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.