Monday, October 13, 2014

We did it!

A couple of months ago, I posted about the changes we would be making to our house to accommodate Carter's needs and allow our daughters to have their own bedrooms for the first time.  After I posted it, I lost my strength to do it.  I broke down in tears every time I looked at his room and thought about taking it all apart.  I just couldn't do it.  I knew that I would get used to the idea, but I needed time.  This weekend, I finally found the nerve.  So without hesitation, I started cleaning out the downstairs closet so I could start the rigorous work of taking all of the important things in Carter's room and moving it all to a closet.  A task that was not only tiring physically, but emotionally as well.  My little boy is almost 6, so there were tons of things to go through from over the years.  I reminisced about each memory and carefully placed the knick knacks and art projects into boxes for now…I pulled strength from some place way deep down inside that I didn't even know was there.  I spent half of Saturday organizing and moving things from one place to another until all three kids' closets became their very own.  On Sunday, my best friend came over to help me disassemble Carter's hospital bed.  This process took us about 2 hours.  When my husband got home, He took apart the bottom platform and motor so that we could move the 100 pound piece of equipment to the dining room.  Once that was down, the reassembling process started.  After an hour, the hardest part of the whole ordeal, was over.  My moment of strength as we maneuvered the platform downstairs was when Carter started bouncing up and down on his knees with the biggest belly laughs ever.  He smiled and enjoyed seeing his bed coming downstairs.  Despite my sadness and misery of the changes, he was happy.  I think it was his way of showing me that he is okay with the changes and he understands that it's for the best.  He knew his mommy needed encouragement after the challenging weekend.  A room is insignificant and irrelevant to Carter; all he knows is that this is home, whether his things are in a closet or a bedroom.  All he knows is that he is loved and for him, that is enough.  Like I said in my other post about the arrangements, a bedroom and decorations were more for us, than him.  I talked to several family and friends about our plans over the last few months and every single person agreed that this was a good idea and would make our lives easier.  I want to thank each and every one of you for giving me words of encouragement and supporting us every step of the way.  I want to thank my best friend, Alison, for coming straight over when I told her my battle with the hospital bed.  

This next 6 months is full of more appointments, testing, our growing family and many birthdays and holidays.  We will take each day one step at a time.  This journey never gets easier but we do get stronger.



Monday, October 6, 2014

Crunch time

We are only a few months away from Carter's 6th birthday.  I've said this many times before but as each birthday approaches, that excited yet worried mixture of emotions arise.  Over the last few years; since Mitochondrial Disease was first officially made a big part of our lives, the endless question that lingers above our heads is life expectancy.  As Carter gets older and his struggles get more confusing and baffling, we are left with more questions than answers.  This last year has been tough because we thought we had finally made a break through with Carter when he learned to cruise and stand with seemingly endless strength and energy.  But those dreams faded within 6 months when he regressed back to sitting, scooting and very little energy.  Many of his struggles have been on and off over the years, but there are new issues that we are facing.  He has a lot of trouble with urinary retention (unable to urinate consistently on his own), he has very little strength in his legs and he is extremely aggressive to his face.  We have new specialists including urology, neuro surgery and behaviorists.  But the hardest part of this is that most of them don't know why he has these struggles and it always goes back to the "easy answer"…it's a Mito thing.  A Mito thing.  A Mito thing.  An answer that I am not okay with.  Are there only blinders on for most doctors when a child comes through the door with a questionable diagnosis?!  One that many doctors don't even fully understand.  So instead of looking at each problem and forgetting that their is this underlying condition that COULD be just a small PART of his problem, they are quick to brush it off as if there is nothing they can do.  Over the last few months, I have accessed all of his medical records myself and scoured through the many tests and reports trying to find the missing puzzle pieces that have been brushed under the rug.  And through my search, I have found things that have made me angry yet determined to find new answers.  The result of my search has been that we seen orthopedics to discuss his subluxed hip (the ball of his hip isn't quite in the socket like it should be and therefore his hip sockets have deteriorated) and they are trying to figure out a successful method to correct this.  We also saw urology to discuss his urinary retention and we were trained on catheterizing him at home to help him empty his bladder completely.  But during this appointment, for the first time, the urologist looked at the deep dimple in Carter's lower spine that he was born with, but that doctors have never looked closer at.  She explained that it COULD be a tethered cord or spinal problem.  IF it's this problem, it could have everything to do with his constipation, urinary retention and leg weakness.  This could be life changing for Carter because a neuro surgeon could correct the problem with surgery. Why this hasn't been addressed or taken more seriously over the years, I will never know for sure.  But within the next few weeks, Carter will be having a sedated spinal MRI, bladder and kidney ultrasound, bladder pressure test and a dye study of his ureters to make sure his urine doesn't back up into his kidneys.  And as if this isn't enough already, we have decided to take Carter to the Cleveland Clinic for another opinion.  We want to see their big Mitochondrial specialist to make sure the med list is okay and see what he thinks about Carter's protocols and over all care.  While there, he will also be seeing an epilepsy and gastro doctor. We will be going there next month for a few days.  I want answers, not questions.  I want to make sure that Carter has the best quality of life possible in the years he will be with us.  It may seem crazy to many people that we are booking so many things so close together, but as many people know; Carter has a new baby brother/sister on the way (due in March) so we are trying to take care of everything important as soon as we can!  It will be hard for us to travel as the winter months come as well as a new baby.  It's crunch time in our home in so many ways.

So as Carter's 6th birthday quickly approaches, bear with me as we embark on many new tests, appointments and specialists.  Ready or not, here we come.

Tuesday, September 23, 2014

I gave up...

I gave up a while ago, but not in a way that you would think.  Anyone who is not in our shoes, may not entirely understand but let me try to explain.  Giving up doesn't mean we have "given up'' in a sense.  When we tell people about our son's medical problems and how difficult it is to see him gain and lose all of his skills, a popular phrase we hear often is, "no one knows what Carter's future holds, miracles happen every day" or "doctors don't know everything".  And I totally 100% agree, but there's another side to this as well.  Have you ever wanted something so badly, that you forget to appreciate what you DO have?!  When Carter was a baby, I hoped so badly that he would catch up in development or start doing the things his therapists worked so hard on.  I spent most of my time wishing for something that wasn't there.  I cried for all the things I had dreamed about for my first child.  I wanted all of those mommy experiences that every mother imagines.  I wanted to take Carter to the park and watch him make friends, I wanted to share my favorite snacks and foods with him in hope that he would follow in my footsteps, I wished for the day that my husband could play sports with his only son.  And over those years, I neglected to appreciate the miracles in front of me.  The smiles and giggles that Carter had over the rare toys he enjoyed.  The glimpses of eye contact that we worked so hard on in speech therapy.  The negative test results for devastating disorders that doctors wanted to rule out.  I let all those things pass me up while I still held hope for bigger things.  Without even realizing I had given up, I did.  But something different happened that may seem contradictory.  I didn't lose hope nor did I feel defeated.  Instead I feel empowered, stronger and happier.  I celebrate all the little things and brag to my family and friends about Carter's favorite squishy ball.  I laugh and enjoy the funny faces Carter makes when he watches his sisters dance and sing.  I clap and applaud when Carter poops on the potty.  I feel triumphant when Carter has a pain free family vacation where he is happy the entire time.  I go on and on about the 12 ounces of pureed baby food that he has consumed twice a day for a month now.  Do I dwell on the what if's and possibilities that could happen at any time in regards to Carter's medical conditions?  Yes, every single day.  Do I always hope for a new cure or treatment that will help my child live a better and longer life?  Every moment of every day.  But I give up on wishing for something that isn't meant to be for my son.  And the most important part of this, is that I am OKAY with that.  Being okay with something I cannot control, was the hardest obstacle by far.  I believe that miracles sometimes create unrealistic expectations.  Miracles don't always mean a magic cure or over night phenomenon.  In my world, miracles are simply every little thing that my son does.  He is alive, he is happy and he is beautiful.  THOSE are true miracles.  So I beg of my family and friends, to understand when I say that I have given up and that you will understand and respect that I don't wish for perfection anymore.  I don't beg God to change to my child.  Would you want God to change your child and the gift you have been given?  My every day miracle goes by the name "Carter".

Monday, September 8, 2014

The love of a sister

Having children is amazing in so many ways.  But there is something oh so very special about seeing your children become siblings and growing together; in more ways than one.  There's nothing I love more than seeing my 2 year old grow into such a loving, devoted sister to her extra special big brother.  She watches him go through hours of therapies, receive tons of meds every day, get feeding tube boluses and non age appropriate care (diaper changes and baby food meals).  Instead of her questioning or wondering why he doesn't walk, talk, eat regular meals and go on the potty, she learns how we do things and she does her best to help.  She cheers her brother on when he tries so hard to stand or he finishes a bowl of sweet potatoes.  She even helps feed him her applesauce to which he cracks up laughing.  She stands in front of him as his therapist helps him walk and she waves her hands as she says "come on buddy, you can do it".  When his speech therapist works on reciprocal sounds, Lily reminds her that "Carter can't talk".  It's simply amazing what she understands even when she never asks why.  To her, it's not a question of why.  To her, nothing is wrong with her big brother.  To her he is simply "my Cart, my brother".  To see unconditional love and devotion like this, is everything I ever hoped for, for Carter.  Lily is truly her brothers best friend and he is hers.


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!

A day that goes down in history...

For the past few months, Carter's big sister, KayLeigh, has been asking if I will bring him to her classroom to meet her teacher and classmates.  The teacher this year is so thoughtful, kind and amazing!  Last fall she invited KayLeigh to eat lunch with her so that she could ask questions about her little brother.  This meant the world to us!  So over the months, the idea of taking Carter to a "typical" school was both exciting and terrifying for me.  Through the process of putting Carter in school two years ago, I remained adamant that he would never go to a regular school around typical developing kids, ever.  Typical school is hard enough as it is for kids who have no developmental delays, medical problems or behavioral differences.  There was an incident when KayLeigh was in the first grade where a couple boys in her class made fun of Carter when she showed pictures and talked about him as her show-and-tell.  From that day forward, I involuntarily made a vow to never voluntarily put Carter in a situation with potential for teasing.  It's one thing that I don't think I could handle well.  In my mind, I have played over and over all the possibilities and scenarios that could happen if I ever witnessed or heard of someone teasing my precious boy.  I would totally be that crazy lady who yells and cries…at least in my mind, I imagine myself to be that woman.  So as the mention of bringing Carter to meet KayLeigh's classroom have resurfaced several times over the past few months, I was faced with the reality that I would have to make a decision.  Was I ready to push Carter into a classroom full of 4th graders and showcase his differences to a group of kids who may not understand?!  As I looked in to KayLeigh's face as she asked me again, "mom, please bring Carter to meet my teacher…she REALLY wants to meet him", I responded without giving it too much thought because I knew I would change my mind if I did and said, "Okay, I will bring him this week."  What did I say?!  What was I thinking?!  But once a promise is made, I can't break it; I've never been able to break a promise, especially to my children.  I did as I said I would and called KayLeigh's teacher that following Monday to ask which day would work out for me to bring Carter up.  We agreed on Thursday afternoon.  It was done.  The decision irrevocable.  I had 4 days to prepare and brace myself.  When the day finally came, I had a lot to do to make it possible.  I dropped Lily off to my grandma's house around 12:30 and headed to Carter's school to get him by 1:00.  When I picked Carter up, his teacher told me that he had had a seizure in the pool that morning; they were sure of it.  So as I was embarking on treacherous waters, this was just one more thing to add to my worries for this day.  But he was in good spirits and seemed fine, so we continued our plans as usual.  KayLeigh's school is an hour away, so I used that time to listen to our favorite songs, sip on coffee and mentally prepare myself for any scenario.  Once we arrived at KayLeigh's school, I gave myself one last pep talk before getting Carter's wheelchair unloaded, getting him situated and heading in.  I walked slowing to KayLeigh's classroom, still not sure what to expect.  Once I appeared in front of her door, KayLeigh waved frantically as she spotted us!  She ran into the hallway to push Carter in herself.  I could have cried happy tears right there on the spot!  Her teacher told me that she had asked over and over all day when we would get there.  KayLeigh proudly parked her little brother in front of the classroom as she kissed him and hugged him over and over.  Her teacher told her to introduce him to everyone, so she proceeded to tell them his name and that he has Mitochondrial Disease which causes his muscles not to work like ours.  Several hands shot up in the air.  The teacher called each name one at at time so the kids could ask questions.  The first child asked, "How old is Carter?"  The next asked, "How old was he when he started to have the disease" and the next question is what stopped me in my tracks, "how long do you think he will live?"  It took me a minute but what felt like a lifetime to compose myself and swallow down the shakiness in my voice.  I explained to the classroom that statistics aren't good for kids with this disease and that we will be lucky to have him as many years as he's meant to live, but that many don't live to see their early teens.  The entire class broke the silence into "awes".   Then came each of their turns to come up and say hello to Carter.  I could tell the kids were unsure what to say or do, which at first made me a little sad.  I squatted beside Carter so I could help him wave back at each of the kids.  After they had each greeted him, KayLeigh asked if I could get Carter out of his chair so he could play on the floor.  Her wish was my command that day.  We put him on the floor and slowly, ever so slowly, a miracle happened before my eyes.  The kids slowly, slowly, slowly made their way to the front of the classroom as they circled him.  I decided to get up and stand by the teacher to take pictures and the kids could watch how he plays.  Before my very eyes, they scooted closer and closer until the entire class was giving him "high fives", rubbing his back and head, talking to him...until another miracle happened…Carter started belly laughing.  The voices rose and laughter bubbled over.  I could feel my worries dissipate and my heart swell so big.  It was the most unbelievable sight I have ever seen.  It was what I always wanted so badly for Carter!  To have kids play with him and accept him for who he is.  And that day, he made a whole classroom full of friends.  As we prepared to leave, the kids asked if I could bring him again and gushed over how adorable and strong Carter is.  A little boy who has picked on KayLeigh this school year, came over and asked me if he could give Carter his toy he had earned for staying on green that week.  I was in pure shock!  The two boys who made fun of Carter in the 1st grade, were the ones who played with him the most.  All that pent up worry and anger that I had had, was all of a sudden gone.  Those kids may have learned a valuable and lifelong lesson by meeting our special boy that day, but I think I learned the most from those kids.  Kids are so smart, so eager to learn and so accepting; even of those who are different.  It's all about understanding what difference means.  I learned that I have to let my little warrior be allowed to be "normal" and teach others how amazing he is.  I can't be afraid of the unknown or what MIGHT happen and simply just LET IT HAPPEN.  There are so many things about Carter's life that I cannot control, nor can I predict…just like this day.  I have to learn to let go of my worries for things I can't change and live in the moments that we have.  



And lastly, I must say that I am so proud of KayLeigh for being so proud of her little brother, no matter what anyone else might think.  Carter doesn't have special needs in the eyes of a 9 year old; he simply has special powers that deserve to be shared.  

Wednesday, May 7, 2014

The Seasons Change

As I ran a couple errands this afternoon, I admired the blooming flowers and trees along my route.  The beauty after the storm.  Last nights thunderstorm and pouring rain assisted in more flowers blooming and trees smothered in new buds.  The dreadful winter becoming only a shadow of a reminder.  For Carter, it was devastating and the aftermath is still in repair.  He lost all of his strength to pull up or take steps.  He battled cold after cold.  But as the weather starts looking up, so does Carter's development and health.  Just yesterday, he pulled to stand twice on the couch.  He isn't throwing up or refluxing nearly as much and he has slept through the night, the past 2 days.  He hasn't missed any days of school in the past month, except for a couple routine doctors appointments.  Proof that the worst seems to be over; both in weather and in health.  No one is really sure why this happens to a lot of kids with medical problems, but I'm thinking it could be weight gain, med adjustments, colds, hospital admissions and the winter blues.  






But as the seasons always do, change is coming.  It might be hard to imagine during the hard months when it's gloomy and cold, but the sun is always there.  Just because we can't see it, doesn't mean it's not there.  It's the same with Carter's abilities and strength.  It might be hidden sometimes, but it always there.  The proof is in his smiles and resilience.




It's always amazing to me every spring that beneath the frozen ground and -0 temperatures, the seeds and bulbs of perennials seize to die.  Even after the limbs of trees are covered in ice over and over, they continue to sprout new leaves every year.  Even the toughest of times cannot break the hope and fight inside of our son.  It's always there, even when we worry.  I am so thankful to all the doctors, therapists and teachers who never give up on Carter.  They continue to research and trial new things, even when the odds are against us.  A couple months ago, Carter was evaluated at the big eye center in Ann Arbor to determine how well he could see.  They concluded that he can see okay minus some astigmatism and  near sightedness, but the doctor continued to say that he didn't believe glasses were necessary because of Carter's cognitive impairment.  He said it wouldn't make much difference in his every day life.  That man must not have hope.  He must only understand what he reads in his textbooks; tunnel vision of the world around him.  Our local eye doctor couldn't disagree more with that narrow minded doctor.  We went ahead and ordered his new glasses any way.  Who is to say that glasses won't make all the difference in Carter's exploration of the world around him?!  Who is to stay that he won't try harder to touch button prompts to talk to us if only he can see clearer?!  You will always find hard times and negativity in this world, but it's how you decide to move forward that makes all the difference.  What would this world be like if there was no hope?  It's a thought that I refuse to give my time to.  Good bye winter, hello spring!  

Monday, April 28, 2014

Triple dog dare you...

I am not one to debate or spark drama, but I feel the need to express my feelings on this popular "cold water challenge" debacle.  From what I understand, it is a follow-the-leader event where people are basically dared to jump in to a cold lake to avoid donating money to a charity.  Really?!  This seems backwards to me.  I may be a debbie downer for saying it, but this has got to be one of the most ridiculous fads I've ever seen.  I helped raise money for special olympics AND jumped into a frozen lake as a way to say, "this cause is totally worth it and I'm willing to jump into freezing water if people will help me with the cause".  And now people are copping out on donating to a charity by taking a silly dare and jumping in to a lake.  Umm, okay.  If those people who are jumping in to cold lakes to look cool on Facebook would donate whatever they could afford to a charity of their choice, there would be a good amount of very much needed money that could be put to good use.  If as many people were willing to donate to charity as there are to inflict hypothermia to themselves, what a difference those people could make.  Save your gas money, video taping time and excitement over copy cat challenges and devote it to something useful…make a difference in this corrupt world.  Let's not forget that some people devote their lives to creating charities to raise money for research in hopes of saving their loved ones lives some day…or at least saving lives in the future, while you are playing silly games so you don't have to do something honorable.  I triple dog dare you.


Friday, April 11, 2014

Embrace the Day

I just finished getting Carter ready for his 5th full day of school in a row!  He has made it to school an entire week!  I can't remember the last time this has happened!  Between appointments, hospital admissions, snow days, holidays and sick days...a full week rarely happens.  I am hopeful that these full weeks will prevail now that the worst of the weather is over.  Carter always does much better during the warm months.  These great weeks do wonders for my body, mind and sanity.  All the hard work, hoping and worrying all boil down to the important things in life...happiness, peace and quality of life.  This week is a big victory!  My heart has gotten the little break it needed.  My little warrior has kept all of his food down, smiled, cooperated in therapies, slept through the night and been all around healthy this week.  What I wouldn't give to always have days like these.  My only worry today is getting a couple of Carter's prescriptions authorized and filled.  Anything else is being left in the dust of my escape.  I am not going to worry about tomorrow.  Raising a child with severe and complicated medical problems teaches you things that really matter in life.  It changes you drastically.  I don't have control or choices in many things anymore, but there are some things I CAN control.  I can control the way that I handle problems or struggles; I deal with them when I absolutely need to and forget the ones that don't directly effect me.  I learn to embrace the now; to let go of my mistakes.  There is no room for crap and the reality is; crap doesn't matter.  And if we didn't have rough days, weeks or months...would I truly appreciate the weeks like this one?  As hard as the times can get, I still have choices.  Choices in how I handle them.  In the big pictures, aren't the good weeks really about the little things?  Tolerating the food we are given, smiling, cooperating in what is necessary, a good nights sleep and good health?  It's not just for those who have medical struggles.  All the other crap, is just crap.  So as we admire the beautiful spring sunsets and sunrises, lets not forget or become complacent to their beauty for winter will come again and we will miss days like today.

Monday, March 31, 2014

A Mother's Toll


This past week has been really tough.  In a way that was debilitating to me as a mom.  The struggles are a constant tug-a-war.  Carter has good stretches that can last anywhere from two to six months but then have stretches of pain and struggles that can last just as long.  We sit on the edges of our seats; our very cores and nerve endings in a constant over drive of fear and anticipation for each of these stretches that will inevitably appear and again disappear.  Whether it's weather or growth related, we don't quite know.  No one knows.  This time, the rough patch started with reflux and vomiting and progressed in to "seizures or dystonia", a halt in eating by mouth and lastly, screams of pain.  By week two, when the shaking, breath holding and no eating hit...we decided to call 911 for the first time in Carter's life.  We weren't entirely sure if we were indeed seeing seizures or not.  But we wanted to make sure he was stable and getting enough oxygen before we decided whether to take him to the children's hospital or not.  We gave him a dose of rescue meds and the paramedics arrived quickly, but by luck, Carter's episodes slowed down and he got sleepy so we refused transport.  But about 20 minutes after they left, the episodes increased again and we decided to head to the hospital.  He was admitted for testing and observation.  And for me, as a mom, the toll was being taken.  I have felt nauseated and ill since it started.  I would feel hungry and try to eat, but would quickly become sick.  I thought I had the flu at first, but when two days quickly turned to two weeks, I realized that it must be stress and anxiety.  My worry was becoming a physical torture.  As I listened to my child cry in pain and frustration, my whole body tense and my stomach in an upheaval, I felt beaten.  As he shook with seizures, I felt my own body shaking with worry.  Doctors said the EEG was negative for seizures as I watched my child convulse; it makes no sense.  I am unconvinced that the tests are correct.  I am left frustrated and confused.  I fear every day that Carter's body is giving out and that Mito will get the best of him.  My husband is the optimistic half in our relationship in regards to Carter's status.  He always says that Carter is okay.  But this time, he was fearful too.  Seeing the worry in his face as we held Carter while he shook, unnerved me to my very soul.  If my husband is sensing and feeling the toll, then it must be real...it must be worse.
Carter was discharged from the hospital on Friday but over the weekend, he cried and screamed in pain, couldn't sleep no matter how hard he tried and refused all food by mouth.  But life doesn't stop, right?!  For a month, we had my nephew's birthday party planned at our house.  So I did my very best to clean the house, make queso dip, rice krispie treats and smile as if all in life was fine.  I took every desperate measure to comfort Carter; from suppositories to pain meds.  We were able to get him comfortable enough to get through most of the party, but he was groggy and restless.  Yesterday was much of the same, but Carter was more calm and less fussy.  He even napped for a couple hours...I knew this could mean that our night would be rough, but was happy that he was resting.  But to my absolute surprise, he slept part of the night and was comfortable and content the other half.  For the first night in two weeks, we got a decent nights sleep.  Boy, what a good nights sleep can do for the mental state.  I feel stronger and less anxious today.  I have even seen unprompted smiles and GIGGLES today!!!  He still isn't taking food by mouth, but he is comfortable and happy.  All the nausea and sore muscles have eased for my body today, as well.  The fear is never entirely gone and my inner nurse is never quiet.  We are doing bolus feeds through his feeding tube, monitoring him with an cautious eye and hoping with all our might that this rough patch is over.  I think I have aged another 10 years in the last two weeks.  But as each smile lightens Carter face, I feel the years falling away.  I feel my body relax and my stress melt away.  Oh how I love this little boy.  I marvel at his resilience and strength despite the every day battles.  I will take a thousand days of my own nausea and anxiety, just to see more good days and smiles.  







And to top off the great day of smiles and relief, Carter's new play area arrived!!! We waited 6 months for this!  Palliative care worked VERY hard to get this approved through the Comfort Fund for Special Needs at Mott Children's Hospital!  It's wonderful and perfect!  Lily is enjoying the ledge and being able to read to her big brother <3


Monday, March 10, 2014

For the love of Carter

I never like to speak of good health.  It's kind of like being at work when you are exhausted and someone starts to utter the words, "It's slow today"...and everyone just about falls out of their chairs trying to stop the rest of the words from touching their ears.  No one wants to jinx good luck.  So that is me as I type about our good happenings lately.  But it's too good not to share.  I want to document these good times as well as the tough.  I want our family, friends and well wishers to know that there is indeed days filled with rainbows and unicorns in the land of a special needs family.  We do get sleep, we do go out with friends and have date nights.  We do have great days when all in the world is fine.  We are just like other families, just with some extra bumps along the way; just like every other family in the world.

Lately, Carter has been very present.  Not just physically, but mentally.  He responds to what we are saying, in APPROPRIATE ways.  He seems to know his name again and he smiles when we come in to the room.  We tell him not to bang his head and he stops.  We kiss his face and he breaks into giggles.  When he fusses and we present him with food, he takes it right away.  He has been falling asleep all on his own in the evenings, long before we give him sleep meds.  This may be TMI to some, but in our world, this is breaking news!  He has been going number 2 all on his own, with NO medication assistance...every. single. day.  Not only is he growing in size, but in his cognitive abilities.  These are the moments that we work so hard for and wish for when the days are bleak.  For the love of Carter, we will fight every minute of every day to have more days like these.  There is so much more to a child who has special needs than the needs that we all seem to think are more than most can bear.  There is so much more to families who love for these special kids.  We don't just change diapers all day or monitor medications...we don't just see seizures or lifting as obstacles; we see them as labor of love.  We find joys in every day out of our son, just like we do in our daughters.  Even though we adore our daughters and we are so proud of their every stride, I must say that there is a different type of joy and pride that we experience with Carter.  To see his smiles at appropriate moments or his head bobbing in tune with a song in the car, is like seeing a miracle happen before our very eyes.  Our hearts become so full, we wonder whether our chests will be able to stretch big enough to handle it.  Changing a poopy diaper that most would run the other direction from, is a monumental moment for us.  We celebrate the fact that his organ functions are WORKING like they should.  We see these things as independence for Carter.  We know that he is never totally out of the woods, but we embrace the day.  We don't take any of these minutes, hours, days or improvements for granted.

For the love of Carter, can we get a high five, fist pump and happy dance?!



Monday, March 3, 2014

He knows me!

One of the toughest moments as a mommy to my special boy was when my husband and I returned from a 5 day cruise when Carter was 15 months old.  I knew that he was delayed and that something wasn't quite right, but I could also only see my perfect, beautiful little boy.  Being with him day in and day out, made it difficult to see the severity of his problems.  By day 3 of our cruise, I was in tears from missing him.  I just wanted to get back home and hold him.  I was sure he was missing me at that point.  When we finally got off the ship and I knew he wasn't far away, I could barely contain myself from the excitement of seeing him.  As I lugged souvenirs and luggage to where my mom was with him, all I could do was stare at Carter in her arms.  I searched his face for a glance or sign that he knew who I was or was happy to see me.  He never even looked at me or smiled.  He didn't seem to know who I was.  At that moment, my heart broke into a thousand pieces and my mind shut down.  I cried.  I simply cried.  It was the first time I could see so clearly that something was wrong.  My baby didn't even realize I had been gone for 5 days and if he did, he didn't show it at all.  It was a shock to me.

Now, 4 years later...Carter COMES to me all on his own.  He smiles when I walk in the room, he scoots to me no matter where I am in the room and he reaches for my hands to stand up with me or sit on my lap.  He knows who I am.  Today during therapy, he did everything he could to get to me and avoid doing what his therapist wanted him to do.  He was at school all day, so just wanted his mommy since getting home.  When I kiss his face, he smiles and giggles!  He reaches for my face when I lay next to him.  I can't even begin to construct the right words to describe how amazing it is to see these things.  It's something I waited so long for and was never sure if I would see.  Carter is my true miracle.  I savor and cherish every glance, smile, giggle, effort and acknowledgment that he gives me because I know how hard he has to work to give it to me.  Carter may not be able to talk, but he speaks louder than words.

Friday, February 7, 2014

Terrible 2's and Good Samaritans...

I don't know about you, but I have days...sometimes weeks, when I am so mind boggled that I drive myself insane.  I'd like to think it has something to do with hormones or weather.  I mean, there has to be a reason, right?!  So any way, I wake up yesterday just like every day...with lots to do.  I got Carter off on the bus, took a shower and had my husband help get our daughter dressed for the day.  For once and in over 6 months, I had an appointment to get my hair done (at 9:00 a.m.), so I was roaring to go.  But, of course, we were running behind.  This time, because Lily woke up on the wrong side of the bed and she had plans of her own.  She screamed, kicked and refused to get dressed.  We had to do what all pre-parents say they will never do...we bribed her until she gave in.  A hair appointment is rare and exciting for a busy mom, so I was going to get out that door however I had to.  I told her, "We will go shopping today, okay?"  That worked.  And just like any other chaotic morning, I still needed to get gas, a coffee and cash out of the ATM.  And because I was still lacking my first cup of coffee, it was difficult to map out the faster route to hit these places so that I wouldn't have to back track and burn more time.  But we managed to make each stop with minimal back tracking and get to my appointment.  The musts for my day were to get a few necessities at the grocery store and get Carter off the bus by 3:30.  Getting my hair highlighted and cut took much longer than I remember it usually taking...but when I don't get it done but twice a year, it's easy to forget.  We left my appointment around noon and headed to the store.  Once I arrived, I found my 2 year old fast asleep in her car seat.  Now, we all know that mommy law is to NEVER wake a sleeping child.  Ever.  So I headed back home to let her sleep and I could connect to our home wifi for some Facebook time and quiet music in the comfort of my driveway.  I could tell right away, that the driveway conditions weren't looking good and just as I started to second guess my choice to gun it any way, my van came to a screeching halt and I mean, screeching halt.  I was stuck half way in to my drive way (the back half of my van completely in the street still).  For peets and pickles sake.  Forward, back, forward, back...nothing.  I was STUCK good.  My wonderful neighbor quickly came to my rescue with her shovel, kitty litter and phoned a friend with 4 wheel drive to come help.  A very nice stranger driving by, even stopped to assist us with shoveling.  45 minutes later, I was unstuck. By then, Lily was awake and remembered my promise to take her "opping mommy" but it was so close to Carter's drop off time, that I couldn't take her shopping.  I hopefully promised her that we would go soon.  10 minutes before he was expected home, I noticed a gigantic van stuck at the end of our street (from my couch view out the window) and as the minutes dragged on and it wasn't budging, I decided to call school transportation to tell them I would meet the bus at the McDonalds up the street.  On my way to meet the bus, Carter's physical therapist called to say she was 5 minutes away and would brave our mess of a street.  Conveniently, my still very whiny 2 year old starts screaming for french fries and "opping momma".  I decided against going to that  drive thru since I also got stuck there the day before and headed to the next nearest McDonalds, because as most mothers of terrible 2's will do, we will go to desperate measures for the screaming and whining to stop even if for only a few minutes.  I chatted with my dad on the phone while I drove and vented about the poor road conditions.  About 15 minutes later, the physical therapist called again and asked, "Did Carter's bus run late?" OMG...I forgot the therapist was on her way.  I felt like a total jerk making her wait all that time.  I hurried home and unloaded my children all the way from my curb parking (because I was too chicken to try pulling in the driveway again).  Now, any time anyone is coming over, even the therapists who are here 4 days a week, I tidy and vacuum but that hadn't happened that day.  I was mortified and defeated at this point.  But what could I do?!  I texted my husband that as soon as he got home, I NEEDED to get out the house to recoop from my hellacious day.  As soon as he walked in the door, he insisted that he needed to run to the gas station for salt to throw on the drive way.  I could have cried...10 more minutes felt like hours.  When he returned home, I don't think he even turned his truck off yet and I was running out the door with my coat half on and my hand thrown up in a peace sign as I ran down the drive way to my getaway vehicle!  I left for a good hour to get groceries and pace the canned vegetable aisle.  Anything for some quiet time, right?!  It's amazing what a good, quiet hour can do for your mental stability.  I was lucky that Lily forgot how badly she wanted to go "opping momma".

Today went somewhat the same, except my 2 year old was off to daycare first thing in the morning...which also started in a screaming, kicking, "I don't want to" kind of way.  But after some coaxing and convincing, she was ready to go.  I also got a text from our respite nurse that she was really sick and couldn't come this evening.  A kink in my planned out day, but I knew I could pull off my day any way (no other choice, right?!)  And on top of an already busy day, I woke with a head cold.  Lovely.  Once both kids were out the door, I got a shower and started chores around the house.  Laundry, tidying, vacuuming, kitchen, calendar, and making beds.  11:00 rolls around and I get a text from a friend, "I'm at Panera, are you here yet?"  Oh crap!  I almost forgot I was meeting her for lunch. I threw on a clean shirt, my tennis shoes and coat and ran out the door.  I managed to get there about 10 minutes later.  We chatted and hung out for a couple hours before we both had to go our separate ways.  She also has a special needs child so it was great to share our stories and sincerely understand each others struggles...so good for my heart.  As soon as I got back home, I did another load of laundry, chatted with my grandpa on the phone for a bit and had to hit the road again.  Gas and coffee pit stops on the way.  Because our respite nurse wouldn't be coming to get Carter off the bus while I drove to Marshall to get my step-daughter, I had to pick him up from school instead.  I got him out to the van and all was going as planned when I realized I hadn't unloaded the play kitchen that I had put in the back of the van the day before.  So I mustered all my strength to lift and maneuver the wheelchair into the back on top and beside the kitchenette.  This also meant moving Lily's car seat to the back seat with the bench seat half folded so that KayLeigh had a seat in one of the bench seats.  I made it to Marshall on time and got KayLeigh.  Headed back to Jackson to get Lily from daycare, but first...had to drop off the kitchenette to make room to reinstall her car seat.  Then off to the daycare.  As soon as I picked her up, she was overly tired and wanting to be held. Luckily, daycare is only a block from home so I didn't have to endure the screaming for very long.  Almost as soon as we got home and unloaded, both Carter and Lily fell asleep.  Lily across my lap and no way was I waking her up to start dinner.  So I waited until she woke up (about 45 minutes later) and luckily, her new kitchenette preoccupied her so I could start our tacos.  As soon as we finished eating and I folded one more load of laundry, KayLeigh and I went shoe shopping for her father daughter dance that is tomorrow.  That eventually leads me here at my lap top and typing this crazy 2 days out.  Somehow this evening, despite giving my voice a break, I lost it because of my cold.  No voice at all.  

Not all weeks are this insane, but this just happened to be one of them.  I am so thankful for my helpful husband, trusty mini van, good neighbors and samaritans, coffee, winter boots and tough nerves.  So thankful.