Gratitude in the Face of Disappointment

It's November; that means it's time for FB's annual 30 Days of Gratitude status updates.  This is the second year I've joined in.  I think it's good to take a minute and express your thankfulness about the blessings in your life.  We have SO much to be thankful for.  God has been so good to us.  

So today makes my second post in a row about derailed hope in the Duchenne community.  Last time, I wrote about how GSK's phase III trial on the exon skipping drug, Drisapersen, failed to meet it's endpoints.  Well today, I write to let you know that the competing pharmaceutical trial, Sarepta's exon skipping drug eteplirsen, was just denied accelerated approval from the FDA.  In a nutshell, the FDA thinks the trials were too small and the data not strong enough to move forward on.  They've asked Sarepta to regroup and try a new Phase III trial with a larger group of boys and place half of them on a placebo.  Sigh.  Duchenne is such a rare disease, that it may not be possible to find that large a number of boys who qualify.  The second problem is that no one will want their child to be in the placebo group.  So we've really been punched in the ribs on this one.  It will take years longer now to get this drug out to all the boys who need it.  Years that we don't have.  This is a rapidly progressively deteriorating disease.......the math doesn't add up. 

  The FDA basically just told us all that most of our boys are going to die or have muscles that are too wasted to be helped by the time this drug is available (if it is ever available).  So in the wake of all these setbacks and heartaches, what am I thankful for today?  THE FDA.

Yep, those guys.  They have an incredibly difficult job, seeking out which drugs to give the green light to and which ones to send back to the lab.  I don't envy the FDA for a minute.  I applaud them for doing the best they can with the data they are given.  I may not always agree with them, but I don't work there.  I don't have a full grasp of what approving a drug entails.  What I do know is that the FDA hasn't denied eteplirsen because they hate people with muscle disease, they've denied it because it didn't meet the criteria they judge new therapies by.  This is not a forever denial, it is a "not now, go back and try again and give us new data first" denial.    Unfortunately, with Duchenne, it means more boys will pass and more boys will decline.  This delay may quite possibly cause Little to progress too far to benefit from the therapy by the time his formula is ready.  And that sucks.  Big fat hairy donkey balls.  But if regrouping and reformatting the trials are what ultimately lead to drug therapies that save future DMD kids - well then. 

I was told 2 years ago that my son would never get better, that he'd die before he was legally able to buy his first beer.  I've come to terms with that.  I don't want it - but I understand that's the way this genetic condition plays out.  I've accepted that my son will not lead the life I had envisioned for him while I was pregnant.  The realist in me takes whatever glimmer of light is out there with a grain of salt.  Yes, when things looked like they were working out for Andrew to be one who received a drug therapy formatted to his mutation, I got excited.  I praised God.  But my prayers have always said,  "God, if it be Your will, then....."  I have always known that these drugs might not come in time to save my son.  If they ever do, I will dance with the joy of a thousand angels in my heart, but I will not survive this journey if I don't stay grounded and humbled.  And today, with the news that none of those drugs have Little's name stamped on them at the moment, I still praise God.  He has given me so much.  He gave me Andrew.  He is letting me keep him right now, when He could have allowed a miscarriage or a stillbirth to "ease" my life and heartache - save ME from a life with Duchenne.  But instead He allowed my son to come to be.  He is allowing me to love Andrew for as long as he is on this earth.  How blessed am I?

And when the time is right, the formulas are right, and the data is there - the FDA will approve a therapy for Duchenne.  I know something is coming, even if it is not in my son's lifetime.  And I am grateful. 

Back to the Drawing Board

Or to the lab, rather.  This morning the Duchenne community was dealt a pretty crushing blow.  Prosensa/GSK's Phase III trial of the exon 51 skipping drug, Drisapersen, failed to meet it's end points.  What that means is that the boys on the drug showed no significant statistical improvements over the boys in the placebo group. 

If you are completely lost, read Building a Bridge Part 1 and part 2.

What this means for Pro044, the version of Drisapersen that is supposed to help Little, is still unknown at this time.  The Phase III trial for that one was slated to start next fall.  I don't know if they will go forward with it or not.  I do know that they have discontinued dosing any of the boys in the 51 trial and are looking into it more to see if there may be a subset of boys who benefitted more than others.

It was with a very heavy heart that I read the news on Facebook today.  This was the drug that most of us had pinned our hopes on.  I know that it wasn't going to be a cure, but I had really hoped that it would be the drug that improved Little's quality of life.  Worst case, the drug is abandoned all together ~ best case, they can reformulate it and start new trials. 

There is still a similar drug out there in trials called Eteplirsen, by Sarepta Therapeutics.  It is also an exon skipping drug targeted at 51.  I am holding out some hope that this one fares better than Drisapersen.  If so, then hopefully they will add in a formula targeted at the exon Little needs skipped but for right now, it is not on their list.

Although I am saddened by the failure of the drug trial, I am not defeated.   When Little was diagnosed in 2011, we had the bomb dropped on us right then.  Duchenne was introduced to us as an absolutely fatal, not even a treatment to help him slow it down, take your kid home and love him while you have him disease.  So I already come from a place of quiet, reserved hope while still preparing for a life where no drug is viable in time for Little.  Push along and do what I can to make sure his days are the best they can be, trusting in God to take care of him until the Duchenne sends him Home.  Crossing my fingers that one of these labs unlocks the key to reversing muscle waste while still planning on the timeline of deterioration that Duchenne has always followed for every single one of its victims.  Cautious optimism, if you will.  I've always known that even if this drug did work, that it might not be available in time for my son.  This may have been the biggest and brightest hope for a long term therapy for Andrew and the others, but it certainly isn't the only thing out there.  There are many more drugs on the horizon, more labs working on research, and more people aware of this disease than ever before.    I've got my fingers crossed for Halo for one.    Halo is working on HT-100, a drug that is intended to promote healthy muscle regeneration, diminish inflammation and the resulting damage to muscle, and decrease the scar tissue that forms in the muscles of children with DMD.  Less scar tissue = more flexibility and less pain.  Yes, please.  As Parent Project Muscular Dystrophy (PPMD) said today, "We have lost a battle, not the war".

I know some of you are thinking "How can she still trust in God to take care of her son when He let this drug fail?  She sure thanked Him for the discovery of the drug - where is He now?"  Well, it's simple.  Its called faith.  I have faith that God will take care of Andrew because he said He would. 
"For I know the plans I have made for you" declared the Lord.  "Plans to prosper you, and not to harm you,  plans to give you hope, and a future.  Then you will call on me and  come and pray to me, and I will listen to you.  You will seek me and find me, when you seek me with all your heart."  Jeremiah 29: 11-13
I still believe that the discovery of exon skipping therapies will be a gateway to curing all sorts of genetic disorders.  Maybe not Duchenne, and that's okay.  Disappointing, but okay.  And maybe a drug therapy won't come at all during Little's lifetime, and that's okay, too.  Again, disappointing, but as always, not my will but Thine. 

I leave you with the hymn that always pops into my head during times like this ~ times of let down,   times of dashed hope.  Times where the future looks dark and scary and I feel helpless to save Andrew from his broken genes.  Times when I need to remind myself that this life is temporary and what is waiting for us on the other side is full of grace and mercy. 

When peace, like a river, attendeth my way, when sorrows like sea billows roll; whatever my lot, Thou hast taught me to say, it is well, it is well with my soul.

Though Satan should buffett, though trials should come, let this blest assurance control, that  Christ has regarded my helpless estate and hath shed His own blood for my soul.

It is well with my soul.
 

Totally Emma

Since the tone of my last post was less than upbeat, I thought I'd switch gears with this one.  I can't think of a better topic to make everyone smile and cheer than one incredible little miss;

 Emma Wasson 

Emma is the daughter of an old high school friend of mine, Kenny, and his wife Jerilyn.  This may sound familiar to some of you, since I have talked about her and asked for prayers on her behalf before on Facebook.  For the folks who don't know much about her, I'll give a little background.

This is from her CaringBridge page (http://www.caringbridge.org/visit/emmawasson)

Emma Wasson was born Saturday, August 25 2012 at 4:12 a.m. She was induced at 38 weeks due to some heart rate decreases. Everything on ultrasound looked fine, but my doctor still had a "gut feeling" something was wrong. The doctor said it would probably lead to c-section because inductions at 0 cm dialated are not usually successful. Emma surprised us all! Mom went 0-10 cm dialated in less than 7 hours, pushed for an hour, and she was here! It was a stressful delivery because her heart rate kept dropping and it went so fast. She weighed 5 lbs 3 oz, 18 3/4 inches long, and had an apgar of 7.9. She appeared to be a healthy newborn. Two hours later while in the nursery getting her bath, she turned blue. They called in a pediatrician. The pediatrician said oxygen levels were not good and she heard a heart murmur. Emma was transferred to Arkansas Children's Hospital. Mom and Dad were released an hour later (6 hours after birth) to follow her. She was diagnosed with Pulmonary Atresia with Intact Ventricular Septum (PA-IVS). This particular type of heart defect is rare. This heart defect (present at birth) made her a candidate for a genetic disorder. Three weeks later she was diagnosed with Turner Syndrome, a genetic disorder affecting girls only due to a missing X sex chromosome. Only 1% of fetuses live to term with this genetic disorder. Only two people in medical journal history have had the above combination of disorders. Emma also had a coarctation of the aorta. This is rare because children usually do not live with disease on both sides of the heart. Emma developed chylous effusion soon after birth and the drainage tube caused a perforation in her bowel. This led to abdominal surgery. Emma has had 4 heart catheter procedures, one open heart surgery, and one abdominal surgery.

Emma's odds of survival were slim - very slim.  On more than one occasion, the Wassons had to make heart wrenching end of life care decisions.  But every time the doctors have said "There is nothing more we can do", Emma has dug her heels in and won.  She is one determined tot!  To everyone's amazement, Emma grew stronger, beat infections and pneumonia, her kidneys, lungs, and heart began to heal, she started tolerating her feeds, and fought her way not only off of the "palliative care" list, but out of the hospital completely after 254 consecutive days.  She has been home for 4 months now, with only a few short stays in the hospital since coming home! 

She (and her parents) has SO many people in her corner. Emma is a beautiful, miraculous proof of the power of prayer.  This defiant little girl refused to follow the path that so many others with complicated genetic disorders sadly must follow and just celebrated her very first birthday. 

 

I have been praying for this girl her whole life.  Something about her story and the way her mother pushes forward each and every day - even in the darkest of hours - with her faith in God and hope in her heart just absolutely struck a chord in me.  The way she writes about her journey is so real and raw and I am so grateful she has chosen to allow all of us into this world that she could have kept private.  I am so inspired by Jerilyn and Kenny and the way they have soldiered through this incredible roller coaster ride Emma has taken them on this past year.  They make me want to do better and be better for Andrew, whose medical care at the moment pales in comparison to Emma's. 

Emma's parents have asked that everyone who can, consider donating one of two Tiny Love Mobiles to Arkansas Children's Hospital CVICU in honor of Emma's 1st birthday.  There is a pink version and a green version.

Emma has the pink one and loves it.  It has been with her through every hospital stay.  You can find them for just over $20 at Target and I've even made it super easy for you, just click on a color for a direct link (pink or green).  They are also available at BabiesRUs, Albee Baby, Amazon, and Diapers.com.
You can have them shipped to the hospital at:

Arkansas Children's Hospital 

Attn: Volunteer Services

1 Children's Way, Slot 108 

Little Rock, AR 72202 

The hospital is excited to see how many will be donated!

I just wanted to publicly wish sweet Emma a very VERY  happy birthday and thank all of you who have also been praying for her and her parents.  Please don't stop!  The challenges for Emma, Kenny, and Jerilyn are not in the past.  Emma continues to keep her parents and doctors on their toes with her medical conditions.  But they've all learned to expect nothing less from their girl.

Please keep Emma and Andrew both in your thoughts on Thursday, as they both have cardiology appointments that day.  Prayers for good scans that show strong hearts for both of these precious babes!

*If you'd like to follow Emma on Facebook, her url is https://www.facebook.com/TotallyEmma and her CaringBridge link is toward the beginning of this post.  To learn more about Turner Syndrome, check out http://www.turnersyndrome.org/ and to learn more about Pulmonary Atresia, you can find information on it at http://www.mayoclinic.org/pulmonary-atresia/ .

It's My Party and I'll Cry if I Want to

There is an unwritten rule out there about Special Needs Moms and I feel the need to challenge it.  You know, the one that says we have to be hopeful, strong, happy, and above it all at all times.  The one that says we can't give in to a moment of weakness over what is looming in the dark (medically) for our children.  The one that says any hint of sadness in our eyes means we must be spending all of our time dwelling in despair.  The one that causes otherwise very nice and compassionate individuals to stick their foot in their mouth and bark out things like, "Don't be so negative, you have to stay positive" or worse, "This too shall pass" (pass?  Did you really just remind me that my son is going to die?  THANKS, ASSHAT.)  Well guess what, guys?  Positivity won't cure my son.  I can be happy happy happy (yes, that's a Duck Dynasty quote) but it won't stop Little's muscles from deteriorating deteriorating deteriorating.

Who decided that I had to be Molly Friggin Sunshine every day?  Where in the world does it state that I, as the mother of a child with a terminal condition, cannot ever grieve? 

Why do you expect so much more from me than from yourselves?

I am an imperfect human.  I have mood swings.  I have bad days.  I have a heart so full of love for my husband and child that the idea of something hurting either of them brings me to tears.   I have heartstrings that can be yanked, and a soul that can be briefly crushed.  I forget to "give it to God" sometimes.  I hit the ground in sobs when horrible realizations about a life with Duchenne come rushing at me like a freight train. 

This morning I was making coffee and out of nowhere, one of those DMD trains hit me.  Smacked me right in the gut and took my breath away for a minute.  I made the mistake letting it out and after the hugs and promises of prayer (BEST!) the scolding started to trickle in.  "Stop ..... ....".  "Don't ........."  "You shouldn't....."   Now I know these people meant well, but for whatever reason, when a mother like me has a moment of pain show through, people feel the urge to shake their finger at her.   Why?  Why can't I break down once in a blue moon?  You're allowed to get upset about standing in an extra long line at Starbucks, but I'm not allowed to cry over the erosion of my son's legs?  Punch yourself in the face.

Do you understand what Duchenne is?  Do you understand that it will - not might, WILL - kill Little eventually?  And by eventually, I don't mean when he's 78.  I don't even mean when he's 48.  Try 18.  Or 14.  Or 23.  Do you fully understand what I mean by "In a wheelchair"?  If you think that equates to just not being able to walk, then no, no you don't.  Andrew will not just lose the ability to move his muscles, he will literally become a bag of bones.  There will be no reaching over to scratch the mosquito bite on his elbow that is driving him crazy.  He won't be paralyzed.  He'll be non-ambulatory.  There is a huge difference.  A paralytic wouldn't even know he has an itch when bitten by a mosquito.  One who is non-ambulatory  will feel with the same intensity that we all do when we have one, he just won't be able to do anything about it.  He will not just be rolling around on two wheels, he'll be in something like this: 

All that gear on the back?  Those tubes and wires are what will keep him alive as his respiratory system weakens and he can no longer breathe by himself and his heart fails.  No, you didn't grasp the immensity of Duchenne, or you wouldn't have said what you said.

I know that sometimes, the offender says what they do because they are ignorant.  Other times, they are caught off guard and sometimes, they genuinely have no idea how condescending or clueless they sound.  I also know that sometimes the offender makes a stupid remark back to us because they are so uncomfortable with the topic that they just blurt out anything they can think of to end the conversation and run away.   Things like:

"It will be okay"   *Nope.  It will never be "okay" that my son is losing his strength, little by little, each and every day.
"Don't dwell on it"  *Huh?  Who decided I was dwelling there?  Do you know me at all?
"But that won't be Andrew"  *I'm sorry, have you had a chat with God?  Did He tell you Andrew would be the first person in the history of Duchenne to keep his muscles? 
"He'll get better, I just know it"  *It's not a cold, folks, it's a genetic disorder. 
"You have to think positively"  *See my Phil Roberston comparison above.
"Maybe you'll be glad when......"  *WRONG.
"Stop being so negative"  *Since when is an expressed moment of pain equal to a personality change?

Things that actually are helpful when I've sunk to my knees in prayer and tears:
"I'm sorry" 
"I'll keep praying for you"
"That makes me sad, pisses me off, and gives me motivation to research, pray, and do anything I can, all at the same time"  *Thank you, Marta - nailed it.
"I love/care about/am thinking of you, Mister, and Little"
A hug.  You don't even have to say anything.

Support.  All we need in that hour of pain is your judgment free, unconditional support.  I need you to realize that this is a moment  I am having, not a lifestyle change.  It really pisses me off that some of you act as thought we need your permission to feel our feelings.   I have to face the realities of this, spending every second on a puffy pink cloud of ignorance will not help any of us in the long run.  Let me have my moment so that I can adjust to it and move forward.  And I will adjust and carry on.  I always do.  My hope is in the Lord and so I cannot wallow in the darkness for long.  He always lifts me up.  Always.  I have never been one to stay miserable and I don't foresee that changing.  I do, however have my days when it lurks around for a while.  This is a heavy disease.  No one can get through it without tears, grief, or anger.  I am allowed to take pause and consider what is happening to my son.  This disease gives me the right to cry.  And you?  You have the right to lift me up or walk away.  You do not get to pass judgment or criticism on a life you know nothing about.

So please remember - hug, love, support, prayer, and I will turn to Him and I will pull out of my sadness whenever it hits.  I will settle back into hoping one of those treatments comes to fruition before it is too late for Little.  I will figure out what the newest setback in his physicality means for us and go from there.  Onwards and upwards, right Russell?

Hope for Little

Good things continue to move forward over in the Prosensa labs.

You may remember a little about exon skipping (and my sweet train track drawing) and how it could extend Andrew's life, but if not - or you just need a refresher, check out these two posts I wrote a while back before you continue on with this one:

http://homemadetatertot.blogspot.com/2012/03/building-bridge.html

http://homemadetatertot.blogspot.com/2012/04/building-bridge-part-2.html

Remember how I said that each different genetic mutation that results in Duchenne will require it's own specific formula/version of the drug to work it's magic on the boys?  Andrew has a deletion mutation in exon 45.  There is a chart that shows how to know what exon(s) need to be skipped for each mutation in my post above (building-bridge-part-2).  So Andrew could benefit from skipping either exon 44 or 46.  Well, this is from the Prosensa website:

http://prosensa.eu/technology-and-products/pipeline/pro044

 

PRO044

Indication	Compound	Discovery	Pre-clinical	Phase I/II	Phase III
Duchenne Muscular Dystrophy (DMD)	PRO044

Prosensa’s second product in development, PRO044, induces exon 44 skipping in the dystrophin gene and is intended for approximately 6% of all Duchenne Muscular Dystrophy (DMD) patients, including those with deletions of exon 43, exon 45, exons 38-43, exons 40-43, exons 42-43, and exons 45-54. The underlying chemistry and mechanism of PRO045 are similar to drisapersen. PRO044 is highly sequence specific minimizing the risk for off-target affects.
PRO044 addresses a separate sub-population of DMD patients and is currently in a Phase I/II study in Europe to assess the safety and efficacy of the medication for DMD patients with a mutation around location 44 in the DNA for the dystrophin protein. We expect to complete in the second half of 2013. PRO044 has been extensively tested in a series of cultured muscle cells from patients with different relevant mutations, and in the hDMD mouse model.
Details of the clinical trials, such as inclusion/exclusion criteria and trial sites, are posted on the website www.clinicaltrials.gov and all required approvals of authorities and ethics committees are granted. PRO044 has been granted orphan drug status in the European Union and the United States.
-----------------------------------------------------------------------------------------------------------------------


Yes, I've already cried about it.  You just can't know how huge this is if you don't have a loved one (or have something yourself that is as-of-yet untreatable) with a disease like this.  If you've never had to hear a version of the words "Your son isn't going to get better", then you get on your knees NOW and thank the good Lord in Heaven for blessing you with healthy children or children whose diseases are treatable, curable, or have ANY treatment/drug/therapy/surgery with a possible outcome of hope for your child.  Why?  Because Duchenne doesn't.  Duchenne is and always has been a death sentence.  But that may be about to finally change.


This drug therapy above, PRO044, is not a cure.  It will not take the DMD away nor will it prevent Little from deteriorating.  What it is, is hope.  Hope that Little and the others will not die as teenagers.  Hope that Little and the others will live to be 50+.  Hope that Little and the others will walk until they are 30+.  Hope that Little and the others will keep strong healthy hearts and breathe easily without ventilators and tracheostomies well into middle age.  Hope that Little and the others will be the first generation of Duchenne to beat the odds that are laid out before them.  A drug like this has the potential to rewrite the timeline that has always played out as the progression of this disease. 

I don't know when this drug will be available, but the fact that it is happening at all is just mind blowing.  Hopefully it will be ready before Little is in a wheelchair.  Even if it's not, he will still benefit from it and it still means everything I said above to the boys younger than Little with DMD.  Mister and I got to hold on to each other for a few minutes before he left for work today and really take in a moment of hope for our son.  There is much to be excited about this morning! 


 

Just Keep Swimming

I put Little in swimming lessons!  They are held at the Y (of course) and are 4 days/week for 2 weeks.  We are halfway through.  The weather has been less than ideal - on Thursday, it was 67 degrees and raining.  Yet we've both been in the pool, shivering and learning, every time.  And yes, I said "we're both" in the pool.  All of my DMD readers don't need this explained, but some of you might not truly understand why I appear to helicopter over him in certain situations.   Andrew needs a one on one adult or instructor with him at all times in the water in case his legs give out or he gets knocked over.   He does not have the balance, coordination, or strength to get himself back upright in the water.  Everything takes just a bit more effort in the water, especially when it is chest deep!  But I refuse to make him miss out on something like swim class for the selfish reason of not being able to just be a spectator like all the other moms.  So into the water we go.  I did ask the instructor if she minded first, by the way.  I think she's secretly grateful for it since there are 8 little polliwogs and only 1 of her.  I've had to redirect a few of them from wading into water over their heads a couple of times now while Instructor was working with a different child (once the child was sputtering and floundering).  She can't be everywhere at once!  She's great with Little, as you'll see in the video.

He really likes swim class, though it didn't start off that way.  Lots of shrieking the first day.  Lots of clinging to Mommy.  Lots of my forcing his legs straight so that he could see that yes, he really can just touch the bottom and stand up.  Lots of screaming and leg curling when it was time to go down the frog slide.  I just stuck with it and made him do everything, knowing it was for his own good and that he'd be fine once he got comfortable with it.  Now he voluntarily blows bubbles with his mouth and asks to go down the slide!  I really want a picture of him going down the slide, but I have to get him up the steps and into position so that Instructor can take over from the outside and help him down the big frog tongue slide.  So I am behind him when he goes down.  Maybe one of the other parents will have to get in the pool this week and if so, I'll see if they can help out so I can get a picture.

 

 

 

 

Life jacket training.  Andrew was the only one she was able to let go of and the only one who didn't get scared being put in the back floating position.  My little fish.

 

Why does Instructor look like she's freezing to death?  Because it was 67 degrees and raining.  There were only 4 of us who showed up to swim class that day. 



Yesterday was a friend's 5th birthday party at the riding stables on post.  Little had a BLAST.  He was completely worn out and fell asleep on the ride home.  Here he is with his Ayla, waiting on their turn.

 

 

Such a change from the way he usually acts around ponies!

This one was taken in March.

Little has turned not only into a fish, but a songbird:



He has also taken up yoga as of late.

I turned my own arm into Little's logo.

And this is Caleb, our Little's Leaguer of the day!  He has been supporting Andrew internationally (Germany) until recently.  Now he's wishing us well stateside.

I said what?

I have an epic fear of the dentist.  I cry just making an appointment over the phone.  I was at Clarksville Dental Spa a few months ago getting my first check up since 2005 (seriously - that afraid) and all they could do to me was take x-rays because panic would set in as soon as they held up any instruments.  They SWORE they could take care of all of my issues - which were much fewer than I had anticipated, seeing as how it had been 8 years since I'd been in to a dentist - 2 cavities, a root canal with a crown, and a deep cleaning- in one sitting.  I take care of my teeth, I just hate going to the dentist.  So we scheduled an appointment for a fully sedated block of 3 hours to get it all done at once.  Sounded great to me!  Knock it all out in one shot AND I'd get to sleep through it all?  Perfect.  Except that's not what happened.

First, they called me 3 days before my appointment and told me they'd have to reschedule for a few weeks later bc the dentist had some family events to attend that day.  So, sweet, I got to dread it and have nightmares about all my teeth being yanked out of my head for an extra 2 weeks.  Then, less than 48 hours before the second scheduled appointment, they called to reschedule it again.  Tried to make it for 3:00 in the afternoon that same day.  Umm.  You can't eat or drink anything the day of sedation so there was no way that was going to work.  That's just asking for a migraine.  The next available appointment was for an entire month later.  So this place that is supposed to cater to people with dental anxiety has now tripled the amount of time I have to deal with mine leading up to the big day.  The original appointment was for the first week of May, the one they actually stuck with was June 19.  On top of that, I had to resecure a sitter for Little and Mister had to reschedule a day off work every single time they changed my appointment.  *And they make you pay up front, so you can't just get frustrated and take your business elsewhere.

So I took my 2 valium at bedtime the night before, just as prescribed.  Felt nothing.  It's supposed to help you sleep, but it didn't do jack for me.  Probably because of my years of migraine medicines.  Nothing in the weaker than a Maxalt seems to have any effect on me.  Yesterday morning I woke up feeling like a slug and pouted around the house since I couldn't have any coffee and I knew that in just 2 hours I would be in the torture chamber.  At 10:00 I took the two little football shaped pills called Triazolam, like I was supposed to.  The nurse had told me they had a Xanax like effect to them.  I've never taken Xanax, so that didn't mean anything to me.  We hopped in the car and started to take Little to a babysitter so that Mister could stay with me at the dentist.  At 10:15, Mister recognized a city code enforcer parked in the neighborhood, so he stopped and rolled down the window to chat with her for a minute.  That's when I realized these little blue pills were no joke.  Definitely stronger than a Maxalt.  When he rolled the window back up I told him to swear not to let me talk to anyone until this was over, hide my phone from me, and why were the trees moving like that?  That's the last thing I remember.

According to my husband, I was in and out of consciousness from that point on and when I was up, I was up and when I was down, I was o.u.t.  Here are some of the highlights of the day, as reported to me by my husband.

Things I did or said on the car ride there:

~ Hey don't let me talk to Whitney.  Promise you won't let her come out to the car.  Roll up the windows RIGHTNOW so that she can't come out and see me, I cannot talk to anyone like this!

~Hide my phone.  I really don't need to talk to anyone like this.  Really.  Take my phone and don't give it back to me no matter what.

~Ooh, my phone!  I'm gonna call my mom!  (into her voicemail)  HEEEEEEEEEEEEEEEEEEEEEEEEY MOOOOOOOOOOOOOOOM!!!!  I'm on so many drugs!!!!! click.  There, that oughta confuse her ALL day!!!! HAHAHAHAHAHAHA  Let's call Gran!  I'm gonna call Gran!  (Gran picks up)  HEEEEEEEEEEEEEEY GRAAAAAAAAAAAAAAAN!!!  I'm on so many drugs!!!!!!!!  Wharrtre you doing?  Druuuuuugs!  That's what I'm doing!  Why are the trees moving like that?  I'm on drugs!  Weeeeeeeeeeeeeeeeeeeee!   ***pull into Whitney's house to drop off Andrew*** Sam, don't let Whitney come out and talk to me!  I'm on too many drugs.  HI GRAN!  Don't forget Andrew!  No, I'm talking to Sam - Gran!  Hey!!! DRUUUUUUGS!

~pass out. pop awake. pass out. pop awake.

~dance to the radio and tell Husband that we should go to the club so I can go dancing

~pass out

~Where's the kid?!?!?!  Is he at Whitney's?  Did we forget?  Don't let her talk to me.

Things I did or said at the Dental Spa before the appointment even started:

~I can't get out of the car.  Stop helping me!  I can do it.  I can't move my legs. 

~ **standing in the parking lot**  Can we just stand here for a minute?  My legs feel heavy.  **3 minutes later, Mister gives up and drags me inside.

~ Ask Mister to sign me in at the front desk about 16 times

~My mom calls back and I HAVE to answer it.  Don't know what I said, but I know was loud.

~I HAVE TO PEE!  Tried to take Mister outside to the bathroom down the hall but was redirected to the one inside the clinic by a nurse.  Hey,  a bathroom!  I have to pee!  You have to help me!  **Start to take down pants while door is wide open.  Sam saves the day.

~ **Aid comes to get me and I am still wearing my sunglasses.  Tries to take them off and I throw a fit.  I'm going to need those back!  You can't have them.  I need those when we are finished.  **gives them to Husband.  I'm going to need those back (angry glare at the receptionist who had nothing to do with it).

~ Yeah, that'll work!  **At the numbers on the scale they weighed me on in the back room.  Mister said I was pretty happy with my weight.

Things the Dentist and assistants told my husband I did or said during the appointment:

~Nurse to Husband:  What church do ya'll go to?
  Husband:  Barker's Mill........
  Nurse:  Oh, okay.
  Husband:  Why?
  Nurse:  Well, she wouldn't let us do any work on her until we all prayed together first. 
  Husband:  That sounds about right.
**YEAAAH!!!!!!!  Good job, Katherine!  Look at me, remembering whose in charge even when I'm medically and legally roofied!
 

~Dentist to Husband:  What happened to her???
  Husband:  What do you mean?
  Dentist:  I mean, why is she so anxious?  Did something happen when she was a child?
  Husband:  I'm not sure.  I know she's been dreading this for months and she REALLY hates going to the dentist.
  Dentist:  Yeah, I could see that.  Well we can't finish.  She's a little girl and we've given her more medicine that we've ever given anyone ever before.  All we got done was the cleaning and part of the root canal.  She'll have to come back atleast 2 more times to finish that and the 4 cavities. ***4??????  There are 4 now????***

Dentist:  We asked her if she was ok with coming back and changing her sedation method. She said ok but she's all drugged up.
Husband:  No kidding.

~Nurse:  Next time I think we'll have to try doubling the dose of pills and using gas instead of sedation. 
**WHAAAT?**

~Nurse:  Ok, she's ready to go now.  You'll have to pull your car around back.  There's no way she's walking out here.
  Husband:  Oh man.  Are we going to have to stretcher her out?
  Nurse:  We managed to get her in  a wheelchair.  I'm not sure how long we'll be able to keep her there.
 Husband runs to the car.

~ Where are my glasses?  What did the dentist say?  Where's the kid?  Don't let me talk to Whitney.

~Nurse to Husband:  So some of the draw down effects of these drugs are sleepiness and confusion.  You need to stay with her all day.  As in don't just put her to bed then take off somewhere - you need to actually be right there with her.
Husband:  Ok, that's fine.
Nurse:  And most of the time, the patient has lots of tears and crying as the drugs wear off.
Me: **waves hand in a dismissive manner**  Psshhhhhhhhhh. he's got that one down with me!  Laughs histerically as I flop about in my wheelchair.

~Husband tries to get me in the car and I inform him that I can't remember how to get my leg inside the door.

Things I did or said on the way home:

~ pass out

~pop wide awake  What'd the dentist say?

~pass out

~pop wide awake, look in the backseat and scream "Where's the kid?!?!?!?!"  Tells me he's at Whitney's and we are going to get him right now and I say.....Yep, you guessed it "Don't let her come talk to me.  Promise?  I don't wanna talk to anyone.  I'm on drugs.  What did the dentist say?  Did they get it all done?"

~pass out

~Pop awake and see Little in his car seat behind me.  Where that kid come from?!  What did the dentist say?

~pass out

At home:

~pass out on the couch for a few hours, much to my husband's relief

~wake up groggy, but not quite as incoherent.  Where's the kid? What'd the dentist say?

~Burst into tears at the thought of having to go back a few more times to finish up what was supposed to have all been done in one visit.  *But I only cried one more time!  So take THAT nurse who said I would be a big baby all day*

~When is my face supposed to feel normal?
  Mister:  In about 2 hours
  Me:  Oh.  wait - 2 hours from now or from when they numbed me?
  Mister:  When they numbed you.
  Me:  Umm, it's after 5:00.  I've been numb for like 6 hours.  What did the dentist say?
*ended up not wearing off until sometime over night.  I think I was numb for about 15 hours.  I totally believe them that they gave me more drugs than any other patient ever.

~ *As my head got clearer*  Me:  What did the dentist say?  Did they get it all done?
  Mister:  deadpans "NO.  I told you, you have to go back bc they couldn't finish."
Me:  WHAT?!?!  Why not?  OMG I have to go back????!
Mister:  What do you want me to say?  I don't know why they didn't finish!  I don't have all the answers.
**Mister clearly had lost his sense of humor and patience with me at this point and didn't care to hide it from me**
Mister:  I'm taking the kid and going outside for a while.
Me:  bursts into tears for the second time "Why are you being so mean?"
Mister:  Because I've already answered that for you like 20 times.  You keep asking me the same thing over and over again.
Me:  I can't help it!!!  I'm not doing it on purpose, I've been on drugs!  How do you not understand it?  You WORK on a drug task force!
Mister:  flees for the safety of the outdoors but later apologizes

-------------------------------------------------------------------------------------------------------------------

So there you have it.  The more entertaining parts of the day, that he's remembered to tell me so far.  I cannot believe I have to go back again and that they found 2 additional cavities.  My entire face is going to be numb that day.  I am really just so disappointed that a place that claims to cater to people with my phobia and guarantees that they will make you perfectly comfortable and can handle it all - couldn't seem to get a grip on how to fix ANY of my teeth.  NONE.  All they did was clean them.  Didn't fill a single cavity.   AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGH I HATE THE DENTIST!  Thank you SO much, very first dental assistant when I was a tot who backed me into a corner and pointed the explorer (the worst tool ever - it's the one shaped like a hook) at me and yelled at me to get in the chair or else she was calling over the dentist - and you don't want him in here, believe me!  And thank you, Chandra, the clumsiest person to ever change rubber bands and brackets on someone with braces.  Never left that place without busted gums, a slit bottom lip, or shredded cheeks - every month for FOUR years and a month. 

There is NO WAY I'm allowing them to finish my root canal without IV sedation.  I've been awake for one before and it was the worst experience I've ever had at the dentist.  So add that to the 2 examples above of why I am absolutely petrified of the dentist.  Plus, the crazy patchwork job they did on that tooth left me with a big grey smudge on the front of the tooth!  A FREAKING GREY TOOTH.  So now I have to walk around looking like a meth mouth until this root canal gets finished - which with their track record of postponing appointments could be next February.

So, if you'll excuse me know, I think I ought to call my mom and Gran and make sure I didn't say anything worse than "I'm on druuuuuuuuuuuuuuuuuuuuuuuuuuugs!"  Oh, and Whitney - thank you for watching Andrew, even though I apparently wanted to hide from you.

I Can do it Myself

There is a time in a toddler's life when he or she decides for themselves that are ready to be a "big kid".  They start trying to figure out the mechanics of pulling their shoes off of their feet and pulling the lids off of their sippy cups so they can flood the kitchen, I mean fill their own cup up at the refrigerator door.  They start screeching "No, Mama!  I do it myself!" multiple times a day while simultaneously shredding the tissue and swatting away your arm that was outstretched to wipe that runny nose.  According to What to Expect: the Toddler Years (oh yes, the book series stretches out beyond just pregnancy), this phase usually sets in around the 29 month age (so, 2 years and 5 months for the mathematically challenged).  This is around the same time that tykes start feeling confident and capable in their own abilities to do the things you have always done for them.  In fact, they feel overconfident - I'd say more like superheroes; brave and full of pride.  They do things like scaling the countertop to get their own bowl for cereal and run into the living room with the butcher knife because that banana you usually slice for them each morning?  Well they "doo'd it demselfs". 

Not my son.  In one of his evaluations last December, a PT told me he was "very aware of his own limitations" and that he was protective of himself in the way of refusing to perform tasks that could potentially harm him.  *He was refusing to climb (crawl) down a set of therapy steps at the time.  She called it self-preservation.  This was not a dig at my overprotectiveness or meant in any kind of negative way whatsoever.  In fact, she sounded kind of impressed at how self aware he was and she told me it was great that he had developed that sense about himself so early on.  I know it doesn't sound like such a desirable trait for a toddler, but when a broken leg could send you to a wheelchair by the age of 6 instead of 12 - then trust me, it is. 

Little's "help me do it" attitude has not just been in the aide of physical feats, like climbing stairs or jumping on the couch, but it in all aspects of his life.  He has been perfectly content having me and Mister do even the simplest tasks that are considered self-help.  I could encourage him, full on cheerleader style to go pull his own wet wipe out of canister himself so we can clean up the spilled oatmeal, but all I would get back is "I can't!  Not by myself!"  No sense of Hmmmmm,-maybe-this-is-something-I-should-try-for-myself seemed to be in there at all. 

Do you want to brush your teeth?  No, Mommy do it.
Can you try to pull your socks off?  No, it's too hard!
Now you try to pull your pants up.  No!  Youuuuuuuuu!
Do you want to check the mail with me?  Yes!  Ok, come on.  No!  Hold me, Daddy!!!

I know some of you are thinking "Well she just does too much for him.  She should just make him do things himself."  Well I'm betting those of you thinking that don't have a child with a muscle disorder. Yes, I do a lot for him.  Yes, I am keenly aware of the things he cannot or should not do for himself due to the dangers.  So I do step in where I need to.  But I *don't* just autopilot everything for him.  I try and try and encourage and use that stupid singsongy voice while grinning ear to ear and chanting "You can do it!  Just try!" 3000 times a day.  I try to get him to do everything from undoing the Velcro on his monster shoes to singing "Brushabrushabrusha" from Grease while handing him his toothbrush to squealing and clapping like a lunatic every time he shows initiative.  Do you seriously think I want to have to get up and do every little thing he needs for him?  Do you think I don't want to just sit on the couch and breathe for 5 minutes uninterrupted by neediness?  Do you have any idea how long it has taken me to type this much of this blog post out?  I've been up about 14 times already.  I try.  So hard.   He just doesn't care.  Or lacks confidence.  Or is lazy.  Heck if I know.

I began feeling like I was just always going to have to do everything for him.  I know that the time will come when his arms no longer work and so I will have to begin dressing him again as a teenager, but I used to think that somewhere between now and then, Andrew would dress himself.  Well we've had weekly OT* since he was about 15 months old and Little still seems to have no desire or idea how to put on his own shirt.  Left arm through the neck hole?  Sure, that seems right.  It sure would be easier than sticking it through that other smaller one.  Wait, I'm stuck.  And it's dark.  MOMMY HEEEEELP!!!!  You do it!!!!   *Not blaming his OT.  She is wonderful and kind and cares so much about Little.  She has practically transformed his little hands from curled up, crunched in closed fists to a hand that can grasp a crayon and hold a spoon and finger paint.

As with most all of Little's milestones, I've been waiting a looooooooong time for this one.  Andrew is not 29 months, he is 39 months (again, that's 3 years and 3 months).  So 10 months past what is considered "average" for that phase to start.  Now, before you all get hung up on the use of the word "average", please notice that I did place it in quotations, but I have to use some adjective that describes the way a child without any sort of special needs typically is expected to develop.  And besides, Andrew is not average.  Duchenne does not occur in your "average" child.  So yes, the word is appropriate.  I also could have used normal, typical, regular, usual, etc but those all seemed worse to me.  So average it is.  Back to the point here, which is that my child has never been a "me do it" toddler.

Until now.  Halleluyer, my son has started saying, "I can do it by myself!" for the past 2 weeks.  All of the sudden, one day he just decided that he doesn't need me to carry him up the 2 steps from our garage to the inside of our house, he can crawl up them and get in himself.  He doesn't need me to get him a spoon out of the drawer for his cereal, he can pull the drawer open and dig one out himself while I am pouring the milk.  He has decided that he doesn't need Daddy to carry him out to the mailbox, he can walk there himself and pull open the hatch.  He doesn't need me to loosen the Velcro on his monster shoes before pulling them off, he can do it himself (the Velcro, not the pulling off part - but we'll get there).  <-- actually="" already="" and="" ask="" back="" be="" believe="" by="" clothes="" come="" day="" dressed="" get="" go="" he="" him="" his="" i="" let="" ll="" might="" myself="" nbsp="" one="" out="" p="" pick="" room="" starting="" that="" the="" time="" to="" when="" will="">
He has been trying to do so much this week.  He is still so aware of his limitations, though.  Like earlier today, he wanted a mini bag of Fritos for a snack, so he went to the pantry and got them himself.  Then he brought them to me and asked me to open them.  Didn't even try to do it himself, as he knows he lacks the strength and dexterity to grasp the two different sides of the bag and pull it apart.  Many times in these last 2 weeks, I have heard him say "I can do it!" then pause as his mind wraps around the mechanics necessary to accomplish whatever it was and then ask me "Can you help?"  And yes, this new sense of freedom and bravery and confidence he has means more and bigger messes in the house.  Like the flooded kitchen floor referenced in the first paragraph...  But these are messes that I am lucky to be able to clean up (now with his help).

I don't know if it's preschool and being around so many other children who can physically do so much more than he can or just that the particular switch in his brain that signals the "I can do it" attitude to kick in has finally activated, but I am so thankful.  This is a stage that is so easy to take for granted or get annoyed with because doing it themselves means it takes 7xs longer, but I welcome it with open arms.  This seems to be a recurring theme in the Palmer house...crawling, making messes, having to babyproof...life with a special needs child is so challenging yet rewarding in ways life with an "average" developing child is not.  I believe that my sense of gratitude is much more sensitive/heightened than most people's.  Every milestone that he hits is a true gift.  Ok, I lied.  I am not thrilled at all with the WHY? that follows every. single. thing. I say to him.  But then again, speech has never been an issue.  So I guess I just reinforced my point.

Speaking of preschool - here is how much he loves it:


 

Muscle Walks and a Talent Show

So our 2013 winter/spring season of fundraising has finally come to a close.  In early March, we had our annual MDA Muscle Walk in Arkansas.  We raised $2630!!!!!!!  WAY past our goal of $1500!  I just can't thank you guys enough for all the donations!  Little's League totally came through this year.



We shrunk in size a bit this year, but it sure didn't slow down our spirit!  Check out Little's sweet ride during the Victory Lap!








That's my dad, for those of you wondering.

Our youngest team member turned 2 that day, so we celebrated with cupcakes.







Little Boy's always in the spotlight.  He knows exactly what he's supposed to do in front of that banner.



The MDA crew

And because.......well......putting Andrew on a horse is never not hilarious.

My mom couldn't take it and swooped in to rescue him.

Next up, we had Music City Muscle Walk (Nashville).  We couldn't actually attend since it was the same day as Little Rock's, so I worked with the chapter there and found a way to keep our team registered but donate late.  For that, the incredible students at Montgomery Central High School in Cunningham, TN devoted their annual Talent Show for charity to Andrew and Duchenne - for the second year in a row!  These teens are so amazing!!!!!!!  They can pick any charity they want, so for them to pick MDA again just blew my mind.  Thanks to these students, we got to send $800 to MDA Nashville!  That's the exact amount of money it takes to send one child to MDA's summer camp.  So the money will either sponsor a child with DMD for summer camp, or go to DMD research.

Here are some highlights from this year's crop of talent:

Jack Roney

Haleigh Smith



And the winner, Madelyn Pulley



 Little and his girlfriend, Littler (who is actually older than he is!) getting cozy to watch the show.

Our "check" for $800 - which all came from donations at the door.

All of the participants and the student directors and emcees with Andrew and his big check.

Thank you again to Bailey McMahan, Lauren Ritter, Maggie & Scott Davis, and the MCHS NHS for putting this on and letting us be a part of it.  We were truly honored.

So that makes a total of $3430.00 that Little's League raised for MDA this time!!!!!!!!!!!

Our Little's Leaguer of the week:  Wayne Pinckley!  Wayne is a member of our church, Barker's Mill Church of Christ, adores Andrew, and has been known to make me cry like a fool a time or two.  :)  This photo is from an old timey play date our tots had at church a few weeks ago.  I don't think you can usually find him on an itty bitty trike, but then again.......I don't really know what he does in his spare time.  ;p

Dene Ward's Flight Paths

As I mentioned in my last post, I am taking part in a blog sharing group.  The one i shared with you titled  With New Ears was my submission to the group.  Well the group hosts liked it so much, they've decided to host it over on their main site @ maidservantsofchrist.com  Pretty cool, huh?  Go check it out!  Today all of us who are participating are sharing another writer's blog.  So I introduce you to Dene; a devotional writer.  Dene currently has two books out; Soul Food: Lessons From Hearth to Heart and Flight Paths: a Devotional Guide for Your Journey.  She writes over at http://flightpaths.weebly.com

HOLDING HANDS

I sat with my hands in lap, listening to the announcements.   When it came time for prayer, instantly two hands reached for one and held the until the amens echoed around the building.

The hand on the right was my husband's.  after spending thirty nine years together, it seemed only natural.   We are always touching, patting, and hugging.  To walk past one another without some sort of physical contact is unthinkable.   What has made this relationship even more remarkable though, is the spiritual sharing and touching.    Wen two people pray for the same things, hope for the same things, and endure the same things with the help of the same Comforter, two people who were so an like in the beginning that several people tried to talk us out of this marriage,  the closeness can only be with the help of the Divine Creator who united us in far more than just holy matrimony.

The other hand came from a friend, someone's have known for several years now, who has supported me in every way imaginable,  who has stood by me and lifted my name up in prayer, who has shared her own trials with me and allowed me to help her as well, someone who lives nearly fifty miles from me, whom I would never have known except that we share the same Savior and the same hope and a place in the same spiritual family.

Some people view holding hands in prayer as nothing more than an outward show of emotionalism.   To me those hands signify the unifying power of the grace of God.  That unity began with 12 men who never would have come together in any other way, and soon spread to add one more.   Some were urbane city dwellers who looked down on lowly Galileans.  Some were working class men while another was a highly educated Pharisee.  Some had Hebrew/Aramaic names while others' names bore the influence of  Hellenism.  One was a Zealot and the other his political enemy, a tax collector.   Yet The Lord brought the together in a unity at conquered the world.

I have held black hands and brown hands and white hands.  I have held plump soft hands and I have held rough calloused hands.  I have held the tender hands of the young and the withered hands of the old.   I have held the hands of lawyers and doctors and plumbers and farmers, teachers and nurses and secretaries and homemakers, hands that hammer nails and hands that toe on computer keyboards, hands that cook and sew and even hands that carry a weapon on the job.  We all have this in common --- our Lord saved us when none of us deserved it.  That is His unifying power.

The hand of God is the one that makes all of our hands worth holding.

May the God of endurance and  encouragement grant you to live in such harmony with one another, in accord with Christ Jesus, that together you may with one voice glorify  the God and Father of our Lord Jesus Christ.  Therefore welcome one another as Christ has welcomed you, for the glory of God.  Romans 15:5-7

Dene Ward

So I am still in Florida and doing all of this on my iPad on borrowed wifi, so forgive my typos and I will feature a Little's Leaguer next time when I have access to my photos again.  

With New Ears

A few weeks ago, our new preacher gave a sermon on a Sunday night on a topic that I thought I knew all about.  I've heard the story a hundred times; Jesus was arrested, taken in front of Pilate, admits he is the son of God, and pays the price for it - paving the way for us to gain entry into Heaven.  I'm sure most of you have heard all about it a hundred times, too.  It's only the biggest deal in the Bible - it's the whole point of Christ on Earth.  But as I was sitting there, listening to Brother Dean describe all the details of what agonies Jesus went through, what God chose to allow to happen to His son - it was like I was hearing it for the first time.  In fact, it effected me so much, that I mentioned it to the preacher.  I couldn't quite put my finger on what it was that got to me, though.  Preacher Man could tell it was marinating in my head so much that he even stopped by house the next night.  I still didn't have an answer for him.  It didn't hit me until last Thursday as I was driving from Ft Campbell, KY to my parents' house in Arkansas.  Then it hit me square in the face.  I grabbed my phone and babbled a barely coherent note to Siri to write this blog as soon as I was back at home in front of my computer.

So why did the Lord's death leave me shaken in a way it never had before?  Because THIS woman had never heard the story before.  Yeah, I know I just said I had heard it a hundred times.  But that was before.  Before Little.  Before Duchenne.  You know, before.

See, I had never heard the story of the crucifixion with a set of mother's ears before.  Having a child changes everything.  Having a child with a chronic illness?  Well.  There's just nothing, no person, and not a single solitary event that I view the same as I did before.  I have more empathy for others, I assume that people are acting out of struggle more than just bad manners or rudeness than I used to, I carry more pain around with me (for myself, my husband, my son, my friends and family who are dealing with hardships, strangers on the news, sad stories on the internet, etc),  I judge less.  I don't mean that I am sad all the time - I am certainly not!  I guess, I just mean that I am softer now.  My corners are less likely to cut you.  This brief time I've had in the world of Duchenne and parenthood has completely altered my perception.

Hearing what our Lord had to endure, I could not stop myself from thinking about his own parents.  Not Joseph so much, because to be honest, I don't really know what happened to him after Jesus taught in the temple when he was 12.  The Bible doesn't say a whole lot else about him.  But Mary was there that day.  Mary was there as they were preparing him for the cross.  As Dean Roach (my preacher) was talking about the stripping of Jesus's robes and the beatings and spitting, I just kept feeling these stabs in my heart for his mother.  To see your child like that?  To know what was about to happen - that he was about to have spikes driven through his wrists as if he were a scrap piece of wood?  Mary had to witness something so unfathomable - her baby nailed to a cross.  Did you all know Jesus was scourged?  That means his beard was ripped off of his face - hand pulled off of his face.  So not only did she see her son on the cross, thorns in his head, but his flesh was missing from his cheeks and chin.  How Mary survived that horror herself, was only through the grace of God.  I sat there listening to Dean describing the details of that day and I couldn't help but think about the pain and suffering that I will have to watch my own child go through as his DMD progresses.  Little's muscles will begin to waste away soon and contract into themselves, painfully pulling away from his joints.  He will begin to lose strength and mobility as that happens, falling more frequently, bruising and scraping and breaking skin and bones along the way.  And as I sat there, comparing and contrasting Mary's experience with my own, one mother to another, I realized that God, too went through everything Mary did.  He's Jesus's father, so all of that parental pain and anguish Mary felt, God felt, too - except that God did it by choice.  God did this on purpose.

God did it for us.

Our God is an awesome God!  Knowing FULL well how horrendous that day would be, God still sacrificed his one and only son as payment for our sins.  He gave up his child for us.  For you.  For me.  For nasty old, pitiful, terrible, sinful, undeserving, scumbags such as ourselves.  He took a chance on us.  He let his son die that way on the shot of just one of us accepting Him as our Almighty, as his Son as our Lord and Savior and that we'd repent and be baptized for the forgiveness of our sins.  There are just no words powerful enough to thank Him.  I just...........oh man.  Nope, no words.  Magnify His name!  

Could I give up my son if it meant a cure for Duchenne?  Could I hand my son over to the wolves and let them rip him apart limb from limb if it meant that by doing so, all anyone with DMD had to do was believe in him and live for God and they'd be free from this disease?  That's essentially what Mary did.  She trusted in God, allowed her son to do what God called him to do, and endured the worst reality anyone could ever face.  The disciples even decided to take her away at one point bc they didn't want her to watch Jesus actually be nailed to the cross.  Then she came back.  She couldn't stay away.  No matter how terrible it was, Mary could not stay away from her son's side.  What a remarkable mother.  But could I do the same?  I don't know.  I would hope so, but I don't know.  I had trouble just handing him over to his surgical team earlier this week because of the elevated risk of death he has from anesthesia (more on that in the next blog).   But wow - what incredible parents Jesus had.  We should all be so in love with our children.  Keep in mind that we are all God's children, too.  He gave up one child (Jesus) to save the others (us).  "For God so loved the world that he gave his only begotten son that whosoever believeth in him shall not perish, but have eternal life."  John 3:16

I think this particular sermon will stick with me for a very long time.  It has left some vivid images in my head and emotions in my heart.  I am excited to see what other lessons from the Bible are going to sound brand new to me with these "new ears" of mine.  The story of Job is another one that I was able to learn more from this go-round, too.  

If you are reading my blog for the first time today - welcome!  I know some of you are here from a little blog sharing I am taking part of as a christian blog swap group.  I hope you stick around and feel free to check out some of my older posts.  "The Diagnosis" is a good one to check out if you have no idea what I'm referencing when I talk about DMD or Little.

To my regulars - Next up: MDA Muscle Walk 2013, Little's surgery, & some RiDiCuLoUsLy fantastic pictures from his 3 yr photo shoot.  Little's Leaguer of  the month will be back next time, too!

God bless!

Katherine