Tuesday, April 22, 2014

Childhood is the most beautiful of all life's seasons.

"Childhood is the most beautiful of all life's seasons."

Beautiful and true quote, yet very bittersweet. Seeing the changes in my son hasn't been easy lately, especially after this past weekend. He has such amazing determination that I'm unsure of knowing when to stop him at times in fear of extinguishing that fire that burns so brightly inside.

Saturday was difficult for me to watch Camden have to call it quits early when he used to spend all day running and playing so hard outside at my Dad's house. He had a few down moments but took himself inside to the recliner where he needed to be. I got his DS out of the car to play and before long he had two sweet cousins by his side playing along with him.

Sunday he was determined to play football and stay outside all day. I didn't stop him. My mom was worried after he told her a few times "I just can't run fast like John and Cameron. I want to play good too." These are always hard words to hear but I find it fascinating that despite it, he keeps trying. He played so hard and was probably on the ground as many times as he was up but with each fall Matt or my sweet brother would just lift him back up and they kept on playing. I watched in awe as they all were pretty careful and let him "run" past them at times too. Regardless, he had fun. In the back of my mind I couldn't turn off the thoughts "he is going to be in bad shape later". That night he was in tears at the drop of a hat. Exhausted. I felt bad and made sure to stretch him good. We rested that night and drove back on Monday.

He seemed ok yesterday but today was a different story. When he woke up he couldn't roll out of bed as usual so I lifted him out and steadied him onto his feet. We got downstairs and I brought them their school clothes and instructed them to get dressed. Camden couldn't put his clothes on. He said his legs and arms felt too tired. So I dressed him. When I picked him up from school his teacher was worried and said he had a very off day. He wasn't himself, lacked energy and complained of a headache. She sent him to the nurse to check him out but she sent him back. She said at recess he just laid beside her on the ground and used her jacket as a pillow. At pickup, he normally stands up in the back excitedly with his buddy but she said he just collapsed against the fence. My heart just sank. This was all my fault. It was just too much on him like I feared and probably destroying more and more precious muscle. In that moment I wanted to hit myself in the face! I should have known better. Those instincts telling me not to take him for another long weekend knew the truth and I didn't listen. I didn't want to miss out and I wanted the memories for him.

As we were walking back to the car, Camden was telling me about how today was Earth Day and what he learned about taking care of our earth. We got near the front of the school and he points out all the trash on the grounds. Before I know it that little man was bending down and gathering all the trash! With each movement he faltered but he didn't stop. It was all I could do not to stand there like an idiot and sob. He came back with an armful but couldn't spot a trash can so I promised him we'd take it in our car to our trash at home. He was so proud!

This is the child whose "most beautiful season of life" is being stolen unfairly. Although I sit here sad, angry, frustrated, I can't help but sit here and be proud and amazed too. Why can't we all have that kind of spirit? Even on his worst of days, he shines. Camden McAlpine, my hero. #teamcamden #teammcalpine #camdenthestrong

Friday, April 18, 2014

The Chair

I was taken off guard Thursday afternoon when I went to pick up the boys from school.  Like always, I go get Ty first then back track to get Camden so he doesn't have to do any extra walking to our car.  When I got up to his teacher she informed me that the kindergarten has a field trip coming up next month to the zoo.  She told me that she asked Camden if his feet got tired and hurt when he did a lot of walking and he told her yes.  I agreed that they do, especially here lately.  She told him that he could either have a stroller, wheelchair or wagon to use when he got tired and he said he would like to bring and use a wheelchair.

A wheelchair...

There is just something about that word to me.  Hearing it associated with my son feels like someone is putting a dagger straight into my heart.  As a mother not ready to accept and deal with the future of what is to come, I do not like that word.  To me, using one is taking a step further into this disease.  It's a confirmation of the inevitable and a reminder of what is to come.  It's as if someone is screaming at me "Your son is handicapped.  He isn't like other kids.  He isn't normal!".

I'll never forget the first time we took Camden to physical therapy.  I wasn't prepared at all.  Seeing all those precious kids in wheelchairs, leg braces and so forth.  I remember having to race to the car to sob.  I didn't want that for Camden, never ever in a million years.

To others, this may seem like no big deal and that I should be grateful he is here and his mind is in tact. Let me tell you, no mother in this place thinks it is no big deal or ok.  Comforting words don't help.  Knowing this will eventually be his life is not ok.  Watching your baby slowly get weaker and weaker...knowing what is to come...  IT SUCKS!

My son is loosing his strength so quickly and it just kills me.  The one thing that helped some was being able to relate to another Duchenne mom.  When all else failed to help my heart, I knew I needed to message her.  She got it.  She's been there.  She understood.  She told me her son was close to this age when he started needing a chair for walking long distances to be able to rest and take breaks in.  She went through the same feelings and need for denial.  She said, with every new stage, it hurts so much.  She knew.

For a while I've felt like Camden has been teetering between the early ambulatory phase of MD and moving into the late ambulatory phase.  I've noticed the weakness progression and even the change in his walk over the last few weeks. I feel it in his ankles when I stretch him and I see it in his arms.  Every time I see his little arms and his shoulder blades protruding through his skin, I cringe and look away to save my soul from shattering.  His ability to rise from the floor has regressed as well as his ability to sit up after reclining in a chair.  I ask the questions I've asked myself probably a million times each day.  How can this be?  Why Camden?

The most important thing though, is that Camden is ok with this new phase, he is resilient.  His heart is stronger than all of ours put together I believe.  He readily agreed to the chair.  He doesn't see it as being different, but being needed and is generously and graciously accepting the help.  Because of this, I will in no way persuade him otherwise as was my first notion.   Lord, let me learn from my son.  Let me see things in a positive manner like he does.  Thank for your allowing him to have such a kind and caring teacher.  Allow me to be accepting of things I can't control.  Thank you for his sweet spirit and his innocence for innocence truly is bliss...

Monday, April 14, 2014

Take Me Out To The Ball Game

Like all little boys, Camden already has big dreams.   He wants to be a baseball player for the Texas Rangers when he grows up.  With all that is going on, we want nothing more than to help Camden achieve his dreams in whatever way he can.  So a few weeks ago I sat down with Camden and together  we made him a bucket list of his biggest dreams and wishes.  This is what my sweet six year old came up with all on his own.  Camden's Bucket List. <3

Last weekend, with the help of a very generous soul, we were able to check off number 2 on his bucket list.  My husband and I surprised him last Sunday with a shih tzu puppy who he named Penny.  She has been such a blessing and brought so much joy and happiness in our home.  The entire Mac Pac has quickly fallen in love with her.  As I have been telling everyone, she is definitely good for the soul!

This past weekend Camden got to check off TWO MORE on his bucket list, number 1(to meet a baseball player) and number 6 (to go to a Texas Rangers game)!  It was honestly one of the best weekends our family has had in a very long time!!!  

A sweet family friend, Roxanne, saw Camden's bucket list and got in touch with a friend she knows that currently works for the Rangers, Sean Decker.  A few days later she called me to let me know they had everything set up and arranged for us to not only attend a game but to meet a player and be put up in a hotel that evening after the game.  Her and her daughters, Amber and Brooke, all helped pitch in to send us a gift card to pay our gas, food and travel expenses for the weekend.  I spoke with Sean via phone and texts a few times before Saturday and he made sure to find out Camden's favorite player and give us all the information we would need for our trip.  We could hardly wait to take the family and see Camden and all the kiddos faces!  On Thursday, Camden and I went to Academy to get "Ranger Ready" for the game.  We made sure to get everyone shirts and hats.  He was so excited for Saturday to come!  Little did he know what all would be happening for him...

Saturday finally arrived!  We got up, packed our bags and excitedly put on our Ranger shirts and hats. We loaded up the mac pac, dropped Penny off with my sweet friend, Cynthia, then headed to Arlington, Texas!  Once we arrived, we drove over to check into our hotel the Rangers booked for us.  When we walked into our suite, there were four Easter baskets filled with goodies for all the kids along with a sweet card from the hotel manager wishing the family of Camden McAlpine a wonderful stay and weekend.  That was so amazing.  We unloaded our stuff, freshened up a bit and then headed over to Globe Life Park to meet Sean.  

As soon as we saw the stadium the kids were already in awe of it.  They couldn't wait to park and go inside.  Sean was so awesome, he called the staff to open up parking right at the front for our family.  We got out and started walking up to the stadium.  Camden was excited but then suddenly got a worried look on his face.  He gazed up at me with an apprehensive look and said, "Mom, that place is really high.  That means we have to go up lots of stairs doesn't it?"  Before I could respond he dropped his head down and sadly told me, "I can't do that."  Ugh, that really crushed my heart.  Sometimes I forget and just don't think.  What does it feel like to see things we take for granted without disabilities as just another big obstacle?  So I promised him that we'd either carry him or find an elevator, to not worry and enjoy it.

I called Sean who told us to meet him in the gift shop.  He found us and told us we were going to all go up to his office.  I quietly asked him if we would have to take many stairs because Camden couldn't do them and he confirmed we did need to.  He lead us to the several flights of stairs that lead up towards his office that overlooks the field.  Sean then asked Camden if he could put him on his shoulders and take him up the stairs.  Camden didn't even hesitate to say yes.  He was so kind and really touched my heart.  Normally Camden doesn't like to show outsiders his weaknesses or let them help, but it was amazing how he instantly liked Sean and let him carry the load.  We got up to his office and the kids were such a joy to watch as they looked out over his office at the view of the field.  They couldn't believe they were at a real baseball park!  Sean handed Camden an Elvis Andrus duffle bag filled with some bobble head players and other goodies.  He sat and talked to us for a bit and really took the time to get to know our family.  

Next Sean took ahold of Camden's hand and led us to a ramp that took us back down to the field.  As we walked through the stadium he told Camden and the boys all about the team, field and events that take place in order to make a Rangers game happen.  Camden was on cloud nine.  I don't think the look of awe ever left his sweet little face.  He ate it all up and hung on to every word Sean said to him.
I enjoyed just hanging back a bit, taking pics and letting him enjoy it all.  Finally, the time had come to enter the field and go watch batting practice!  Sean had arranged for Camden to be allowed on the field to watch the Rangers warm up at 4pm.
The "Oooos" and "Ahhhs" from all the kids were priceless!!!  I felt like I was standing back watching a real life move unfold of a dream come true for Camden playing before my very eyes.  My heart was so full.  Without a second thought, Sean took hold of Camden's hand again and led him down the stairs out onto the field.
Being on the field with all the players was truly a magical experience even for myself.  I have always loved watching baseball and going to games.  I grew up loving Nolan Ryan, Jeff Bagwell, Craig Biggio, "Pudge" Rodriquez and many more of the goldie oldies who are now retired.  I can only imagine what was going on in my son's mind being right there watching the team bat and warm up.  Before we knew it the staff had Adrian Beltre come over to meet Camden.  He was simply in awe...  Definitely the sweetest thing ever to see.  They presented him with a cased autographed Beltre baseball, a red Rangers hat, which he immediately replaced with the current one he had on, a foam finger and a wall sign for his room....more awesome goodies!  He was especially proud of his autographed baseball.  With each new player that came to meet him, he would shake their hand, talk to them and get a picture but wouldn't let anyone else autograph his ball.  He said he already had the best name on there, haha.  A few that really stuck out to me he met were Kevin Kouzmanoff who is number 6.  He had Camden laughing showing him how cool he was because his age was on the back of his jersey!!! :)  Then we got a treat getting to meet former player "Pudge" Rodriquez!  Another player who especially made Camden's day was the Ranger's catcher, JP Arencibia.  He met Cam, then took his picture with him and left.  A few minutes later he reappeared and presented him with the batting gloves off his hands that he had been batting with and had written his jersey number on there for him.  So awesome!  Camden put that on immediately and refused to remove it.  He was in heaven. 

Due to field regulations, no one under age 5 was allowed to be on the field during batting practice.  So Matt and I switched off a few times to be with Camden while the other stood back behind the netting in the first row with the littles.  Ty and Jax were needless to say very upset they couldn't be out there in the action with their big bro.  So when Ty's favorite player, Elvis Andrus, came over to meet him, he quickly asked the staff for another baseball to get his signature on.  He got it signed, thanked him and then I took their photo.  All of a sudden he turned around, walked over to the net and passed the ball back to Ty.  "This is for you, Tylor!"  My heart turned to mush and tears quickly filled my eyes.  Man, that boy has the sweetest heart.  The ball boy grabbed Jax one of the balls the team used during batting practice too so he wouldn't be left out.  :)
After the players finished their warm up, Sean took Camden and our entire family to check out the Rangers dugout and take pics.  Then he escorted us through the stadium giving us a tour of operations and showing us how and where everything takes place.  It was really cool and very interesting to learn how much work is put into the games by so many.  Next he took us up to the Jack Daniels Club where they had a table waiting and ready for our family to provide us dinner at their all you can eat buffet.  He sat with us for a bit and visited before he had to return back to work before the game.  It was one of the coolest days spent with such a neat and caring guy.  We are so blessed and thankful for him and all he did to help Camden and make his dreams a reality.  Sean Decker, you are a ROCK STAR!!! 

Near the end of dinner our sweet boy looked up at us both and sweetly said, "Mom, Dad, thank you so much for bringing me here today and letting me go to a game and meet real players.  I love you."  Matt and I were both in tears.  This boy...he is our heart. <3

With full bellies and happy hearts, we took off to our awesome seats on the 10th row on the third base side of home plate.  We were ready to experience our first family Rangers Game!  We bought our must have huge blue foam fingers, a pink ranger puppy for our princess Sofia and drinks for the crew.  We sat back, put on our game faces and watched the Rangers PLAY BALL!!! :D  It was a blast!  We quickly got to know everyone around us.  They felt like old friends by the second inning and were so wonderful with our kids.  We cheered hard and wore our Cambo out.  By 10pm he started to lay his head in Daddy's lap so we decided it was time to get him to bed.   He was too tired to walk so I carried him out of the stadium.  I held him so tightly and prayed thanks to God for this day.  It was a good day. A day that will never be forgotten in his world nor in our hearts.  Thank you so much, Texas Rangers, Sean Decker, Roxanne, Amber and Brooke.  We love you all and the Rangers will forever be our favorite team!  Any team that supports Team Camden are heros in our hearts.  
For it's root, root, root for the home team, if they don't win it's a shame!  For it's one, two, three strikes you're out at the old ball game!!! <3

Friday, April 11, 2014

The Waiting Game

Three months later after our visit to San Antonio and we are still waiting to pinpoint the cause of Camden's muscular dystrophy.  The first DNA and sequencing tests came back negative for any mutations or deletions.  Now they are running a supposedly newer test that can show more than a muscle biopsy and is examining more genes, trying to pick up 26 different possible causes.  However, none of these can go in and tell us the simple fact if there is dystrophin or not.  Right now, the team of doctors we are seeing are so concerned with figuring out why his blood work is stumping them, rather than treating my child with "the standard of care" that they should be for MD.  Dealing with the team at San Antonio Military Medical Center has been one of the most horrific, frustrating and infuriating experiences in my life.

I have never really been a crier.  It never was my thing, especially in front of people, until the past few months.  Now it feels like I can't stop.  I'm not sure a day has passed where I haven't cried.  I've learned there are so many types of tears and I have learned the true meaning of weeping.  There are tears of joy, frustration, helplessness, anger, fear, defeat, grief and of loss.  I have experienced every single one of these.  They also say there are five phases of grieving.  They are denial (numbness, shock), bargaining, depression, anger and acceptance.  For a while I think I flip flopped between a few of these, mostly depression and anger.  The denial phase didn't last too long for me because my intuition and medical background told me otherwise, but believe me it was there for a bit.  Bargaining, I will never fully leave that stage.  I will attempt to bargain with God until the day I no longer have a choice.  I would take this disease from my son in an instant.  I would gladly lay down my life and give him mine.  Take my strength, my arms, my legs...  please Lord, give them to my son and let him run and play and thrive.  Let him be strong.  Let him live a long life filled with happiness, isn't that all any mother dreams of for her children anyway?  Acceptance, now honestly, that is a hard one.  Will I ever really accept that this is happening to my child?  Probably not.  Do I know that this is real? Yes.  In a way, I accept this horrible fate.  What I don't accept though, is people telling me that God has chosen Camden for a reason and he is using him to teach and show people something amazing.  I choose not to believe that God in any way gave my child this fate.  I whole heartedly believe in God.  I always have.  Have I ever struggled as a christian or in my faith?  Of course.  I don't think we are human if we don't.  Do I get mad and angry with God?  YES!!!  Do I think that is wrong?  NO!   Do I still believe he is beside us and will see us through? YES INEED I DO!  I was raised in a strong christian family centered around faith.  Even though I've strayed at times from the path God would like me to be on, I have never lost faith in his love for me or for Camden.  My mom had cancer and thankfully she beat it.  I don't think God chose her to have it and suffer so he could use her to help others.  I just don't believe that and so those words offend me deeply. I do think that Camden is very special and has a special soul.  I think God made him that way and it is how he will be able to live to his fullest through all this and his upcoming trials.  However, with my faith, I still find myself stuck in depression and anger throughout the waiting game.  I want out so badly.  I want to smile a real smile and feel real joy.

Unfortunately, we now have at least three more moths to sit and wait on labs.  In the meantime, this momma has been researching, emailing, calling, messaging and fighting daily to find a better means of care for my son.  I feel San Antonio has failed him.  As hard as it is to admit, I know in my heart my child has Duchenne.  After all, I see it and live it daily.  His physical therapist sees and confirms it.  I watch him gradually grow weaker without any medical care.  Our team refuses to give my child steroids until they have the confirmatory blood work, no matter how he presents.  They are actually very much against them.  I have tried to battle this and now I'm exhausted and am trying my best to go around them and get referred out next week.  If I can ask anything right now, I ask that you PLEASE pray over us and our visit on April 17 with his primary care pediatrician.  Pray that she sees and hears me and gives us the help we need.  We want to have Camden seen at the Neuromuscular Specialty Clinic in Dallas more than anything!!!

In the meantime, we work with Camden daily.  We stretch, massage, do nightly soaks in epsom salt and continue with therapy and his new night splints.  Matt's flight school has been pushed back until January.  I'm still undecided if I will go with him or not for that 18 months or so in Alabama, especially if we finally get into Dallas.  I don't even know if we will have a on paper diagnosis by then.  We need it so badly to start the right care, get him protected properly at school and get into the Army's EFMP.  We need a house without stairs as well so badly.  Watching my child struggle with a daily obstacle in his own home is not ok with me.

He is getting so thin due to loosing his muscles and it hurts my heart and soul to look at or touch his arms and shoulders at times.  He has started experiencing more daily pains and has unfortunately realized his night splints just aren't as cool, comfortable and fun as he dreamed they would be.  My heart aches for him knowing this is just the beginning...

So we still sit and wait, stuck in limbo.  No clear future any longer.  Just many fears and unknowns.  We stand by and continue to play the waiting game.

Thursday, April 3, 2014

Our Story: The Beginning

"Our Story" is a long one so please bear with me.  So much has changed from Dec of 2013 to what we thought and dreamed was supposed to be an oh so wonderful 2014.  We had a move coming up in Februray to Ft. Rucker, Alabama.  Matt had recently been accepted into Warrant Officer school to be a pilot in the Army and we were so excited about the move and lifestyle change soon approaching us.  We were ready to bid farewell to our time here at Fort Hood and Matt's current job as an infantryman.  2014 brought us a raise, a new life, a pilot Daddy, Alabama and exciting adventures awaiting us.  Little did we know...

Our story will consist of three or four blog entries to bring you all up to date on everything as our journey continues to unfold with Camden's disease and diagnosis.  After that I plan on blogging day to day hardships as well as the daily delights.  The good, the bad and the ugly, you know, that thing we all call LIFE.  What better place to start than at "The Beginning"....

During Christmas break it was brought to our attention that our six year old son could no longer climb the stairs in our house like he always used to.  I had seen him crawl up here and there before but honestly never thought anything of it.  By all means, he's a little child and what do they do best, they play and act silly!  It's all I ever thought was going on.  Having no other reason to think otherwise, it never alarmed me.  But then I noticed it happening a lot during the break since he was home all day for two weeks.  I started by asking him to walk up the stairs like a big boy.  I stood back and watched. He struggled tremendously and dragged himself up using the railing.  Very odd...  So then I took his hand and had him walk up with me, never letting go of him.  I noticed his struggle big time, that it was very real and he was definitely using me as most of the support in the endeavor.   Next was the scariest part, I let go of his hand.  He immediately fell.  That's when the alarm bells went off that something was definitely very wrong.  I did what I'm sure most parents do when a medical issue or question arrises concerning themselves or their child, I turned to Dr. Google.  

Let me tell you what, I was in no way prepared for what I would get back each time I typed in the search bar "six year old boy with muscle weakness unable to climb stairs".  The word, before now,  had absolutely no knowledge of, a word that immediately became so seemingly scary and my greatest fear, a word I now write, read, say aloud or think of each and every day...Duchenne.  I had always known of and even seen the Jerry Lewis Marathon as a young girl and knew of Jerry's Kids.  I can honestly say I actually had no idea who they were or what it was truly about.  It was all about kids, like mine, with neuromuscular diseases just like Camden.  The MDA suddenly took on a whole new meaning.  Through my online research, I learned there are certain signs and what tests needed to be done in order to see if this is what my son could truly have going on.  I quickly became a research junkie on all types of muscular dystrophy, myopathies and possible autoimmune diseases that sounded remotely like Camden.  I needed to know what was wrong and I needed to fix it!  

I had Camden do some tests for me to see if he showed other obvious signs, symptoms or red flags for muscular dystrophy.  I wanted so badly to rule it out, to not let my mind even fear such an awful thing.  We did it in a fun sort of way by having all four kids play Simon Says.  "Simon says lay down.  Simon says get up!"  In that one all of my kids would sit up and stand right up.  Not Camden.  He would roll over, get to a knee and push up off his other knee like a struggling old man or walk on his knees over to a piece of furniture to assist himself in getting up. (Red Flag: Gower's Sign)  Next, I took them all outside to do a little race in our backyard.  Every child, even my 2 year old little girl, left Camden far behind.  His run was similar to that of a slow motion walk that looked like he was struggling so hard to complete.  (Red flag: Unable to run)  The last thing we did is take our bikes and scooters across the street to the school parking lot in order to get some fresh air and have fun.  Camden couldn't make it up any incline whatsoever.  We literally had to push him and after a bit of struggling, he gave up on riding his bike.  (Red flag:  Can't ride his bike or things he used to)  I also noticed how hard it was for him to get in and out of our van unlike his siblings.  Once all these red flags started waving their big red ugliness in my face I became terrified of what they all directed me to.  Once again, that awful word.  Duchenne.  

Once his weaknesses became known, we started noticing every little thing and slowly putting the pieces together one by one.  Since he turned five years old early last fall, he had lost lots of energy and would tire easily.  He suddenly never wanted to go outside much and play or ride his bike.  He was sick a lot more than usual that year, seeing how he was never sick in Hawaii, and missed a lot of prek.  He complained constantly of leg pain.  There were days he would begin to actually limp around.  We saw his pediatrician and even took him to the ER once when his limping got worse.  Both chalked it up to growing pains and an xray even showed wide growth plates due to him growing taller so quickly.  So we gave advil when needed, rubbed them and after a few months he finally stopped complaining of pain.  When we went on walks or out somewhere that required lots of walking, after a while he would start complaining he was tired.  Everywhere we walked he always lagged behind.  I think back now and cringe over how I was always telling him, "Hurry up, Camden!  Stop lagging behind and being a slow poke."  If I could only take those words back...  Last year we did notice that he wasn't a great runner, looked a bit funny even when he ran, but otherwise a healthy, super smart kiddo.  We chalked that up to him being a little uncoordinated and our bookworm versus our athlete.  Looking back now, I can see the little signs we missed.  I can also see why this can easily go unnoticed for a while if it wasn't apparent in infancy or as a toddler.  I always wonder if I really would have wanted to know though.  Those six years of not knowing, of him being completely normal and living a long life, the life I dreamed for him, those years are the golden years.  Those are priceless.  I want them back.

Never ever ever in a million years would we have imagined this or what we would be facing today.  Never in a million years would I have imagined this life for my first born, perfect little baby boy.  My sweet Camden, my best buddy as we were all each other had in Germany while Daddy was deployed for 15 months and only a sweet friend there to help bring him into this world.  The little man that forever changed my life for the better.  He made me a MOM!:)  He made my life so special and full of love and laughter.  My beautiful Matthew Camden McAlpine.  

I fought our horrible healthcare system with a vengenace to get him a peds appointment.  The earliest they had was three weeks out and to me, that was unacceptable.  After several persistent calls, we got him booked for the end of that week.  I was petrified for the arrival of the day of his appointment.  All I read about Duchenne sounded so much like Camden.  It is a horrible disease that is 100% fatal.  Most children don't make it to their 20s.  Some are taken far too soon due to how it attacks the heart and lungs.  It leaves children completely paralyzed and takes their ability to walk around age 9.  I refused to believe my child could have this.  It HAD to be something else or some fluke thing.  

A few days before his appointment, in all my nonstop time spent with Dr. Google, I came across this certain video labeled "Gower's Sign" on youtube.  It showed "The Duchenne Timeline" and examples of boys from the start of the disease up until their final days.  I have included the link below so you can get the full impact of what I witnessed that night.  I watched it and began sobbing uncontrollably.  Matt stopped his game and looked over at me crumpled in a ball on the couch asking what on earth I was reading now?  I handed him my phone, replayed the video and made him watch.  Within minutes he was holding me tight, sobbing right along with me.  We were like two scared children clinging to each other completely and utterly helpless.  We knew...   https://www.youtube.com/watch?v=t3uQIS9k4_Y

On Friday, Jan 3, 2014 we started the medical journey with our son at the pediatric clinic on base at Fort Hood.  After being seen, my fears were confirmed that he could very possibly have a neuromuscular disease.  Our ped immediately put him in for a pediatric neurologist referral with a Dr whom she trusted in San Antonio and a genetics referral there as well.  She told me he was very weak for his age and that she was very concerned about his poor weight gain.  She sent us to the hospital to run a number of labs, checking his CK, thyroid, CBC, ANA, CRP, Sed rate and multiple other possibilities.  They took 8 tubes from my little man that day.  He was so scared but was such a trooper once they got the needle in and took his mind off what was going on.  I, however, was shaking and crumbling inside.  I couldn't wait to get home and be able to retreat into my room and break down.

That evening, the Dr called me right away to inform us his cbc, thyroid and other labs came back normal, but his CK was indeed elevated to 2,800 (normal being 50-200, therefore indicative of muscle break down and damage) and that his CRP and sed rate showed inflammation as well.  She told me she had immediately contacted the neurologist (Dr. Faux) in San Antonio and that he agreed we were most likely looking at Muscular Dystrophy being a front runner but to let us know there were a few other possibilities that could be going on.  I was devastated.  I remember hearing her but not hearing her.  I remember for some reason responding in an up beat, "Thank you so much, we appreciate it and have a great weekend!" manner.  I was in shock, disbelief I guess.  I turned to Matt and relayed to him the results.  We both excused ourselves upstairs to our bedroom and collapsed into each other on the bed.  I've never wept in such a way.  So full of fear, hurt, sadness, devastation, questions and the biggest thing...ANGER!!!  Why our baby?!  How could this happen?!  Why, God?  WHY???  I don't think I will ever stop asking that question nor will I ever get the answer...

The next week or so was all an emotional blur.  We cried constantly.  We took turns running to the bedroom to conceal our tears and breakdowns,  making calls to our families for comfort or venting.  I remember I couldn't even look at Camden without my eyes flooding with tears.  We either slept with him, or on the floor by him.  I would lay there and kiss his cheek, caress his hair and just quietly cry as he slept.  Here was this precious little angel, laying there and sleeping so sweetly.  Completely unaware of this ugly thing that could be in his body that would slowly destroy and kill him.  

Most of all though, we changed.  Life changed.  In that single moment family and our son meant more than anything to us.  We took the time to cherish our children and do more things as a family.  We took the time to just LOVE them.  Not that we didn't before, but we definitely took a lot of time together for granted.  We fished, we bowled, we went to the park and we played board games.  The kids had fun.  We struggled now, truly noticing Camden having a hard time with so much that we did but he was still having fun and that is what mattered.  We prayed and prayed and prayed some more and sought refuge in our God.  

The next big day was Monday, Jan 13, 2014.  The day for our trip to San Antonio to see the specialists.  Up until this day my husband and I spent many a night with once again, Dr. Google.  I remember my goal would be to prove that he could surely NOT have that word that soon became a curse word in my mind.  I wouldn't wish a thing wrong with my child EVER, but if it had to be something, let it be a treatable, manageable autoimmune disease OR Beckers.  NOT NOT NOT NOT the D Word!  The more I googled and researched, the more I became depressed.  There wasn't much else it could be.

Monday came and my mom drove up from the Houston area to watch our other three children and stay with us for a few days.   We left early that morning and stopped to pick up our dear friend Brittany to go with us as support and be able to pull Camden out when needed.  It was one of the most emotional days of our lives.  After seeing Dr. Faux and a team of doctors and then Captain Rohena from genetics, we were given the worst news any parent could be given.  "Your son has Duchenne Muscular Dystrophy."  Plain and simple, just like that.  To this day I can still hear Captain Rohena's voice resonating like that little devil tv portrays sitting on your shoulder telling Matt and I with an ugly smirk and raspy mean voice...

"Duchenne is a very progressive disease that is 100% fatal.  Your son was born with a genetic defect that doesn't allow his body to produce dystrophin.  Since it can't his muscles are being broken down and destroyed and he will continue to loose them.  By about the age of 10 he will be confined to a wheelchair, later his lungs will be affected and he will need breathing assistance.  The heart and lungs are muscles as well and before long they will fail and he will either die from heart failure or lung failure, probably in his later teens."  

I never imagined a doctor to be so blunt and in my mind, cruel.  Believe me, I already knew the "timeline" and what happens because don't forget, I was very best friends with Dr. Google.  However, how dare you sit and tell me exactly what will happen to MY CHILD!  I'm sorry Captain Rohena, but you don't know Camden.  You don't know that he is a fighter and so are his Mommy and Daddy.  We aren't going to just sit back and let this death sentence you think you have given him happen without one hell of a fight!  Shame on you, sir!

During all of this Brittany had Camden outside in a waiting area playing games with him on her ipad.  There is nothing more beautiful than the sweet innocence of a child.  I can't thank the Lord enough for that and for being able to protect that and him right now for as long as we can.  We were sent to the lab to have more blood drawn for the DNA genetic testing that could take up to two months for results.  Never a fun process with a six year old little boy terrified of needles. We were then sent home to sit and wait for the call confirming their diagnosis.  We put on our smiles, grabbed Camden's little hand, and walked out the door.

We had already planned to make a day of the two and a half hour drive to San Antonio from Fort Hood as special as we could for Camden after his appointment.  Matt had been given a Bass Pro Shop gift card for Christmas so we planned to take Camden there right after and use it on him.  Together, Matt and Camden picked out new fishing poles for himself and his brothers and sister.  They put together a tackle box full of fishing supplies.  He even got to play a few fun games there.  Camden was so excited about his new fishing gear and to be able to go home, show his siblings and go fishing that weekend.  Next we let him pick his place of choice for dinner and surprise, surprise it was Chili's.   Kids dream big huh? :)  

I'll never forget how hard I worked to hide my tears and keep a fake smile plastered on my face until we got home and put Camden to bed so he couldn't see me fall to pieces.  He was so worn out from the trip and events of the day that at dinner, he laid his sweet head in Brittany's lap and rested.  I couldn't even taste my food.  I sat over my bowl of whatever new dish it was Brittany and I decided to try and cried silent tears.  We got our ticket, loaded back up in our van and began our long drive back to Fort Hood.  We attempted playing car games to keep our minds focused on driving, off of the obvious and getting home.  Sometimes I succeeded, but mostly I found myself turning to the window, hiding my face in my sleeve and silently sobbing.  I remember Brittany's sweet hand on my shoulder from time to time.  We couldn't have made it through that trip without her and I will never be more grateful to her for being there.  

My little man was exhausted after the trip.  We put him down and then I broke the news to my mom.  I didn't want her to know before we made it home because she had a big job as it was just taking care of our three younger kids and I wanted her mind clear and strong for them.  Matt, my mom and I sat on our couch in a huddle of what I guess was a group hug, clinging to one another and crying.  So much to hear and to take in.  So many thoughts, fears, unknowns, questions...  What will happen next?  What does all this really mean for my son and family?  Am I a carrier?  If so, do any other of my kids have this too?  What does this mean for our upcoming move we were supposed to have in February to Fort Rucker?  Will Matt even be able to still do flight school?  

But the biggest thoughts playing over and over and over and over....

My son is going to die.  He won't walk soon.  He will become paralyzed.  His heart and lungs will fail him.  My dreams for him are gone.  His childhood stolen.  My son is going to die.  And so I began to mourn...