Monday, June 17, 2013

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.

Sunday, June 9, 2013

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.


I wrote this a month ago.

For the past couple weeks, I looked forward to meeting with the palliative care team to discuss pain management for Carter.  For almost a year, his pain has progressively gotten worse and GI function has waxed and waned.  Back and forth for months with GI and neurology making med changes and maxing out dosages.  The advice to continue with motrin and tylenol has become a joke and no longer works at all.  All benign forms of pain management exhausted and beginning to fail.  I expected to be given easy answers and an effective pain med.  My expectations unrealistic in all of my innocent ignorance.  I sat in the small room with Carter at my side and facing 2 doctors and a social worker as they all looked at us with concerned and caring eyes.  The ICU doctor explained to me that they looked through Carter’s medical records and his low GI function gives them concerns as far as pain meds, because all that is left, are Opiates.  Opiates will definitely help minimize pain, but will also add to Carter’s already slow and declining motility which can lead to worse constipation, poor intake and loss of weight.  This could potentially cut Carter’s already shorter life span in half.  If all testing and trial & error proves nothing or finds no fixes, we are left with the choice of quality of life over quantity.  Those ultimately, at one point or another in Carter’s life, will be our choices.  Mitochondrial Disease does not relent, it doesn’t vanish.  It can’t be outgrown or cured.  The reality is that is progresses; a reality that may already be in the works.  Doctors are baffled and confused as to why Carter’s pain is progressing and GI function is declining.  The only thing they understand is what history has proven; Mito sucks.  As I listened over the next hour and a half to the tests we can run and the steps we can take before making the big decision, I cried.  I cried and cried and cried.  I couldn’t push them back; my super hero cape folded and hidden in Carter’s backpack.  My courage and strength being tested at it’s full capacity.  I felt my heart cracking and threatening to shatter.  I looked at Carter’s face and he smiled at me.  He didn’t look scared or worried.  He was comforting me, even if he didn’t realize he was.  He was telling me he was okay.  I asked many questions, I’m sure many were irrational and silly. But I had to know what they thought.  Would Carter live a long life?  Would he be okay?  Would any of the possibly findings be fixable?  All of the answers were similar to what we have become accustomed to hearing over the last 4.5 years.  There is little to no fix and the chances of us outliving Carter are significant.  Significant?!  A word that can mean so much.  Carter has been a significant child; a miracle that has changed us and our entire family.  Carter came into this world like a burst of sunshine and energy.  It still kills us that life has turned out this way for our son.  5 years ago, I was only 8 weeks or so pregnant and dreaming of Carter’s future and all that we would teach him and share with him.  I looked forward to hearing his first words, throwing many birthday parties with his favorite themes, seeing him walk across a stage for graduation, marrying the love of his life and meeting my grandchildren someday.  All things that still pain me greatly when I think how different his life has turned out.  Those are all things we are and will be robbed of in Carter’s life.  Instead of making decisions on birthday themes and which friends to invite…we will be making decisions about pain management; quality of life or quantity.  What kinds of choices are those?!  It’s so unfair and devastating.  Once I got home, I finally found the strength to call and explain what we had been told to our closes family and friends.  Josh and I discussed our options and what the doctors said as much as we could both handle while we watched Carter fall asleep last night.  We both laid with him and kissed his innocent, sweet face as we both cried and mourned the changes that are coming.  We still hope that something will change and we can prolong these choices; hope we will always have.  We both agreed that we will do whatever we can for Carter; no matter how hard the choices are as long as it means his life is good.  For us, comfort and happiness are top priority, even if that means we have less years with Carter.  We would rather he has a few great years, than 10 painful, unbearable years.  Words that no parent should ever have to say or contemplate.  I wouldn’t change a second of Carter’s life and I have zero regrets.  He is the biggest and best miracle that has ever been so graciously put into my life.  And as his advocate and mother, I will make choices that are best for him even if it breaks every piece of my heart.  All of the crying left Josh and I exhausted last night and surprisingly, we slept hard.  We both feel stronger today.  We are ready to fight.  Phone calls have been made to Carter’s main doctors to find out where to go from here.  I am strong and ready to FIGHT!  I will never give up.