5 Years Strong!

It was a whirlwind relationship and many people thought we were moving way too fast!  From the day we met, we were inseparable and in love!  I was young and enthusiastic about all things in life, especially marriage and starting a family.  We both wanted all the same things of life.  Before I even moved in, Josh renovated the extra bedroom in his house into a huge walk-in closet just for me.  He went above and beyond to check off all the things I said I always wanted, big and small.  Though almost everything in our new relationship was beautiful and perfect, we also went through some not-so-pretty things.  Only a few months into our relationship, I had my tonsils removed.  He was right there beside me as I went in and came out of surgery with a big bouquet of flowers.  He endured 2 awful weeks of me crying in pain and needing home IV's.  As soon as I recovered, in March of 2008, he took me to a fancy dinner where he asked me to be his wife, Chef Craig Common, staff and all.  We planned to get married the following summer, 2009.  But as we all know, another little surprise slipped into our lives shortly after we were engaged!  In May of 2008, we discovered we were expecting our first baby. A week or so earlier, I had found and ordered the perfect wedding dress in a size 4.  After lots of discussion and excitement, we decided to bump the wedding up to July 26th, 2008.  That big day came fast, but we were ready!  I still remember coming around the corner and catching sight of my handsome fiance at the bottom of the hill, waiting for me.  I had to push back tears and remind myself that it was already risky enough that I was wearing heels in grass without my eyes being glossed over in tears.  I grabbed on tight to my brothers arm as we made our way closer and closer to my future.  Hearing and repeating those vows meant so much more to me than the traditional value behind them; they became tattooed to my soul.  For richer or poorer, sickness and in health...

Here we are, 5 years later and stronger!  3 children, 3 years in Florida, up's, down's, bills, sickness and health...we are still here, tall, proud and strong.  We are more in love now, then even that day 5 years ago!  We have been through things that most marriages never endure.  We have gotten through those times by finding the positive and smiling despite the pain.  We have learned more than we ever imagined we would, but we have done every single bit of it together.  We battle this thing called "life", hand in hand.  I wouldn't change a thing!  I look forward to 70 more years together and I love you with all my heart, Josh!  Here's to many more, my love! Cheers!

Ganglias, ventricles, say what?!

My day couldn't have started out any better yesterday!  When I logged in to Facebook while drinking my morning coffee, I was thrilled to see a post from a friend that she seen Carter on the front page of the newspaper!  Our little hero made the front page again and it is a beautiful article!  I was on top of the world and nothing could shake me.  But soon, Carter was getting home from school and we had to head to his 6 month follow up with his neurologist.  Things have been going so well lately, that I couldn't think of much to say at his appointment besides, "well, for once, all is well and I'm not here in a ball of tears".  She was very happy to hear about all of Carter's progress and stability.  Half way through his appointment, she explained to me again how he has a lot of dystonia and that with the type he has, it's usually caused by some sort of damage to the front area of the brain where nerves are controlled.  She said it is common in children with Mitochondrial Disease.  She then proceeded to ask me if he has any issues with his ganglia's and ventricles.  I said that I know there are issues with his white matter and ventricles but I wasn't sure about the ganglia's.  I reminded her that he had recently had a brain MRI so there should be very new and accurate results.  She pulled it up on the computer and began reading where the issues are but reassured me that the scan was stable.  She clicked on the images to show me where the areas of concern are and what it means.  I had heard the terms many times over the years but had no idea where or what it meant.  She scrolled through his brain very much like I did on the computer reading Carter's article earlier that day.  She showed me where there is enlargement and abnormalities with his ganglia's.  She told me the anatomy of his brain is perfect, but in the middle of his brain, where all those confusing terms are, had some mild damage.  Mild damage that is irreparable and has everything to do with Carter's struggles.  I asked her the question that we have wondered about for years...could this damage have been caused during his birth?  Her answer astounded me and threw me off balance.  She replied, "yes it could.  When we see damage caused during births, this is what we usually see".  No one had told me that before.  I had never asked.  I have always been so afraid and devastated to think that maybe something had went wrong that could have been prevented.  My OBGYN never made it to his delivery because of miscommunication and a nurse delivered Carter.  The doctor only checked on me twice and very briefly during labor.  I remember his heart rate dipping as I progressed so quickly and pushing for a good 20 minutes or so.  When he was born, he struggled to cry and was very purple.  The nursery team swept him away from me only a minute or so after he was born, to get him breathing better.  He spent the first day in the NICU to make sure they got all the fluid out of his lungs and he was breathing well on his own.  That whole day is a blur in my memory.  It was a day that I thought was perfect and normal.  What if something could have been prevented?  What if that day and one mistake changed the rest of Carter's life?  I'm struggling with the possibilities.  Carter is finally progressing at 4.5 years old, but he will always struggle and have to fight so hard to do things that are normally easy for others.  We still don't know what his future holds or whether he will ever be able to communicate.  Things that have been robbed of him.  Things that no child should ever have to go through.  Over the years, doctors have always reassured me that I did nothing wrong and there's no way I could have prevented or changed the outcome for Carter.  I have found peace in those words.  His Mitochondrial Disease is a part of his make up, something that was inevitable from the moment he was a tiny ball of cells.  But could he have been functional and only had mild symptoms of his disease had his brain never been compromised due to something during delivery?  This now haunts me and scares me.  I'm not really sure what to do at this moment as far as asking more questions or finding out what the chances are that this is what happened. I'm not sure I'm ready to know the answers to this.  I've been safe inside this little bubble I have created and I have found strength and peace along the way.  We will let this new news sink in and process.  The strength with build and my fire to fight will grow.  I will get there.  But for now, I am going to keep looking at his newspaper article titled "Little boy, big miracles" and smile.  Those words are so perfect to describe our little warrior.  No matter why or what caused his medical problems and struggles, he is the epitome of those words.  He is a miracle despite what those medical terms mean.

 Carter made the front page!

Carter is walking video!

Dreams coming true!

It's been a week since our little victor began taking consistent steps!  Seeing him only hold on with one hand as he balances and takes steps, is a miracle!  I still watch him in amazement and awe; somewhat still in shock that he is really doing this!  He is responding more and more to simple commands and his eye contact is improving.  When our local newspaper heard about this break through, they quickly asked if they could do an update article on him, to which we excitedly accepted!

Our local newspaper came to our house yesterday to ask questions and take pictures of Carter.  When my husband and I were getting ready for Carter's big interview, we talked about how we never thought we would have a child who would have the newspaper coming to our home to do an article on.  We were never sure whether Carter would ever overcome his obstacles.  I always dreamed of being a mother, then I dreamed of my son meeting milestones and now my dreams are to see Carter to grow up!  So many unexpected miracles in our lives.  I wouldn't trade this life for anything.  Sure, there are sides to this life that are heartbreaking and devastating.  Of course, I wish that Carter's life could be easier and pain free.  But each struggle humbles us and reminds us how precious life is.  To share these up's and down's with the "world", gives Carter's incurable disease some sort of purpose, if you will.  I know that when I hear other families stories as they go through similar journey's, it gives me a hope and feeling of support.  We are not alone.  To see people reaching out to us, even those who have never been through this journey, touches us beyond words.  Even people who have never met Carter, are sharing how touched they are by his story and this is remarkable!  Times are changing so much and I am so happy that Carter can help make these changes.  People are viewing disabilities with acceptance and empathy.  People are asking more questions so that they can understand what this disease means.  I couldn't ask for anything more!

Yesterday, we also received a tube in the mail that has a beautiful story and letter to Carter that officially grants him a wish from Make a Wish!  We will be flying to San Diego in a little over a month and we are so excited!  Yet another thing that we never thought would be a part of our lives.  For a while, I was torn between being sad and excited about this wish.  It's hard to explain the emotions that are involved in deciding on a once in a lifetime wish for our sick child who cannot speak or say what he wants.  I don't see anything wrong with him; he is my perfect, beautiful child, so hearing that he has a life threatening and degenerative disease again and again still brings me to my knees.  Saying out loud that we are going on a Make a Wish trip, still brings me a tinge of pain.  Don't get me wrong, we are so appreciative and excited!  Let's just say, there are so many dreams coming true for our family and my biggest dream right now is that these big moments keeping flooding our home!

I know that Carter's birthday is still 6 months away, but I am already thinking of plans and a theme!  Oh and how can I forget?!  We will be throwing that walking party soon!  We hope by the end of the summer, we can get our close family and friends together to celebrate Carter's HUGE milestones!  I mean, this is something to celebrate!  4.5 years of fighting is finally paying off and Carter is breaking free of his chains!  This has been the best summer ever!

With all of the support and outpouring of love for our son, it truly keeps me strong and motivated to keep fighting! I want to thank each and every one of you for reading my blog and cheering Carter on through this tough battle!

Carter's WALKING!

Words can't describe the emotions we are feeling.  4 and a half years of waiting, waiting, waiting and waiting so patiently to see all those special firsts and big milestones from my first child.  4 and half years of blood, sweat and tears...many, many, many days of therapy, appointments, med changes, hospital stays, up's, down's and everything in between and the big day has come!  Carter is walking!  Something many doctors told us they didn't think he would ever do.  Those dreaded words of maybe, not sure and probably not.  Carter has proved them wrong!  He has other plans and has done everything in the order he should, just 4 years later!  Less than a year ago, he learned to get himself to sitting and ever since, he has been fighting the biggest fight of his life!  I've never seen a child so strong and so determined as this miracle and hero that I am so lucky to call my son!  We have all stood by on the edge of our seats as we struggled and cried to see him try so hard.  Milestones that most children learn early in life and without much effort.  For Carter, these feats have taken every ounce of his low supply of energy and every bit of control!  Despite his dytonia and Cerebral Palsy, he is breaking through!  He's showing his Mito who is boss!

As I sit here trying to construct the words to express the happiness we feel, I can't find adequate words. All I can say is that the hope I have always had, is shining as bright as the sun!  I don't doubt that Carter will keep progressing and become a highly functional child.  I don't feel as afraid anymore.  Of course, the fear of what could possibly happen or change looms above our heads...but for now, I am brushing it away.  I just want to bask in the glory of this long awaited and beautiful day!  Today is a day that will celebrated all the years ahead!  July 8th...the day our son took full steps and WALKED!  I will grasp each day and hold on tight!  We have fought this fight right along side of him, we have willed every ounce of our strength hoping and hoping we would see this day!

CARTER IS WALKING!!!!!  I want to shout it at the top of the highest mountain!  Words I wasn't sure I would ever say...CARTER IS WALKING!  CARTER IS WALKING!!!!!!

Never gets easier

As I walk through this journey that continually changes, so do my emotions and day to day life.  There is no preparation plan for tomorrow.  I tackle each day one minute at a time.  On days that I don't plan to do anything, I still find myself doing a thousand things.  A mother's job is never done.  No matter how hard to I try to keep up with the house, the kids, the calendar, errands and family...there is always something else that needs done.  When a new month comes, I check the calendar for big days; by the end of the first week, it quickly fills with appointments and important dates.  Down days and date nights are hard to come by.  I'm sure many people on the outside looking in, think that being a stay at home mom is easy.  They probably imagine me sitting on the couch, watching soap operas and eating bon bon's.  That is hilariously wrong.  Nap time usually consists of laundry, phone calls, and tidying.  

Recently, I find myself forgetting things that I don't normally forget.  I find myself going to the wrong places for field trips, outings and errands.  I don't hear people say my name or asking questions.  I think my brain is officially maxed out; at least that is my explanation.  In a perfect world, I could hire help or an assistant to help me keep up with everything.  Who knows if there's a medical explanation for this new phase in my life, but who has time?!  I have to force myself to focus and stay on task.  I find myself feeling stressed and overwhelmed easily; things I don't ever want to be.  I don't want to get frustrated and irritable over the little things.  Although this summer is full of huge adventures and exciting vacations, it has still been stressful.  There are at least 2 appointments at Mott Children's Hospital every week for the next 2 months and has been for the last month.  Lots of new specialists and upcoming tests.  Lots of new medical terminology and equipment.  I am developing medical problems of my own that force me to pause life and take care of myself; something that isn't easy for me.  

As other people celebrate their child passing another grade and preparing for the next, I find myself celebrating much different milestones and preparing for entirely different goals.  Just today, I took Carter for measurements of his head for a protection helmet and spinal support.  I find it difficult to choose colors that would look good for these new pieces of equipment.  How do you choose "good" colors for a helmet?!  This Thursday, we meet with the DME company to look at new wheelchairs, potty chairs, feeding chairs, car seat, and walker.  Lately as Carter progresses, so does the need for medical equipment to accommodate his changes.  I still get angry and sad when I plan for these things because they aren't things I wished for Carter's life.  I still wish that I could heal him and make his world okay in every way.  I still hold onto hope that it will be some day.  How do I explain to other people that these things weigh heavily on my mind every single day?  This last couple weeks has been especially tough and I can't completely pin point it's origin.  All I know is that I can't keep up with everything life requires of me.  The other day, as I sat at a red light and a song played that made me think of all the unexpected challenges in my life, I was ripped back to reality by the car honking behind me to go as the light turned green.  I wonder if other moms who are walking this familiar journey do the same thing?  Is it just me?  

When I sat down in the waiting room of the lab this morning, I quickly noticed another family across the room who had a son with special needs.  His mother looked at me with an understanding smile.  A smile that brought me a peace and comfort for the first time in a long time.  She nodded her head in an unspoken understanding.  Her journey travelled much longer than my own as her son was probably around 20 years old.  She kept reassuring him that he wouldn't have to wait much longer and he admired his favorite DVD's as he patiently waited in his wheelchair.  I couldn't help but glance in their direction several times while we waited too.  Although I didn't know their names or all the things they have been through, I knew them.  I felt for them.  They are me in another 15 years; if I am the luckiest mom in the world.  I hope to have my Carter still and to be that mom who sends comforting smiles to a young mom across the room who is only in the early stages.  I hope to still be a mom who can hold her child and reassure him that things will be okay.  I don't care how hard it is or what new struggles come our way...even if my mind gets a little crazy sometimes.  I will keep fighting and enduring this pain and struggle just to have him with us.  

But to my friends and family, please bear with me during this tough time.  Please understand that there are no words that make it okay.  I'm not asking for a quick fix or reassurance.  I know most people don't understand what I am going through and I don't expect them to.  I just ask that even though others don't quite "get it" that they look past my doozies.  Forgive me for not remembering everything or not answering a question right away.  I will get past this again, like I have many times before.  Once it passes, I fully expect it to happen again.  This life never gets easier.

HUGE changes!

Just a month ago, we feared the worst and we were facing some really tough decisions.  But something has changed and changed HUGE!  

Over the last month, Carter has tried and tried to pull to standing with support of the couch.  And slowly over this last week, he has succeeded!  A sight we weren't sure we would ever see in Carter's lifetime.  One year ago from now, Carter was limited to sitting with assistance.  He wasn't able to get himself to sitting or explore his surroundings.  Today, he is very much mobile, alert and attentive to his environment!  Seeing Carter pull up to standing and even bending forward to pick up a stuffed animal or blanket and standing BACK UP, is AMAZING!  I find it hard to articulate words wonderful enough to describe how this has made my husband and I feel.  

Ever since Carter's first palliative care meeting a month ago, he has changed!  He was listening in that meeting and he heard all the horrible, sad things said about his potential. He seen me cry and sob in grief at the possibilities.  I think he realized what his actions were causing because he is different; he is HAPPY and less fussy!  He smiles and laughs majority of the day!  Yesterday, we even ventured out to the grocery store as a family to see how well he would do.  He did great and only had mild moments of being over stimulated, BUT he did great!  

To many, these things probably don't seem like a big deal, but for our family it is life changing.  My biggest hope is that these changes last!  I hope that his new pain medicine will sit in the cupboard and collect dust.  I hope that we can enjoy this summer with little limitations and many big adventures; Carter included in all of it!  I hope that my husband and I can drop the shifts and start doing everything as a family unit.  

This last year has proven to have many changes; many good and many scary.  But we see light at the end of the tunnel and just hope that the walls don't come barreling in on us.  But even if those walls do, at least we have a jack hammer on board to blast our way through again.  There is still a lot of testing and appointments coming up which I anticipate will be the case throughout Carter's life.  We have some ideas that may help Carter's quality of life as well as longevity and I am ready to conquer them at full speed.  I am ready to tackle this next chapter in our lives.  

Life is a roller coaster.  It will never be easy and if it is, you aren't really living.  I am happy today and that is what matters.  I will handle tomorrow in whatever manner is necessary.  But for today, I am happy and content.  I am not taking these good days for granted and am taking full advantage of the snuggles and smiles.  These are the sunny days that I want to remember way in the future when my skies are gray.