What an emotional roller coaster life with half a heart sometimes is. This past week has been on as the good the bad and the good and the bad have come been a part of it. So much thought and emotion goes into each part of the good and each part of the bad. Fears creep and then leave, sadness and joy all at once. EX-HAUST-ING!
Here's what happened.
Good (Part 1): I have been working out a lot and am starting to see results. I am pushing my self little by little (with-in my own limits) and really taking care of my body. I am proud of me and I feel and SEE healthy and fit. (I'm getting ab muscles...MAJOR milestone!) I even impressed my sister with my 5 push-ups. Don't judge...5 is VERY impressive for people with half a heart! ;) But then...things do downnnnnn....
Bad (Part 1):The fiance friend of my sister's died this week from a heart condition that he had that was worsened by a panic attack. He was in the hospital for several days in Boston (the mecca of hospitals!) where he had several procedures and operations and eventually died from complications because of his heart condition. It was something to do with the right side of his heart. As the days went on and my sister was giving me updates about his condition, I felt fear...that one day...that would be me. That just like him life would be going good and one little thing will go wrong and it's down hill from there. I know I can't think like that I know that it could have happened hundreds of times already and God has spared me but the uncertainty of my future with this condition is always in the back of my mind. Sometimes, like this week, I get to the point of..."why get married ever? I cant' do that? I'm just going die young. Why have kids? Can I even have them? Probably not!" It's nights like these where I sit up and just talk to God and thank Him endlessly for the amazing life he has given me so far and tell Him how much I need Him and remind myself of His promises to me. That's when the roller coaster starts to go back up...
Good (Part 2): It took a few days to finally talk myself back up and a girl in my class tells me that she noticed my scar today (my scar is VERY high...I was NOT wearing a low cut shirt....thank you!) and that her brother has a cardiac condition. She doesn't know what it is, but it's something to do with one side of his heart! I was so glad that she came and told me that. She said that she was going to tell her brother about me and let him know that I'm a teacher. The bell for the change of classes had just rung so I didn't get to talk to her much but I LOVED the fact that her sharing with me, and me sharing with her made us not only connected more...but brought joy to both of our lives! I came home happy only to be reminded of the most annoying part of life with half a heart...DOCTORS!
Bad (Part 2): I came home for work to find that my mother had researched a new cardiologist for me. The one I had since birth retired a few years ago and he sent me to a GREAT one that decided to MOVE last year. I was NOT happy about my first doctor retiring (I cried) and just when I was starting to like the new one...he up and leaves. RUDE! So now I'm on the hunt for a new one which means moving 26 years of medical records, new tests...new doctors and nurses...new offices...new locations...and possible changes to my routine meds. And I feel like I'm going to be tethered to a doctor FOREVER. What if one day I move? I have to do this again?? NOT cool...
So this has been my emotional roller coaster for the past several days. It's a vicious and repeating cycle and I've come to just accept it as part of my life. Half hearted-ness comes with uncertainties and unanswered questions...and gaurentees are few and far between. I am doing my best to accept those facts and to lean on God and his certainties .PROMISES and remind myself that even though I may not know what the future brings...I know the one who holds my every moment and He will NEVER let me know or let me slip out of His plan if I keep my heart (all half of it) focused on HIM! Well... I have to get ready for tomorrow and my nightly chat with God. :)
7/15/13
Humidity is NOT my friend.
Summer is my FAVORITE time of year, my FAVORITE season. The one and only thing I dislike about summer is the HUMIDITY. For some reason, in my world, Humidity + Half a Heart = Tiredness, Irritability, and Shortness of Breath. 3 things that are not fun by themselves, nor together and often not fun for the poor people I live with.
I remember being little and literally wanting to sleep away the summer days, crying when I had be outside without being the pool or sprinkler, and having my mother practically shoving water and juice down my throat to keep me hydrated. Thankfully I have been BLESSED with air conditioning in my room since I was a baby. With out it, summer nights would have been very difficult for me.
As I've gotten older I've realized how much more I can survive. My tolerance has grown (a little) and I remember feeling proud that I had survived a few nights of no power one summer. I slept in a giant T-shirt with a cold wash cloth on my head and on my neck but...I survived. I survived. Since that one night, I think that I have talked myself through MANY things with that mantra. I can survive. The even GREATER part is that even when I feel OPPRESSED by the heat (or life) when I'm tired (of life) when I'm irritable (with life) and my breathe (and patience) is short...I can SURVIVE because I know I have God on my side. He will NEVER leave me or forsake me and he will sit in the humidity with me until it's over...until I've "survived".
That's all. It's hot. It's humid. And I'm tired...
I remember being little and literally wanting to sleep away the summer days, crying when I had be outside without being the pool or sprinkler, and having my mother practically shoving water and juice down my throat to keep me hydrated. Thankfully I have been BLESSED with air conditioning in my room since I was a baby. With out it, summer nights would have been very difficult for me.
As I've gotten older I've realized how much more I can survive. My tolerance has grown (a little) and I remember feeling proud that I had survived a few nights of no power one summer. I slept in a giant T-shirt with a cold wash cloth on my head and on my neck but...I survived. I survived. Since that one night, I think that I have talked myself through MANY things with that mantra. I can survive. The even GREATER part is that even when I feel OPPRESSED by the heat (or life) when I'm tired (of life) when I'm irritable (with life) and my breathe (and patience) is short...I can SURVIVE because I know I have God on my side. He will NEVER leave me or forsake me and he will sit in the humidity with me until it's over...until I've "survived".
That's all. It's hot. It's humid. And I'm tired...
6/19/13
Birthday Eve
It's the eve of my 26th birthday and this often for me brings mixed feelings and emotions and thoughts. I have thoughts like...'Well I made it another year with half a heart!' or 'I think I felt healthier this year than last year...' or 'What if this is the last year I am healthy?'. Silly fears and feelings creep and I quickly talk them down by reminding myself of all that God has spared me from, done in me, and allowed me to live through and experience. I like to reflect on the past 26 years with my half a heart and look back particularly at this last year and pick it apart piece by piece to see what was good and was bad. (Clearly I over analyze...)
I can't imagine what it must have been like for my parents 26 years ago today when they thought they were about to welcome their perfect little baby girl into world...and out came me. Blue and medical problems GALORE. From that moment I haven not stopped causing chaos and making them go crazy although...now I do it by choice! ;) A few moments asked I told my dad, "What were doing 26 years today? Did you ever think that I would be..me??" I often ask this question and he always has the same answer, "No, I didn't know anything but God made it clear that you weren't mine from the beginning. You belong to Him and I've done my best to raise you like I believe He has called me to." Good answer dad. (He's so smart!) The same question my parents had 26 years ago tomorrow is still a question in the back of my mind...Are my days numbered? If so for how long? And what is my purpose on this earth if time is shorter for me than for others? And if not shorter...it's certainly more difficult for me than many. Why?
I don't like those questions. I avoid them but this past year I have searched for those answers. I haven't found not a...single...one.... and yet maybe, just maybe, that is the answer. There is no answer. For those of you who know me. Answers like, "Because I said so!" and "There is no answer" or "You'll never really know." do NOT cut it for me. I NEEDWANTHAVETOMUST know. But that is where this year has God has put me in my place. (I am mostly thankful for that because SOMEONE has to!) God has shown me that the answers I search for, those same answers my parents searched for 26 years ago, can be summed up in simple three simple words. Faith. Hope. Trust. I have immense faith in Him, I always have. Even when I tried to pretend I didn't, I did. I have hope that the desires of my little half heart will happen because He knows them. He cares about them. He sees them. He sees me. How you can not have hope when I know that the God of the UNIVERSE sees me. He LOVES me. Wow... And I trust. That's the hardest one. It's hard to trust for me because from the beginning people have been poking, prodding, sticking needles in me, taking me to doctors...people who I trusted to protect me, to give me answers, to provide a way out or a reason...through no fault of their own have been unable to do so. That is where trusting in God comes in. I must trust that HE is bigger than ALL of that and ANY of that. Obviously God and I are still working on this one and although we have far to go...we have come far. (Well, He's there...it's me who need to catch up!)
This 26th year, in my search I did a few things to help with my quest. For one, I started this blog. Here at least I can write out my thoughts and feelings. And although I haven't really been to good with keeping it up...I have enjoyed at least getting out of my head and my heart and putting into some logical sequential sentences! :) Another thing I did was I was able to share my story via FB during February (HEART MONTH) and use pictures and quotes to make people aware of the life long effects of having a congenital defect. Many people who have known me forever didn't know the extent of my story and countless people have thanked me for sharing! Thank me for blowing up your newsfeed with my baby pictures?? You're welcome I guess! :)I also went to the gym more regularly than ever and feel for the most part healthy. (Not going to the gym is more about being lazy...) The most exciting thing (to me at least) is that I went to talk to a class about my condition! My friend is a high school biology teacher who has an anatomy and physiology class and she asked me to come to share my story from a patients perspective! It was AWESOME! I just shared the story of little me and even though it was much, I felt like somehow the fact that I was standing there talking to them had to be a testimony. Of course it was a public school so I didn't get to share much about my faith and it's role in my story but afterwords MANY of the students said that (on their little questionnaire she gave them) the thing they would remember most was how amazing it was I was alive and standing there to talk to them. I felt in that moment...satisfied! As small it was, that was so purposeful. For me. It was from God, for me. And one more step in the direction of complete faith, hope, AND trust.
As I reflect on 26 years of life and entering my 27th and although I believe that I will have many more, I know that if I don't that has to be okay. It's me and God. Yes my parents and my family are in it too but mostly it's me and God. On Monday morning I woke up with the following song in my head. I think we sang it Sunday in church but even if we didn't..I KNOW that God reminded me of this song this week to remind me that just like from Day 1 of my adventure here on earth...I am His!
<3 class="goog-spellcheck-word" span="">Emily
(If you don't want to read the lyrics or don't know the song, you can click here for the YouTube Version )
"Love Came Down"
If my heart is overwhelmed
And I cannot hear Your voice
I hold on to what is true
Though I cannot see
If the storms of life they come
And the road ahead gets steep
I will lift these hands in faith
I will believe
I'll remind myself
Of all that You've done
And the life I have
Because of Your son
[Chorus]
Love came down and rescued me
Love came down and set me free
I am Yours
Lord I'm forever Yours
Mountains high or valley low
I sing out and remind my soul
I am Yours
I am forever Yours
When my heart is filled with hope
Every promise comes my way
When I feel Your hands of grace
Rest upon me
Staying desperate for You, God
Staying humble at Your feet
I will lift these hands in praise
I will believe
I'll remind myself
Of all that You've done
And the life I have
Because of Your son
Love came down and rescued me
Love came down and set me free
I am Yours
I am forever Yours
Mountains high or valley low
I sing out and remind my soul
I am Yours
I am forever Yours
I am Yours
I am Yours
All my days
Jesus, I am Yours
[x2]
Love came down and rescued me
Love came down and set me free
I am Yours
I am forever Your's
Mountains high or valley low
I sing out and remind my soul
I am Yours
I am forever Yours
[x2]
Yeah, I am yours, I'm yours, I am yours
Jesus I am yours
1/22/13
Breathe In...Breathe Out...
This morning I was running around like a crazy person, as usual, getting ready to leave for work and trying to be on time and in the midst of that my dad called me and asked me to put the garbage pails at the top of the drive way so I ran up the driveway, garbage pail in tow (which is bigger than me) put it at the top and ran back down to my car. When I finally buckled my self in my seat I realized how out of breath I was and so before I drove away I stopped and HAD to catch my breath. As I was sitting there I realized how much of my life I've spent out of breath...
My half heart can only get oxygen to my body so fast and when I rush and run and use up a lot of energy, I get out of breath. When I was first born I was purple and after my first surgeries I was finally able to get oxygenated blood to my body. That doesn't change the fact that as my heart and lungs work hand-in-hand, the harder my heart as to work to; the harder my lungs have to work as well. So, out of breath is a way of life for me.
Obviously I'm not a runner. I've tried to run and that never ends well. I played sports when I was little (soccer) with my dad as the assistant coach so he can take me out to catch my breath when I needed to. My sister and I used to have "races" around the house, but she used to give me a head start...and then still beat me. The humidity has been hard on me too, it's hard to breath on humid days (or when I take too long and too hot a shower...). Although I skipped most of gym in middle and high school with a "doctor's note" but that doesn't stop me from liking sports and wanting to play. In college I played Intramural flag football and soccer, I and still love to play when I can. Of course my breath leaves me quickly and I have to stop and take a break. I've learned my limits and how far I can push before I start to "hurt". To by quite honest, running is invigorating (for all you "intellectual" types it releases endorphins...and those make you happy) so I like to pretend I can run; even if it's just for seconds.
I remember one time I was in London with my church and we were in the Underground. We got off our stop and had a HUGE flight of stairs in front of us. Everyone started to run up the stairs as fast as they could singing the "Eye of the Tiger" song and pretending they were Rocky. I knew that my chest would heart after and I knew that people with me would "freak out" when they saw me running (because...I'm very 'fragile' to many people...we can talk about THAT another day) but I made a decision to do it. I ran up each and every one of those stairs! I pushed myself and felt like I was flying. Did my chest hurt after? Yes. Did I need to sit down and catch my breath? Yes. Did I laugh and enjoy every second of it? YES! As I've grown up I've had to learn what "worth it in the end" really means and this was one of those times.
My faith in Christ runs deep, and I know that because He has my heart (as he's had since first created it) I will be with Him in Heaven one day and when I get there, I will have a perfect body, free from any pain or disease or congenital heart defect and once that happens...I plan on running FASTER than the wind...
Emily
1/21/13
The Story of Me
So I have decided to write this blog to tell my story. As the title states I have half a heart and this blog is going to be my way of sharing my story with....any one who wants to read it. I have known that what I've gone through, what I still go through has a greater purpose then just a good "survivor" story. God has given me so much more than life and I want to share that too...with anyone who wants to read it. So, here it is. The story of me.
I was born in June 1987 on Long Island. I was the first child of my amazing parents Jayne and Gerard. My mother was induced because I was late and shortly after they did an emergency C-Section because they were not happy with my heart rate. Upon my arrival I was blue and at first they thought it was because the cord was wrapped around my neck 3 times but once that was undone and I started to cry, I turned purple. Bright purple. I was taken away immediately and my mom never even got a chance to hold me.
They ran tons and tons of tests and decided then rushed me off to St. Francis Heart Hospital in Roslyn NY. My dad and my grandpa followed behind the ambulance and my grandma stayed with my mom. At St. Francis my dad met my Cardiologist; Dr. Rietman. From the moment my dad met him, he gave my him peace and reassured my dad that my he didn't fear for my life. More tests revealed that I had an ASD and Tricuspid Atresia. In non-medical terms that means that I have no Right Ventricle and a hole in my Right Atrium that was allowing the mixing of oxygenated and deoxygenated blood and sending it through my body. (Hence my bluish/purple color.)
My dad went back to visit my mom to be with her, as I was being taken care of by excellent doctors and nurses and aunts who have never left my side. He made a quick stop to eat with his parents first, to celebrate his first Father's Day. :)
After two weeks I was finally allowed to go home after a plan had been put in action. I was a purple, sickly baby who put my parents through...a TON. At 2 months old I had a shunt placed in my back to redirect the blood flow and my purple color disappeared. A two years old I had another shunt put in on the other side. But I was still sick. Walking up the stairs was an effort that made me out of breath. I got sick a lot and when I did, it was flu like. Blood work, IV's, and pills the size of fingers were a way of life for me. I slept a lot and tired out easier than most 2 year old. At this point my sister had been born (she is 13 months younger) and she was just as big as me, faster MUCH more energetic than I ever could be.
Shortly after I turned 3 my family, (uncle and grandparents included) treked to Boston Children's Hospital where I had open heart surgery. The doctors did what is called a Fontan Procedure. In simple words, they rerouted my blood to bypass the right side of my heart and closed the hole in the wall of the right atrium. I came out of surgery a whole new me...well with new hardware at least. :) I was there for about two weeks and sent home with lots of meds and pain, which subsided (after a slight infection that almost sent me back to the hospital...) and here I am. 25 years old, 3 scars, 3 surgeries and a life time of living with half a heart under my belt.
In future posts I will share more about my meds, my memories, my day to to day struggles, doctor visits, and what all this has meant for growing up "normal" and what my "adult" life might look like.
Before I end this for today, I want to share two bible verses. My family and I are people of faith, Christians who believe in power of Christ and the cross. The first verse was shown to my mom by my aunts shorty after I was born and has been "mine" ever since. Jeremiah 29:11 "For I know the plans I have for you declares the Lord. Plans to prosper you and not to harm you, to give you a hope and a future." The other verse is story in the bible where Jesus tell us that a mans illness he has from birth is not a mistake or because of a sin, but so that God can get the glory for his life. John 9:1-3 "As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi,who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."
Thanks for listening to the story of me. I have to go take my dig....;)
Emily <3 i="i">
I was born in June 1987 on Long Island. I was the first child of my amazing parents Jayne and Gerard. My mother was induced because I was late and shortly after they did an emergency C-Section because they were not happy with my heart rate. Upon my arrival I was blue and at first they thought it was because the cord was wrapped around my neck 3 times but once that was undone and I started to cry, I turned purple. Bright purple. I was taken away immediately and my mom never even got a chance to hold me.
They ran tons and tons of tests and decided then rushed me off to St. Francis Heart Hospital in Roslyn NY. My dad and my grandpa followed behind the ambulance and my grandma stayed with my mom. At St. Francis my dad met my Cardiologist; Dr. Rietman. From the moment my dad met him, he gave my him peace and reassured my dad that my he didn't fear for my life. More tests revealed that I had an ASD and Tricuspid Atresia. In non-medical terms that means that I have no Right Ventricle and a hole in my Right Atrium that was allowing the mixing of oxygenated and deoxygenated blood and sending it through my body. (Hence my bluish/purple color.)
My dad went back to visit my mom to be with her, as I was being taken care of by excellent doctors and nurses and aunts who have never left my side. He made a quick stop to eat with his parents first, to celebrate his first Father's Day. :)
After two weeks I was finally allowed to go home after a plan had been put in action. I was a purple, sickly baby who put my parents through...a TON. At 2 months old I had a shunt placed in my back to redirect the blood flow and my purple color disappeared. A two years old I had another shunt put in on the other side. But I was still sick. Walking up the stairs was an effort that made me out of breath. I got sick a lot and when I did, it was flu like. Blood work, IV's, and pills the size of fingers were a way of life for me. I slept a lot and tired out easier than most 2 year old. At this point my sister had been born (she is 13 months younger) and she was just as big as me, faster MUCH more energetic than I ever could be.
Shortly after I turned 3 my family, (uncle and grandparents included) treked to Boston Children's Hospital where I had open heart surgery. The doctors did what is called a Fontan Procedure. In simple words, they rerouted my blood to bypass the right side of my heart and closed the hole in the wall of the right atrium. I came out of surgery a whole new me...well with new hardware at least. :) I was there for about two weeks and sent home with lots of meds and pain, which subsided (after a slight infection that almost sent me back to the hospital...) and here I am. 25 years old, 3 scars, 3 surgeries and a life time of living with half a heart under my belt.
In future posts I will share more about my meds, my memories, my day to to day struggles, doctor visits, and what all this has meant for growing up "normal" and what my "adult" life might look like.
Before I end this for today, I want to share two bible verses. My family and I are people of faith, Christians who believe in power of Christ and the cross. The first verse was shown to my mom by my aunts shorty after I was born and has been "mine" ever since. Jeremiah 29:11 "For I know the plans I have for you declares the Lord. Plans to prosper you and not to harm you, to give you a hope and a future." The other verse is story in the bible where Jesus tell us that a mans illness he has from birth is not a mistake or because of a sin, but so that God can get the glory for his life. John 9:1-3 "As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi,who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."
Thanks for listening to the story of me. I have to go take my dig....;)
Emily <3 i="i">
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