friends and friendships (yes there is a difference), I still want her to enjoy life to the fullest that she can, to explore the best that she can, to enjoy every year and to have lots of memories.  In order for Anna Cate to have memories and explore we are involved with every aspect of these moments too!

Amy, Anna Cate's teacher and friend, does the BEST job of making Anna Cate feel just like any other 10 year old girl.  From the way she talks TO her, to the way she gets other kids her age engaged, the way she helps US to do things differently (and better!) for Anna Cate,  you name it....Amy is AWESOME!

Amy's dedication to Anna Cate is amazing to see!  And I am not the only one who sees this connection the two of them have, but so does our school, the teachers, our friends, Anna Cate's friends, strangers....anyone!  One area where Amy has paved the road for me, is with Anna Cate's friends.  She has helped Anna Cate's peers realize that Anna Cate is just like them, but she is trapped inside her own body and sometimes things are difficult for her and sometimes things are easier.....depends on the day and her mood (kinda sounds like me too....lol!).

I love hearing Anna Cate's friends tell me that THEY want to come over to see Anna Cate.   Noticed, I didn't call it a "play date"...I think now at this age, it is "having friends come over"....I need to get the lingo down!  Anna Cate has had friends come over to hang out many times.  We have taken her and her friends bowling, to a favorite frozen yogurt shop, to the pool, and they have just come to our house to be with Anna Cate and enjoy doing things that she likes to do here like play connect four, play ball, watch movies and listen to music.  I love that Anna Cate can have these special times with HER friends just like her peers can and just like her sister, Betsie does with her friends.  And she has two friends that really "get" her, where I feel comfortable enough to take a BIG step back to give them the age appropriate "girl time" that they need.  I am sure that Anna Cate wants me to leave them alone too!

I often wondered to myself if Anna Cate would ever be able to enjoy one of life's biggest milestones--a sleepover!  I am not talking about a sleepover at Mimi and Poppy's house...that doesn't really count, but a sleepover here with her friends or vice versa.  There are so many unknowns and I didn't know if I wanted to go down this road.  And I know that Will had some reservations too.  We try to protect Anna Cate all the time, and we don't want her friends to see the "dark" side of Anna Cate when she is unhappy and frustrated and many times it is late night, in the middle of the night, or first thing in the morning, when these times are most prominent!  But then, my voice of reason, or in this case Amy, tells me that it is ok, Anna Cate's true friends HAVE seen her upset and they get upset too, because they do not like to see her like this AND Anna Cate's true friends are just that,  HER TRUE friends, and they KNOW she can not help situations like this.  Amy is exactly right, and we have to realize that her true friends are genuine, understanding and patient with her and this is what is so beautiful to see.  So why hold Anna Cate back on something that EVERY girl should experience.

Two weeks ago Anna Cate had her FIRST friend sleepover!  It was a sleepover by chance and I think that it couldn't of happened any better (and that it was meant to be!).  During my first session of Camp Amica, one of Anna Cate's friend's mom emailed me to ask if her daughter could spend one night as she needed to be out of town for work.  This friend is AMAZING with Anna Cate and is one of Anna Cate's friends where I feel 100% comfortable leaving the room and I know Anna Cate is going to be ok!  When I told Anna Cate that her friend was going to spend the night, Anna Cate got a huge smile on her face.  Wow, she was really excited and I am sure in her head, she was probably saying...FINALLY mom!

After camp we had a normal afternoon around the house, then dinner and bath/shower time.  While the girls were hanging out while I was cooking dinner, Anna Cate's friend Face Timed one of their other friends so Anna Cate could see her too!  Wow!!!  What a way to connect Anna Cate to what her peers are doing and age appropriate!  Anna Cate loved it!!!

When it came time for bed, I explained to Anna Cate's friend all the scenarios that could happen...Anna Cate could sleep all night with no problem; Anna Cate could get up in the middle of the night and be mad; Anna Cate could get up really early (4-5AM) and be up for the remainder of the day; Anna Cate could, Anna Cate could, Anna Cate could....I can keep going on and on.  NONE of this worried Anna Cate's friend and she looked right at me and said, " I would like to sleep in Anna Cate's room right next to her bed."  Just writing that again, I have tears in my eyes.  This young lady truly is a gift!  Then Betsie came running in and asked if she could sleep in her sleeping bag next to Anna Cate's bed too!  Yes, you can!!!

We did our normal bedtime routine of reading Anna Cate a couple of stories (she usually falls asleep as we read to her), but I knew that this night getting her to sleep was going to be a little bit more difficult as she was excited and the girls on the floor were whispering and Anna Cate could hear them.  As I was reading to Anna Cate, she would lean over the side of the bed and look at the girls and then pop back up.  She did this about 5 times!  So after the first book, I thought to myself....Emilie....take a deep breath, relax and let Anna Cate enjoy the moment.  I told the girls that they could watch a movie in Anna Cate's room and I was going to go downstairs.  I was hoping that Anna Cate would stay in bed and fall asleep watching tv like she sometimes does when she gets up with the birds!

As soon as I walked downstairs and turned on the tv to Anna Cate's room (all the kids have cameras in their rooms so I can see them at night), Anna Cate was already out of bed and Will was hinting to me that this was going to be a long night.  I walked back upstairs to put Anna Cate in bed, but as I approached her door (it was cracked so I could peek in), I saw one of the most precious things in a long time.  Anna Cate's friend was putting her back in bed!  This melted my heart!

I went back downstairs to tell Will, but he had watched the whole thing on tv and we both said at the same time, "DID YOU SEE THAT!!!!"  I didn't know at that moment (as we had our eyes glued to the tv watching what was to us one of the most amazing shows we have seen in a long time) who had the BIGGEST smile on their face...me, Will or Anna Cate.  Anna Cate's smile was so big and she was doing the covers over the face trick which mean she is really happy.  She would watch her movie and then get out of bed....watch her movie, then get out of bed.....then Anna Cate's friend and Betsie got in her bed with her for a little while....then they got back down on the floor....this went on and on for about an hour and a half, when I finally went upstairs as I didn't want Anna Cate to get her second wind and we also all had camp at the house in the morning and I didn't want tomorrow to be a day with three tired kids on my end!

I thanked Anna Cate's friend for being so loving and patient with her, but said I was going to get her to sleep and then she and Betsie could sneak into their sleeping bags when Anna Cate was finally asleep.  As I crawled into bed with Anna Cate, Anna Cate looked up at me and said "Mommmmmmyyyyyy, Mommmmmyyyy", Mommy really long and drawn out, and says this when she is really happy!  I said, Anna Cate I know you are happy tonight and I am so happy for you.  I snuggled with her and read one last book and before I got to the 5th page, she was out like a light.  I am sure she was dreaming about her first sleepover!  The girls came back in and got into their sleeping bags!

And then the big thunderstorm started!!!!!  The only one who slept through the whole thing was ANNA CATE!  After about 30 minutes Anna Cate's friend and Betsie finally went back to bed and were out instantly, as I know they were so tired.

This is the picture I took to remember this special night by!




The next morning Anna Cate woke up as happy as could be and was so excited to see her friend first thing in the morning!

We survived the first sleepover and it truly was one of the best memories I will remember for a long time!  Anna Cate's friend and Amy taught me that it IS ok, relax and let Anna Cate enjoy what others her age are enjoying and what happens, happens.

Anna Cate had so much fun and she was so happy, that Anna Cate is going to have her SECOND sleepover as part of her birthday celebration in September, but this time with more friends AND Amy!!!!  I know that I will be a little nervous as the day approaches, but I know this is what I have to do for Anna Cate.  After all, what makes Anna Cate's friends so special, is that they like her for exactly who she is and I couldn't be happier for Anna Cate!

P.S. I named this blog in honor of my one of my favorite sleepover songs growing up and one of my favorite movies!!!


Thursday, June 14, 2012

A great school year!

As I put Anna Cate to bed tonight and watched her after she fell asleep, I can't believe that tonight was the last night she will go to bed as a 3rd grader!  Where has the time gone?

While I was looking down at her I also started to think about what would Anna Cate be like and what would she be into if she didn't have Rett Syndrome.  Looking at all the kids run off the bus asking their friends to sign their yearbooks, talking about the summer camps that they are going to, how they are doing swim team, where they are going on vacation always makes me sad for Anna Cate.  I wish so badly that she could be like her friends and run off the bus laughing and giggling with no cares in the world!  I have these thoughts just about every day.

But then I thought, Anna Cate has friends running up to HER to want to sign HER yearbook, Anna Cate has a camp at HER house where HER friends come to be with HER (this summer Camp Amica is FULL all three sessions with a total of 31 girls over three weeks!), Anna Cate doesn't participate in swim team, but she will be at the pool all summer, and Anna Cate is going on vacation to the beach TWICE this summer!  In a way she is just like them, or she is just like them as much as she can be with Rett Syndrome and that is all I have wanted!

The quote, "Enjoy the little things in life...for one day you'l look back and realize they were the big things", really hit me tonight and what prompted me to write.

I replayed in my head the year we just had and what a GREAT year it was!  To me a great school year for Anna Cate isn't about the academics, but about her having the most typical school experiences she can have like her peers.

I remember when we first started at her school in first grade with her initial IEP meeting,  I told her team, teaching her academics wasn't important to me, that was a bonus.  What was important to me for Anna Cate was that I wanted to her to not only have friends, but friendships.  I didn't want her growing up and going to school without friends by her side.  If the academics come, awesome, but creating friendships was a top priority to me.

In first and second grade Anna Cate definitely had friends, lots of them.  And a couple in second grade turned into true friendships.  But third grade, I can honestly say friendships were made!  It was so beautiful to see!  Anna Cate had two great friends at the beginning of the year and these two girls really bonded with Anna Cate.  The rest of the girls in the class over time watched how they interacted with Anna Cate and wanted to learn from their friends.  Anna Cate was teaching them about her and her friends were teaching other students about Anna Cate!



Today was Anna Cate's end of the year party for her typical 3rd grade class and it was so touching to see the girls surround her with love.  You can tell that they truly care for her and want to be her friend.  And the smile on Anna Cate's face that she gets from them can light up a room!  I hope that Anna Cate will be in the same class as many of these sweet girls next year!  They truly made 3rd grade extra special for Anna Cate!

As I was leaving today, I thanked her teacher for believing in Anna Cate and for a wonderful year.  She told me that it was wonderful having Anna Cate in the class and how the kids learned so much from her.  She also said she has to often tell the girls to give Anna Cate space as they fight over her!  Right after she said this, we looked over and there were 5 girls all around Anna Cate....and she said, you see what I mean....she is one popular little girl!

Of course Anna Cate rocked the academics this year too!  She started to learn how to read and spell words independently by typing them out on her computer!  And this was the first year she had to take standardized tests and rocked ALL of them!

Here's to Anna Cate having a fantastic 3rd grade year one that I will remember forever.  The year Anna Cate found true friends who believed in her and helped others to believe in her too!  Kyla, Maddie, Alexis, Ellie, and Susie thank you for bringing so much joy to Anna Cate's life!



Friday, April 20, 2012

HOPE

Sometimes when I sit down to blog, I find it hard to write.  And other times, things flow easily.  Lately, my challenge hasn’t been what to blog about, but to take that jump and blog about something deeper, which are often the hardest for me.
As you know Anna Cate had tendon lengthening surgery at the end of September.  Where we are now with her recovery, I would have never thought that we would be in these shoes.  The shoes that so many other families wear every day.  The shoes where your daughter’s mobility is truly an issue and now needs your help in another aspect of her daily care--walking.  This has been extremely hard for me to see and deal with as this is not my daughter.  My daughter is swiper, Mia Hamm, the energizer bunny, the little girl who will not sit down but is constantly under foot.  
Anna Cate wants to go and do just like before, but her body’s recovery time is prohibiting her from going and doing like before surgery.  Sure we have great days when I think we are rounding the corner and coming out of this rut, but then we go back to the “new” walking since surgery.


About a month ago, something inside told me to call a new therapy center and see if they can do an evaluation on Anna Cate and if their technique could indeed help her.  I called, Richmond HOPE Therapy Center, had an evaluation the next week and we have been doing therapy here now for one month.  Anna Cate is also being treated by her current PT at Children’s Hospital and both therapy centers talk and exchange notes on how to best help Anna Cate.  I love this.  But what I love most, is that Anna Cate’s new therapy center is pushing her to her limit with stretching exercises like you would not believe, but the therapists do it with a smile and love.  And the fact that Anna Cate has a smile on her face too is amazing!  The HOPE that they are giving her and us is that her walking will come back with the correct amount of input that her body needs right now, is priceless.  





I have sent her therapists at HOPE pictures of Anna Cate running down the beach and kicking the water in the ocean as inspiration to them.  This is the little girl that I miss.


You know the old saying, “you don’t know what you have till its gone”...this could not be more true for me than it is right now.  For all the times that I would get frustrated with Anna Cate for throwing things or being on the go non stop where I couldn’t get a thing done around the house, as I had to be watching her every second, I would take all that back in a heartbeat to have THAT Anna Cate right now.
The “after surgery” Anna Cate wants to be pushed in her Wike Trailer instead of walking when we go outside.  The “after surgery” Anna Cate will stand up to try and walk and then just sit down after shaking and bending over at the waist as she is unsure of herself.  The “after surgery” Anna Cate is confused and wants to go, but doesn’t know how.
Richmond HOPE Therapy has given us a new HOPE and I saw it yesterday!!!!  Anna Cate had therapy in the morning and they taped her muscle on the front of her surgery leg (the anterior tib) to help that muscle do what it is supposed to do when we walk.  Well, when she came home from school yesterday, she did not want to sit still!!!  She was walking all over the place.  About 80% of the time when she was walking she was mostly upright and not walking bent over!  I was so excited, that I was taking pictures and videos left and right.  I didn’t want her to sit down, I wanted her to walk all night.  I wanted her to sleep standing up to not lose this....ok....maybe not this, but you get my point how excited I was!




I think that I was equally excited, because I have been praying at night for this very sign.  A sign that she still has the skill and that she can still walk, but needs the guidance and training to get back to where she was prior to surgery.  I needed a sign of HOPE from above.
Before Anna Cate’s diagnosis of Rett Syndrome our family went to church rather regularly, but right after her diagnosis and the birth of Eli we found it more and more difficult to go to church as we wanted someone to be there with Anna Cate in Sunday School so we could go to the Sermons.  I will be honest, we didn’t try hard enough and often let this aspect of our lives slip way.  Every New Year we would say this was going to be a priority, as we truly believe that this is something important and that we want our children to grow up in a church, but there was always something holding us back.
Betsie started going to church with one of her friend’s when she would spend the night at her house and then came home talking about how much she truly enjoyed it and wanted to know when she could go back to church with her friend’s family.  Seeing the joy in her face made us realize that we could not wait any longer and we needed to stop and make it happen.
Last Sunday the kids went to Mimi and Poppy’s for the weekend (my mom and dad’s) and Will and I went to a new church on Sunday.  This is the same church were Betsie has been going with her friend.  This church is HOPE Church.  When we sat down at the start of the service I had a feeling come over me that I can honestly say that I have never experienced before in my life.  At that moment, when the music started I started to get teary eyed.  I was shocked at myself as I am not the type of person who is super religious and cries in church (unless Amazing Grace is being sung as that always reminds me of my great grandmother’s funeral and it gets me every time).  But at that moment on Sunday I knew deep down that this void of not going to church was much deeper than I thought.  I knew at that moment that another of sign of HOPE was being given to me, to our family, that we were in the right place.  That HOPE Church was going to fill a void in our family that has been missing for far too long.
Not only does Betsie have friends who are members at HOPE Church, but Anna Cate does as well.  This is a huge bonus for me as we all know how much I want Anna Cate being around her typical peers that are not only her age, but that she actual knows.  And this will make the transition into a church family so much easier for her.  Eli also has a friend from the neighborhood that he knows so everyone will have a “buddy” and not be jumping into a new church alone.
What does HOPE mean?  HOPE is a feeling of expectation and desire for a certain thing to happen.  My (and our) HOPE for Anna Cate in the short term is that she will gain back the mobility that she had before her surgery.  The long term HOPE for Anna Cate is a cure.  My HOPE for my family is that we can find a place where we can turn and build on our experiences and relationships with others and with God.  I know that all this will happen as I was given the direction of calling Richmond HOPE Therapy by my own prayers and we were encouraged by close friends to join them at HOPE one Sunday morning.  
Now I have to have FAITH and be PATIENT and know that with everything worth waiting for takes TIME.  But in the waiting phase, I am beyond thrilled to know that we have found two places that will continue to give us HOPE.

Thursday, March 15, 2012

Team Oatmeal

If an adult needed to talk to someone about a concern or something that bothered them, they would typically know who they could turn to, to talk about these issues.  But what if you were seven and had some questions about your sister who has special needs and didn’t want to necessarily talk to your mom and dad about something that was on your mind in case it would hurt their feelings?

Well, this has been a subject that has been on my mind ever since Anna Cate had her diagnosis of Rett Syndrome.  Right now Betsie is an AMAZING sister to Anna Cate and she doesn’t let Rett Syndrome bother her.  She tells everyone all about Anna Cate and isn’t afraid to speak her mind.  Right now.  And I hope this is how it will always be.  But what if something changes?  What if she was afraid to ask someone in our family a question for fear she would hurt our feelings OR we would judge her for asking that question?

Early in the fall I was talking to a friend who has three children as well and her daughter also has special needs.  We started talking about siblings and how we wish there was a place to take them so they could talk to others who are experiencing the life of having a sibling with special needs too.  Our local Children’s Hospital used to offer this service, but hasn’t for years.  My friend mentioned she had a friend who has said in passing that she would do this if there was interest!

After a couple of phone calls our first meeting for children who have a sibling with special needs was formed!  There are two boys (both second graders) and three girls (one first grader, one third grader and one fourth grader).  They came up with a name for their group and they called themselves “Team Oatmeal” (we have no idea why…but that is okay…this is their group).  These five children met for six weeks and formed a special bond that only they understand.  During the sessions they were able to talk about their siblings and learn that it is okay to have questions and concerns.  But they also learned how to talk to someone about them and that they now have four friends they can share a concern with (five if you include the teacher too!).

The kids had so much fun with each other that the moms decided to still have them meet once a month.  We meet at a local restaurant and we let them get their own table to be able to have their own conversation.  While they may not talk about their siblings or something on their mind pertaining to their sibling with special needs, they know now that they have someone who they could talk to who would understands and will not judge.  These five children have already learned some of life’s hardest lessons and are incredibly strong and have huge hearts, but I know as they continue to grow, they are going to be amazing adults and ones we could all learn from.


I also wanted to share a story from our first monthly dinner (post 6 week class) that I shared with Girl Power 2 Cure and is now the Story of the Week.



Last Tuesday was the last class and Betsie brought in (GP2C) flower tattoos for everyone with her piece of paper from the half marathon (image above). Everyone, including the two boys put them on! The boys put them on their "muscles"!
Last night we met with the group for dinner and one of the mom's whose son is in the group told me the cutest story. He is the second of two children and his 10-year-old sister has Angelman's. He is in second grade. He went to school the day after he got the tattoo and took his long sleeve shirt off, which then revealed his tattoo. His friends started teasing him that he had a flower tattoo and he looked at them and said, "Let me tell you something, this flower is special because it stands for a syndrome my friends sister has, and I'm spreading awareness by wearing it!"
And that was the end of the teasing!
Love him!

As I said, these kids are amazing!  I am so happy that not only has Betsie found four new friends, but I also have four new friends….the moms!  It is always refreshing to find someone who understands and just “gets it”!  I think I look forward to our monthly dinners just as much as Betsie does.  And this summer I can not wait to get all the families together.  I know these friendships are going to be lasting ones.  Thank you Britt for spending these six weeks with our children and being there for them!

Saturday, March 10, 2012

Friendship to Cure

Aren’t playdates wonderful for our kids?  Either a friend comes to your house and your child is entertained by their friend until it is time to leave.  Or your child goes to their friend’s house and you have some quiet time, or one less child for the afternoon.  Either way, it is pretty nice to have this time to yourself!.  Well, what about when your special needs child wants a playdate with her friends, but can not tell you?  Or you know she wants her friends to come over, but how will the play date work out?  This is what happens in our house very often.

Anna Cate sees Betsie and Eli’s friends running in and out our front, back, and side doors like we are a fast food restaurant.  And so often when I look at her smiling at them I know it is because she wants to go with the kids and be one of them!  I know her friends bring her so much joy and she eats up the attention from them, like a bear likes honey!  However, when Anna Cate has a playdate, it immediately also becomes my playdate.

Last summer I started Camp Amica for Anna Cate, so she could attend a camp and be around her typically developing peers she goes to school with  and who live in our neighborhood (and yes Camp Amica will be back this summer!).  Every school year, I hope and pray there will be “friends” for Anna Cate to invite over for playdates and girls (or boys) who truly are interested in her.



Third grade has been amazing for Anna Cate both educationally and socially.  Once I realized that there was a good amount of “interest” in Anna Cate and friends truly wanted to be her “friend”, I was ready to start the having playdates for her.

Anna Cate’s friends are truly genuine girls!  As I mentioned in an earlier post about them, they truly care for her.  One Sunday, Anna Cate invited her friend Kyla to come to the pool with us for the afternoon.   The smile on Anna Cate’s face lasted for hours!  Kyla brought such joy to Anna Cate that afternoon and it was one of those beautiful moments you want to remember forever.




Two weekends ago, Anna Cate had a play date with FIVE friends from her class…yes FIVE!  We had so much fun!!!  Alexis, Ellie, Kyla, Madison and Susie arrived at 11:00am and stayed until 1:30.  Betsie wanted to stay and play too and Anna Cate said it was ok!


First the girls made a video about their friendship with Anna Cate.  They called it, Friendship to Cure.  Did I mention these girls are amazing?  They wanted to film it in Anna Cate’s room….why not, that is where girls hang out when they get together anyway, right!  I loved hearing all their responses and what they love about Anna Cate. They wanted to show everyone that Anna Cate is just like them--she has a favorite color, a favorite movie, etc.  It truly melted my heart!!!


Then we played spin the bottle….ok, not that bottle….the nail polish bottle!  This is the second time Anna Cate has played this game with friends.  I love it because it is EASY, FUN and Anna Cate can participate!!!  Everyone sits in a circle and then at one end we have all the nail polish colors lined up.  The person who is picked to go first (you can pick this person however you like), will pick a color and then spin the bottle in the middle of the circle.  Whoever it lands on, THAT person has to paint one nail the color that was spun.  And then this person goes next.  And so on and so on, until ten toes or ten fingers are all painted!
The girls had so much fun helping Anna Cate pick which color she was going to chose by holding up two options and letting her point to one.  And they LOVED painting her toes.  Honestly, I don’t know who enjoyed it more, them or Anna Cate!





For lunch I made the girls one of the popular lunches we made at Camp Amica, ham and turkey kebobs with fruit.  They were a hit again!  Madison’s mom LOVES to bake, so she made a special treat for all the kiddos (and I was so happy there were leftovers!).  Cupcakes with frosting and then a chocolate cookie on top…yummy!!!




After lunch the girls wanted to take turns playing Just Dance on Wii.  Anna Cate loved watching her friends be all silly and this is one of her favorite games to watch because she enjoys the music.  While Anna Cate’s friends waited for their turn to play, they all sat next to Anna Cate and talked to her.  It was so cute!


While the playdate was work for me as I had to “play” too, there were definitely times when I took a step back and let Anna Cate be alone with them.  I wanted her to feel like she was a ten year old typical girl without her mom around.  I hope as she gets older, I will be able to take more steps back when her friends come over and they or Betsie can help her a little more.  Maybe one day I can be in the background the whole time!  But until that day, I will try to be a “cool” mom and help her to have fun playdates with her friends.  Nothing makes me happier than seeing a smile on Anna Cate’s face and knowing that she is truly happy!

I was able to sneak downstairs and catch them on the camera in Anna Cate's room having "girl time"




Thursday, March 8, 2012

13.1 miles for love

If you had told me a year ago that I was going to run my first half marathon in February 2012, I would have said you are crazy!  I could not even run to the stop sign without getting a shin splint, let alone 13.1 miles!

Well, sometime around the end of the summer someone affiliated with Girl Power 2 Cure got this great idea (yes there is some sarcasm here!) to get a Girl Power team together to run the Disney Princess Half Marathon.  I kept looking and looking and looking at the posts on Facebook every week.  Then one day after seeing a post I started thinking about this run.  Thinking, that I am crazy, this is 13.1 miles and you hate running!


Then I thought, Emilie, do you think you can actually do this?  Do you think you can run a half marathon?  Maybe was the answer I told myself, maybe if I had some friends to laugh and cry with every step of the way!  So I asked one friend and then another friend and before I knew it, I had four friends who said YES!  And then three more jumped on board!  SEVEN friends running a HALF MARATHON for Anna Cate….there was no turning back now!  Will was a little skeptical, as he didn’t think that I would “stick with it” as I tend to start and not finish some activities.  If I was smart I would have made a bet with him for something!!!

Luckily for me, many of the runners on the Girl Power 2 Cure team were first time runners too, so Girl Power 2 Cure was fortunate enough to have Chris Twiggs from Jeff Galloway put together a training program for us.  This was music to not only my ears, but my legs and feet too!  For those of you who are not familiar with the Jeff Galloway Method, it is a run/walk combo.

After five months of training, half marathon weekend was here!  I can not begin to tell you how moved I was to have seven wonderful friends join me in Disney to run a half marathon for Anna Cate.  Despite my crazy life of sleepless nights (which got better during the training….THANK YOU ANNA CATE!), doctor and therapy visits and chasing my other two munchkins around with their daily needs (and wants!), I still found time to train for this race.  While, my friends who ran with me do not have the “special needs mom” title and all that comes with it, they still have their families, a job and all the every day things that come with being a wife and mother….and they still found time to train for the race too!  Thank you to all of Anna Cate’s Fairy Godmothers for taking time away from the important people in your life to help someone special in mine.



Here I thought we would go to Disney and have a relaxing girl’s weekend away before race day on Sunday.  I not only came home exhausted, but sick as a dog!  We left here Friday morning at 7AM (got up at 3AM, left for the airport at 5AM) and we were on the Disney property by 10:00am!  After picking up our race packets we headed to Epcot before dinner.  By the time we ate dinner at 8:30PM, I had hit the wall!  Wow!! I was exhausted, but then again I was up for 17 ½ hours!!!  And here my dad and step mom flew in from Texas to cheer me on and spend time with me and I was falling asleep at dinner!  I felt awful, but there was nothing that I could do, except maybe I could have tried to keep my eyes open with toothpicks!





On Saturday surprisingly we slept in till 7AM (sad when sleeping in is 7am).  And then headed to Magic Kingdom, which is always so magical!!!  Disney is fun for me with and without kids, but your perspective changes once you see Disney in the eyes of your children.  It was fun to go on rides with my friends and act like children ourselves!  After a fun filled afternoon we went to our Girl Power 2 Cure team dinner, where we officially meet Chris Twiggs himself!  He gave us a motivational speech, we meet our team members who we have been talking to on Facebook for about five months, and we got to meet three special ladies who would continue to be our inspiration for the next morning’s run!



After dinner we headed back to the hotel to try to get to bed early as 3:00AM was going to come real fast.  Yes, that is right; 3:00AM is the time that we had to be up, as we needed to be transported by Disney to the race area by 4:00AM!  We did it and we looked like it was 3:00AM too!!!  A couple of us even wore our pajama bottoms under our running skirts to keep warm until it was our time to run.  Yes, I was one who donated my pj bottoms and an old sweatshirt to charity!  I can not stand to be cold!!!



By the time that my corral started the race it was 6:15AM.  I had my good friend from high school, Sally, run with me every step of the way.  By the time we got to mile 3, we looked over to the left and saw the girl who would be the “winner” of the half marathon on her way back to the finish line!  We had 10 more miles to go and she had 3!!!  It was unreal!

Disney did an OUTSTANDING job of having something for you to look at all along the way to help take your mind off the race.  Characters, bands, the actual parks, cheering crowds, looking at the outfits people dressed in (some wore full on costumes!), you name it!  People actually stood in lines to wait to get their picture taken with a character!  We did not, but we did get our picture taken after we ran through the castle in Magic Kingdom, as we couldn’t resist! 
Thinking back on the race now, I don’t know if it was the fact that there was so much to look at all along the way or that I had an incredible friend to talk to the whole time or a combination of both, but the run wasn’t bad!  It was actually great!  Crossing the finish line and getting that medal was a feeling you can’t imagine, you have to experience it for yourself!  And if you are running the race for someone or for a cause, it makes the feeling even more emotional. 








Will I do the Disney Princess Half Marathon next year?  You bet!  Without a doubt!  And instead of having a team of eight on Anna Cate’s Fairy Godmothers, I would like to double it and have a Sweet 16!  Where else can you go and be treated like a Princess and be a Fairy Godmother?   


“You will feel fulfilled when you do the impossible for someone else”


Wednesday, February 22, 2012

Will you be my Valentine?

What did you and your special Valentine do for valentines this year?  I always try to find something fun to do with Anna Cate for her classmates, but more importantly I want the valentines and treats to come from her.  Of course, I could buy valentines, sign them with her name and be done with it. It would be a lot easier and quicker, but then she didn't have a say in them like every other child.  

Like many people, I am addicted to Pinterest and found some really neat tags for Anna Cate to give to her friends.  Once I found the ones that I thought she would like, I had to think how she was going to be able to help me do them.  We picked two different ideas, one for the boys and one for the girls.  

Anna Cate requires help with all aspects of her valentines.  Not only does she need help making them, but I also wanted to make sure they were age appropriate for her peers.  My creative side, wanted them to be fun too!  

I want her to be involved with the process as much as she could, after all they are HER valentines not mine.  So Betsie opened each bag and we counted out the number of candies per bag as she dropped them in.  When we were finished with each bag, I would call out a classmates name and then ask her to point to which tag she would like to put on their bag.  Before attaching it to the bag, I had her stamp her name on the back, as she can not sign her name.  This was a fun activity for Anna Cate and Betsie to share together too!








If I didn’t take the time to help Anna Cate, then her peers would know that I did them for her and I don’t think it would mean as much to them.  Now, they will see that she stamped her approval on all of them and know that she did her Valentine’s Day treats just like them!  We turned a fun activity into a learning experience, but she didn’t see it that way!  Anna Cate worked on her counting, colors, names of her peers, fine motor skills and everything in between!  But to her, she was doing her valentines and having a taste test with the candy!