Monday, August 18, 2014

Reality isn't always ideal...

As our family is growing, we are also outgrowing our house.  But like many families in our situation, it is difficult to sell our house and get a new mortgage to accommodate our needs, at this time.  I am grateful for the years of experience and growth to get us through this obstacle.  Nothing in the last 5.5 years has been by the book or as planned.  As our journey has progressed, we have learned to make pavement out of gravel and to see flowers in a field of weeds.  So as we look around our house at all the things that just aren't working anymore, we are brainstorming ways to make the best of it.  Last week, a friend of ours showed up at our door and started tearing the wall apart in our kitchen to bring the plumbing and electrical up from the basement so that we could move our washer and dryer to the main level.  A wish on my long list for many years.  He made it happen and happen it did!  Laundry was a mountainous task for me each week, because I don't just have a Sunday laundry day…I do laundry daily.  Carter's clothes must be changed many times a day and so do his blankets that get soiled quickly.  I was climbing two stories every time I did laundry.  This huge change fueled us to keep going.  Stairs have become the worst feature in our home.  Our only bathroom is on the second floor as well as all of the bedrooms, so no matter how we refigure our house, we have to carry Carter upstairs for baths.  As lovely as his hospital bed is, it also became an issue quickly once he learned to pull to stand and bang his head on hard things.  We had the DME company add padding to the panels of his bed, but it's too thin for the type of rocking and head banging our little hercules does.  So we have had Carter sleeping on the couch or padding on the floor in our living room for quite some time now.  And my husband has been sleeping on the long end of the couch to be near Carter, in case he refluxes or struggles.  If the hospital bed is in the dining room, we can use it for changing Carter and he can sleep in it once he is fast asleep.  We have thought about all different ways we could add on to our house or turn certain areas in to something else, but we have finally caved in and decided…no renovations and no more procrastinating.  We have battled for years to keep Carter's life and our lives as "normal" as possible, even when we understand that our lives our anything but "normal".  I am the type of person who likes things to be in their rightful places, so the idea of turning our beautiful dining room into a bedroom without privacy and a door, has been daunting.  But this is where we are at this time.  It makes sense and is a viable option.  All of our other dreams are far from reach, unrealistic and unpractical.  So here we are.  As I think about moving Carter's hospital bed to our dining room and putting his clothes in the coat closet, I feel my heart sink and my emotions in over drive.  As easy as it would be to drop to my knees and cry, I know that I can't.  it has to be done.  As much as I love to walk into Carter's bedroom and see all of his precious art work, U of M souvenirs and gifts from over the years, I know that a bedroom is silly in the big picture.  Carter doesn't even use his bedroom.  We wouldn't have him sleep alone in his bedroom because of the risk he will reflux and aspirate.  He doesn't have a collection of his favorite toys to put in his room.  He doesn't even step foot in there these days.  The realization of THOSE things is what kills me.  Even after 5.5 years of knowing that my child has special needs, it's moment like this that consume me.  It's a small piece of "normal" that I held on to for dear life all along.  Carter can have adorable outfits, wall hangings, colors on the walls that make us think of him, a car track rug and Pensacola memories from when he was a baby to adorn the furniture.  But all of those things are for us, not for Carter's reality.  He could care less about most of those things.  So when the tough choices are in front of us to rearrange those things in to something that makes sense, I must let go of those small pieces of sentiment.  I loved the idea of having a place we called Carter's…a place I could walk in to and pretend that Carter was just like any other kid.  It was a facade for my sanity.  A new plan has been cultivated, ready or not.  We will paint over the blue walls in a color that our oldest daughter chooses and move her day bed where Carter's hospital bed used to be.  We will let her organize all of her art supplies and toys in a space she can call her own.  Our house will transform this weekend in to something that is long over due.  It will become a little more handicap accessible and suit Carter's needs at last.  As hard as I try to type this out and not cry, there are tears pouring from my eyes.  I sort of feel how I did a few years ago when I was facing a diagnosis and feeding tube…and all of my hopes that we would find a doctor or answer that would tell us that Carter would be fine and that this was all just a bad dream, vanished.  There are moments in our life that change everything and turn what was into what is.  There's no turning back.  I know that the time in this house will come to an end when the time is right and we will move to a house that is perfect and Carter will again have his own bedroom where there is no stairs to battle.  I know that I will look back and chuckle as I remember my inner struggles with this temporary plan.  But right now, I must be strong and let it be.


Sunday, July 13, 2014

Mighty Thursday

This coming Thursday is very important.  It's a day that Josh and I have counted the days down to.  Over 7 months ago, we went to a genetics appointment where we decided to move forward with Exome testing on Carter.  In order to do this test, all 3 of us had to give a blood sample and we signed many consents agreeing on the steps of the test.  This is the last genetic testing that is available at this time and our hope is to find the mutation in Carter that would explain why he is so severely affected.  To this day, every single genetic test we have done, has come back normal.  All we know is that his Mitochondria in his muscle biopsy have mild defects, but it doesn't tell us why.  The reality is, we still have no idea why Carter has what he does.  Some people may wonder why we keep searching since there won't be a magic fix and it won't change our treatment options.  But to us, it is important.  The hardest part of this journey, is not knowing why.  We don't know what the risk is for our girls and their future children.  So when the mention of Exome testing came up, we didn't even hesitate to move forward.  It was on December 11th, 2013 that we sent our blood samples off to a special lab in another state and started the waiting process.  One month ago, we got the call that results were in and we scheduled the follow up.

The events of this next 2 weeks has lined up in such a way, that I have to believe it's all meant for a reason.  Some special reason.

With the 5K in Carter's honor fast approaching, we were invited to be on a segment of our local TV show called the Bart Hawley Show.  Luck would have it that the only day they can have us on, is Thursday.  We will leave the hospital from getting Carter's Exome results and head straight to the studio to be interviewed.  All the reasons that we are planning this event to raise money for research is what we are anticipating at this appointment.  Our biggest hope is that researchers can better pinpoint Mitochondrial mutations, treat them and ultimately, cure them.  That all begins with answers.  And here we are, going on TV to talk about the event and why it is so important to us.  I am nervous and excited for the entire day.  I have no idea what to expect or how I will hold up.  But in my heart of hopes, I hope that we get answers, that I hold strong during our interview on TV and that our event is a huge success so that as all these things line up, we can make a difference.

Stay tuned…


Wednesday, July 2, 2014

Funny things called shoes

There are many things that have made me cry throughout our journey with Mitochondrial Disease; many of which don't require explanations or listing.  But there are many things that go along with our struggles that many may not realize could cause such grief.  One of those things is shoes.  Yes, shoes.  I have cried more times over shoes, than many of the "bigger" struggles.  To many people, this may sound silly and irrational, but unless you have struggled in the ways we have every step of the way, you may not understand.  Literally.  When Carter was born and still in the hospital, his pediatrician told us that we would need to see an orthopedic doctor right away to have his feet looked at to determine whether he had clubbed feet or not.  When he was only a week old, we made the hour drive to a children's hospital for his very first specialist appointment.  We were very fortunate that he did not have clubbed feet and the doctor told us that they would flatten out and become more straight as he grew and began walking.  As many of you know, the days of walking never came.  Therefore, he never put the weight on them that was necessary to flatten out his feet.  The birthdays, holidays, growth spurts and family pictures came and went.  And throughout those events, it was near impossible to find shoes that fit him or stayed on his feet without causing him pain and sores.  When the days of orthotics came, so did more horrible shoe shopping trips.  I have walked through shoe departments in every store you can imagine, looking at all the cute loafers, dress shoes, tennis shoes, sandals and boots with tears in my eyes and frustration in my heart.  None of them fit Carter.  We had to buy shoes that were 2 or 3 sizes bigger than his actual feet just to accommodate his orthotics or extremely curved arches.  To be completely honest, Carter has spent majority of his life shoeless or in socks.  Two years ago, my uncle offered to get Carter shoes at our local speciality shoe store for his birthday.  So we took him to get fitted and the shoe professionals showed me the shoes that were extra wide and very flexible.  To my total surprise and joy, they fit.  And not only did they fit, but they were so cute.  Saucony brand isn't carried in most stores and has to be ordered (taking almost 2 weeks to arrive).  But they were everything I wished for in shoes.  Of course, the price tag is much more hefty than my bargain shopper heart would like to spend; but who can put a price tag on something like that?!  My uncle bought him TWO pairs of shoes that day.  And because Carter's feet didn't grow because of the lack of weight bearing, they lasted over a year!  And as miracles would have it, Carter started to stand, bear weight and take steps with assistance, which has made all the difference in Carter's arches and shoe growth!  His feet are growing at record rates!  He has went from a 5.5 to a 10 in one year!  When the time came to buy him more shoes, without hesitation, I went to the specialty shoe store again.  But this time, I didn't want to wait for the Saucony brand to come in and settled with Stride Rites.  A choice I will never make again.  The Stride Rite's just didn't have the stretch, flexibility and perfection that the Saucony brand offers.  Unfortunately, his new shoes didn't last long before making red spots on Carter's ankles and my shoe dilemma persisted.  I expressed my frustration with my aunt and she told me she wanted to buy them this time and to look for ones that would work.  I went back to the specialty shoe store, but found that they had closed early due to summer hours.  So I decided to take Carter somewhere that I had never taken him before.  Off we went to Foot Locker; a small doom in the pit of my stomach.  When we got there, the nicest man approached us and asked what we were looking for.  I asked him if they carried Saucony's in stock, which they did not.  He told me that they had a pair of Nike Free's that were similar to what I was wanting.  So I figured, "what the heck, let's try it out".  Once Carter had been sized and we discovered he had grown another shoe size in 3 months, the man was off to the stock room to get a pair for Carter to try.  As soon as I laid eyes on that bright orange pair of Nike's, I fell in love!  The man in Foot Locker probably thought I was totally crazy before I had explained the years of shoe grief.  I stood there admiring that shoe and saying, "it's so flexible and soft and adorable and it has STRETCHY shoelaces!!!"  The part of Cinderella came to mind when the kings men are slipping the glass slipper onto Cinderella's foot and it fit perfectly.  I could see the clouds part and all the shoe gloom dissipate.  When I called my aunt to tell her what perfect shoes they had, she told me to get him a pair in the next 2 sizes as well.  I cried right there in the store, but this time they were pure happy tears.  How do you explain a moment like that in the right words?!  This all happened over a week ago and it's taken since then for me to sit down and type this out.  It's these "small" things in this big journey that carry so much significance for so many reasons.  Out of all the atypical things that go along with a medically fragile child, a dilemma like shoes can become the tip off the iceberg.  I have tried for so many years to make Carter's life as "normal" as possible.  The man at Foot Locker made this shoe shopping all the more wonderful as well!  He asked me questions about Carter's disease and how old he is and listened to my story about shoes.  He even introduced Carter to his co-worker like he was just another friend of his.  It made my day!  What a funny thing a shoe is.

A very special thanks to my precious aunt who so graciously bought Carter these perfect shoes!  And a special thank you to my uncle who helped me find the first couple pairs for Carter's 4th birthday.  And thank you to the special man at Foot Locker for listening to my stories and treating my son like he was the coolest kid in the store!  It is because of good hearts like all of yours that my special boy has such amazing shoes and this momma has a peaceful, happy heart <3

Tuesday, June 3, 2014

Life as we know it...

I read a blog today that mentioned how feeding tubes are a form of life support and was stopped in my tracks.  I never really thought about it that way.  But when I allow myself to think about it, I am astounded by how amazing medical advances are and how they save my child's life each and every day.  Carter's feeding tube, 14 medications and his special formula are what keep him alive.  I can't even imagine what life would be like without these things.  Carter probably wouldn't even be with us today, if it weren't for them.  When we were first faced with the possibility of a feeding tube, I instantly shot it down and said that I didn't want to do that to Carter.  The mention of a "feeding tube" just sounded devastating and final, as though we were giving up and this was it.  It was daunting and scary for us.  Now after 3 years, his feeding tube is an absolute way of life for us.  I don't even think twice when I hook up his tube extensions or administer his feeds.  I remember being afraid to go forward with the surgery and was fearful of whether it was the right decision or not.  Carter was only 2.5 when he had it done…just a baby.  We had no idea what we were getting into; there aren't classes on this, although there should be.  It was a decision made solely on the recommendation of the neuro geneticist in Atlanta who diagnosed him.  He told us that it was crucial and necessary with Carter's condition and failure to thrive.  I put all of my faith in that doctor and dove in head first, with no life preserver or divers training.  The day before his surgery, I sat in pre-op bawling my eyes out.  The sweet nurse who sat with me tracked down a learning DVD so that I could watch it that night in hopes that it would bring me some peace in my decision.  After I watched the DVD that evening, I put Carter in the bath.  I cried as I washed his tubeless belly for the last time.  No DVD or coaching could prepare or console me for such a big decision and life changing choice.  The next morning, as Carter was being prepped for his surgery, the nurse looked at him and said, "he looks ready, he really needs it".  That sentence was just what I needed to hear that morning.  He NEEDED the tube.  That nurse probably had no idea what profound strength she gave me that day, but I will never forget.  

We spent 4 days in the hospital keeping him comfortable with pain medication and I was trained on the basics of the tube.  Four days to learn how to keep my baby alive.  I had to learn fast and efficiently, because I would have to teach my husband and everyone who would come to care for Carter.  The first couple of months were the toughest because when a feeding tube is initially placed, it has to be a PEG (basically a long tube that is connected to a metal disk on the inside of the stomach and can't be removed without surgery) until it heals.  We had to learn to tuck it into his pants, but in a way that it wouldn't kink.  He was also prescribed round the clock feeds with a 3 hour break.  And because the port got stretched out after a week, we had to learn how to meticulously tape the feed hose into the port so that it wouldn't spontaneously pull apart and cause stomach contents and sticky formula to leak everywhere.  And of course, that happened A LOT over the 3 months before we could finally have the PEG switched to a button.  I questioned our decision many times over those tumultuous 3 months.  One thing I have learned over Carter's 5 years of life, is that progress doesn't come easily, but the rewards are huge.  Carter's needs and requirements to keep his body functioning have increased with age and the ease of the feeding tube has become effortless; the decision one of the best I have ever made for him.  Over the past few years, we have found that Carter is allergic/sensitive to the majority of food and his GI function is so poor, that it is unable to digest meats, gluten, dairy or anything thicker than purees.  So his main and only intake is his special hypoallergenic formula, fruit and veggie purees.  With all that said, I suppose Carter's feeding tube IS his life support.  It gives my husband and I the tools to care for our child who is a miracle and amazing in every way.  Here is to 3 years of the feeding tube that is a way of life as we know it.  

Friday, May 23, 2014

My beautiful blue eyed boy

You would think after almost 4 years of questions and answers that it would get easier to handle.  In some ways, it is.  I don't find myself getting befuddled and frazzled when difficult questions arise, but the after math always leaves me reeling.  Never in a million years would I have ever thought I would be the mom who would be asked questions about life span or the unknown in regards to my young child.  Never did I think I would become a live in nurse who uses medical knowledge outside of the work place.  Communication with Carter's teacher is more about Carter's medical struggles each day rather than development.  I am in contact with Carter's medical team more often than most of my family.  Most of the time, when I tell people that Carter has Mitochondrial Disease, it leaves people confused.  But when I say he is my 5 year old son who cannot walk, talk or eat most food and that most of his nutrition goes through a feeding tube; the realization sinks in.  My son is sick.  Not with a cold or ear infection; but forever sick.  There is no antibiotic or easy fix.  There is NO fix.  As I say these things out loud to help people understand what Mitochondrial Disease means, I find the old wounds in my heart begin to open.  I feel the age in my 28 years multiplying.  Yesterday, at my sister-in-law's yard sale, a lady stopped to read the flyer on the table about the upcoming 5K that we are planning and I explained that Carter is my child.  We got in to "the conversation" which left this lady, a total stranger, in tears.  I felt my heart hurting, but I have learned to keep my tears pushed back.  An acquired skill.  When I turned around as the lady walked away, my sister-in-law surprised me as she was also in tears.  She asked me "how do you not cry every time you tell people about Carter?"  I've never been one to cry in front of others, at least I try my hardest not to.  My answers have become so routine that I can say them without even thinking; a survival skill.  It's the moments when I am alone with Carter and I have taken my armor off for the day, that the pain falls from my body.  Since my daughter was at her papas for the night, it was a rare evening of undivided snuggles with my little man.  After I gave him his night meds, I climbed in to his padded play area to lay with him.  As his meds started to work and his body was released of it's struggles, I felt the toll take over.  As I watched his muscles relax and frustrations dissipate as my son succumbed to sleep, his cerebral palsy at rest; I wept.  I cried big, ugly tears as I mourned for my child.  The only time we see Carter relaxed and peaceful, is when he is asleep.  My husband and I don't talk about the what if's or why's very often; it's just too hard.  But last night as I cried in to Carter's shirt, I told my husband, "I just don't understand what went wrong with Carter's brain to make so many things so hard for him. I just don't get it".  As I watch my perfect, beautiful son sleep, you wouldn't even know he has cerebral palsy, cognitive impairment or self aggression.  He is so beautiful.  When he is awake and I get those rare moments of eye contact, I see wise blue eyes looking back at me.  Behind the confusion and frustration, there is a little boy who understands.  And as his mommy, I try so hard to be strong for him.  I do my best to make the right decisions for him, but worry that it's not good enough.  I hope that Carter understands what I am saying when I tell him how much I love him.  They say that when you go to heaven, that all of your struggles, pains and medical problems are healed.  They say that we all walk and talk in heaven.  As I have my heart to hearts with God, I plead with him to please make my baby better, if not today then some day when he embraces him in heaven.  I don't understand why Carter is sick and I probably never will, but what I do know is that my little boy changes lives.  He has changed mine in so many ways.  There is a crazy inner battle within myself when I think about how perfect Carter is to me and how I wouldn't change him for anything yet wish he could have an easier life.  Regardless of whether your child is healthy or sick, never seize to hold your children close every day.  Shrug off the endless messes and tantrums.  Admire them as they sleep.  Relish in their giggles and smiles so that your heart can handle their tears and frustrations.  Lessons that my little warrior has taught us.  Be strong, be faithful and be happy.

Wednesday, May 14, 2014

My Life Changed

I feel a compelling need to give credit where credit is due.  I wrote a couple days ago about our amazing experience at KayLeigh's classroom and didn't elaborate enough on what  made that day so amazing.  The majority of my post was to emphasize my fear as a mother of a special needs child when it comes to him being accepted and treated like any other child.  I live with that fear everywhere we go, including the grocery stores, amusement parks, doctors appointments, and even family functions.  When we are around people who don't understand why Carter is different, they tend to stare and sometimes give us funny looks.  I am sure I get the same feeling in the pit of my stomach as parents of typical developing children when they get looks for their child acting up in the store.  No parent wants their child to be judged or for their child to act up.  Even the best parents will have children who act out or make mistakes.  And for that exact reason, I feel awful that any parent might feel like I pinpointed their child as a bully.  I NEVER in a million years meant for my post to sound that way.  ALL kids at one time or another, have said something to another child that hurt their feelings and on the same hand, have probably been teased themselves too.  It happens at every single school, classroom and playground in the world.  Even children from the best homes, will have bad days and do things out of character or that they don't mean.  When I mentioned the boys who had teased my daughter and son at one point or another, but explained how they were the boys who amazed me the most, I meant it with all the best intentions.  Those boys are the ones who made that day so wonderful.  It's like getting a compliment from someone you least expected and how it means so much more to you than when your mother tells you how great your new do looks.  It's the unexpected moments in life that touch us the most.  It's not that I ever doubted those boys would accept my son with open arms, but they went above and beyond what I ever imagined!  They taught me so much that day!  As I lived in fear of bringing my child who vocalizes loudly, pokes his eyes, bangs his head and has mood changes at the drop of a dime, I wasn't sure how ANY of the kids would respond to him.  It was a new experience for me, which is always scary.  And those kids showed me what compassion and acceptance truly look like.   I was the one who walked in that classroom that day with negative feelings and doubts while the kids were excited and enthusiastic to meet Carter.  I was the only person in that room who was worried and at my weakest moment, those kids lifted me up and gave me a newfound hope and happiness that I hadn't found yet in our journey.  They renewed my strength when I needed it the most.  Those kids may not have even realized that day what they did for me, but it's a day I will never forget!  Every single one of them, especially those boys, changed my life.  It wasn't just a great day for me, but for KayLeigh and Carter as well.  I want to thank the parents of all of those kids, for raising such loving, smart and kind children.  Those kids made a difference in my life and I know that they will make a big difference in the world throughout their lives.    
Below is a picture of the toy that a child gave Carter at the end of our visit and for so many reasons, this is cherished by our family!  It is truly amazing to me that he even thought to give Carter a gift, especially one that he worked so hard for.  It was more than just a gift, it was a symbol of friendship between that child and my son!  I was literally brought to tears when he asked me if he could give it to Carter.  This toy will be kept among the many treasured items we have kept along the way.


Monday, May 12, 2014

Modifying our World

They say that raising kids changes your life.  Not just the sleepless nights, diaper changes or extra long road trips.  But because the things that used to be important, aren't so important anymore.  You find excitement in the things that light up your child's face; such as the song at the beginning of the Mickey Mouse cartoon or apple slices at McDonalds.  I find myself snapping pictures of all the little things that to me are simply amazing…because MY 2 year old is doing it.  To many other people, it might just be "oh look at the typical things she's doing, whoopty do", but it's MY 2 year old doing it.  I'm sure all parents can relate!  My iPhone is literally so bogged down with pictures and videos that I have to meticulously scroll through old pictures to decide which to delete just to make space to take a new one and then half the time, I end up missing the cute picture opportunity any way.  And while all of this is so amazing to me, I also experience the opposite end of motherhood that many others do not.  I have a 5 year old who is still learning to do things that my 2 year old learned to do months and months ago.  But nonetheless, I am over the moon excited about every little thing he does!  Some of the things that come "naturally" as a mother in raising children, doesn't come naturally when the natural sequence of life, is disturbed.  And just when we think we have it figured out, life changes again.  Two steps forward, three steps back.  But despite the challenges, we keep on trucking…and all the hard work, will some day pay off again.  This afternoon, as I have a few hours of quiet time while Lily is riding the big school bus with a friend who is a bus driver, I decide to use my time catching up on details for the upcoming 5K and posting new blogs.  Grown up time, right?!  Well, I'm TRYING to do grown up things, but amidst my dining room table of Mother's Day flowers, my untouched purse and cup of coffee, there is this odor.  An odor that keeps distracting me from my grown up tasks.  I have lit a candle and sat Carter's vanilla scented scentsy lion next to me so that I can try to concentrate.  But the odor keeps penetrating my sweet smells with it's annoying presence.  I have pulled every toy out of the nearby toy box in search of an old sippy cup or old piece of food but to no avail.  As I pull out the toys, I subconsciously think of when one of the kids got this toy or that book…even as I am annoyed by the disturbance at hand.  Lily has lots of stuffed animals, babies, computer learning programs while on the other hand, Carter has squish balls, texture/sensory toys, and a peg board for occupational therapy.  We have even resorted to looking for toys for Carter in the pet section, because they make squeaky/scratchy sounds and are easy to grasp.  A learning curve along the journey.  We also shop in the infant-2 years old section rather than the toddler boy aisle.  And as I sit here smelling the vanilla from Carter's scentsy toy that was donated by a kind stranger online, I smile.  Although I miss some of the quiet, predictable lifestyle I used to have; I wouldn't change this crazy, spontaneous adventure I have now, for anything!  When I wake up each morning, I never know what the day will hold.  I have went from a person who likes to schedule every minute detail to a person who can change those details within 45 seconds if need be without feeling my left eye twitch.  I used to be the most organized and tidy housekeeper I knew; now I am lucky to have a clear path through the living room amongst the toys and blankets around the play area that takes up the largest portion of our living room.  But this play area is Carter's link to normalcy and exploration despite his self aggression.  

I have returned from picking Lily up from the bus garage and had yet another exciting drive home.  I handed her my chap stick which is one of her favorite things to do; carefully putting it on over and over.  But this time, she decided to smother every inch of her exposed skin (which is a lot since she's wearing shorts today).  Oh the things that we mothers will do for a quiet drive home…and the messes we will clean just to have that.  And of course, I had to snap pictures of that too!  

I'm sure every family learns to modify their world as kids change their lives, but these are just a few that I thought of today!  Sometimes it just takes a little digging through a smelly toy box and wiping chap stick off your tired child, to remember how much your life has been modified, yet perfected!