All Of Me

Matt Hammitt is the lead singer for Sanctus Real.  He and his wife had their 3rd child in September of 2010.  A little boy named Bowen who was born with a serious and rare congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), in which the left side of the heart is severely underdeveloped.  You can read all about their journey at their blog HERE.  In Sept. 2011 Matt released this song, a story about his son Bowen.  I  heard this song on the radio the other day and listened closely to the lyrics, I started to cry as his words to his son matched my own feelings for my sweet Annie perfectly.  These words could have been taken straight from my heart, I love this little girl....

Afraid to love, something that could break
Could I move on if you were torn away?
And I'm so close to what I can't control
I can't give you half my heart and pray He makes you whole

You're gonna have all of me
You're gonna have all of me
'Cause you're worth every falling tear
You're worth facing any fear

You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me is where I'll start

I won't let sadness steal you from my arms
I won't let pain keep you from my heart
I'll trade the fear of all that I could lose
For every moment I'll share with you

You're gonna have all of me
You're gonna have all of me
'Cause you're worth every falling tear
You're worth facing any fear

You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me is where I'll start

Heaven brought you to this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you even if I bleed
You're worth all of me, you're worth all of me

You're gonna have all of me
You're gonna have all of me
'Cause you're worth every falling tear
You're worth facing any fear

You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me is where I'll start

You're gonna have all of me
'Cause you're worth every falling tear
You're worth facing any fear

You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me is where I'll start
Is where I'll start

Pause the music at the bottom of the blog roll and click the play button to hear the song.

Success!

The Barnes and Nobel Fundraiser was a HUGE success and a TON of fun!  What a fantastic night with a bunch of great kids!
 
Annie's friend Rachel (beautiful Rett girl) came out for the evening and the pair were like little celebrities!

Barnes and Nobel was packed it seemed that everyone in the bookstore knew Annie.  Every person we passed by said Hi to her and wanted to stop to talk, introduce themselves and get a picture with our little angel.  The kids were so excited to tell us about what they had learned about Rett Syndrome and as one boy put it "We just really need to cure this".  Yep, couldn't have said it better myself!

The Girl Power Flower was EVERYWHERE! Even on this cow!

And Yes, a Girl Power cake too!  

I honestly can't thank Mr. Dalton and all of his 8th graders for going above and beyond for Annie and for Rett Syndrome.  Annie was so excited at the event she was completely worn out when we left:



If you missed the event but still want to help there are a few days left to buy books online and have the proceeds benefit Girl Power 2 Cure - just type in the Book Fair code below.


I'll be sure to update with a total raised from this amazing event!

 A special "Thank You"!  To the kids who made video's of Annie's fight with Rett Syndrome, and for those who wrote letters, and gave special gifts of Annie's favorite things.  She enjoying all of her goodies!!

Fox 2 News and Barnes and Nobel Fundraiser

Brian Dalton is an 8th grade teacher at West Middle School.  He has an amazing group of kids that are putting together a fundraiser at Barnes and Nobel this Friday.  All proceeds from purchases on Friday night will go to Girl Power 2 Cure for Rett Syndrome Research!  This is the second year that Mr. Dalton's 8th graders have been working to fund a cure for Rett Syndrome and we couldn't be more blessed.  This year Mr. Dalton got Fox 2 News to come out and do a story about Rett Syndrome and the fundraiser the video is below.

Eight Graders Raising Money for Rett Syndrome Research: MyFoxDETROIT.com

If you are in the area please stop by Barnes and Nobel on Friday from 6pm to close all proceeds of the sales that night will go to Rett Research.  If you're not in the area you can still help by going online and buying off of the Barnes and Nobel website using the code below.


A HUGE thank you to Mr. Dalton and all the 8th graders involved!

Annie update

Well, its been awhile so I thought I'd give an update.  Unfortunatly it's not a great one.  Annie has been having a very difficult time lately.  She was back in the hospital on Good Friday with more seizures.  This time they lasted from 1pm to 11:30pm.  Stopping them was an issue since Annie is no longer able to have Ativan (what they typically give in the hospital to stop seizures) since last time her blood pressure dropped to scary numbers.  Thankfully we had our wonderful Rett Specialist, Dr. Sasha, via phone and she was able to tell the residents how to proceed with our sweet Annie.  We only spent 1 night in the PICU and were able to be home late Saturday night just in time to get ready for our Sunday Easter Brunch
.

With seizures continuing we have increased Annie's meds.  It looks as though Annie is following a trend of having seizures every 3 months and once she has 1 her body is unable to stop having them.  Our plan now is to wait until there is another one (likely in July) and stop them immediatly with our rescue med.  I feel a little more at ease now that there's a plan.

Since this last hospital stay and really since about January Annie has just not really been herself.  She is much weaker these days, some days not able to stand at all and other days her legs give out after just a few minutes of being upright.  Screaming fits are at an all time high (OK, not regression high but high!).  We aren't sure of the reason for this but Annie is screaming for multiple hours a day every day now.  Her hips also seem to be giving her trouble, when she is standing she tends to guard her right leg (which has the hip that's subluxated 30%).  She has also taken a couple tumbles in the past few days, both on my watch (Great job Super mom).  Breath holding spells are also getting out of hand and her circulation is especially poor and is causing her pain. Lately we have also noticed what we can only describe as "crazy eyes" - she will wake from a nap or in the middle of the night, her eyes will open super wide and will dart around the room in a circle over and over and over again, sometimes her eyes will be in sequence and other times her right eye will look right and her left eye will look left - see, crazy eyes.  We aren't sure what this is, likely just a "rett episode" which rett parents will understand but possibly seizures in her sleep.

spent

Sleeping has been greatly increased as well which is a side effect of the medication.  This is both good and bad - the good is that Annie is sleeping through the night most nights and we have completely cut out benedryl (YAY!) and are decreasing her melatonin, which we were previously using to get her to sleep.  The bad is that she is sleepy all through out the day and when Annie gets sleepy she can only nap when circumstances are perfect which means we are at home, she is on the couch, no one can make a sound and depending on her mood that day she either needs to be left completly alone or she needs Scott or I to hold her and snuggle until she falls asleep, you also can't wait too long to put her down because then she's over tired but you can't put her down too soon because then she will just get restless and start to move around and won't be able to settle. Guess how often we can make circumstances perfect for Annie - Yep, hardly ever - guess what Annie does when she's tired but can't sleep - scream!  This is likely the reason for the crazy hours of screaming she is doing now.  Annie's weight and appetite have also increased, another side effect of the medication, which is also good and bad.  Good because Annie needed to gain some weight and an increased appetite means increased nourishment.  Bad because it is getting harder and harder for me to lift her, get her in and out of the car and up and down the stairs.  She is stll very tiny - only about 36 pounds but she is long and fluctuates between being stiff as a board and limp as a wet noodle - both are very hard to carry.

Look at those cheeks

Most of our days now revolve around making Annie comfortable, trying to figure out why she is screaming, feeding her and meeting her basic needs.  There's not much time left over for therapy, school work or spending as much time with James and Grace which just breaks my heart.

We are blessed that we have people around us that are always there to help, our wonderful Miss Lauren has been amazing, she loves Annie and takes great care of her, it's so refreshing to get a break twice a week to spend time with Grace or work in James's classroom and not feel anxious about Annie because she is in such great hands.  Of course my mom is always there helping out when she can and Miss Bev gives us a beak on Sunday mornings by taking Annie to bible school.  I don't know what we would do without this amazing support.

 Through it all we have not lost hope.  When Annie has a particularly rough day I hold her and tell her again and again about the amazing research that has just come out.  We have faith that this too shall pass and that brighter days are around the corner.  We know our cure is coming but it can't come fast enough for Annie's sake and for all of us.  The kids want their sister back, they want to play with her, Annie is just desperate to have some form of independence and Scott and I can't bear to watch our sweet daughter continue to suffer.  We are praying for a cure every chance we can and will be seeing some of our specialists over the next few weeks to see if there is anything else going on - ortho for her hips, neuro for possible VMR and GI because GI is always a concern.  Please pray that we get through this season quickly and that Annie bounces back to her strong, happy self.  Hopefully our next update will be about all the accomplishments our sweet girl has made!

"For I WILL restore health to you and heal you of your wounds, said the Lord".

I Wish.......

I Wish I could be dealing with a bratty 7 year old tantrum instead of dealing with screaming fits that last hours with unknown cause.

I wish I could be burdened by my daughters occasional restless nights sleep instead of administering 2 sleep meds every night and being pleasantly surprised at a full nights sleep.

I wish I could be talking to my daughter about a mean girl or the boy in her class that's teasing her rather than desperately trying to get her to tell me her basic needs through a computer.

I wish our trips to the ER were because my daughter was being a bit too fancy on the monkey bars and took a tumble rather than because of seizures.

I wish I could be meeting with my daughters teacher because her math skills need improvement rather than needing to home school her because the school system is unequipped to educate a child like mine.

I wish I could scold my daughter for saying a nasty word or for hitting her brother or sister rather than dreaming of the day when an actual word comes from her lips or a purposeful movement comes from her hands.

I wish I could hear my daughter complain about how much she hates what I made for dinner rather than having her obediently open her mouth while I spoon feed her.

I wish our nighttime routine involved a shower, reading time and then lights out (even if I find her later reading under the covers with a flashlight), rather than me having to bath my 7 year old, dress her, brush her teeth, read to her, administer meds and hook her up to her tube feeding.

I wish I could punish my child for crossing the street without looking both ways or running over to her friends house without letting me know instead of having to put my daughter in a wheelchair and pushing her across the street hoping we will find someone at the neighborhood park that would stop and say "hi" to her.

I wish I could be searching the Internet for a new recipe to make for dinner rather than searching for the latest research in Rett Syndrome.

I wish my oldest daughter could do her little sisters hair or pick out her clothes rather than the other way around.

I wish I could polish my daughters fingernails rather than searching her fingers and hands for callouses and skin breakdown because of all the hand wringing.

I wish we could be saving for a family trip or a new big flat screen TV rather than saving for the next needed medical device or an intensive therapy program.

I wish my husband could come home early from work because it's a beautiful day and we want to spend the evening as a family rather than coming home because it's only noon and I'm already in tears from a difficult day and he has to take over.

I wish a respiratory infection would bring the annoyance of a couple sleepless nights, steam showers, a pediatricians visit and a possible antibiotic rather than all of the above plus breathing treatments, dehydration, weight loss, labored breathing and possible hospital visit.

I wish there was a cure for Rett Syndrome.

I will continue to pray that all of these wishes come true but if they don't then I pray for increased strength for the difficult days, increased energy for the sleepless nights, increased resources to meet all of my daughters needs, increased peace to make it through the sicknesses and screaming fits and increased tolerance for the typical friends that complain about things I can only wish for.

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.