Happy 5th Birthday, Carter

5 years ago today, a hero was born.  Actually, in one hour and 6 minutes from now, to be exact.  At the time, we didn't realize that we would be mom and dad to a little boy who would one day wear a super hero cape and have endured things in his life, that most children never do.  We had no idea that he would be splashed across front pages of papers, articles on Yahoo or in the national archives and newspapers across the country.  We never knew that therapists, teachers, doctors and nurses would become our saving graces.  People that we least expected to be huge in our lives, appeared.  We have learned so many things about life, that we never dreamed possible.  We learned to take every baby step with caution and pride.  We appreciate the simple things in life and cherish every single day with this child who has blessed our life.  As hard as it is to believe that he has been with us for 5 years already, it's also just as hard to believe how much he has been through in those years.  A lifetime of memories squeezed into moments.  I've lost count of the needle pokes, hospital admissions, appointments, tests, trials and errors. But one thing is for sure, Carter is a fighter!  I am so proud of his for all that he has accomplished, over come and for smiling through all of his trials.

Over the weekend, we celebrated his birthday with close family and friends!  The show of people who love and support Carter, was amazing!  Our house was full of love!  We are always cautious of having too many people around at one time since Carter gets so overwhelmed these days, but yet again, he surprised us!  He did great and enjoyed all of the attention.  

As we start Carter's 6th year of life, my biggest hope is that it is even better than the last and that we can spend the next year surrounded by all the same wonderful friends and family.  Rock on, my little super star!  We love you to the moon and back!  Happy 5th Birthday, Carter!

Unconditional Love

For over a year, I have thought about the idea of a new tattoo.  A tattoo to signify my unconditional love for each of my children.  This is something that I wouldn't do on impulse or a whim and wanted to make sure it was absolutely perfect.  I googled thousands of images for ideas over the months.  I debated whether to get an awareness ribbon for Carter or not because Mitochondrial Disease isn't what defines him.  I also knew I wanted initials for each of my children.  While laying in bed a few weeks ago, it came to me.  I knew what I wanted.  Our family is all about music and it has become an iconic symbol for all Carter's fundraisers for research and I find myself doodling them on notes I make or grocery lists.  I was ready to schedule an appointment and have it sketched out!  And what better present for my 28th birthday!  My husband wasn't entirely on board with the idea but he knew that after months and months of talking about it, that I had made up my mind.  When I called to make the appointment, I was told that the man I requested was booked out until the end of the month, but WAIT...he had a last minute cancellation for the following evening. Without hesitation, I took it.  I was so excited, I could barely stand it and was so thankful that I wouldn't have to wait too long.  The tattoo artist drew up exactly what I wanted and even more!  Seeing it drawn out with all of the details I wanted, was surreal!  It was a piece of art that I would have on my body for the rest of my life and I couldn't imagine anything more perfect.  I decided to go ahead with the awareness ribbon because the way that the artist drew it up, it looks as though the bar of music is shooting out of the ribbon.  Carter fills our life with joy and happiness so this carries significant meaning for me.  My husband asked me if I was nervous and my answer was easy, "no." I was ready to get it done!  It took about 45 minutes, but the pain wasn't bad and before I knew it, it was time to look at it in the mirror!  Perfect.  No other words for it than that.  The hibiscus flower that I added it to needs some revamping (is 9 years old), but I will do it sometime this year.  For now, I am just so so happy with my unconditional love tattoo!  And as if it couldn't get any better, my husband absolutely loves it too!  He is thinking about getting one similar so that we have matching art!

My imperfect world is so perfect to me

On a regular basis, I hear comments along the lines of "I don't know how you do it" or "I couldn't do what you do".  Comments that all special needs parents hear a thousand times.  Phrases that I was guilty of saying before I had my sweet Carter.  I was also a person who always said, "I just want a healthy baby and that's all I care about".  Oh the ignorance and naivety of those words.  Of course every parent wants a healthy baby. Of course every human wants life to go in the order that it's naturally intended. But in the real world, life doesn't always work out like that.  As a parent to a child who is not just chronically ill, but is ALWAYS ill, I live the life that millions think they never will or hope they won't.  You never hear people say, "I will still be happy if my child is born with something that may not be considered perfect" or "I will be okay even if my child has medical problems".  I think people worry that if they say those things out loud, that they will "jinx" themselves with an unhealthy child or that they will be judged for every considering the idea of not birthing a healthy baby.  In the world we live in, everyone strives to have perfect things, perfect jobs, perfect spouses, and the perfect children.  As if their entire lives will be summed up by those things.  It's really such a sad world that we live in because this is the mentality that the majority of people live in.  Even if my life hasn't turned out the way I ever expected or planned for, it is perfect to me.  I am not special or stronger than others.  I am not a supernatural human who can handle anything that life throws at me.  4 years ago, if you asked me about Carter and the things that make him "different", I would have broke into tears and been deeply offended.  If someone asked me if he was meeting milestones, I would have lied and said he wasn't feeling well so not up to par.  I remember walking through the grocery store and having complete strangers approach me to say "your baby looks SO tired, poor baby".  I was a mommy who seen nothing but perfection in my tiny baby.  I didn't understand what others seen.  Of course, I KNEW that something wasn't quite right but I grasped on to the idea that he was just delayed and would catch up on his own time.  I was immune to the constant spit up and wobbly muscle movements.  Throughout most of my pregnancy with Carter, I was part of an online mom group.  After our babies were born, we had several meet-up's where we were all in one place with our babies who are all within a month of each other in age.  Those were the times that I felt reality crash down around me as the gap in milestones was unavoidable.  I wanted to scoop my baby up and run away.  I wanted to keep Carter in a bubble away from the harsh world. I didn't want him judged or scored on a chart of "normal" development.  I wanted to go about my life only seeing Carter as what he was; perfect.  For the first 2 years of Carter's life, I would post hundreds of pictures of him doing "typical" things.  I was great at covering up my fears or Carter's struggles.  I posted pictures of him standing, playing, sitting, and smiling.  I wasn't ready for the world to diagnose my baby.

Getting to the place I am in now where I am okay talking about Carter's medical problems and our journey did not happen over night. It wasn't something I was ready to do 4 years ago.  The biggest struggle I had through Carter's life, was letting go of all the things I had hoped for him.  I had to forget all the ideas I had for his life.  When I finally learned to let go, I could finally learn to embrace and love what he IS.

 http://youtu.be/t6eNp1vCsuU

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!

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

...

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.

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 crack...my 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...