Pool Party!

This summer its been HOT!  Like REALLY HOT!  Like 100 degree temps hot!  Infact the average temp for July was over 90 degrees - the AVERAGE temp. And we are talking humidity through the roof - this isn't a nice dry heat like Arizona, its a sweating, can't stay hydrated, hard to think kind of heat.  Ok, you get it.  Anyways, the most refreshing way to combat this heat is to jump into a pool.  Thankfully, my sister and brother in law have recently moved into a house with an in-ground swimming pool!  These two are amazing, they allow us to use the pool whenever we would like, day or night, weather they are home or not.  If they are home and they know Annie is coming over they make sure to crank the heat so she is comfortable.  And if we stay too late into the evening, they set up the Bar-B-Que and feed us.... all of us...... all 5 of us!  On weekends they have hosted several Hawaiian themed parties that all of the kids (and the adults) just have a blast at!  These guys are just so thoughtful and make it so easy for me to get all the kids out, cooled off and having fun with the convenience of allowing Annie to chill out inside and watch a movie if she's having a difficult day - any special needs mom knows how comforting that is!  A huge thank you to Uncle Jeremy and Aunt Jen for hosting such a great summer!!  

The Luau's!

 This is the cutest boy ever!  My God son Matthew!

 Crafts

 Cousin love!

 Silly kids

 no party is complete without a bunch of flamingos!

 Happy Annie

 Underwater

 The girls, poolside!

 My fish

 Summer time means pedis for the girls!  :)  

Purpose? Purpose.

A few months ago at church we talked about and shared our 2 Word stories.  There were buttons and t-shirts and billboards that went up everywhere as a part of the movement called EACH - Everyone A Chance to Hear.  Our 2 word stories were meant to be shared in the hopes to inspire others to take the first step towards Jesus.  I had a lot of people ask me what my 2 word story was but hadn't been able to share because I couldn't think of how to narrow it down to just 2 words.  I've done a lot of thinking over the past couple of months and trying to determine the me before Jesus and the me now.  I'm different now but I couldn't really put my finger on exactly WHAT is different.  Until I thought back on my life:

Growing up I was pretty plain.  I grew up in a middle class family, nothing too exciting, went to school same as everyone else, played some sports and had some hobbies, I didn't have any real shinning talents but I was OK at things I did.  I didn't have a real group of friends that I hung out with, I had lots of friends in different circles but never really fit into one of those circles.  I went to college and had no idea what I wanted to do.  People told me to think of something that I was interested in - I always thought that exercising and nutrition were important but there was not a passion there - still that's what I majored in.  I always sort of felt that I was just going through life, not making a difference, not really putting my mark anywhere, just being.
I met my future husband when I was 15.  I think I knew the day that I met him that I wanted to spend the rest of my life with him.  I loved him more than anyone else in the world. And he LOVED me!  He loved me so much, I could feel it and his love gave me an identity.  That identity could only take me so far though.  We got married and life was good, but something was missing.  It wasn't long before we got pregnant!  YAY!  Oh was I elated when I first saw my sweet Jamesy and I couldn't have been more thrilled to stop working and care for him every single day.  I loved every minute of it but something was STILL missing.  I decided to start my own business, I gave lectures and did consulting on the side - freelance nutrition.  That didn't do it either.  Baby Annie came and I was beyond thrilled - to think a boy and girl just a little over a year apart from eachother - best friends!  What a wonderful life, you would have thought I was fullfilled, no, really, just busy, something was still missing.  Then the floor came out from underneath me, I was pregnant again and something was wrong with my daughter.  Wait, I'm searching for meaning and now I've been given all THIS to deal with?  How am I ever going to find my meaning, my purpose on this earth when I'm dealing with all this!?  Oh, wait, this is it.  In dealing with this new pregnancy and a brand new genetic and highly debilitating disease I was shattered.  I ran to church, I ran to God.  It was then that I finally came to know, offer up my life and begin a relationship with Jesus.  That relationship finally gave me a purpose.  I came to realize that I had been hand picked to live this life.  Hand picked to be this mans wife, hand picked to be the mother of these 3 precious beings and hand picked to walk the life of a special needs mommy.  WOW, completely humbled that God would consider me worthy to carry all of that.  It takes a Savior to give your life purpose and meaning.  It took me 29 years but I have finally found my purpose in life and for that I am eternally grateful.

Oh, and that floor that came out from underneath me, it has been replaced by a pair of very strong hands.

I Need a Vacation from Summer Vacation!

I am so overdue for a post.  There is so much to share and I'm not sure where to begin.  The summer time has been such an amazing time to spend with my kiddos.  We are so very busy over the fall and winter and most of spring that to have some down time is very, very welcome.  I have been embracing the lack of a schedule and just going with the late morning cartoons, PJ days and general lack of a schedule.  I have to say that it's been such an escape that even the few appointments we've had I've either forgotten about or messed up the dates or times, I think just because I'm so into vacation mode that I've refused to use a calendar :)   That is until this week crept up - YIKES! is an understatement.

James was at Springhill camps this week - what an amazing camp!  We have just LOVED every single second of it, so thankful that James' friend introduced us to it.  James has gone on water slides, climbed crazy high rope ladders, zip lines and done tons of other fun things in addition to learning about Jesus, praying, and sharing his faith.  Of course I don't have any of the good pics because I wasn't there but I do have a video of the closing day - this is a song that all the kids in James' group came up and sang - honestly, it was hard to keep from jumping up and dancing in the aisles - their enthusiasm is contagious!

Annie, of course has been doing her 3 week intensive therapy program (5 days a week, 3 hours a day - whew makes me tired just thinking of it).  This week was her second week.  I have to say that it's been much harder on her than 2 years ago when she previously went through this program.  Annie works so hard and we are now getting the same input from all of her therapists "she's so CLOSE to walking, we aren't sure why she's not taking steps on her own" - we aren't sure either but are eager to see Annie start.  At this point we are pulling out all the stops, trying everything that can be tried and keeping an open mind about most things, which has included ordering a SWASH, pulling out the (dreaded) thera-tog suit again and trying e-stim (electric stimulation) therapy.  Here is Annie in action at therapy this week:

Tired out!

Gracie - oh my sweet little Grace.  Gracie has continued with her gymnastics this year but at this point being only 4,  her classes are only once a week.  That means that she has been spending lots of time at Annie's therapy, running various errands and going to appointments with mom.  This crazy week has been toughest on Gracie so on Thursday I decided to treat her to a mani/pedi (which also meant that mommy got pampered - a nice perk!).  Gracie loved it!  It's funny how our home dynamics are, James is the oldest and Gracie is the baby, yet Gracie has to play the big sister role to Annie.  This puts my sweet Grace in a unique situation - is she the caregiver because of her sisters condition or the care receiver because of her birthing order?  I tend to overannalyze things so I'm tying to keep it in the back of my mind and be very sensitive to her needs and wants but not make myself crazy over the whole issue.  I want for Grace what I want for all my kids, for them to feel not only needed and wanted but also that she is a very important girl, that she is loved by God and that she is a treasure no matter what is going on around her.  Of course there's a balance to it, I think at age 4 she's already a little too "at home" when she's in the salon :)

So combine all this fun with a crazy rare rash, substantial GI issues, a few trips to the peds, lots and lots and lots of medical phone calls, an eye doc apt. and a wonderful, supportive, helping husband who was stuck working late every night this week all in 100 degree temperatures and you've got yourself one crazy week!  I promise to post a lot more about the fun things we've been up to this summer, that will be a much longer post :)

We have made the decision to home school!

It is with a very peaceful heart that we have decided to start homeschooling Annie.  We have been thinking of it for a few years now and have decided that this is the time.  Thankfully we have also found great respite care and a wonderful tutor that loves and believes in Annie.  We have no doubt that this is the right decision for Annie and our family.  I can't wait to see how much she learns this year, we are so excited to unlock her potential!  As for school, well, its no secret that the educational system here is having financial issues, unfortunately that means less staff, more students and less funding - special education seems to be the hardest hit.  We feel blessed to be able to have home schooling as an option.  The following is Annie's "educational story".  It's been a rough road but its paved with lessons learned and we are wiser for it.

A moment in our shoes: A letter to our special education team

If you could imagine for a moment, you have a little girl, watch her grow and thrive then one day she slips away from you.  She loses her ability to ambulate, to speak, to use her hands and slowly develops an extensive list of severe health problems.  Despite all that’s been lost you look at your daughter and know that she is still the same little girl inside, but now, she’s trapped.  Your life becomes filled with doctors and testing and medicines and somewhere in all of this you remember school. 

Educators and therapists come in and see the little girl that IS, not the little girl that WAS.  You try to explain what she did, what she knew but it’s hard to put into words and it’s hard to remember and it’s very painful and fresh.  You lean on these people knowing that they are the experts and they will help you.  Slowly you realize that they aren’t sure what to do either, you enter a scary place, a place where your daughter is misunderstood. 

It’s time to send her to school.   You’re told to trust, to let go, but you have a little girl who can’t speak, can’t protest and can’t explain what happened during her day.  Your heart tells you no, your brain tells you no, but you let go anyways and leave her in the care of strangers.  You trust, you check in, you keep close contact with her teacher and therapists.  You spend your days worrying about her, learning about her disease and trying, desperately trying, to get the teachers and therapists to understand your daughter, her diagnosis and her potential.  The year comes to an end and you realize that one of your daughter’s most basic human needs has been denied for almost an entire year.  You feel anger, hurt, betrayed.  You cry for your daughters lost dignity and you wonder how in the world you can ever trust again. 

A new year, a new teacher they listen to you and say they understand your concerns. You’re told to trust, to let go, but you have a little girl who can’t speak, can’t protest and can’t explain what happened during her day.  Your heart tells you NO, your brain tells you NO, but you let go anyways and leave her in the care of strangers.  You check in more often, you keep even closer contact with her teacher and therapists.  Her teacher explains how much your daughter is learning, how smart she is, how she is moving forward in her education.  The year slips by and you find out that testing was performed on your daughter that you were unaware of.  The teacher that told you that your daughter was smart performed this test and concluded that your daughter is too disabled to be educated and should work rather on life skills.  Your heart breaks.  How could anyone count a child out at the young age of 5?  You feel anger, hurt, and betrayed.  You cry for your daughter’s hidden intelligence.  You are certain you will never trust again. 

You have meetings with people in higher places.  You stop playing “friend” and start to demand.  You are angry and make sure people know it.  You start sighting research articles and calling on medical professionals.  You are told that the next group of teachers and therapists will understand, that they are equipped to handle this type of diagnosis. You’re told to trust, again and to let go again, but you still have a little girl who can’t speak, can’t protest and can’t explain what happened during her day.  Your heart screams NO! Your brain screams NO!, but you let go anyways and leave her in the care of strangers.  You don’t trust and you make that quite clear. You make a pest of yourself, you don’t let a day go by without contact with her teacher.  You will not let THIS year slip by.  You know now that teachers and therapists don’t listen to parents, they listen to professionals.  You find a world-renowned specialist and she takes the reigns for you.  She becomes the voice for your daughter and it’s a huge weight lifted off your shoulders.  You ask for the team to meet with this specialist, she’s so busy and has taken time out to help YOUR amazing daughter.  To your dismay only 2 members of the team shows.  You hang on the hope that the 2 that are there can catch a glimpse of the potential that both you and this specialist know your daughter has.  You give up some of your fight and focus your attention.  You are bitter and doubt the team.  You are right to do so.  One therapist is giving you services but doesn’t have goals.  You explain that this is not productive or legal.  You get nowhere.  Another therapist writes goals that your daughter has already mastered.  You site 2 private therapists that prove this but she continues to claim that your daughter doesn’t have the ability to ambulate even a few steps.  The team fails you.  You aren’t allowed to see your daughter in her class because of “confidentiality” but you do anyways.  You find your daughter reading infant books (the same books she could hold, point to and say words from on her own before her sickness trapped her 5 years ago).  You find her sitting in a kiddy pool with rubber ducks.  When asked if she spends time with her typical peers you’re told she is ONLY able to do so during “specials” because that’s all she’s capable of.  During those “specials” your daughter isn’t allowed to speak (her computer doesn’t travel with her), or participate like her typical peers (a year of trips to the library and she has only been able to check out 1 book).  You feel anger, hurt, and betrayed.  You cry because your daughter has to constantly prove her worth.

You find out about meetings that are happening without your knowing - you shout about it but no one cares.  The communication device that you tried so hard to get for your daughter, the same device that outside professionals said your daughter could use and master sits in it’s bag, only a select few people have been trained on it and it’s only allowed to be used on certain occasions because of a liability issue – you shout again, but again, no one cares.   

You don’t have the money but you spend it anyways on Wrights Law conferences, meetings with lawyers and advocates.  You stop spending your days worrying about your daughter and trying to get the teachers and therapists to understand her.  You find any excuse to keep your daughter away from school and sometimes you make up excuses.  You hold on to the hope that the people on her team are really GOOD people.  That it’s the beaurocracy, the red tape, the lack of funding that is to blame for your daughters educational demise, but does it really matter?  You realize that your daughter has not learned a single thing in over 3 years and will never be properly educated in this school system.  You start to wonder if you can single handedly do what a whole team of “professionals” could not do.  You stop being angry, hurt and feeling betrayed.  You start to forgive.  You realize that staying in school will cause your daughter to regress and you can’t allow that to happen.  You take her out of the school system and pray that God will give you the strength to do all of this alone.  You continue to believe that there will soon be a day when everyone will know why you fought so hard.  One day they will see the little girl that once was trapped but now is free.