Monday, December 2, 2013

Poker face

There's something about Mondays that are motivating for me.  I might be the odd ball out, but I find myself at my prime first thing in the morning or of the week.  I can get 3 loads of laundry done, dish washer loaded and running, phone calls made, prescriptions refilled, baths done, house vacuumed and grocery shopping done before 1:00...but once that magic hour hits, my energy goes caplooey.  I wonder why?! haha  Once my "to do" list is checked off, I can breath easier and focus more clearly.  Sometimes I feel like I have short term memory loss like Dori and wonder how the heck I don't run out the door without shoes or my wallet (luckily it's second nature for the most part so doesn't require much thought).  I'm notorious for having to make lists and texting the wrong people several times a week.  The glorious life of a special needs mom (or as I'm sure most moms can relate).  The only down time I get in my day is when Carter is at school and my 2 year old is napping.  Ahh, the heavenly nap time!  On a good day, my calls are done before the magic hour and I can browse the web or watch HGTV uninterrupted.  I'm feeling particularly more clear minded today and I'm thinking it's mostly due to sleeping better last night. This whole change of medications thing is really taking it's toll.  Please remind me of this if we ever decide to change sleep meds again...that I will go sleep deprived for over a month!  I am so thankful for my wonderful husband who is a night owl, because he took over with Carter so that I could go to bed.  I even decided to shut the bedroom door to block out Carter's vocalizing, which I almost never do.  I still woke several times through the night (out of habit) to see if Carter ended up falling asleep or not.  Every time I had checked, he had not.  And as my luck goes, when my alarm clock went off to alert me that it was time to get Carter ready for school...I discovered that he had finally fallen asleep.  So instead of waking him, I decided to let him sleep and take him to school late.  It allowed me another hour of sleep and it was the best decision ever.  I even managed to get a shower and half way ready for the day before he woke up.  I dropped him off at school by noon and hit the grocery store with my toddler.  My "trick" that I started early in, was to NEVER allow my daughter to walk in the store...EVER!  I don't want her to know it's possible and I'm hoping she doesn't figure it out on her own for a very long time.  She was an angel for me, so I couldn't resist rewarding her with a bag of lollipops.  Those magical lollipops are my hopeful key to potty training over the month as well.  We are also going to start breaking her of her pacifier.  I must be totally insane.  But I suppose while we are already sleep deprived, why not start on all the difficult transitions at the same time, right?!  RIGHT?!

This past week was Thanksgiving and it didn't quite go as planned since Carter came down with a bad cold and fevers.  But we made the best of it.  This is our second winter living back in Michigan (Carter's second winter of his life) and like last year, he is sick frequently.  ER visits are biweekly and hospital admissions are rapidly increasing.  I've decided not to make anymore travel plans from the months of October to April anymore.  It's just not realistic in our lives.  Our family is learning to duck and dive pretty flawlessly these days.  Since we had planned for months to go to Pennsylvania for the holiday, we had no turkey, potatoes, casserole ingredients or anything.  We ended getting a precooked meal from Meijer.  Not my picturesque idea of a Thanksgiving dinner, but it sufficed due to the circumstances.  The kids didn't know the difference nor did they care and that is all that matters.

No matter how much planning that goes in to any event, activity or weekend, I have learned not to get my hopes up too high and to laugh despite the disappointment of unexpected changes.  It's the only way to get through the trials and tribulations in life.  My goal is to keep life as simple and happy as possible for my girls as they see their brother struggle.  If my girls can smile, laugh and live a good life even though my husband and I hurt and feel like crying some days than I feel like we have done something right.  We all know that there is no perfect instruction manuel to parenthood, especially when a child is born with disabilities.  It's not about the hand you are dealt, it's how you decide to play them.

My focus this week is on our excitement over getting Carter's new wheelchair (expected arrival on the 5th), Christmas plans, and trying to get Carter's sleep meds tweaked to "perfection".  One baby step at a time.  My husband also surprised me and took off a week of work starting next Wednesday!  Just keep swimming...just keep swimming!

Friday, November 15, 2013

A tearful day...

Today is one of those days when all I feel like doing is crying.  With good, there always comes bad it seems.  My heart is breaking for the changes that are happening.  Despite Carter's strides and improvements in development, his body is struggling with other changes too.  Over the last year, his pain and aggression has continued to progress.  He has been admitted three times in the past 2 months and doctors are at a loss.  Hearing that they don't know why these things are happening, have no further testing that can be done and treatment options have come to a screeching halt (well besides the things we feared).  All of the attempts at relief have failed.  Last resort is opiates, muscle relaxers and anxiety medicine.  On Sunday, Carter was admitted again to try and figure out what is causing his pain.  Palliative care, physical medicine & rehab and general pediatrics put their heads together to analyze his current medications to rule out the side effects and possibilities that one of them was causing the problems.  They lowered a medication that could possibly cause it and added Valium around the clock.  Because his thrashing and awful pain continued, they tried Lorotab.  It worked.  The dreaded opiates...they are working.  All this tells us is that he has pain (although we still don't know where or why), but this is also bad because opiates slow down the gastrointestinal tract (causing constipation) and for Carter, this could be detrimental for his already poor function.  If there is nothing left to do but pain medicine, this could mean cutting Carter's life span in half.  We have been faced time and time again with the choice of longevity vs. quality of life; we choose quality of life. A horrible, awful choice to have to make as a parent.  Why can't we have both with our sweet son?  Today was his follow up appointment with his pediatrician and I cried through the majority of the appointment.  Why can't one of the best hospitals in the country figure this out?  Why isn't there more we can do?  His pediatrician agreed that it was a good idea to travel to the Cleveland Clinic and see what they think.  They are the closest Mitochondrial Disease specialists and I feel it's worth a shot.  If opiates are all that can be done at this point for pain management and the best doctors agree, it's a choice that I will learn to deal with.  But I must know we are making the right decisions.  When I look back at the last 4.5 years, I realize how much I have changed.  For the first 2 years of Carter's life, I searched the country for a doctor that would tell me that nothing was wrong and Carter would be okay.  For the last 2 years, I have searched the country for a doctor who can tell me WHAT is wrong and how to help him be okay.  Throughout my journey to find these two different things, I have come to the same ending; no one really knows.  I think the combination of all the recent and progressive issues along with upcoming birthdays and holidays, my emotions are in over drive.  I want so badly for Carter to enjoy this festive time of year, as well as our family.  I am terrified that he won't or that he will be in the hospital a lot.  My son just can't get a break.  I can only describe my emotions right now as heart broken.

As I measure out Carter's night meds, I find myself overwhelmed by the changes.  A year and a half ago, I thought that 5 or 6 meds were a lot.  Now he gets 12.  Keeping up with the dosages, refills, and authorizations is a full time job in itself.  I am not only a mother, I am a nurse, pharmacist, insurance agent and advocate for my son.  Surprisingly, I don't cry very many days...I have found ways to stay strong and positive despite our challenges.  Today is one of the rare days where I feel weak and defeated.  I am overwhelmed.  As I am fighting this battle beside my son, I am struggling.  I want so bad to know that I am doing the right things and to be able to help him.  Doctors say that it's healthy to cry and break down.  I suppose it may be...
I know that tomorrow will be better and I will be stronger.  No matter how hard it can be, I have to be strong for my little boy who is fighting so hard.  In this crazy and tough life, being weak and sad just isn't an option.  I am very fortunate to have my dad who offered to come right over and help with the kids so that my husband and I could go out to dinner.  I feel bad every saying that I need breaks, but I would be lying if I said I didn't.  Just an hour out of the house to eat a peaceful dinner, was just what I needed.  Now I am going to administer Carter's night meds, cover my kids in kisses, paint my toenails and drink some hot cocoa before climbing in to bed.  These little things are what keep me going

Friday, October 25, 2013

Bare with me...

As summer quickly turns to fall and Carter's 5th birthday approaches, I find myself feeling that familiar excitement yet ache in my heart.  This last year has been one of the best Carter has ever had.  He broke barriers that doctors weren't sure he would ever break.  He has grown leaps and bounds!  I can't describe in adequate words what this year has meant to us.  4 years of hope and fighting just to see small strides and Carter gave us SO much more than that!  He proved to us that he is okay and he is underneath the silence.  As his mom, I have done everything in my power to be the best advocate I can for him.  Through it all, I hope that I am making choices that make him proud.  I hope that I am doing what is best.  On this journey with Mitochondrial Disease, there are no tour guides or clear language to help us through.  I don't believe we are in Holland or any somewhat familiar country...we are somewhere on a remote island where there's a very small population and where the paths are being newly travelled.  All we can do is hope. The last couple of weeks, my husband and I have both felt emotional beyond our normal.  It's not common that we both feel this way at the same time; we usually take turns.  But as we watch Carter recover from pneumonia and his first big boo (splitting his head open after a hefty fall and getting 2 staples), we can't help but feel raw and vincible.  Getting Carter's school pictures back after the huge battle to get him healthy enough to make it to picture day, was another big monumental moment.  His smile so bright and innocent.  The comparison of Carter's school picture from last year to this year is shocking!  He has gotten so big!  As I continue to see the loss of children from Mitochondrial Disease, I feel myself grieving for those families and the possibilities for our son.  As proud as I am of Carter, I am also afraid for another year of growth, because growth means his body requires more energy to which we aren't sure he is making enough of.
On Halloween, Carter has a genetics appointment and we are going to start more genetic testing but this time and for the first time, comparing variances to me and my husbands genes.  Of all the genes that have been looked at, every single one has been normal.  Normal...a word that doesn't have much room in our home.  Carter's life and ours is anything but "normal". Despite Carter's medical problems and apparent Mitochondrial defects, we can't find any genes that explain why.  The unknown is probably the hardest part of all of this.  We don't know what Carter's long term or prognosis look like.  As I have said many times before, we will never give up.  I try my hardest not to dwell on the what if's.  I'd like to think that I wouldn't be normal if I didn't worry about it though.  How can I not?  I want what every parent wants; to see my son grow up and be happy.  I want to see him go to prom and graduation someday.  I want to hear him speak words.  I wish I knew or had a guarantee that we will celebrate many more birthdays.

4 years into motherhood and I am beginning to have signs of aging or at least I feel like I am any way.  I was sure that there was something wrong with my heart.  I mean, how could my heart not be broken?  It must be, right?!  How can there not be a physical crack or arrhythmia from all the worry?  I have frequent palpitations, shortness of breath and fatigue.  But after several holter monitors, echoes, stress tests, cardiologists and blood draws, the third cardiologist has reassured me that it's not broken.  My heart is perfect and there are no defects or arrhythmias.  It's anxiety.  The doctor sat close to me as she explained that all my tests came back normal...again.  With every ounce of empathy and understanding, she told me that she isn't surprised that I have anxiety and symptoms of a heart defect.  My life is full of stress, questions, unknown and mountains bigger than most.  She didn't say I was crazy or a hyperchondriac.  She simply told me the reality.  My diagnosis?  I suffer from humanity.  I refuse to go on anxiety medication right now.  I like to believe that as long as I am reassured that my heart is okay and I am expected to live a long life as far as my heart is concerned, I can force myself to breath and continue to push forward.  I can do this.  I can do this.  I can do this.

As I brainstorm ideas for Carter's 5th birthday, I proceed with hope and courage.  And what better way to do that than to pay it forward?  The community has been so amazing as they support us and encourage us along this journey, so I want to do something to help others along theirs.  So instead of a typical birthday party since Carter's life is very much atypical, we are going to do a food and toy drive!  Instead of bringing birthday presents for Carter, I want to encourage the community to bring unwrapped items that Carter can donate to shelters, food pantries and toys for tots.  We will have a birthday cake, balloons, family and friends there...but want to give to others as a way to celebrate another year with our precious child.  What better way to thank the community than this?!

So as we continue to weather this unknown journey, please bare with us as we learn to navigate and adjust to the ongoing changes that we call life.

Sunday, October 13, 2013

It's not fair...

After a great summer with no illness or fevers, the time was only ticking away until the next one.  With fall comes bugs and germs that we fear.  2 weeks ago Carter came down with parainfluenza that turned into pneumonia and landed him in the hospital for a couple days.  It was his shortest hospital stay yet, thankfully.  But it also resulted in his first big boo boo!  The weakness contributed to poor balance and strength, so he fell fast and hard...and hit his head on the base of his toy box.  You would think after dealing with so much scary medical stuff, that a cut would be the least of things to cause me panic, but you would be surprised!  Getting the call from my husband that Carter had fallen and hit head really hard and was bleeding bad, was enough to throw me into a tizzy!  KayLeigh and I ran out of that Halloween store like felons!  Seeing the blood and Carter's painful face when I got home was heartbreaking.  We were already debating whether to return to the ER because he was throwing up and still having fevers, but the head injury sped things up!  Carter took the 2 staples like an absolute champ!  He didn't cry or even flinch.  It was much harder on me than him.

Along with the changing seasons and weather, also comes more scary reality for families like ours.  All children get sick; it's expected.  But when your child is medically fragile, illness has a entirely different meaning.  As I see the continual posts of another child who has lost their battle with Mitochondrial Disease, I feel my heart spirit sagging.  I feel the lidocaine wear off as the pain seeps in.  I feel my barriers crumbling at my feet.  All my strength depleting.  All the vitamins, seizure meds, supplements and GI meds can't save these children.  No amount of miles or searching can add days to their lives.  If only our tears and love could mend their broken cells.  If only...if only.  6 families are mourning the loss of their child in just the last 2 weeks.  6 children who fought so hard.  6 mothers, 6 fathers who have lost their babies.

As I watch my son fighting every single day to live, to grow, to learn...I just want to wrap him tightly in my arms where I can feel his heart beat, feel his warm body against mine.  I wish I could protect him from all the things that could go wrong.  I wish I could console the families who are heartbroken.  A cure can't come fast enough...

Tuesday, September 24, 2013

Simple choices aren't so simple

My mom came home to visit the first week of the month for Carter's Mitochondrial Disease walkathon and only planned to stay a week.  That week has turned into 3!  The day of the walkathon, my brother and his beautiful girlfriend shared their big news that they are expecting their first baby in March!  That one week plan turned into 2 when mom decided to stay for KayLeigh's 9th birthday party!  Then she decided to stay to help my brother paint a room in his basement for their guest bedroom so they can start working on the baby's nursery.  Throughout this 3 weeks, my mom has asked me to go back to Florida with her for a couple weeks until she comes back to Michigan for her 50th birthday.  A very tempting and exciting idea!  I would love to go down and see the beach, friends and sunshine...I really would love to.  At first, I was all for it and ready to start packing.  But then I came crashing back to reality.  To go on a vacation for 2 weeks means Carter missing 10 days of school.  10 days.  It also means that Lily would miss 2 out of 6 ballet classes that I already paid for and looked forward to for months.  I would have to reschedule 3 appointments and make a new one to get Carter cleared to travel.  I would be away from my husband for 14 days.  And most importantly, I would be taking a leap of faith with Carter's health.  Living in Pensacola for 3 years was brutal when it came to emergency medical care for Carter...the local hospital just isn't equipped to care for children with severe medical problems.  14 days of risk.  A risk that I am scared to death to take.

A week after we moved back to Michigan in March of 2012, Carter landed in ICU when his system crashed.  It is still unknown as to why this happened.  But one thing is for sure; I am terrified of this happening again.  If it had happened in Pensacola, I fear the thought of what could have happened.  We had made it home just in time to be near one of the best children's hospitals that was able to save his life.

To many people, rescheduling appointments or missing a couple ballet lessons is simple in the big picture.  A Florida vacation would trump it all and they would do it in a heart beat.  But these choices aren't so simple for me.  The reality is that I have a special needs child; a medically fragile son.  Traveling is a risk.  Trusting emergency departments is impossible.  Optimism lags behind realism.  One week away would be okay, but 2 weeks is too much.  I just can't do it.  Simple choices aren't so simple.  They just aren't.

So I have decided to wait until we can plan this vacation better and when my husband can come along.  My gut tells me that this is the right thing to do.  For some reason, the timing just isn't right.  One thing I have learned over the last 4.5 years is to trust my gut.

Monday, September 2, 2013

My therapy!

Being a stay at home mom isn't always easy. I don't have unlimited time to do the tasks and housework that I constantly take mental note of but never get a chance to cross off.  Growing up with a mom who mopped, vacuumed, made beds, did dishes, took the garbage out and tidied every single day...I was inevitably programmed to do the same thing.  I remember as a child and teenager always hearing my family tease me that I would grow up to be the worst housekeeper ever and that my home would be condemned.  I HATED doing my chores and my bedroom was a scary place.  I was yelled at on a daily basis to take my dirty dishes to the sink, put my laundry in the hamper and make my bed.  As I got older, I got better at hiding these things just to avoid it at all costs.  I can just picture my mom standing in the drive way as I pulled away with the last of my belongings and on my way to my first apartment at the young of 18 and instead of having tears streaming down her face, she probably did a happy dance until she lost her breath.  I'm pretty sure she had the blue colored walls covered that same day in a flowery wallpaper and fairy border.  She had that room turned into a guest room faster than I could unpack my car a few miles away.

But surprisingly I outgrew that phase of my life.  I am the epitome of what drove me nuts as a child.  I am compelled to do daily chores and every item has it's rightful place where it must always go.  The first 3 years of Carter's life, it was easy to maintain my house and I never struggled to stay on top of it all.  He was always such an easy baby and never made messes.  I remember wondering what all the other moms were talking about when they said they couldn't keep up with their house.  I even had time to sew, bake, run errands, mail letters, and call family often.  Then came Lily!  My little burst of energy child.  Even as a newborn baby, she was very demanding for my time.  I watched as dust bunnies collected in corners and dishes grew faster than I could keep up with.  I don't handle clutter or messes well; to the point that I can physically feel it's burden on my shoulders.  I despise a full laundry basket and cluttered counters.  I can't bare to see crumbs on the floor or unmade beds.  Finding the time to stay on top of these chores is becoming more and more difficult as my children get older and require more of my time.  With Carter standing and banging his head ALL the time, I am constantly redirecting him!  With Lily getting bored easily and needing me to entertain her or pick up after her nonstop, I can hardly find time to do anything else.

To top off my already very demanding schedule, we have had a VERY busy summer!  We visited family in Iowa, went to a Fun concert, had more appointments than I can remember, Carter's Make A Wish trip to California, birthday parties, the Color Run, 4th of July, Carter's summer school and much more!  We also lost a wonderful man this last week and my heart has been heavy.  This man was like a grandpa to me; he WAS a grandpa to me.  He was my God-mother's father (who also passed away 4 years ago).  Seeing him struggle so much this summer was heartbreaking.  His passing is a huge lost to everyone who knew him.

So as the summer catches up to me, I feel that overwhelming weight of all the things I need to catch up on.  I see the many tasks and projects around my house that need to be finished.  Today, my wonderful husband took the kids to my dads Labor Day cookout while I stayed home by myself to clean.  To me, there is no better therapy than this.  Seeing the progress and thinking of nothing else than what is at hand, is just what I needed right now.  In 4 hours, I was able to do 5 loads of laundry, vacuum, scrub the bathroom, clean all 3 bedrooms, mop the dining room and kitchen floors, organize paperwork, put laundry away, clean and organize the front porch, fold blankets, put toys away, organize shoes in the shoe rack, wipe down kitchen cupboard doors and appliances, unload dish washer, put away new medical supplies, dust the entire house, lysol all the furniture and even bleach the washer basin!  As each thing was checked off my internal memory list, I could feel the weight lifting.  I could feel my mind finding ease for the first time in weeks.  I needed this time to do nothing but work uninterrupted.

My husband is on his way home with the kids and I am soaking in the last few minutes of quiet and absolute clean.  I am able to miss them without feeling rushed or overwhelmed with what still needs to be done.  I know that cleaning and organizing may not be therapy for most, but I strongly encourage everyone to find that happy place and visit it as often as possible.  Even if you have to get a babysitter a few hours once a week just so you can submerge yourself in what brings you peace; it is important.  I believe it makes us better parents!  I know I needed this more than anything else I can possibly think of.  I can hear my husband unloading the kids as I type this and hear Lily saying "mommy!"  I can't wait to go down and grab her up.  I can't wait to hear about their day.  It's nice to not have anything on my mind or constant nagging reminders to do this and do that.


Tuesday, August 20, 2013

To my miracle man:

To my miracle man:

All my life, I knew I wanted to be a mommy.  I knew I wanted you even before I knew who you would be.  I imagined who you would become and what you would look like.  I dreamed of holding you in my arms and doing everything I could to give you the best life.  I couldn't imagine a life without my baby.  When you came in to this world, you were everything I ever wanted.  As I admired your tiny little fingers and tiny little toes, I couldn't remember what my life was ever like before you.  My life changed in every single way!  Your blue eyes are far more perfect than I ever dreamed they would be...your little nose and lips every ounce of amazing!  Although I have always had to wait and work for those glances and smiles, each and every one is everything I ever wanted.  I never expected that you would struggle or know what pain is.  I never dreamed that you would be examined and proclaimed anything but perfect.  As your life unfolded before us over time, we cried, we laughed and we grew with you.  I would never want to change you because to me, you are perfect.  I hope that you know that.  I hope that you know how much I love you.  I hope you understand that the only thing I would ever change if given the opportunity, is that you could be pain free and that those little things weren't so hard for you.  I would give anything to hear your voice and words to explain to me what you want, what you like and what you think.  I would give my left arm just to know what your favorite color is, your favorite song, your favorite place.  I would give my right leg to hear you say you love me.  I wish I knew where you hurt.  So many things that I wish for but understand is very difficult for you.  That is okay.  I understand you anyway.  I know you regardless of your silence.  As I watch you do things that doctors said you never would, I am so proud of you.  I am amazed by your strength and resilience every single day.  You change before my eyes from month to month and I continually learn new ways to care for you the best I can.  Although you are not inside any specific box and your diagnosis is still unclear; one thing to me is clear as ever...there is no label that can describe the miracle that you are.  Despite your challenges, you continue to smile, you continue to breath, wake up each morning and teach me to be patience.  Ahh patience, something I have never been good at.  You have taught me so many things and made me a better person!

To my sweet miracle, I love you with all my heart!

Friday, August 16, 2013

Of course...

Only 4 days until we fly across the country for Carter's Make a Wish trip!  The excitement in our house is tangible when you walk through the front door!  Suitcases are filling up and the only topic of conversation is San Diego.  If I could box it all up and keep these moments and memories in a shadow box or live video, I would.  I envy those families on TLC who have their own reality shows and can watch their big days over and over again whenever they want.  I wish that we could hire someone to video this entire trip.  I want to bottle it up and keep it forever.  I know I have already written about my fears and long list of "to do's" before we go, but I find myself overcoming my previous fears and developing new ones.  I worry about the little details that are still unknown.  Will Lily sleep in the hotel room with all of us sleeping inches away...she is the lightest sleeper I've ever seen and I thought I had that record!  Should I take Carter's wheelchair or just a double stroller?  Will I be a ball of nerves the entire trip that I want so badly to just enjoy?!  I know that all of these things will work out one way or another, whether I plan every single detail or just wing it.  I know that.  I just want so badly for every thing to be perfect.  This is a trip of a lifetime, right?!  How many more times in Carter's life will we be able to do a trip to this magnitude?  This isn't a luxury we have when deciding on going on a family vacation.  Not just financially, but because the idea of flying and deciding on all these things by ourselves would be too much.  If Make a Wish wasn't helping us with the planning and ADA details, I don't think we would be able to brave it alone.  We aren't taking this trip for granted for an instant.
To top it off, Carter isn't doing all that well this week.  He is refusing food and crying in pain.  He only took 8 ounces of formula today and I had to vent/empty the other tube feed because he was miserable.  This evening, he is refluxing even though he has no food in his stomach.  He went almost a week without a bowel movement so I have pushed miralax and milk of magnesia to very little avail.  In a desperate attempt to make sure he is okay, I have decided to take him to the emergency room tomorrow.  This way we can do a total work up to make sure he is okay.  I may be over worried, but this time, I don't care.  My mommy gut tells me that something is bothering him and I won't be able to relax and breath until doctors assure me that he is okay.  Out of all of my fears and unease, my biggest one is that Carter will be miserable or painful the entire trip.  This trip is for HIM!  I am terrified that something will go wrong, that we will end up in an ER in San Diego.  This trip is meant for getting away, leaving behind the medical struggles for 5 days; to just live.  When I stop and look at my reasoning, I could kick myself.  How can we leave behind all the medical mumbo jumbo?  That is impossible, no matter how hard we try.
My entire day was spent cleaning the house...mostly shampooing the living room carpet.  Carpet that has to be steam cleaned every other week to eliminate the medical smells.  I think the smell of Carter's Mito cocktail is permanently a smell everywhere I go; my van, the carpet, Carter's bedroom, my kitchen.  I'm sure most all Mito parents understand what I am talking about.  Once I finished shampooing the carpet, I began packing a suitcase with formula, G-tube extensions, bolus syringes, blue pads, diapers, extra G-tube button, and med syringes.  Then I went over in my mind 10 times, what things I will need in my carry on bag for the 5 hour flight.  While on our trip, every day will be filled with medical mumbo jumbo.  It is there, it is Carter's life line.  There is no running away from it.  I am okay with it, I really am.  I am just scared out of my mind that Carter won't have fun.  I am desperate to make sure he does.  I am in panic mode with only 4 days until we leave.
Maybe it is in my sleep deprived state of mind, but I could cry tonight.  If Make a Wish only had a magic fairy that could grant any wish in the universe, it would be that Carter could live pain free.  Just when things are going so perfect and Carter is thriving, progressing and doing so great...his GI function just won't get on board.  When I have asked his GI doctor what more we can do, she always tells me that we are doing everything we can and that this is going to be a battle throughout his life.  I just can't accept that.  Carter suffers from GI dysfunction every single day of his life.  Out of his 12-14 medications he gets a day, 6 of them are stomach/GI meds.  I have laid in bed, wide awake for hours for the past 2 weeks just going through all the things I wish I could control.  I lay awake in a tizzy; worried over so many things.  The light at the end of the tunnel right now, is San Diego.  I feel like it's so far away, yet so close.
I will do whatever it takes to make sure Carter has the time of his life.  I will sit in the ER all weekend, get no sleep and drive myself crazy just to make sure this happens.  Fight I will; yesterday, today, tomorrow and forever.

Thursday, August 8, 2013

My little man of steel

In a month, we will be walking to raise awareness about Mitochondrial Disease and funds for research in hopes to discover a cure.  That dreaded reality that I try my hardest to push away.  There is no cure.  As I update Carter's video that displays his life in a story format, I struggle seeing what all he has been through.  I have become a professional at taking one day at a time in regards to the disease that is tangled amongst his DNA...the boo boo that I cannot fix.  But watching that 19 minute video, reminds me that in 4.5 years, my little boy has fought so hard just to live.  Through every ache and every pain, he has smiled.  How that boy continues to smile, even when he is in the hospital, has been poked more times that we can remember, therapy after therapy, specialist after specialist, I am not quite sure.  He doesn't even cry or flinch when he has an IV put in or blood drawn for the hundredth time.  He is the toughest kid I've ever seen!  Many people tell me how strong I am.  They say that they don't think they could do what I do.  But I beg to differ!  What I do is simple.  I love my son.  I do what most parents would do; I walk beside my child and put up the toughest fight known to man kind.  I refuse to give up.  I refuse to accept that there is nothing doctors can do.  I will never settle for what those statistics say.  What keeps me strong?  That smile!  When Carter gives me that big, bright toothy smile, everything in our world shines!  When I hear his rolling, contagious giggles, I feel my shattered heart finding where all the pieces belong.  I am not the strong one, my son is.  It's his strength that holds me up.  When everyone thinks that I am what holds Carter up, it is a misunderstanding.  Carter is holding me up.  He teaches me so many things that I never imagined I would.  As I follow him through his therapies and procedures, he reminds me how tough he is.  He proves to me that super hero's do exist.  The impossible is possible.  
When everyone is asleep and it is dark, I peel off my coat of armor and allow my skin to breath.  This is when I sneak into Carter's room and stare at him as he breaths; wondering what he dreams about.  This is when he is the most relaxed and calm.  It's amazing to me to see his muscles soft and extended; something that he has no control of when he is awake.  Many nights, staring at him isn't enough and I climb into bed with him.  Holding him as he sleeps is probably one of my most favorite moments with Carter because it's just him and I.  I can put my cheek to his and inhale his familiar scent.  I can kiss his soft skin without him pushing me away unintentionally.  It's time that I can be selfish.  I can hold him as long as I want!  Raising Carter is not hard in the sense that many people think it is.  Of course, the emotional and physical part of taking care of a special needs child is hard.  But being a mom to this extraordinary child, is not hard.  I would carry Carter forever, drive to the sun and back to find whatever he needs, and have every hair pulled from my head just to keep Carter with me.

As the fight to find a cure continues, so does life.  I will keep drawing off of Carter's strength and loving him with all my heart!  I will hold on to that thing called hope, for as long as my heart beats.  We will fight hand in hand, step by step!

Wednesday, August 7, 2013

Preparations unlimited!

Only 14 days until we leave for Carter's Make a Wish trip!  It's coming up fast and there are so many preparations to be made!  I am scrambling to make sure we have all meds refilled and have been making list after list of all the things we cannot forget.  Most vacation lists consist of flip flops, sunscreen, bathing suits, shorts, ect.  Of course, our lists include those things too...well, one of my lists.  The other lists contain Carter's medical history and doctors numbers.  Another list has all of the medical supplies we can't be without and the last one is my "to do" list of things to have finished around the house before we leave.  I am probably a tad bit OCD when it comes to my house, but I don't like to go on vacation and come back to a mess.  I like to come back to a clean home that welcomes us as we come through the front door!  I'm feeling a little overwhelmed at the idea of packing for 5 people for such a huge trip!  The typical things that you pack for a trip are simple to replace once we get to our destination and are the least of my worries, but it's not easy to locate and obtain blue pads, Metabolic cocktails, Mic-key extensions, neocate formula...ahh, another big stresser.  How the heck am I supposed to pack 8-10 cans of formula?!  I haven't flown with Carter since his feeding tube was put in.  I never had to pack these things before, except when we have driven places which is simple in comparison.  I'm not entirely sure how it all works, but I'm thinking that we can each check a bag.  So I will pack the 3 kids and myself into one suitcase and pack another suitcase full of just medical supplies and formula.  Make a Wish assured us that we can take all of his medications on to the plane with us and the stewardess will put them up front in a refrigerator.  I can do this, I can do this, I can do this!  The trip itself will be amazing, I am sure of it!  But the packing and flying part is what scares me the most.  How will we entertain 3 kids on a 5 hour flight?!  I am most worried about Lily (who will be almost 21 months old).  She is a very active child who wants to do what she wants to do when she wants to do it.  I am so thankful that my husband will be there to help out!  In the 5 years that we have been married and over 10 times of flying with my older 2 children, he has never flown with us since his work schedule never allowed him the time off.  That brings me to another list I am working on; entertainment for the plane.  I am trying to keep our bags as light as possible, so deciding what things will be successful and enjoyable for 5 hours is actually very tricky.  So far, my definite ideas are the iPad, Nabi, coloring books, crayons, movies for the lap top, and mommy's phone!  Oh, the joys of modern technology!  Despite all the list making and preparing, I still anticipate monstrous melt downs and tantrums in the classic terrible 2 sense.  I am mentally preparing myself already!  I am taking myself to a happy place; sitting on the beach, watching my kids swim with dolphins, exploring the gigantic zoo and enjoying our peaceful family time.  We are going to try to forget all the medical mumbo jumbo for the 5 days and just enjoy Carter and his sisters.  Forget all of our worries back home and just live it up!  14 days!  Despite my long list of things to do to prepare, I KNOW it will be so worth every single bit!  And I can't stop saying how amazing Make a Wish is for all that they do for families like ours!  Without this granted wish, a vacation to this magnitude would not be possible for us!  I am so excited to go on adventure after adventure in such a beautiful city!  And to see my children smile and laugh as they see new things for the first time!  I know that this 5 day trip will fly by and soon be a blink of a memory with only pictures to remind us of how amazing it was.  I want the 14 days leading up to it, to go by slowly because I understand how fast time goes and how beautiful this trip will be.  I don't want to miss one second or stress over the lists I need to create.  I will look back at my pre-vacation stress and kick myself for ever worrying.  I want to embrace the moment.  This life can be tough, it can knock us down and take our breath away several times a day; but one thing is certain...this life is great despite the challenges.  Each of my children are so wonderful in their own ways and I wouldn't change a thing about them.  My son is so strong and determined to do all the things that we were worried he may never be able to do.  He is so absolutely beautiful in every way.  That little boy knows how to love and live; something many healthy people never learn to fully do.  My daughter, KayLeigh, is so thoughtful, creative and full of life!  She never hesitates to help out with her siblings or assist them when they struggle!  She has been right along side Carter through his battles encouraging him that he can do it and never fails to tell him how much she loves him.  That is something that can never be replaced or taught; that is just who she is.  My daughter, Lily, is the most rambunctious, motivated and strong willed baby's I have ever seen.  I can't imagine her ever letting anyone tell her what to do because she has ideas of her own.  She gets frustrated when her big brother knocks her down or pulls her hair, but she gets right back up, pats his back and gives him a toy.  She loves unconditionally and makes me so proud.  When I take her to Carter's classroom, she explores all of the medical equipment with wonder, not fear!  She enjoys saying "hi" to all of his classmates.  She doesn't see difference in the world; she only sees new things to learn and love.  I couldn't ask for more wonderful children and I am the luckiest momma in the world.  I can't wait for them to get to
San Diego and just have fun!  They deserve that more than anything in the world! 14 days!

Friday, July 26, 2013

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!

Friday, July 19, 2013

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!

Wednesday, July 17, 2013

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!

Monday, July 8, 2013

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!!!!!!

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.

Friday, April 19, 2013

Turning a new leaf

What a ride we have been on!  To even summarize what this past 4 years has been like is impossible to put into words.  4 years.  Looking back to Carter's birth, I can't believe it's only been 4 feels like so much longer than that.  I can't believe we got through what we did and survived it.  Not only did we survive, but we grew.  The old phrase that "what doesn't kill you, only makes you stronger" never felt so real until I arrived at this day.  If someone were to tell me one year ago today that so many things would change, I wouldn't have believed them.  If they told me that Carter would be scooting, pulling to his knees, eating food and thriving, I would have looked at them with tired eyes and hesitation.  We waited FOUR years to see Carter respond to his name.  We waited FOUR years to feel the warmth of his hugs and the squeeze of his hand as he grabs ours.  4 years.

With big changes comes new trials and tribulations.  Progress doesn't always mean perfection or cures.  It means that he is growing and developing, which are things I was unsure would ever happen.  So as I look at his future now, I have hope stronger than I ever did before.  I also proceed with caution as each day can change in an instant.  I prepare myself for more changes instead of fighting them.  I am more aggressive with each new symptom.  With change, there always comes troubles.  Life can never be perfect, that I will never expect.  With scooting also comes mischief and boo boo's.  Carter's new thing is banging his head.  Not just banging it softly, but aggressively and violently.  He will scoot to the hardest wall, furniture, or floor he can find.  We run to him each time he begins the banging and reroute or redirect him.  This only lasts a few minutes before he moved on to a new place to bang.  We hoped it would just be a quick phase and he would stop.  But 4 months later, he is only getting more creative.  We seen his physical medicine and rehabilitation doctor yesterday and we discussed this issue.  She prescribed a helmet for these difficult days.  Another piece of equipment.  Another change to our lives.  One more abnormal tidbit to our already atypical life.  But I am okay with this.  Would I have been okay with this a year  But I don't get to choose how life works out, nor can I reason with my son.  So instead of hoping things will change because I will them to; I will accept it and do what needs to be done.  Because of this new behavioral change, we need to order a new wheelchair as well.  The one he has now was ordered when he was 2 with no idea what his needs would be when he really needed the wheelchair.  It is in no way safe for him when he rocks or bangs his head.  It also doesn't recline at all to allow more support when he is sick and unable to support his head as well.

I approach this new chapter and turning of a leaf in stride and my head held high.  Not because I am at terms with all of these things, but because I know we will be okay.  I know that Carter will continue to grow and change.  I will always hope for bigger things.  I will never give up or become complacent.  No matter how hard the choices are or become, I will do what I have to for him.  I will hide my tears when the times are tough.  I will be selfless when I feel like being the most selfish.  I will hug him tight when he pushes me away.  I will relish in the smiles and giggles to hold me over for the days when they are lost.  I will take pictures of all the moments, even if they are painful to look at later.  Because no matter what battles we walk into, I am always his mommy and all of those moments are what his precious life is all about.  I am his support and comfort when nothing else works.  There is nothing else to do but be strong.  I believe in the power of positive thinking.  I choose to surround myself with supportive, positive people and have learned to lean on them for support.  I am no stronger than the next person, but I have learned to love and grow with the life I have been given.  We will learn to love his new helmet and wheelchair because they will be important to Carter's quality of life.  He will rock them like the superstar he is!