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...

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.

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.

Goodnight!