Miracles of the Heart Ensue

It's hard to believe an entire year has passed since receiving the amazing news about Chase's miracle heart.  Having a year without the worry of restrictions has been beyond wonderful.

Christmas time is my favorite time of year...but with it comes with the added anxiety of another heart check up.  After such incredible news last year, preparing for his visit to Texas Children's Hospital was a little more hopeful.  However, the cynical and realistic part of me worried the honeymoon wouldn't last and that we would be met with bad news again.  Either way, I tried to emotionally and mentally prepare myself for anything.

All Chase cared about was the fact that we got to go to a hotel together.  Just the 3 of us.  He went around telling all of his teachers and friends...."Tonight, I get to go to a O-tel on a date with my mommy and daddy." I tried to inform him what the visit to Houston was about...hospital, echo, ekg, etc....he would not listen to any of that.  The hotel was the highlight.  That's all he needed to know.  This time, I scored a sweet priceline deal for a Westin right above the Galleria Mall.  We arrived late, so everything was closed, but our view was killer.  My other kids got to stay with Papa and Meemaw this year and they couldn't have been more excited. 

 There are 2 things Chase LOVES about hotels.  Elevators and breakfast!  Our hotel breakfast didn't open early enough, so we headed over to IHOP.  Chase didn't seem to mind one bit.

It was appointment time.  This year, they got us in quickly.  Chase's echo was smooth as silk.  He is incredibly compliant in these situations...always brave.  He laid there, perfectly still, for 20-30 minutes.  As my heart raced, I didn't dare look at the monitor.  I was way too chicken.  Jeff watched the monitor closely the entire time.  I tried not to read his facial expressions.  I wasn't quite ready to know the results.

Now the EKG and next a visit with the doctor for the results.  Again...sooo cooperative.  The exact opposite of how he is 99% of the time with me (wink).  At least he can pull it together when it counts, I guess.

The moment of truth had come.  Dr. Price is the head of the heart department at Texas Children's Hospital.  We saw him soon after Chase was diagnosed when things with his heart were grim and dire.  We hadn't seen Dr. Price since that fateful day.  Today, he walked through the doors with an entirely different countenance.  The first words he uttered were, "I have no medical explanation for this, but Chase's heart is still improving."  My heart nearly jumped out of my chest.  Chills all over my body.  Another miracle.

Dr. Price proceeded to tell us that Chase's diastolic function is not only better, but now with NORMAL limits.  NORMAL!!  His systolic function is just outside of normal limits.  He recounted how things looked just 3 short years ago and how inexplicably abnormal this scenario is for a child with Chase's condition.  I asked if he had ever seen anything like this and he replied with a resounding "no."  I wanted to shout with excitement.  My eyes welled up with tears.  I couldn't have felt more grateful than I did at that very moment.  Another miracle.

Dr. Price spent a few minutes listening to Chase's heart.  I could sense the wonder as he carefully studied this little miracle.  Chase is a medical anomaly.  When I asked him what we could expect for his future, he just couldn't come up with any solid answers.  Everything about the story of Chase's condition, from the diagnosis to now has been outside the norm.  Dr. Price proceeded to tell us that Chase can continue to participate in sports, PE and recreational activities.  He also told us he didn't feel it was necessary for us to travel all the way to Houston at this point.  We could now follow up annually with our local cardiologist in Austin unless things change.  This is HUGE!!

It blew my mind that just 2 short years ago, we spent our time together in that same office discussing plans for an implantable defibrillator, strategies for cardiac arrest incidences, and a potential future heart transplant.  Life with endless restrictions, medication and worry.  Clearly, Heavenly Father has a different plan for this little man.  It is incredibly humbling and I couldn't be more grateful.

 

Our celebration lunch at Kona Grill

Being cute is hard work

Definition of a miracle:  a surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency.  A highly improbable or extraordinary event, development, or accomplishment that brings very welcome consequences

Feeling so thankful to my Heavenly Father for my little miracle

Defying odds

This little man got to do what we thought was the impossible for him.  He played his first T-ball game.

A sight to behold...

Our very own Christmas miracle

I have always been a believer in miracles.  As embarrassing as it is to admit, I'm a total sucker for those cheesy "Hallmark" Christmas movies that always end it some amazing miracle.  After Chase was diagnosed, people would talk to me about miracles and say things like, "you never know...miracles do happen."  To be honest, I said I agreed with them but admittedly thought in the back of my mind.."only to other people."  I wanted to believe them, to have hope...and I did, somewhat.  The realist in me also wanted to protect myself from sheer heart break and devastation.  I was hopeful, but cautious.  Until about 24 hours ago...

It was our 3rd time heading to Texas Children's hospital for our much anticipated annual appointment with the Cardiomyopathy team.  Did the usual...farm out other children to amazing, willing families, book a hotel on Priceline near the hospital, 3 hour drive up after a long day at work, school with just me, Jeff and Chase.  Little sleep the night before the appointment...wondering how I would react to yet another reminder of Chase's grim future.  Jeff and I always enjoy that special time alone with Chase.  This year was the first year we didn't need to haul a stroller with us.  It was also the first year we could talk to Chase about what to expect at the doctor and actually have him grasp what was coming.  My alarm went off and it was time to get ready to head to the hospital.

About a 1/2 hour into our visit, I had realized it was like every other year.  Long wait in the waiting room, watching other patients wait for their name to be called as I wondered what their stories were.  Somehow I felt connected to each of these parents, without even knowing who they were.  They were most likely there for the same reason as I was...hoping for a miracle.  Hoping that they would get good news about their child's heart.  Tuesday's at the Texas Children's Heart Center were Cardiomyopathy clinic days.  They see children from all over the world with different types of heart conditions and have their entire team of cardiomyopathy specialists working together all on the same floor.  Chase's name was called.  It was finally our turn. 

For the most part, Chase has always been remarkably cooperative at all types of doctor's visits.  Especially his heart visits.  I think this is partly because he has had nearly 15 echo's/ekg's in the last 2 1/2 years.  The nurse handed him a lollipop as they laid him on the table to begin his echo.  They dimmed the lights, put on a cartoon (which Chase never pays attention to for some reason) and began the exam.  This is the part of the series of tests that scares me the most. 

I'll never forget the day they showed me a picture of what a "normal" heart should look like and compared it to his heart from the echo when he was diagnosed.  I didn't know exactly what it meant, but I could tell something was really wrong.  Yesterday, I spent more time keeping Chase happy and was a bit afraid to look at what was on the screen.   Jeff asked the tech a few questions but of course, she didn't go into any detail.  When it was all over, Chase said as he was walking down the hall to wait for his next test, "That was so pun!"  I just couldn't get over his optimism.  He always seems to see the good in every situation.







Next...an EKG and visit with the doctor.  The nurse came in first, asked some questions about how Chase has been over the last year.  We didn't have anything too remarkable to report, which is a good thing in his case.  Talked a little bit about my dad's recent scary heart incident (that's a crazy story by the way) and the nurse left.

Now for the miracle:

A little over 2 1/2 years ago, doctor's initially told us we'd be lucky if we saw Chase's 5th birthday.  A week later, a team that specialized in Chase's condition had a more positive outlook.  They gave us more hope, stating that with current medical interventions, he may be able to live longer than what we were initially told...maybe even through his teenage years.  They told us it would be a long and rocky road and that he would likely need several surgeries (including an implantable defibrillator).  They also told us that with each visit, his septum would continue to thicken, the obstruction would likely get worse and asked us to prepare for the possibility of witnessing Chase passing out with activity.  They even said he was at high risk for cardiac arrhythmia's and even sudden cardiac arrest.  Due to the obstruction in his septum, the doctors told us Chase had to avoid any type of activity that would induce adrenaline release.   So, any chance of participating in competitive sports, roller coasters, and even participating in PE was not a possibility for Chase.  That includes swimming, tennis, basketball, baseball, etc.  The thought of having to tell my little boy that he couldn't participate in the things that his older brother participates in haunted me, daily.  Yes, he is only 3 now but soon he will be 4, and eventually 6, 7.  How would I ever have this conversation with him?  "I'm sorry, Chase, but you can't play basketball.  But why mom?  Because if you do, you could collapse and die..."  I know, sounds so morbid and of course that's not exactly what I would say, but it was the truth.  The unknown of when, where, and would I even be by his side when he did collapse so I could save him.  These constant fears literally ate me alive. 

Well, our miracle came when the pediatric cardiologist sat us down and told us that Chase's heart was somehow improving.  At age 1, when Chase was diagnosed with Hypertrophic Obstructive Cardiomyopathy, they classified his condition as moderate to severe.  His septal thickness was more than 12 standard deviations from a normal size heart for his age.  Yesterday (at age 3 1/2), his septal thickness was LESS THAN ONE standard deviation from normal.  In essence, his heart at this moment is only slightly thickened in a couple of spots.  In fact, his measurements would classify his heart as almost normal. They downgraded the severity of his condition from severe/moderate down to mild.

Once I picked up my jaw off the floor, questions started flooding my mind.  How did this happen?  Are you sure?  Can this happen?  What does this mean for Chase?  His future?  But they told us it could only get worse.... that the best case scenario is no change to his heart?  Are you telling me this is a miracle?

Well, I am here to tell the world, Yes!  Miracles happen!  Prayers are answered.  The doctor seemed just as perplexed and surprised as we were.  He had no explanation.  He proceeded to tell me that not only has Chase's heart function improved, but there is zero notable obstruction.  He then said that we did not need to increase the dose of his beta blocker and that he was cleared from physical restrictions.  He could now participate in swimming, running, maybe even some t-ball.  In fact, he even said we didn't need to have Chase follow up with a cardiologist for an entire year.  I was thrilled beyond belief!  After a long conversation, a lot of questions and answers and some reassuring, we shook hands with the doc and he walked out of the room.  My eyes welled up with tears.  I couldn't quite process what had just happened.  Jeff was in disbelief too.  We both just looked at each other, stunned...not quite sure how to react to what had just happened.  Could I actually exhale for the first time in 2 1/2 years?  I grabbed Chase, hugged him, hugged Jeff and tried to fight back the tears.  Many silent prayers were said those few moments later.

We couldn't contain our excitement for the 3 hour drive home.  We talked about all of the possibilities in our near future.  We talked about scheduling a snow ski trip next year and how awesome it would be that Chase could participate with us.  We called close family members to share the news and cried with them as they shared in our excitement.  We couldn't wait to tell our other kids.

Ethan, Hayley & Brooklyn...oh my how I wish I had an ounce of their faith.  For the last 944 days, you would hear each one of them utter the words in a prayer, "please bless that Chay Chay's heart will feel better."  As Chase learned to talk and say the dinner prayer, he would bless the food, the wall, the plates, and every item he could see in front of him but the second he tried to end his prayer, one of his sisters or bother would quietly interrupt him and say, "Don't forget to bless that your heart gets better."  It was just so sweet.

Last night, within seconds of walking in the door together as a family, we gathered all 4 of the kids around us and told them we wanted to talk to them about Chase's appointment.  Ethan, Hayley & Brooklyn's eyes filled with fear so I quickly uttered:  "You know how you've been praying every day that Chase's heart would get better?  Well, your prayers worked!  Heavenly Father answered every one of your prayers because his heart IS better.  Thank you so much for your faith."  Their eyes began to water and we threw our arms around each other and had the tightest family hug I can remember.
At that moment, I knew that we had a Christmas miracle of our own. I am so grateful to my Heavenly Father for this miracle. 

Chase is far from out of the woods and things could change at any time, but for now...I will just relish....

Learning more

This poor little man can't seem to catch a break (no pun intended).  He is so close to being able to walk on his own (will be 2 years old next week) and he broke his foot.  The worst part, I'm not quite sure how it happened.  We were at Hayley's soccer practice and he and the other kids were playing on the playscape.  Chase was crawling up the stairs and next thing I know, he's on the ground holding his foot.  Within a few hours, he was weight bearing on it.  The next day, I took him to the doctor and he said he thought it was fine.  10 days later, he was still limping so I took him back to the doctor.  This time, they X-rayed it and sure enough, BROKEN!  Poor guy had been trying to walk on a broken foot for 10 days.  So, what have we learned from this experience?  Chase has an extremely high tolerance for pain.  The Orthopedist decided he needed a cast all the way up to his thigh.  Since he can't really walk yet or even drag that crazy heavy leg across the floor, his physical therapist was able to hook us up with a pink wheelchair.  There will be many pop a wheelie's and sponge baths in our future!

My little dare devil

Walking is so overrated!

Progress

I know, I know...5 months with no update.  I have a million reasons why but the fact of the matter is...I can't get my thoughts straight.  So, before I start gushing about what I have been and am currently feeling over the last 5 months, I guess I'll start with the logistics of what's been going on.

Houston was an okay experience.  We first met with the geneticist.  Overall, great appointment.  We were treated well and really liked the doctor.  Unfortunately, I left with many more questions than I came with.  It's just all so confusing.  I am coming to the realization that Chase's condition has a lot of gray area.  To hear a very well trained specialist say that there is a good chance we will never find out why Chase has what he has or where it came from is a bit frustrating.  He talked about several genetic tests and muscle biopsies we could run but ultimately, he thinks we should bypass all of those tests and just decode his entire genetic makeup.  The catch is, it's EXTREMELY expensive, and there's a good chance the test still won't reveal where the mutated gene came from.  Knowing why or where his heart condition came from will never change the severity of his condition.  It won't create some sort of cure either.  What it will do is allow the rest of us to be tested for that particular mutated gene to determine if we are carriers.  My other 3 kids had echo's and ekg's soon after Chase's diagnosis and show no signs of hypertrophic cardiomyopathy, but they will still need to be tested every couple of years because they could still be carriers.  So, for now, we've decided that we will eventually do the full human genome sequencing but we are going to wait.  5 years ago, the test cost $40 million.  They've come a long way since then (about $10k now) and have made some amazing technological advances.  They improve the test every year, so we are going to drag our feet so we could save money and hope that we will get better results by waiting.

Just a little over a month ago, I was blindsided by the news of a young man, only 18 years old, that passed away of the same heart condition Chase has.  Click here to view the story.  I just happened upon the story one day as I pulled up my yahoo page.  As I watched Ben Breedlove share his story through handwritten cards, I felt like I stopped breathing.  I remember having to remind myself to inhale and exhale as his story unfolded.  As I learned more and more about him and what he'd been through in his life, I felt such sadness yet such hope at the same time.  He grew up and lived only 15 minutes from my house.  I stumbled upon that video only hours before his funeral would air on the internet.  He was such a great example of someone that was able to live a happy, fulfilling life regardless of his heart limitations.  Every time he'd crack a smile during the video, I felt so much peace.  Such a heart wrenching and inspiring story.  Just a little too close to home.

Okay, now for spilling guts.  I still remain an emotional roller coaster.  I am learning to accept the fact that I probably always will be.  Most days, I deal with it just fine, but every now and then I find myself tearing up at the most random moments.  The hardest part for me is the uncertainty of this disease.  For the first time in my life, I'm pretty darn scared of my future... of Chase's future.  I have learned over the past couple of months that throughout Chase's life, it's not a matter of "if" he has a life threatening heart moment, but "when."  Most kids with his same condition have several incidences before they get through their teenage years.  I just don't know how to wrap my brain around the fact that there is a very good chance I may see my son collapsed on the floor, not knowing if he'll live or die.  I'm sorry if that sounds morbid, but it's what haunts me every day.  The thought is always hanging in the back of my mind.  I never dwell on it because it just makes me sick to my stomach, but I'm trying to learn how to cope with the fear.  The anticipation is what eats me alive.  I understand that anyone could pass away, at any time...but living with a child that has a "severe" risk of cardiac arrest is debilitating.  It's been nearly 9 months since we found out but it's still so fresh in my mind and heart.  I'm trying to let go...but something is holding me back from just accepting that no matter what happens, we'll make it through.    

The good news in all of this is that regardless of my fears, I have been able to enjoy him so much.  I hold back absolutely nothing when it comes to loving Chase.  Or any of my children for that matter.  My kids KNOW how much I love them.  Yes, they drive me nutzo's at times, but I just love them.  I know my Heavenly Father is watching out for our family.  I can feel it in the details of our lives.  I know my Savior is carrying me through this trial.  No other soul knows exactly how I feel.  I find comfort through Him.  It's the only way.

As for Chase, he's definitely making progress.   He sees multiple therapists that come to our home each week.  My favorite is his physical therapist.  It's been a long road over the last 7 months in therapy getting him to this point, but he is finally starting to take his first steps at almost 22 months old.  He's been wearing braces on his ankles that prevent him from locking his knees.  We have learned that his low muscle tone has affected his ability to weight bear and has really slowed his physical development.  He is pretty significantly delayed both cognitively and developmentally but I have come to realize through it all just how hardworking a motivated such a little guy could be.  Chase is bursting with personality and makes me laugh every day.  I've never seen a child his age so intense in the way they approach life.  I just adore him.

Chase working with his Physical Therapist

So close to independent mobility

We are finally getting Chase to weight bear on his legs with this cool little contraptions.  Been many months of physical therapy leading up to this point but I think he's making some great progress.  He is 21 months old and for some reason, just prefers to use his upper body to transport himself from place to place.  As you can see from the drool on his shirt, he keeps my floors spic n span as he drags his body across my tile.  It comes in handy!!

In the picture to the left, you can see he wears special braces for his feet.  They help prevent him from locking his knees when he tries to walk.  So proud of my little man.  Things are slow going but he rarely complains.  Keep it up Chasers!

Anticipating..

We leave for Houston tomorrow for a much anticipated visit with a geneticist and pediatric cardiologist.  I have a million things to do to get ready.  It's 9:30 pm, I haven't even begun packing.  My mind just won't stop racing.  Ethan said something tonight that stopped me in my tracks.  I haven't been able to function normally ever since.  He said, "Mommy, do you want to have any more kids?"  I explained that I am not able to have any more kids because my body couldn't handle it. (4 C-Sections and a very thin uterus lining).  I then asked him why he wanted to know.  "Well, I want you to have another boy so I could have another brother."  I said, "But Ethan, you already have a brother."  "But, mom..he has a heart condition and can't play sports with me.  So, I need another one that I could play sports with."  My heart sunk with sadness.  I know that Ethan isn't old enough to really understand what's going on.  It's a lot for a 7 year old to comprehend.  After a big gulp, I began to explain to Ethan all of the things he would be able to do with Chase.  He seemed satisfied and quickly moved on, but I just can't stop thinking about it.  Just last week, Ethan said, "Mom, I can't wait to die."  "Ethan, what are you talking about?"  "When I die, I get to be with Chase and his heart will be better so I can play sports with him in Heaven."  Such a heart wrenching and sweet moment, but, how do I respond to this?  I feel like for the first time since I became a mom that I'm completely winging it.  I feel so inadequate, so ill-equipped.  There are so many questions in my mind about Chase that are unanswered. 

Just venting.  I wasn't expecting that one tonight.

So, tomorrow we embark on a journey to one of the top cardiomyopathy centers in the world.  I have no idea what to expect.  We are hoping to get a lot of answers and even more good news.  

Chase, I know you don't understand or know this quite yet, but you are one very very loved little boy.  Your brother and sisters fight over who gets to play with you every minute you are awake.  Your dad lights up just at the very sight of you.  Your radiant and very silly smile is infectious.  As challenging and stubborn of a stage you are in right now, my heart is bursting with love for you.  I want nothing more than to protect you from hurt, from pain, from sorrow or sadness.  I will do everything in my power to make sure you always know just how special you really are.  I am so blessed to be your mother.  You made me a heart mom...and I am one of the lucky ones.

A much needed update

We are adjusting little by little to this new life...both life here in Texas and to the reality that is our new life navigating Chase's condition.  After a crazy move, some welcomed visitors and many other acclimations along the way, we are finally approaching the ever sought after "settled in" feeling.  The process of moving just plain sucks.  This is our 8th move in 10 years of marriage.  You'd think we'd be pros by now.  But..each move becomes more challenging.  We've added a child to each of our last 4 moves and with more children comes a lot more stuff!

So far, we really like Austin.  Chase is really enjoying having more crawling space and has shown a lot of improvement in his mobility since we moved 5 weeks ago.  He has already seen 3 different doctors since we've arrived and is scheduled to see the Cardiomyopathy team at Texas Children's Hospital in Houston at the beginning of September.  I am quickly coming to the realization that Chase and I will spend much of our time together at doctor's offices.

As for an update on Chase's condition, we have learned many things.  First of all, some genetic testing results have come back from his initial visit to Dupont Hospital.  All of the gene panels taken have shown no genetic link to his hypertrophic cardiomyopathy.  In other words, so far he has not been identified as a gene carrier for the disease.  While this is good news, it also raises many more questions....why does he have this?  Is it a symptom of another disease or condition?  Our new pediatrician here in Austin brought up the fact that he may have muscular dystrophy.  Chase is older now and is really starting to show many signs of physical developmental delays.  His core and leg muscles are very week.  He is 16 months old now and is not able to weight bear yet.  In fact, when pulled up to a standing position, he locks his knees every time.  He still topples over pretty easily too.  This is where the muscular dystrophy comes into play.  After my visit with the pediatrician, I came home and spent some time on the internet researching muscular dystrophy.  My search left me completely heartbroken.  One of the 1st symptoms listed under MD was cardiomyopathy.  At this point, I was convinced that his cardiomyopathy was only one problem we'd be facing regarding Chase's health.  So, per the pediatricians recommendation, I scheduled an appointment for a neurologist.  

We were able to get in to see the neurologist quickly.  After examining Chase, he noticed he had some muscle weakness (hypotonia).  He didn't think it was anything too drastic but definitely wanted to do some further testing.  The neurologist didn't even bring up muscular dystrophy...and I couldn't get myself to ask.  I was too afraid of what he might say.  He said he wasn't sure if his hypotonia was connected to his cardiomyopathy.  There are still so many questions.

A week later, we met with the pediatric cardiologist here in Austin.  He was very interested in Chase's condition and history.  I finally got the guts to ask him about muscular dystrophy and he immediately said that he didn't think Chase had it.  Apparently, it is often associated with Dilated Cardiomyopathy..which is not what Chase has.  A huge sigh of relief but nothing is ruled out quite yet.  After doing another Echo and EKG, the Cardiologist was happy to see that there were no changes.  With Chase's condition...no change is the best possible news we can receive.  Since his heart is a muscle, and muscles only grow larger over time...no change means his heart is not getting thicker.  This will change as he goes through growth spurts and becomes a more active little boy.  It's kind of a catch 22....I want him to walk, but am fearful that it will speed up the process of his heart growth, due to an increase in his activity. We are looking forward to meeting with the team of doctors in Houston in a couple of weeks that only see patients with cardiomyopathy.  They will be able to offer us a lot more insight on what the future holds for Chase.

Chase also had his first physical therapy appointment last week.  His therapist was phenomenal.  She had Chase pulling himself up to a standing position within minutes.  She was very encouraged that he would be walking soon.  The next milestone is to get him to feel more comfortable on his feet so he can start cruising. 

So, that's the Chase update.  It's been a crazy month an a half but overall, I couldn't be happier about the move, about the care that Chase will be receiving and about all of the blessings that we've received.  The members of our church have been very welcoming and helpful.  Our neighbors are great as well. 

Although things are well, I can't help but continue to grieve the days that I didn't have to obsessively worry about tomorrow.  Chase's condition brings about so many unknowns.  Every time he has a doctors appointment, I am reminded how severe his risk is of cardiac arrest.  The thought makes me sick inside, but I push it away so that I can dwell on his life...not his risk of dying.  It's so easy for others to say that everything will be fine, it will all work out.  As hopeful as I am that Chase will live a normal life, I already know that his life will never be considered "normal."  He has a remarkable condition and will always live a remarkable life.

As a result of Chase's "big' heart, my heart has grown big in ways I never thought possible.  I love more fervently than ever before.  When Chase smiles, my heart practically bursts out of my chest.  It's a feeling I've never experienced.  I now experience this phenomenon will all of my kids...and it's all because of Chase.  I feel like I finally have a little glimpse of how much our Heavenly Father and Savior love us. As difficult as this road has been and will continue to be for the rest of our lives...I am so grateful for this trial.  I continue to be grateful for my new perspective.  Life is precious.  Children are precious.  Families are precious.  I'm so glad that my heart is swelling along with Chase's. 

Roller Coasters

I grew up only about a half hour away from several theme parks (Disneyland, Knott's Berry Farm, etc.) and remember as a young girl feeling the anticipation and adrenaline rush as I would stand in line for a roller coaster.   There is something about the smell of churros and funnel cakes, sounds of distant screams, and atmosphere of excitement that makes me giddy inside.  In fact, if you asked me when I was a young woman what some of the qualities I'd look for in a future mate, you'd better believe that a "love of roller coasters" would have to be on the list.  I always knew that I wanted to have an even number of kids so that everyone would have a buddy to sit by on a roller coaster.  Strange, I know. 

People who know Jeff and I really well know of our absolute obsession with roller coaster's.  There is not a roller coaster out there that we wouldn't love to try.  While living in PA, we spent 2 summer's taking many trips to Six Flags Great Adventure both as a couple and as a family.  I recall dragging several of my friends on rides with me despite their kicking and screaming with hesitation.  I couldn't be happier when I started to see the same love of roller coaster's start to grow in my oldest son, Ethan.  In fact, last summer at 6 years of age, he rode this:

So, why all this talk about roller coaster's?  Honestly, they've been on my mind a lot lately.  I've had many conversations over the last 3 weeks about our recent news regarding Chase's heart condition.  Many people have expressed how grateful I must feel that I found out about his heart before it was too late.  It's all true.  I am so grateful.  It would have been the most devastating thing to find out something was wrong without even having an opportunity to intervene.

What I couldn't figure out was...why am I still so sad?  He's still here with me.  I get to hold him, kiss him, play with  him.  What is my deal?  While talking to one of my best friends, she said something to me that made so much sense.  It helped me pin down why I was feeling so sad even though Chase is still here..and doing well.  

I'm not mourning the loss of Chase.  I'm mourning the loss of the life I thought we'd have.

Chase will never be able to ride a roller coaster.  Because of his heart condition, he will never be able to be an active little boy.  He will never be able to play basketball, soccer, football.  I know, I know.....there's always golf, music, art, etc.  While that's all true, it still sucks.  All of the things that I love to do involve being very active.  I've always dreamed of water ski trips, snow skiing vacations, hiking, swimming.  How do you tell a boy that he can't be involved in things that they innately want so badly to be a part of?  In the not too distant future, Chase will probably ask, "Mom, can I play on a soccer team like Ethan?"  How is explaining to a little boy that they can't play sports part of living a "normal" life?  It's going to break my heart watching him sit on the sidelines as he watches is 3 older siblings fulfill some of their dreams.

Please know that I realize that sports aren't for everyone.  It's hard for me to imagine that because sports was my life growing up.  I realize that my dreams aren't my kids dreams.  I have never been that parent that expects my kids to do what "I" hope for them to do.  The irony in all of this for me is that of all 4 of my kids, I can already tell that Chase has the least amount of fear.  He watches his older siblings ride their bikes, swim, run...and I can barely contain him in my arms.  He's not walking yet but I can tell he just wants to take off.  He has no idea yet that he will only know a life with medications and limitations...not sports.

I have no doubt that Chase will rise above.  In fact, he may not even care about sports.  There really is so much more that life has to offer.  I am selfishly putting words to the sadness I feel in my heart for Chase.  I just want him to be happy.  I don't want him to ever have to be held back from anything he desires in life.

Today, I just feel like complaining.  The day to day things have become so much harder.  Watching Chase sleep and not wanting to leave his side to even take a shower, having to explain his condition when he looks perfectly healthy, endless doctors appointments, waking him up in the middle of the night to give him his medicine, the constant worry that I'll not hear my alarm and miss a dose, visits to the ER every time he even gets a cold, wondering about the future and if there will even be one, spontaneous bouts of tears.  It's just all so overwhelming.  

This is where the roller coaster comes into play...again.  MY EMOTIONS.   They are all over the chart.  One day, all I feel is gratitude.  In fact, most days...all I feel is gratitude.  I am willing to give up or sacrifice anything for my kids.  If I never get on another roller coaster ride again in my life so that I can be there for Chase...so be it.  Doesn't mean that it's still not hard.  I am trying to learn to walk forward with faith and with a grateful heart, always and in all things.  I know without a doubt that my Heavenly Father has a plan for my family.. that it is His plan.  Not mine.  His plan will always be better than my own.  Every single time. 

I am grateful...but I am also mourning.  I'll get over myself tomorrow.  I just wanted to vent.  Thank for being patient with me.

I can do hard things...  (after I hug my kiddos and go take a much needed nap!)