More Special Than Special

For the past 6 months I have been trying to take Annie to a Special Needs Social Night.  It's held the first Friday of every month and it just so happens that those Friday's we have either had something going on or she hasn't been feeling well enough to go.  Last Friday I was thrilled to finally get her out and socializing.  She's had such a rough time lately and has missed lots of bible school, I just felt like Annie was dying to get out and have some fun.

Annie's helper was over that day and we started trying to figure out what would be the best form of communication for Annie while she was there - her computer, program her sequencer, use eye gaze, etc.  We started reading the flyer because it listed the things that they would be doing that night.  I was caught off guard as I read - "puzzles, games, dance party, pizza" and realized Annie can't do any of these things.  This was supposed to be a special needs social night and even at a special needs function Annie wasn't able to participate independently in anything.  For flippin' sake she wouldn't even be able to eat the pizza - 1 she can't eat independently and B she's gluten free!

Unfortunately the day was pretty bad and as we rolled into the evening it was clear Annie wasn't going anywhere.  I guess, in a way, it was a relief, I didn't have to worry about all that we couldn't do at the social night because we weren't even able to go.  What a let down.

The thing with special needs is that it covers a HUGE stretch of kids.  Ones that are incredibly high functioning that may have a little social or texture issue to those like my Annie - unable to do a single thing on their own.  This reality was all too clear when we were in therapy, Annie would be sitting in her wheelchair crying and I'd be holding up Yes/No cards in an attempt to figure out what was wrong while another mom was walking in with their kiddo skipping and singing and carrying their favorite toy - And of course that was the same kid who's insurance approved unlimited therapy sessions...... but that's another story.

Even within Rett Syndrome there is a huge spectrum, there are kids that speak a few words, kids who have retained hand function, and kids who can walk, even run.  Medical issues vary too, some kids are able to take all their nourishment in by mouth, others who have never  had a seizure, and others who have no issues with their bones.  Don't get me wrong, even the highest function Rett girl leads an incredibly difficult life and regardless of the issues these girls face or don't face this is NEVER an easy road but it's a pretty scary place when your kiddo has (arguably) the most severe and disabling condition and within that condition she is one of the most severe and disabled.  OUCH!

It seems there isn't really a place where we fit in.  On top of the medical and physical issues we are dealing with a kid who is very much aware of everything.  She is a typical little girl in a broken body which means she understands that she is the most severe of the severe and she is very much aware of all that her peers can do, all she can't do and how there really isn't a place exactly for her.

Next month we will once again try for the special needs social night.  God willing we will make it.  I  pray that we will be OK with just the socializing part and not the activities and that maybe we will meet another kiddo and parent that are more special than special just like us.

Thank you Rett Syndrome

Yes, you read that title correctly.  As much as I want and wish and pray to not have Rett Syndrome in our lives I can't do anything to take it away.  Today I realized that and was actually able to open my eyes up to the reasons why I am thankful for Rett Syndrome.

Scott and I were able to get out for a much needed date night last night.  We don't do date night weekly or even monthly or even every other month like many married couples.  For various reasons our lives just don't allow for that.   But yesterday we got out, and not a second of the 4 hours we spent together was taken for granted.  Thank you Rett Syndrome for teaching us how important our time together is.

At 6 am this morning a friend, whom I have only known for a little over a year now, was running in the Disney Princess Half Marathon in honor of Annie.  This friend had the idea to run and "pitched" it to Girl Power 2 Cure.  Team Girl Power 2 Cure was over 20 runners strong and raised almost $60,000!  Inspiration is contagious.  Thank you Rett Syndrome for inspiring others.  

This morning I got up to find Gracie piling pillow pals and stuffed animals around her sister.  Annie had been crying and she was trying to comfort her.  Compassion can't be taught, it is only lived.  Thank you Rett Syndrome for forcing us to live compassionately.

Annie was finally well enough to go to church today.  As we were wheeling her towards her class a little girl walked out, looked at Annie and said "Annie!!!!" and gave her a big bear hug.  I don't even know the little girls name.  Thank you Rett Syndrome for spreading that compassion beyond our family and on to everyone that Annie meets.

Make a Wish has graciously given Annie the opportunity have a wish granted.  2 volunteers came over today for a Wish granting ceremony.  Annie chose Disney World!  In the 8 years since we have been parents we have never been able to go on a family trip together.  Thank you Rett Syndrome for making a family wish come true.

Of course in a heart beat I would chose to take Rett Syndrome and throw it far, far away, out of our lives forever.  Of course I hate to watch my child suffer day in and day out for the 6 years that this disease has taken over her life and ours.  Tomorrow we will once again pick up our swards and fight against Rett Syndrome but while we're waiting for our victory we will choose to see the blessings our situation brings.

Rett Syndrome Comes Back for More

A couple weeks ago Rett Syndrome decided that it didn't have enough power over our little Annie and came back for more in the form of seizures.  Our day was eerily similar to what happened in October - Annie had an incredibly lethargic day that lagged on into the evening.  I got very worried about her behavior, going back and forth wondering weather to call 911, take her right into the ER or wait it out and see if I was overreacting.  And then of course during my hesitation she started seizing which I was semi prepared for, what I wasn't so prepared for though was the blue lips - that has only happened to her when she has choked (which happens all too often) or when her autonomic apraxia stops her wind pipe from opening and she is not able to take a breath.  The first thing that came to my mind was "She needs oxygen and we don't have any!!"  So of course we called 911 - thankfully Annie's color returned and we asked them not to dispatch trying to lessen the trauma to James and Grace.

When we got to the ER we were given a "room" where Annie seized again, and again.  Ativan was given and we were blessed to have the same ER doctor we had in October so we didn't need to reexplain our situation.  Of course meningitis wasn't even a thought this time but labs were still drawn since Annie seemed to be sick again this time (throwing up and lethargic even prior to the seizures).  We of course were admitted but this time just to the regular peds floor not the PICU (oh how we missed the PICU!)

That night was very eventful, after getting into the room at about midnight it wasn't long before Annie's blood pressure became a concern and we had doctors and nurses in every few minutes to check and recheck on her.  Her blood pressure was dropping into the 60's/30's which was more alarming then the seizures.  They started to push IV fluids which seemed to bring it up slightly but we were kept for another night to observe the BP's and determine if anything else needed to be done.  Of course we had x-rays and EEG's and EKG's and saw a large team of doctors and residents. We got put on keppra for seizure control and we slowly started to see our Annie come back to her typical self.  We were discharged on Sat. night, ready to get home but reluctant to be without the piece of mind of an automatic BP cuff,  monitors and the wonderful nurses that took such great care of all of us.

Annie is now on seizure meds for at least 2 years as long as their no more seizure activity which, unfortunately is very unlikely.  Scott and I are still adjusting to this new symptom.  The first thing that came to mind when I realized that this was going to be a long term thing was the fear of never seeing our Annie again.  I feared that seizure meds would cause her to be extremely lethargic and almost catatonic.  Of course I was fearing the worst.  We are still adjusting to the meds and there have been a couple dose changes so it's still hard to tell but for the majority of the day we are seeing our Annie which is a blessing.

I'm so angry at Rett Syndrome.  I wonder when it will ever back off but in reality I know that it never will, it will keep taking and taking until it has taken all of our sweet Annie and we will need to say goodbye.  I'm not ready to do that.  I feel as though I am literally in a race against time.  She deserves to be saved, all of the girls with rett syndrome do.  I have promised Annie that I will continue to fight with all I have until the scientists and researchers come up with something to help her.

I have been fighting with God about all of this.  Hasn't she suffered enough?  What on earth are the seizures going to prove that couldn't already be proven.  We have come to terms for the most part on most days about our sweet Annie battling daily with Rett why is she, why are we, being tested again?  I don't know the answers and I never will, another lesson I am forever learning.  I do know that there are a couple ways that I can handle this, become cold and hard and bitter and resentful which will almost certainly carry down to my children.  Or rise up, fight, pray, stay in faith, press on and do it with grace, dignity and a smile on my face.

 I'd like to be the person that does the latter but my heart is still very angry - angry because of the pain, the craziness it has brought to already fragile hearts, the extra stress this puts on us, angry about the people who aren't there for us, the ones who would rather look away and pretend they don't see, angry at all that has been lost.  Although as time ticks on I am hoping to see the joy in this, the compassion and strength it brings our family, the blessings of my family and our friends that are constant in their love and support, and the amazing joy we will feel when God releases our cure and we can say goodbye to this season of our life realizing that it was all a perfect plan.  I'm trying to get there, slowly, slowly, I'm trying to stay patient with my self and with others but it is a very trying process. 

"The only ones who rest in God are those who have wrestled with God... There is no tighter embrace than the grip of the wrestle."

Voskamp, One Thousand Gifts

The Uncertainty

This morning I walked into Annie's room and she was already awake with a sweet smile on her face.  She had slept all night long and had gotten her full feeding at night.  Hooray for a beautiful morning.  We got dressed, into the car and dropped the kids off at school - Annie was all smiles and happy noises - so was mom!  We got home and got right to work on a new app that I had put onto the ipad - Annie loved it and was doing fantastic!  After about 15 minutes she got sleepy - time for  her morning nap and my morning workout!  Honestly, could this day BE any more perfect?  Annie wakes up as I'm getting out of the shower and we start working on her stretches - Annie is so happy that now she is laughing out loud and we are just having a fantastic time.  After stretches we get on her braces and hop back in the car to pick up Gracie.  This is where things take a turn.  Out of nowhere Annie starts moaning and grinding her teeth.  I pray that she holds on for just 10 minutes so we can grab Grace and get out of the school before the full screaming fit starts - I know it's coming.  We make it, but the entire car ride back home was Annie screaming and kicking and Grace and I telling her over and over "It's OK Annie, we're almost home".  Annie's fit continues at home, I try to ask her what's wrong but her gaze is turned down, she won't look at her yes/no cards, I'm left to guess.  I go down the insanely long list of issues and give her every sort of comfort I can.  She refuses food, refuses to drink, TV, meds, snuggles, music, nothing calms her.  For my sanity as well as Gracies (and our ear drums) I take Annie upstairs into her bed where she continues to scream, kick and cry for 45 minutes.  When I just can't bear to watch through the monitor any longer I go upstairs scoop her up and take her back to the couch so I can try again to comfort her.  She kicks, screams, writhes in pain, bites, grinds her teeth and eventually calms down, exhausted from the fit, she passes out on the couch in her special spot.

Who could have guessed that such a beautiful morning would have such a terrible afternoon.  The uncertainty of every moment is one of the hardest things to deal with.  The unexplained moments of joy and laugh out loud happiness I'll take, but the unexplained moments of pain and suffering I could do without.  I'm left to wonder what caused the pain, where is the pain, is this really pain?  Although it looks like it maybe it's frustration or sadness?  I really don't have a clue and because I don't have a clue as to what it is there's no way for me to help her through it.  I've said time and time again that I will not let Annie's behavior dictate my attitude but it's much easier said than done.  When she's happy I'm thrilled and when she's in pain I'm in agony.  I'm not sure I'd be a very good mom if I could watch my child suffer and then just shake it off, although there has to be a happy medium here.

As Annie sleeps on the couch I take a much needed mental break and wonder what's in store for the rest of our day, what will she be like when she wakes? How will she feel at dinner and what time will she finally settle down for the night?  Nothing is ever the same, nothing is ever predictable, anything can change at any moment without any notice and there is nothing that I can do about any of it.  Such a hard thing to deal with.  I remind myself that there is no joy without pain, I just wish there was some distance between the two and it wasn't a constant back and forth minute to minute.  I press on knowing that as much as I'm hurting my baby is hurting so much more.  I think of that sweet, precious smile and that infectious giggle and I know that they will return soon and will be even sweeter having gone through the pain.  Annie's birthday is tomorrow, I'm praying her day is filled with so much happiness that the pain can't touch her.

Why Me? Why Not?

It's funny, we started out this journey wondering "why me?", "why us?", "why sweet Annie?" - she was so perfect, so complete - our first baby girl, a little sister, a boy and a girl just a year apart, WOW, were we blessed........ and yet, we didn't quite know it.

Almost 7 years ago when Annie was born we should have thought "why us?" - "Why did you bless us so abundantly Lord?".  Nope, those words were never spoken.  Yes, of course we were thrilled, of course we thanked God for our little family, but we sort of expected kids who could walk and talk.  We thought for sure we would have kids who would have melt downs or who may not have the best of manners, maybe even kids with allergies or other inconveniences, but it never crossed our minds that maybe we would have kids with seizures or g-tubes or orthotics or life threatening conditions.  We never thought that we would need to thank God that our child was breathing - after she turned blue and was raced to the ER over and over  again.  We never thought we would have to thank God that there was a medicine that could stop our daughter from hyperventilating because she was passing out so much from lack of oxygen and dehydration.  Never did we think that we would have to praise God each and every morning just because He graced us with another day with our sweet daughter.  When holding our little newborn angel we just thanked God that He had "delivered" - He gave us exactly what we wanted and expected - a healthy baby girl.  We never questioned it, we just thanked Him.

Boy were we nieve.  The sicknesses came, the development became delayed, the testing started and we became desperate.  We started begging and pleading with God - please, let this be an easy fix.  Please let this be a season, not a lifetime.  Please God let there be medicine that can help her.  We want, want, want, and expect, expect, expect.  What happens when we don't get what we expect to have?  When what we pray and plead for is something that is so natural and easy and expected for everyone else that its taken for granted?

We never ask "why me?" when good things happen but we are so quick to ask "why me" when bad things come into our life.  Why?  Are we so selfish that we think we deserve everything to be handed to us?  Do we honestly think that we are so divine that bad things can't touch us?  I don't know why God chooses certain people to give a "wake up" call to.  I don't know why He chose me, my family, my Annie, but I do know that I have been given an amazing gift.  A gift that I will always be thankful for, a gift that I will NEVER take for granted.  I have a child who is unable to do 1 single thing for herself, a child that is so helpless that every single aspect of her daily living has to be conducted for her.  So many things that are typically taken for granted I now praise God for.

I try not to ask the dark "why me" question but when days get rough I admit, I do go there.  The majority of my days, however, are spent asking God "why me?  Why did you bless me so abundantly" and you better believe I praise God every single morning my children wake just because they are breathing and thriving.

Job 2:10  "What?  Shall we recieve good at the hand of God, and shall we not recieve evil?"

It is in this same "why me Lord" attitude that we read the following research.

http://rettsyndrome.wordpress.com/2011/12/22/the-x-factor/

I honestly cannot believe that God has blessed us with such amazing research and has brought us so close to a cure for our Annie.  I know that she may not be cured in this lifetime, that only God knows when, exactly, He will grace us with her ability to walk, talk, and voice her opinions, thoughts and her dreams but I do know that I will continue to ask God "why me?  Why us?  Why Rett Syndrome? Why have you decided to bring THIS disease so close to a cure?" and in a perfect time I will ask "Why did you choose to bless MY families life with such an amazing miraculous cure?".  Until then I will continue to praise Him for what I do have - and that is far too much.  Happy New Year friends!

Truth in the Tinsel

One of my favorite things about homeschooling is looking around through blogs of other home schooling moms.  I am not a very creative person so I LOVE when other's post about a really great craft or a fun, creative way of teaching so I can take the idea and use it with my own kiddos - weather its teaching Annie something new or just having some fun with all 3 of them.  This is exactly what I was doing last week over at 1+1+1=1 when I was reading about Truth in Tinsel - An Advent Experience for Little Hands.  The name intrigued me because I am always looking for ways to steer my kids in the direction of Jesus at Christmas time and away from Santa and presents.  So, I dug a little deeper and LOVED what I saw.

The book starts on Dec. 1 and runs through Dec. 24.  Each day consists of 5 parts: The first part is a clue, the second is a scripture verse, the third is an ornament craft, the fourth is a discussion and the fifth is extras. Through this advent experience our family will go through the whole story of how God gave us His very own Son - the most amazing story ever told!  The book is incredibly organized and detailed.  It's an ebook so there are hyperlinks to the scriptures and all the templates for the crafts are right there on your desktop.  I've looked at a few of the ornaments and have already come up with ways to adapt them for Annie, not to mention all the opportunities we will have to use her computer to communicate about our lesson.  I've already decided that instead of having the kids read the "clue" for the day I will have Annie say the clue with her computer.  I'm so excited to start this tradition with my kids.  I think we will start by buying a small tree to set up in the basement that we can fill with all the ornaments we make.  I encourage you to check it out here: Special Black Friday price is only $2.99!  But don't worry, if you miss that price the regular price is just $4.99!  

Home Schooling

I'm thrilled to report that home schooling Annie is going GREAT!  We are both still alive and well :)  Seriously though, I'm actually quite shocked to say that things are going so well.  I've had homeschooling on my heart for years but I don't trust my heart, I'm a total control freak and I was really doubting that this whole home schooling thing was just something else I could control.  While that may be true to some degree, it is also very true that Annie's school setting was incredibly unhealthy (a recap here).  So, the homeschooling bit won out and I'm so happy that it did.

Annie and I are enjoying a much more relaxed atmosphere and the entire family is enjoying a much happier, calmer household.  I can't tell you how liberating it is to not have to research, gather professionals, and meet to battle the school for Annie's basic human needs (which was happening almost weekly).  To not have to beg someone or spend the money on an advocate or lawyer to get someone to help Annie go to the bathroom, eat with her peers or .... "gasp"..... spend some time in a gen ed classroom - is not only an enormous chunk of anxiety lifted off of our shoulders but also a very large cost savings for us.

The BEST news - Annie is flourishing!  Our family has seen a much happier Annie and screaming fits are at an all time low.  Everyone around her has seen a difference, her "buddy" for bible school has noticed a huge change in her social activity and a much better engagement of her surroundings and art projects that wasn't really there before.  I attribute a lot of this to her now being surrounded by people who believe in her, people who believe she is an intelligent little 6 1/2 year old girl trapped inside a body that doesn't work.
                                    
Recently I have come across 2 awesome things that describe Annie to a T.  The first is the picture above and the second is a quote from an article that I recently read about Maisy, a little girl battling rett syndrome: "Information is taken in normally, researchers say, but it can’t come out".  Information is taken in normally - normally, did you read that?  Normally!  That was always the point I was tying to make with people in education.  All of her teachers, therapists, social workers, even her advocates wanted to get it through to me that Annie doesn't learn like typical children learn and that is simply NOT the case.  This amazing child is taking everything in, she has been learning everything the typical way that any other kid does for her entire life.  The challenging part is to get it OUT but it IS going IN!  No special teacher, special curriculum needed - solid proof for full-inclusion that was denied to us year after year.  My heart aches - not for Annie, she is in a better place, she had a family that believed in her and had the resources to home school her - my heart aches for the kids who are being told they "can't" over and over and over.  The kids that are told they have no business being with other kids their age because they have nothing to contribute.  The children who are denied augmentative communication systems because the school feels that it will be wasted on them.  My heart aches for these kids.  I imagine they stay strong for a few years and then they start to give up.  If there wasn't a cognitive disorder to begin with on will certainly be created in these very intelligent children that have bodies that don't work.  What a shame, what a waste, what narrow minded people we can be.  


I'm not only pointing the finger at people in our district, but also at myself.  I believe in Annie 100% but she has never been formally taught many things so when I started home schooling her we started at a pretty basic preschool/kindergarten level.  We started using a wonderful program that we found online called "Ready2Read" By Annie Moffat.  I saw this online and instantly thought - this is GREAT!  Colorful, easy to adapt - perfect to teach Annie how to read. 


It took us a few weeks in September to actually get down to business, we were busy getting James and Grace settled and then just enjoying some calm time and trying to figure out a schedule - when would be best to learn (turns out Annie likes to relax and nap all morning, come 11am she is good to go).   But once we got going it was clear that Annie already knew what I was teaching her.  I worked very slowly, the 1 week lesson I stretched into 2 weeks and I went over and over words believing that insesant repetition would be the key to Annie learning.  Until one day Annie was irritated, looked at her computer and told me "easy" "slow".  I realized then that I was just like the public school I pulled her from.  I was using my own doubting and quizing over and over to make sure that Annie knew what I was teaching when all the while she was telling me to move on.  Sooo, that's what we've done, we have moved on.
  
Annie has gotten through 3 lessons in the Ready2Read curriculum and has continued to be restless, so the other day I pulled out a random stack of sight word flash cards, we hadn't worked on these before but she was asking for something more challenging - to my surprise Annie got 10 out of 10 right!  Clearly she knew these words.  I moved on to addition (we have worked so hard on literacy that I didn't give a second thought to other subjects so we hadn't gone through these either) turns out Annie knows how to add!  Smart girl!  Smarter than I gave her credit for.  


Well, lesson learned!  From now on I will be stepping it up with our bright little student.  Despite the illnesses that have plagued Annie already this season, our next move is to see if Annie is, in fact, already able to read - and why wouldn't she?  James started reading when he was just 3 years old, who's to say Annie didn't follow suit?  I will keep you all posted to see how she does!  And of course I will be writing more about what curriculums we are choosing and how we are able to test Annie on all that she knows and is capable of learning.  


The smartest of minds could be hidden in a child without a voice stuck in a wheelchair.  If we don't help get that information out we will be missing out on something extraordinary.