Sunday, March 20, 2016

Finding Peace

So I've been reading this book and IT IS OUR LIFE!  It speaks to me on so many levels. A sweet child with an incurable disease, in out of potent treatments, with horrible side effects and numerous hospital and doctor visits all with the goal of one thing, quality of life. 
Our life exactly with Camden. It touches how it affects the whole family, their jobs, their friends and the siblings. It shows how different our lives become and how differently we learn to live them while focusing on way bigger issues than the everyday norm, yet how it gives them immense joy to see their child have a normal childlike day every once in a while. 
Then a tragic accident happens which results in a miracle from God. I wasn't sure when I decided to read this book how I'd take or react to that. A year ago reading this I know I'd say, Lord why this child? Why does this one get to live fully without a life of disease and pain? Why was this one spared? Why not mine? But over this two year long journey of being told this and that, being pulled here and there, hearing and experiencing things no parent should, my strength, faith and hope has reached a place I then didn't think fathomable. 
Also a year ago we were for a few days given news of the possibility of Camden had not one, but TWO horrible diseases. Both incurable, one with available but harsh treatments that would consume his life. The second with nothing. It was put aside but never proved and thought for various reason to be just one. 
Today, however, we are back there again and we've seen the proof. Proof of one autoimmune disease medically quieted but the MRIs showing us a different disease is continuing to waste my son away. We are now at a certainty that an unknown Muscular Dystrophy is there along with his SRP Polymyositis. It's taking his neck muscles now and eating more at his thighs and we honestly don't want to think about where else. We know it has no available treatments and there isn't anything we can do or change. A year ago, I wouldn't be taking this well, and not to say I'm not heart broken, but now I say, ok Lord, we will face this with you. 
God has plans we can't begin to understand. I think he allowed Camden's second disease to be made clear to us now because he knew we were stronger as a whole. I believe God knows our hearts. I don't want this for my son but I have no doubt in my mind God is faithful to his children and loves them. 
In this book, it tells of a miracle. That the precious young girl filled with disease experienced a tragic accident, saw God and he gave her back to her parents made completely new. 
Do I believe that can happen? Two years ago I'd say no but today I'll say yes. If we don't get it, then I'll pray another baby does, and because someone can, then hope is restored to so many. Even when I thought hope was unattainable it presented itself to me over and over again and each time I clung to it and persevered because that is what my son deserves. I'll never let go of that hope with how ever many hurdles life throws at my son or my family. 
Hope is an anchor and without it we will be lost at sea.

Thursday, January 1, 2015

A Letter To Camden: From My Heart To Yours

Dear Camden,

To my beautiful, strong, amazing, heart of gold, old soul of a son, I write to you on the first day of this New Year the tellings of my heart.  

Seven years ago on a snowy day in a little town called Sulzbach-Rosenberg, Germany, God gave me the greatest two gifts any woman could ever ask for.  He gave me the miracle of a perfect son and the greatest honor of my life, being your mother.    From the moment they placed you in my arms, my life changed forever.  I had every intention of staying in the army and going to join my "family" and "Batttles" down range in Iraq to fulfill my duties as a combat medic until that single moment.  I held you in my arms, looked at your beautiful, tiny face and knew, I could and would never leave you for anything in this world.  Three months later I got out of the army and began the most rewarding journey of my life, being a full time, stay at home mother.  I have never since looked back or regretted that decision and I never will.  

I wish that in this letter I could make you so many promises...   

On Jan 3, 2014, we officially learned you were indeed "sick" with some type of disease.  On Jan 13, 2014 we learned that you indeed had a very progressive and aggressive form of muscular dystrophy.  A year later we are still fighting every day for an answer and a specific diagnosis for you in hopes of one day a treatment or cure.  In that time, I've watched you tire, endure so many medical labs, tests and procedures.  I've seen you go under twice and be taken away from me.  In those moments it felt like my heart had been ripped out and I could no longer protect you from danger.  I have never felt so vulnerable in all my life until this past year.  My life hasn't ever been easy or handed over on a silver plate.  I've had many struggles, battles, hardships and heart aches, but this battle, my precious son, is the absolute worst I have ever had to or could ever imagine enduring.  As a mother, all we want is for our children to thrive, be healthy and happy and live long, successful lives.  To be able to see them grow up, graduate, go off to college, chase their dreams, find love and a spouse and have their own beautiful family to love.  When the life you imagine for your child, the life everyone deserves is suddenly ripped away, it's like no other pain imaginable and is indescribable.  This disease is a slow, debilitating process that will take all the things away from you that you once worked so hard to achieve.  As a mom, you treasure those firsts for your baby, especially your first baby for those of you who have more than one child.  The first time they smile, roll over, sit up, crawl, reach out for you, eat real food, hold their own bottle, drink from a cup, their first steps, their first words, climbing your stairs without giving you a heart attack, learning to ride a bike, learning to write and read, playing sports, tying their own shoes and being able to dress themselves.  All of the little things that show they are growing up, gaining independence and maturing into this little human being your dreamed they'd be.  I think the hardest part of this disease is the heart break of each and every achievement you once tackled, suddenly lost.  The slow decline from independence to dependence on me more and more each day is heart breaking.  Every achievement I listed you have either lost or will lose eventually.  

And so begins my heart breaking wishes of promises I simply can not make to you.

I wish that in 2015 I could tell you that this pain is over.  No more waking up in tears due to your night splints, no more labs and pokes, no more horrible side effects of medicines, no more leg pain and nights of no sleep, no more constant fatigue.  I wish that I could tell you there were no more Doctor appointments or crazy tests and procedures to travel to each month all over Texas.  I wish I could tell you we found a way to make you stronger.  I wish I could tell you that we no longer need that orange wheelchair.  I wish I could let you throw your night splints in the trash!  I wish you didn't need medicines that can eventually harm your body.  I wish I could tell you this is the end of the road for this crazy journey.  I wish I could take away your pain, your fears, your heart aches and your tears.  I wish I could tell you that you will always walk.  I wish I could tell you that you will grow up to be that Texas Rangers player you dream to be.  I wish I could tell you that I found a cure.  I wish, oh how I wish, I could tell you I can fix you.

But...I can not.  I can not promise or tell you any of these things, so I won't.

I can tell you other things though and so I will.  To these, my sweet son, listen closely because they are the most important.  I can tell you that in this life, nothing is ever certain except for two things, my love for you and God's love for you.  Sweet son, there is no greater gift or promise than that of unconditional, everlasting love.  I can promise you that no matter what we endure or face here on earth, there is victory in Heaven.  I can promise you that when you feel alone, I will always be there and if for some reason I am not, God is.  He is always holding you, at times just your hand, sometimes carrying you and always gently holding and shielding your precious heart.  You may not realize it or understand it yet, but he has already used so many different ways and people this year to show you of his love and loyalty.  So many people are praying over you daily, my son.  People have been so good and gracious. Wether it be in thought, prayer, special trips, gifts, running races in your name, wearing your bracelet, wearing your shirt, sharing your story, fundraising for you or simple acts of random kindness, so many people truly care.  So many people love YOU!  To some, you are their hero!  To me, you are MY hero.  

I can promise that I'll never stop sharing your journey, your story.  I will strive each day to find the best care and make your life better in every way.  I promise you that I will never give up fighting for your dreams.  I will make sure that each dream you dream this year, we will find a way to make them come true.  I will take you to the statue of liberty.  I will get you on a horse.  We will go to Nascar, see the Texans and JJ Watt play and we will find a way to Ellen to tell your story.  One day, we will go to Germany.  These things, my son, I promise you.  I promise you that we will live each and every day to its fullest.  I promise you that we will have no regrets.  We will leap, we will fly and we will soar above the pain this year.  I promise you that each day I will get up, put on my armor and FIGHT!  I will make sure you know what love and happiness is.  I will teach you and you my son will continue to teach me. I promise to never take life for granted.  I promise you to hold you close every day and remind you of how special you are.  I promise to hold your hand, kiss your cheek and tell you I love you every single day.  I promise to carry you when you can no longer walk, to pick you up when you can no longer rise, to be your arms and to be your strength each time yours fails you.  I promise you that you will never see my pain, fear or tears over the loss and devastation of this disease.  I will encourage you daily.  I can tell you that this year, we will get you to Dr. Carsten Bonnemann.  I promise you this year we will find answers.  I promise you to never give up hope and to never stop looking for a way for improvements.  I promise you that this will be your year to shine bright.  I promise to make all aware of muscular dystrophy.  And son, I promise you that this year, you WILL play baseball.  

At such a young age, you have taught me so much.  I have learned how to love harder and bigger than ever before.  I have learned to smile through the pain.  I have learned that pain demands to be felt.  I have learned that we can live with pain.  I have learned that strength, real strength, is not a physical ability but rather something of the heart, mind and soul.  I have learned that our family is all that matters.  I have learned as long as you are ok, we are ok.  I have learned what a gentle soul truly looks like.  I have learned that life is so precious and things are not.  You have taught me all of these lessons through your journey, your story, your life.  Your heart is reflected in your eyes and sweet smile.   It is very true that the eyes are the windows to the soul, and your soul is nothing but pure and kind and full of joy.  You have so much love to give and so many hearts to touch and I will strive to make that happen for you.  You have taught me what love and forgiveness is.  You never give up on me even when I can't make it right, your trust in me is what keeps me going.  I know I don't always have the answers, Camden, but I have two arms to hold you tight and one heart to love you right.  When my heart is aching, the one thing that can always help is you.  To see you, hold you, hug you and see your smile, it brings me the one thing that others can'   In you I have true joy.  Thank you my son for that.

We all love you so much and your siblings adore you.  You are the best example of a big brother I could ever have dreamed of.  Your Daddy thinks you simply have hung the moon! :)  

We will get through this together and never let go of each other.  So let us grab hands, my love, and walk this journey together this year.  It is the Mac Pac versus the world!  Let us all make 2015 one full of new memories, adventures, laughs and endless amounts of love.  I can't promise you that it will ever be easy, but I can promise you it will always be worth it.  You see, your life is worth living no matter how hard it may be and with each new day we will give thanks for the blessing that you are.  Keep smiling my son and never lose that sweet spirit.  I love you.  

Forever yours,

Mom <3

A special thank you to my dear friend, Katie of Katie D Photography, for these wonderful images! <3

Sunday, July 6, 2014

Born to Fly... A Day At Airbus Helicopters

My husband, Matthew, was selected this past October for Warrant Officer to fly helicopters for the US Army.  Ever since then, our kids have been obsessed with helicopters and the fact that their Daddy was going to school soon to be a pilot and fly an Army helicopter for his career.  Our family was supposed to have left Fort Hood back in March to PCS to Fort Rucker for his flight school.  Little did we know the turn of events that would take place upon learning of Camden's disease this past January.  Everything got pushed back and put on hold while we have been fighting hard to figure things out medically and get a plan of care in place.  For now, we are set to move once again in December, so that Matthew can start schooling in January.  We have many big what ifs and decisions ahead as we find out more on Camden's medical condition and needs in August.  We pray that we can get the care we need at Fort Rucker so my husband can continue his dream, too.  If not, we are prepared to do what is best for Camden as he is our number one priority and his dreams are so much more right now.  This blog tonight is about amazing people once again taking the time to help make a dream of his come true.

Camden was given the opportunity a few weeks ago thanks to Matt & Lindsay Evans of Airbus Helicopters and a fellow photog friend, Lindsay Pierson, to take a tour of Airbus Helicopters in Dallas and then get to mark one more thing off his bucket list...


First they took the family on a tour of the facility and showed us how and where they make all different kinds of helicopters for people all over the world.  

After that, they had another surprised lined up for the kids as they lead us outside...  a fire truck to check out!!!  The kids loved it and enjoyed listening to the real life fireman and all he had to tell them about his job and his fire truck!  This one is very different from the normal ones you see and at first the kids called it a MONSTER TRUCK, haha. :)

Little did Camden know what was about to happen next...

He would fly in a helicopter with Pilot Matt Evans!  He was so excited and couldn't even believe what it!  Pilot Evans was so awesome with the boys and let them all go up, minus Mommy and Sofia who stayed back to watch and video the big event.  They got to fly over the Rangers Stadium, do a zero gravity drop and even Daddy McAlpine got to take a gander at flying for a few minutes!  

My boys weren't nervous or scared one bit and all were so excited and brave!  I was back there shaking.  More from the emotions of all that was being done and happening for our son.  We couldn't have been more blessed and grateful.  

It was nonstop talk about their ride afterwards and each kiddo was given their very own helicopter to take home!  We all went off to root for the Rangers afterwards with our newest friends, Lindsay and Lindsay.  Perfect ending to the perfect day! <3

Monday, June 16, 2014

Hope for the best. Prepare for the worst.

I can honestly say I have been attempting to sit down and write this blog entry for a while now.  Although I have a million thoughts and emotions constantly surging through my heart and mind right now, I have struggled with finding the words to accurately express my thoughts and feelings.  Maybe, because I myself, don't really know what they are.  These past few weeks I've felt incredibly raw and vulnerable.  I bought into something last month that I kept warning myself not to do, I grabbed onto false hope.  I knew if indeed it was proved wrong, I would be crushed.  I knew in my heart that it probably was an inaccurate life line we were reaching out so desperately for, but as any Mother of any sick child would do, I chose to ignore the brutal reality and reach for hope.  What was my hope?  For something treatable, fixable, reversible...  For this to be some horrible dream that we would just wake up from.  For those days that I look over at Camden while just sitting around the house relaxing, without an obstacle for him to endure, seeing that he physically looks ok and I don't SEE his disease..for those moments to be the reality.       

It has been a hard pill to swallow learning that at age 6, not only is Camden showing a large amount of muscle wasting at a rapid rate, but also signs of lung weakness and heart involvement.  I think I was finally in an area of acceptance with the muscle weakness and deterioration. Being that Camden can still walk right now, we haven't hit the parts of this disease that always loom in the my back of my mind each night before I fall asleep and immediately each morning when I wake up.  We have somewhat accepted the path he is now on with all the Dr appointments, labs, physical becomes routine life.   

For some reason, I found myself anxious about Camden's first appointment in Dallas but not worried.  I've always knew it in my heart that Camden had muscular dystrophy when we started this journey on Jan 3, 2014.  Although San Antonio failed us figuring out the genetic cause of it and denied him the help he needed then, using him as nothing more than an experimental pin cushion, I was comforted in knowing we were on the right path. After many days and hours spent on extensive research and networking, I was getting my baby to where he finally needed to be for REAL help.  I was ready for him to be thoroughly examined and I was even more ready to find out a clearer picture of Camden's medical prognosis.  

 Although I knew that lung and heart issues could arise with MD at a younger age, they didn't typically present themselves until the later stages of the disease, sometimes around age 10 but mostly in the early teen years.  Sometimes, there are cases that don't even have heart involvement.  These are typically patients that you hear about living into their 30s who have been blessed with little or no heart complications, that the ACE inhibitors prescribed helped maintain the function left or that just didn't present until later in life.  With all my networking I was hearing though of those rare cases, of those precious little ones who weren't lucky enough to be one of the later.  I was seeing young babies pass at the tender ages of 10, 6, 5...  What mother wouldn't immediately become frightened?  I remember in one of my phone calls with Camden's neurologist in San Antonio literally begging for him to recommend a cardiologist for Camden to be at least checked out to take the fear off my mind.  He played it down big time and assured me that even if Camden truly has Duchenne, the heart wasn't even looked into until age 10 and even so that was still very early to be worried about those issues.  At our second and last appointment with this same Doctor, after being told that he would re evaluate my son, he didn't even once place a hand on Camden to examine him. Bluntly, in front of us and Camden, we were told that he didn't recommend steroids no matter what the case was because the ONLY thing they did is keep a child walking longer.  Last but not least, the "good" doctor let us know (once again in front of Cam) that as of now all we could do was physical therapy and he was fine and stable and no matter what the final diagnosis, he was untreatable, incurable and management wouldn't ever change for him.  I sat in tears through most of this appointment, holding my son's hand the entire time, looking at him off and on reassuring him everything was ok.  I had never been more ready to take my child and bolt for the door and never look back.  That doctor and that place was NOT where my son should be or ever have been. They gave up on him.  They deprived us of what every child MUST have, hope.

So this brings us back to Dallas.  Even though I knew what was happening with Camden, I went in remaining hopeful.  Hopeful for better care, for help, of someone being able to finally tell us where we were at in all this and what we could do to make things better for him.  Part of their standard of care is a full work up.  This includes pulmonary functions testing, an ecg, being screened by a physical therapist, an occupational therapist and by a team of neurologists.  Dallas Children's spent four long hours thoroughly examining Camden.  I was diligent in preparing for this appointment so I was aware of most everything that would take place and was able to fully prepare Camden as well.  I've noticed he does much better when I can sit down and talk to him about what all is going to take place with each new medical "adventure" and even show him images of what things will look like.  What I was NOT prepared for was the low blow given to us by his new doctor, Dr. Innaccone, that he had an abnormal ecg and his lungs were weaker than they typically like to see at this age, functioning at 74%. 

In that moment I felt the life slip out of me.  I was not prepared for that.  It was rare.  He wasn't going to be one of those cases, remember?  It was all I could do to keep a strong face and not literally vomit on the floor beneath me.  I tried so hard focusing on the rest but all I wanted to do was take Camden in my arms and run from reality.  I wanted far away from the hospital.  I felt trapped in that tiny room, suffocating...  

She then informed us that they felt the biopsy needed to be done as soon as they could get it scheduled so we could see what indeed we were dealing with and how progressive his disease truly was.  We had been waiting too long to poke and prod any longer with blood tests when the biopsy could give us a clearer picture much quicker.  Dr. Innaccone explained to us that before she would consider putting him under again for surgery, he needed to be seen by a cardiologist and pulmonologist right away.  General anesthesia can lead to very serious complications with these diseases, especially if the heart and lungs are weak.  One of the things I remember feeling troubled about as well was the way she kept saying that Camden's progressive muscle wasting over such a short period of times (months mind you for some areas) was very unusual.  

I walked out of that building, through all the elevators, walkways and parking garages in a daze.  My body was doing what it needed to do but my mind and heart were a million miles away.  

His heart and lungs were in danger?  He was so progressive that it is puzzling to this world renowned neurologist that deals with neuromuscular diseases on a daily basis?  What did this mean for Camden?  What was in store for him?  How long would we truly have him???  I was sick.  Sick that this could be happening, that my baby could even be that rare case.  WHY?  His precious baby heart...  How DARE those doctors in San Antonio!  How dare they deny my pleas for a cardiologist!  How dare they ignore him for months and let him get so much weaker without an after thought...  

As much as that all pains me to think about, I've recently learned to let that battle go.  Fighting the what ifs and the idiots back in SA do not help my son.  Fighting for the right care and answers now are what he needs.  So we will, we will fight.  Just because we didn't get good news and things don't look great, does NOT mean my child is a lost cause and has lost this battle.  It does not mean I will sit back and let some disease take him over of any of us for that matter.  It hurts terribly and I have cried many a tear for Camden and will continue to along the way, but it is Camden's life at stake and his little body and heart that have to endure all of this.  I've been fighting my way back to hope for him.  Not false hope, not regular hope, but biblical hope.  HE deserves that and so much more than this!

Webster's definition of hope is a feeling of expectation and a desire for a certain thing to happen.  The biblical definition of hope is "confident expectation." Hope is a firm assurance regarding things that are unclear and unknown. Hope is a fundamental component of the life of the righteous. Without hope, life loses its meaning and in death there is no hope. The righteous who trust or put their hope in God will be helped, and they will not be confounded, put to shame, or disappointed. The righteous, who have this trustful hope in God, have a general confidence in God's protection and help and are free from fear and anxiety.

I will trust God in all this with my son because he is first and foremost God's son.  God loves Camden.  I truly believe that.  God knows, just like we do, how truly special our little boy is and he isn't even CLOSE to being done with him and neither is this world.  God will show us miracles through Camden.  Camden is a warrior.  Camden is a hero already.  Heros always save the day!

As we approach the upcoming cardiologist, pulmonary and biopsy dates in the next few weeks, I ask of you all to fight and pray with us.  I've prepared myself for what could happen and what we could be facing, but I remain hopeful for the best possible news for his disease.  Each day is a new day and each day is another day to pray for Camden, pray for a cure and fight like crazy to see the next day.  It is another day to smile and be thankful that Camden was chosen to be MY son.  God gave me the greatest blessing of all being his mother. 

I will leave you with a video and blog from Mitchell's Journey, the incredibly inspiring journey of a 10 year old boy who lost his battle last year to DMD due to heart failure.  This little boy and his family are an inspiration of love, courage and faith to me and many around the world.  In this video they learn the truth of Mitchell's heart deterioration caused by his disease.  This is one of the same things we will be facing June 26th.  As terrified as I am, I needed to see this video.  I needed to be prepared for the worse so I could hope for the best.  #teamcamden #camdenthestrong #fightasafamily #prayforacure

Mitchell's Journey:  Matters of the Heart -

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...