Do you remember what life was like before social media? What about before cell phones? Some would argue life was better, while others would probably disagree. People share everything, with their friends, family, and even complete strangers. You know within moments where people are, where they went, what they had for dinner. The good, the bad, and everything in between is all out there for everyone else to see. For many people, social media is a way to reach out to people for support, for community, and for prayer. And I know that there is power in that, especially in prayer. I sometimes find myself wondering would social have made a difference for me?
30 years ago when I was born, there was no family family text sent around with my baby picture in it. First of all, I was purple and very sick so there was no baby picture taken, but secondly, the only thing that happened was phone calls. (Phone calls to houses with phones that were attached to the wall and had a cord. How ancient!) Phone calls about a baby girl, with a heart problem. My parents weren't able to start a Facebook group called 'Prayers for Emily Anne' so that complete strangers on the other side of the world could hear my story, keep updated on my surgeries, and pray for me. All they had was our family, and their friends, who were praying as much and as hard as they could. The pictures they took of me, hooked up to tubes and machines, were taken on a camera with film that had to be developed and then put in a photo album. They weren't uploaded to Facebook or Instagram and there was no #prayfromemilyanne either. My parents pain and their joy was private, and shared only with the family around them. My good days and bad days were mine and my families. No comments, no likes, no sharing. But would it have been different if all this was happening now?
If more people knew, if my story reached more people, if more people were praying...would the challenges I faced, the set backs that occurred; would they have turned out different if they had been shared on social media? This really comes to own big question that I've contemplated over and over in mind? The question is: Would I have experienced complete healing if more people were praying for me when I was born?
That question stings a little. That question makes my eyes water too. That question is a struggle to even admit that I ask. The reason it stings, the reason I cry, the reason it's a struggle is because I already know the answer. It's an answer that some days I don't really like. The answer is, "No."
No. No, it would not have made a difference. No, sharing my story would not have made me better or prevented pain and set backs and struggles. No, more prayers would not have somehow convinced God to 'fix me'. In James chapter 5 the Bible says that, "the prayers of the righteous availeth much..." and I know a family full of righteous and wonderful people who were praying and whose prayers were heard by God. Their faith, despite of the odds stacked against me, moved mountains on my behalf. And the best part is, their prayers were answered. I'm alive, I'm complication free since my surgeries, I'm as healthy as one can be with half a heart! And that is all because of the fervent prayers of a few instead of many. That is because of the faith of a family who choose to say, 'We believe in God's best and nothing less.'
Would having a Facebook page dedicated to me been a nice thing?...sure! But God doesn't need Facebook to answer prayers. God's plan for me wouldn't have changed because of comments on a social media account. He's been doing it since wayyyyyyyy before cell phones were invited, and way before they were attached to the wall! And he's had a plan for my life since before time began. I've been living in it and walking it in since I was born. I don't believe I've missed it or that it was missed because not enough people heard my story. I don't believe that complete healing was a part of his plan for me (Perhaps that's another topic for another blog another day.) and I don't believe that it could have happened if only there were more people praying for me.
I'm content reading others stories on social media. And yes, I'm praying for them. I like to be a part of people's lives in that way. I excited to utilize social media to share my story as it continues to unfold. I'm thankful for those of you who have become a part of the family and friends whose prayers have gotten me to where I am today.
Thank you! For praying with me and for me. And for continuing to read my blog!
Love,
Emmy
10/9/17
Germs and Jesus Are Everywhere
The beginning of Fall brings a lot of things. Pumpkin spice, fall decorations, and the changing of the leaves. No wait, those things have been happening since August. Except when August left, it forgot to take it's temperatures because it's still 80 degrees around here. Despite the Indian summer, Fall has also brought the sniffles, the sneezes, the coughs, and every other thing that spreads germs and make you queasy. It's really great working in a school during this time of year. It's like a giant petri dish or a large incubator. Germs, germs everywhere. Last week, a fast moving disease nearly took out a whole grade level and I lysoled and wiped down my classroom about 5 or 6 times. I hate germs. And not just because I hate being sick (I mean, does anyone actually enjoy it) but because for me and my half a heart, getting sick is so much more than going through a box of tissues in one night and taking some NyQuil.
Remember that on a regular basis, my heart is working harder than most because there is only half of it working. Fighting sickness puts a strain on anyone's body, especially mine. Breathing can be difficult enough on a humid day, let alone a day when I can't breath through my nose or when I'm congested with a cough. Dehydration is hard enough to fight when I'm busy at work, forget when I'm not feeling well and loose my appetite. And those are just symptoms of a viral infection, but an infection can be even worse. I don't even go to the dentist without being premeditated incase of bacteria causing an infection. So, come the fall I do everything I can to avoid germs. I follow my doctors orders and get my flu shot every year as well because for me, the flu can be deadly. And I'd like to avoid that for a while...
The times I do get sick, like really sick, (as opposed to the time I was probably faking it a little bit to avoid going to school) it's pretty awful. I can remember several times, being so sick I thought I was it was the end. Maybe I'm being dramatic but at the time, that's how awful I felt. I think I was about 4 or 5 years old and I had the chills so bad I was shaking and could NOT get warm. I had 2 or 3 blankets on me as well but that wasn't helping. My sister climbed up on top of me and sat on me. Her body on mine and she stayed there on top of the blankets, on top of me, until I was stopped shaking and was warm. I'll never forget that moment. My mom took a picture of us like that and for Christmas one year, I framed it for her in a frame about sisters. My heart condition and the things that have occurred in our lives because of it has given us a lot of special sister moments, but that one is my favorite.
It didn't get much easier as I got older. They say as you get older your body builds immunities and I believe it has, but every now and then my body likes to remind me that it's not like everyone else. My sophomore year of college was one of those years. I got sick with what I thought was cold that turned into a terrible congested cough. I had a fever and my throat was so swollen and sore. I was told by the doctor on campus not to go class and to rest. He gave me some cough medicine but it didn't seem to be working. My roommates were taking turns getting me Frosty's from Wendy's because it was the only thing I could swallow. I could barely breathe and had to have a fan blowing on my face as I slept because I felt like I wasn't getting any air. I remember calling my mom crying because I was so miserable and didn't know what to do make myself better. She decided then and there that she would coming to me. And she did. The next day she drove 3 hours to take me to the doctor, bring me food, buy me a medicine cabinet full of medicine and make sure I was on the mend before she left and drove 3 hours home. She knew that for me "sick" didn't mean what it means for most others. That's a heart mom for you. To her, there wasn't another option because it wasn't just my happiness at stake, it was the health of my heart.
Thankfully, I've never gotten to the point when I had to be hospitalized, but I've been close. I know that God has certainly protected me from sickness that could have been much worse. He's had a hand in every accept of my life with CHD. I hope and pray it never gets to the point where I need to be hospitalized. And that's why I do EVERYTHING I can to avoid germs. That's why I lysol my classroom. That's why I sanitize and wash my hands often. That's why I take feeling sick seriously and try best to rest up and stay hydrated. That's why I get my flu shot every year. And that's why I do my best to keep germs far away from me. For my sanity, and for the my safety. I gotta keep the half heart I've got healthy for as long as I can. I've got things to do, people to see, and a whole lot of life to live!
So, wash your hands and say your prayers because germs and Jesus are everywhere!
Keep your germs to yourself and I'll do the same.
Love,
Germ free Emmy
9/25/17
Dear Little Emmy
Dear Little Emmy,
You work so hard to keep your hand to yourself but sometimes you forget to watch your mouth. Your stutter doesn't stop you but having to catch your breathe always does. Yes, your sister is a better speller than you but she isn't a better artist. Your puppy really does love you as much as you love her. Mommy and Daddy, they have to put you in time out and send you to your room a lot but they love you more than you'll ever know. They also buy you a lot of ice cream. You get tired a lot so you should really stop protesting nap time. Yes, your potato clock is the best in Kindergarten science fair. Your Uncle Ralph really is the best. Those bible stories your learning, the ones you and Yellie take turns reading every night, I hope you are paying attention, not just looking for words Yellie missed or messed up on.
In the future Emmy, I want you to know that sometimes things have to get worse before they get better, but they always get better. You'll fight hard; with mommy with daddy, with Yellie, you'll hurt them and they'll hurt you but no one will ever love you like they do. They always will. You'll appreciate it one day. I promise. You'll get the baby brother you've been wanting and as much as you think you're teaching him, he will teach you more than you can ever imagine. You will come to admire him in endless ways. You'll always struggle with math but you'll find other subjects to be good at. You'll loose your temper a lot but you'll be surrounded by grace and mercy and every new day will be a second chance. You'll be worried and be anxious but you'll learn that fear isn't from the Lord and with His help you'll become brave and courageous. People will disappoint you and hurt you, but there will be many who change your world for the better.
Emmy, sometimes you'll do the right thing and it will be the unpopular choice, but you'll shape your character that way. Your family will grow and relationships will change but your family will always be the most important thing in your world. And your cousins will always be the best friends you'll ever have. In fact, they still are. You'll fall in love and you'll get your heart broken. It will be a pain like you've never felt before but, over time the ache will heal, your heart will mend and you'll make it through. You'll seek God and at times feel like he's distant, but you'll learn that He's never left your side. He'll reveal his plan to you as time goes on sometimes in advance, sometimes at it happens. You'll learn God has a good sense of humor, but so do you.
Oh Little Emmy, what you will never lack is sass, and spice and determination. You will value loyalty and honesty and truth. Your heart "condition" will put you on a journey that not many have walked. Many times you'll feel lonely and there will be many times you question God's purposes. But, you will never stop believing. You will never stop hoping. Not even for a second. You'll remember the songs that daddy sings to you each night. You'll remember the times Mommy prayed for you when she thought you were sleeping. You'll remember that God loves you, that He died for you, and when you make that choice to serve Him; your life will never be the same.
You can do this little girl. You are smart. You are brave. You make it. And most importantly, you are loved and you show love. Innocence may leave you, but Your God never will.
Loving you always,
Bigger Emmy
You work so hard to keep your hand to yourself but sometimes you forget to watch your mouth. Your stutter doesn't stop you but having to catch your breathe always does. Yes, your sister is a better speller than you but she isn't a better artist. Your puppy really does love you as much as you love her. Mommy and Daddy, they have to put you in time out and send you to your room a lot but they love you more than you'll ever know. They also buy you a lot of ice cream. You get tired a lot so you should really stop protesting nap time. Yes, your potato clock is the best in Kindergarten science fair. Your Uncle Ralph really is the best. Those bible stories your learning, the ones you and Yellie take turns reading every night, I hope you are paying attention, not just looking for words Yellie missed or messed up on.
In the future Emmy, I want you to know that sometimes things have to get worse before they get better, but they always get better. You'll fight hard; with mommy with daddy, with Yellie, you'll hurt them and they'll hurt you but no one will ever love you like they do. They always will. You'll appreciate it one day. I promise. You'll get the baby brother you've been wanting and as much as you think you're teaching him, he will teach you more than you can ever imagine. You will come to admire him in endless ways. You'll always struggle with math but you'll find other subjects to be good at. You'll loose your temper a lot but you'll be surrounded by grace and mercy and every new day will be a second chance. You'll be worried and be anxious but you'll learn that fear isn't from the Lord and with His help you'll become brave and courageous. People will disappoint you and hurt you, but there will be many who change your world for the better.
Emmy, sometimes you'll do the right thing and it will be the unpopular choice, but you'll shape your character that way. Your family will grow and relationships will change but your family will always be the most important thing in your world. And your cousins will always be the best friends you'll ever have. In fact, they still are. You'll fall in love and you'll get your heart broken. It will be a pain like you've never felt before but, over time the ache will heal, your heart will mend and you'll make it through. You'll seek God and at times feel like he's distant, but you'll learn that He's never left your side. He'll reveal his plan to you as time goes on sometimes in advance, sometimes at it happens. You'll learn God has a good sense of humor, but so do you.
Oh Little Emmy, what you will never lack is sass, and spice and determination. You will value loyalty and honesty and truth. Your heart "condition" will put you on a journey that not many have walked. Many times you'll feel lonely and there will be many times you question God's purposes. But, you will never stop believing. You will never stop hoping. Not even for a second. You'll remember the songs that daddy sings to you each night. You'll remember the times Mommy prayed for you when she thought you were sleeping. You'll remember that God loves you, that He died for you, and when you make that choice to serve Him; your life will never be the same.
You can do this little girl. You are smart. You are brave. You make it. And most importantly, you are loved and you show love. Innocence may leave you, but Your God never will.
Loving you always,
Bigger Emmy
9/14/17
So Long Summer
I've officially said goodbye to summer as my alarm continually goes off at 6:10 fives days a week. The night before the first day of school, I almost cried myself to sleep because this summer was so wonderful and I just didn't want it to be over. I couldn't believe it was over. It was that wonderful.
I started the summer with an amazing trip to Italy. It was a whirlwind and it was exhausting but it was incredible. It look me time to process that I even went there. We took every mode of transportation and saw more tourist attractions that the all the Asian tour groups combined.
We boarded an airbus from JFK on Friday night. None of us slept at all on the 7 hour flight because of the screaming child sitting in front of us. When landed in Milan and waited in a very long line for customs. We boarded a bus to the train station and then got on a train to Florence. I sat with 3 old ladies who spoke to me in Italian and offered me some of the sandwiches they had in their purse.
In Florence we took a cab to the wrong hotel thanks to my Mom and then walked to the right one. Our first official meal in Italy (The sandwich at the train station didn't count.) was at delicious hole-in-the-wall restaurant followed by gelato. Touring Florence was a history lovers dream. Sights that were mostly all formally owned by the Medici family and an incredible view from amount 500 steps up above the city over looking Il Duomo. The food was just as amazing as the history. My face light up when I saw Michelangelo's Il Davide because folks, dreams really do come true. And dreams come true in Florence.
We took our lives into our hand when my dad drove us from Florence to Rome. Thankfully we survived. A quick pit stop in Assisi where we walked in circles (Thanks Rick Steves and your confusing directions) and saw some of the most beautiful views in all of Tuscany. Air B & B is awesome. Our apartment in Rome was so cute and so perfect for 4 people. Touring the Colosseum was a "Check that off my bucket list" moment. The moment when your walking around in a fog because you can't believe you are actually there!The Vatican was big and gold and beautiful and tall. Those Italian are apparently not afraid of heights. Travestere was a happening place at night. We walked there from our awesome apartment in the the former Jewish Ghetto. My sister had rabbit for dinner and my dad was asked to sign a political campaign because they thought he was Italian. Clearly they didn't hear him saying "Hola!" to people...
The next day was back to the rails as well headed to Amalfi but stopped in Naples to have some pizza and see Mt. Vesuvius. We also made "friends" with a taxi driver who was once (or is he still?) in the mob. The pizza was the best. The Usher "Yeah" music video playing on the TV in the restaurant added to ambiance and the true Neapolitan experience. We got back on the the rails and rode to Sorrento and then this time rode the sea on a ferry to Amalfi. We waved to Sofia Loren's house along the way and took about a billion pictures because the view was indescribable. The beach in Amalfi was made of a million tiny rocks and my felt had never been happier. Famous for it's lemons and lemonciello, I thoroughly enjoyed my lemon pesto spaghetti for lunch. Gelato was had after pretty much every meal.
The ferry ride, then the train ride took us to our overnight train to Venice. Sleeper cars are cool.
Unfortunately, sleeper cars have thin walls because the lady next to us lost something around 4 in the morning and the whole darn train heard about it for hours. We arrived in Venice in time for the sunrise, and since we couldn't check into our hotel yet we decided to take in some of the sights. FYI, the sights aren't open in Venice at 7:00am. After we watched a crazy man chase the birds around St. Marks Square and wondered around randomly we found a cafe open to eat breakfast in. Then we hit the sights. For real this time. I wonder how many people the Security Guards have had to wake up for falling asleep in St. Marks Cathedral. I wonder this because I am one of them. After climbing the bell tower we finally were able to head back to our hotel for a shower and MUCH needed nap. After our naps and showers and dinner, we had the most expensive dessert I've ever had in my life. Served on silver platter (literally) and with the most beautiful music as it got dark in St. Marks Square.Besides giving us a rocking sensation that lasted for days, Venice did not disappoint at any point in anyway. Gondola making, glass blowing, gondola riding, shopping, bridge walking, and of course...eating.
The saddest day of the whole trip was the day we got on a million more trains and headed to the airport. There is something special about coming back into American as an American. But there was something sad about leaving Italy, the place of my people and some of the most amazing and surreal sights I've ever seen. Now, it's time to plan the next trip...
I got to spend a lot of time with family and friends and I got to take a trip to Haiti with my dad. (Another amazing bucket list experience!) Now, here I am, back to my perpetually exhausted self, trying to keep my head above water in the sea of students and IEPs. And don't get me wrong, I love it and it's exciting and I enjoy (almost) every moment of it but I find myself frequently going through my phone and looking at my pictures from this summer. I miss it. I miss the people and the places and the 'I don't have anything to do but sit around' of it all. So in the missing it, (and the trying to figure out when I can go back) I'm missing being in the moment. And that isn't good. I need to work on that. I don't want to constantly be thinking about what happened or what's going to happen. I want to be here. I want to enjoy the now. I want what God has for me in this moment, not trying to look backwards or too far ahead. I've been praying for myself. A lot. As I try to be in the moment and not be overwhelmed by it. And as I try not to say, "Remember the time I went to Italy..." too often...
Arrivaderci.
6/18/17
Daddy's Top 20
Happy Father's Day! Dads, you have the most important job in the world and one that our society today is trying to down play and convince you isn't as important as it seems. Yes, moms are strong and they can do anything they need to when they have to but no one can ever replace a dad in the life of a child. His role is the most vital. So thank you to all the dads that are doing their best at the most important job they will ever have.
I want to honor my dad today because he's best dad of all the dads. I mean, it's not even a point worth arguing so don't try. He's just the best. If you know my dad, I bet you love him too. He's just so lovable. I bet you think he's the best too. Just like with momma's day, I'm not bragging, I'm blessing. So here's 20 facts about my dad. I hope they help you love him just a little bit more.
1. He hates marshmallows. If you think about it, you've seen him make a s'more but never eat one.
2. He is ambidextrous. He writes with his right hand but does a lot of other things left handed.
3. He loves to sit outside and look at the stars at night.
4. He taught himself to play the guitar and he can sing very well. #swoon
5. If he could be any TV show character it would be Leroy Jethro Gibbs from NCIS.
6. He one time microwaved my bra so that it would dry faster. It caught on fire instead.
7. He's a master of breakfast foods. Pancakes, french toast, eggs, omelettes...he's a pro!
8. He does not have a favorite color. I think that's weird. Don't you?
9. If you go out to eat with him he'll order a large orange juice for breakfast or a cranberry juice and club soda for lunch or dinner.
10. He doesn't drink coffee. But every since he went to Italy's been obsessed with cappuccino.
11. He takes politics very seriously. Unless you agree with him, I would suggest you don't bring it up. He can get pretty passionate pretty quickly.
12. He has a Long Island accent. Certain words sounds like a different language sometimes.
13. He likes sports and he is pretty athletic. People are always impressed at how fast he can run.
14. He takes dunking cookies in milk very seriously. I remember the day he sat my sister and I down to teach us how to do it properly.
15. He is a prayer warrior. I can't even count the amount of times I've walked past his room and he was on his knees by his bed praying or the times I've been woken up early in the morning by his whisper prayers just outside my bedroom door before he left for work.
16. He's really good at math but he's a terrible math teacher. I cried every time he tried to "teach" me.
17. He likes to travel. He's been to 7 different countries missions trips and several more on vacation.
18. When I was a baby he wrote me letters for me to open on my 10th and 16th birthdays. They are some of best birthday cards I've ever received.
19. He has 5 sisters and 1 brother. Their sisters adore them Sometimes it's cute. They are pretty adorable.
20. The thing I miss most about living with him is eating Oreo's while watching TV at night and talking when we were supposed to be going staying goodnight and going to bed.
I love you my Daddy. You truly are the best in every sense of the word. Thank you for all that you've done and all that you do and continue to do. You are true man of God and an incredible example. I love you. Always.
Love,
Sunshine
I want to honor my dad today because he's best dad of all the dads. I mean, it's not even a point worth arguing so don't try. He's just the best. If you know my dad, I bet you love him too. He's just so lovable. I bet you think he's the best too. Just like with momma's day, I'm not bragging, I'm blessing. So here's 20 facts about my dad. I hope they help you love him just a little bit more.
1. He hates marshmallows. If you think about it, you've seen him make a s'more but never eat one.
2. He is ambidextrous. He writes with his right hand but does a lot of other things left handed.
3. He loves to sit outside and look at the stars at night.
4. He taught himself to play the guitar and he can sing very well. #swoon
5. If he could be any TV show character it would be Leroy Jethro Gibbs from NCIS.
6. He one time microwaved my bra so that it would dry faster. It caught on fire instead.
7. He's a master of breakfast foods. Pancakes, french toast, eggs, omelettes...he's a pro!
8. He does not have a favorite color. I think that's weird. Don't you?
9. If you go out to eat with him he'll order a large orange juice for breakfast or a cranberry juice and club soda for lunch or dinner.
10. He doesn't drink coffee. But every since he went to Italy's been obsessed with cappuccino.
11. He takes politics very seriously. Unless you agree with him, I would suggest you don't bring it up. He can get pretty passionate pretty quickly.
12. He has a Long Island accent. Certain words sounds like a different language sometimes.
13. He likes sports and he is pretty athletic. People are always impressed at how fast he can run.
14. He takes dunking cookies in milk very seriously. I remember the day he sat my sister and I down to teach us how to do it properly.
15. He is a prayer warrior. I can't even count the amount of times I've walked past his room and he was on his knees by his bed praying or the times I've been woken up early in the morning by his whisper prayers just outside my bedroom door before he left for work.
16. He's really good at math but he's a terrible math teacher. I cried every time he tried to "teach" me.
17. He likes to travel. He's been to 7 different countries missions trips and several more on vacation.
18. When I was a baby he wrote me letters for me to open on my 10th and 16th birthdays. They are some of best birthday cards I've ever received.
19. He has 5 sisters and 1 brother. Their sisters adore them Sometimes it's cute. They are pretty adorable.
20. The thing I miss most about living with him is eating Oreo's while watching TV at night and talking when we were supposed to be going staying goodnight and going to bed.
I love you my Daddy. You truly are the best in every sense of the word. Thank you for all that you've done and all that you do and continue to do. You are true man of God and an incredible example. I love you. Always.
Love,
Sunshine
5/14/17
Momma's Top 20
Happy Mother's Day to all those momma's out there; especially to my beautiful friends, my wonderful cousins, my amazing aunts, my incredible grandmothers, and of course the best mother in the whole wide universe...my mommy!
My momma has been by my side since my very first bluish breath. She never asked to have a sick baby yet she was exactly who God choose to have me. She has faced every day with strength that at times I'm sure she didn't she think she had. I have not always made it easy on her but she loved me through it and despite of it. Today is her 30th Mother's Day (29th really...because technically I was still inside of her for her first Mother's Day!) and I want to celebrate her on this here blog. I want to share some of what makes her so...."my mom". The list below... they are who she is, they are lessons I've learned and they are sweet memories we've made. I know that no one likes a bragger, but I don't see it as bragging at all. Instead I'm blessing. Proverbs 31:28 "Her children arise and call her blessed..." This little girl is blessed by her and because of her. If you know her, I hope this list helps you get to know her a little more. If you don't, I hope that one day you get the opportunity to know her! Here goes...
1. Her favorite color is red and shades of red. (But not pink!)
2. She loves to watch birds but is afraid of them when they fly overhead. (A poor experience with an Alfred Hitcock movie one time I believe.)
3. She irons her jeans. I get my hatred of wrinkles from her.
4. Medium Hazelnut coffee. Two splenda. Light. If you ever go to Dunkin Donuts that's what you can order her. And ask for the senior discount.
5. Her favorite person in the world (besides my dad) was her grandmother. She called her Mamma. I know she misses her every moment of every day.
6. Cooking is one of her favorite things to do. And she's a foodie too.
7. She has never, in her life, missed a parent teacher conference. Three kids, three different grades, and at times three different schools. That's 20 plus years of schooling combined yet she went to every single one.
8. The only pair of earrings she wears are the ones my dad gave her the day he told her he loved her. (Swoon.)
9. She is an incredible photographer. She used to have to her own darkroom and develop her own film and photos.
10. Traveling is one of her favorite things to do. She overpacks every time though. (Right Daddy?)
11. I distinctly remember the day she taught me how to make a bed. It was the same day she taught me how to dust.
12. She prayers for each of her nieces and nephews (great nieces and great nephews too) by name on a daily basis. She also refers to herself as their "Favorite Aunt Jayne".
13. My Big Fat Greek wedding is one of her all time favorite movies. She laughs so hard every single time she watches it.
14. She has a six pack. And it's legit. She'd never let you see it though.
15.When I was a baby, she used to sing me a song she made up called 'I'm a My Little Emily's Mommy'.
17. She used to be afraid of the computer but now she has 2 iPods, a tablet, a laptop, a desk top, a smart phone, and an Amazon Echo.
18. Mowing the lawn is one her favorite household chores. She "gets a good work out" while doing it.
19. Writing is a gift of hers. She is eloquent with words and has written poems and songs and letters that are worthy of being published.
20. What I miss most about living with her is coming down stairs in the morning (on the rare occasion I got up early enough) to see her eating her egg sandwich, drinking her coffee, and reading her bible.
I love you Mommy. I wouldn't be me without you. Thank you is never enough. Enjoy being celebrated today and everyday!
<3 emily="" little="" nbsp="" p="" your="">
My momma has been by my side since my very first bluish breath. She never asked to have a sick baby yet she was exactly who God choose to have me. She has faced every day with strength that at times I'm sure she didn't she think she had. I have not always made it easy on her but she loved me through it and despite of it. Today is her 30th Mother's Day (29th really...because technically I was still inside of her for her first Mother's Day!) and I want to celebrate her on this here blog. I want to share some of what makes her so...."my mom". The list below... they are who she is, they are lessons I've learned and they are sweet memories we've made. I know that no one likes a bragger, but I don't see it as bragging at all. Instead I'm blessing. Proverbs 31:28 "Her children arise and call her blessed..." This little girl is blessed by her and because of her. If you know her, I hope this list helps you get to know her a little more. If you don't, I hope that one day you get the opportunity to know her! Here goes...
1. Her favorite color is red and shades of red. (But not pink!)
2. She loves to watch birds but is afraid of them when they fly overhead. (A poor experience with an Alfred Hitcock movie one time I believe.)
3. She irons her jeans. I get my hatred of wrinkles from her.
4. Medium Hazelnut coffee. Two splenda. Light. If you ever go to Dunkin Donuts that's what you can order her. And ask for the senior discount.
5. Her favorite person in the world (besides my dad) was her grandmother. She called her Mamma. I know she misses her every moment of every day.
6. Cooking is one of her favorite things to do. And she's a foodie too.
7. She has never, in her life, missed a parent teacher conference. Three kids, three different grades, and at times three different schools. That's 20 plus years of schooling combined yet she went to every single one.
8. The only pair of earrings she wears are the ones my dad gave her the day he told her he loved her. (Swoon.)
9. She is an incredible photographer. She used to have to her own darkroom and develop her own film and photos.
10. Traveling is one of her favorite things to do. She overpacks every time though. (Right Daddy?)
11. I distinctly remember the day she taught me how to make a bed. It was the same day she taught me how to dust.
12. She prayers for each of her nieces and nephews (great nieces and great nephews too) by name on a daily basis. She also refers to herself as their "Favorite Aunt Jayne".
13. My Big Fat Greek wedding is one of her all time favorite movies. She laughs so hard every single time she watches it.
14. She has a six pack. And it's legit. She'd never let you see it though.
15.When I was a baby, she used to sing me a song she made up called 'I'm a My Little Emily's Mommy'.
17. She used to be afraid of the computer but now she has 2 iPods, a tablet, a laptop, a desk top, a smart phone, and an Amazon Echo.
18. Mowing the lawn is one her favorite household chores. She "gets a good work out" while doing it.
19. Writing is a gift of hers. She is eloquent with words and has written poems and songs and letters that are worthy of being published.
20. What I miss most about living with her is coming down stairs in the morning (on the rare occasion I got up early enough) to see her eating her egg sandwich, drinking her coffee, and reading her bible.
I love you Mommy. I wouldn't be me without you. Thank you is never enough. Enjoy being celebrated today and everyday!
<3 emily="" little="" nbsp="" p="" your="">
5/2/17
I Have A Theory...
Does anyone else think that hospitals, and waiting rooms, and medical offices always have the same design? Same floors, same carpet, same wall color, same chairs...and all of which seem to say, "Are you worried yet? Nervous? Well, maybe you should be!" Well that's my theory. They all look the same, and they all do it on purpose. And I've had many, many, way to many, experiences that have caused me to come to that conclusion.
I have another theory. About fear. That's it all the same and it all comes from the same place too. It comes from a lack of being able to know the outcome and maybe even a lack of being able to control the outcome. The unknown is fear's biggest weapon. One of my most favorite presidents (Sorry Mom) Franklin Delano Roosevelt once said, "We have nothing to fear but fear itself." You got that right Franky. Fear is it's own entity entirely. Fear is an ugly monster that rears it's head up when you least expect it. When you think you've squashed it and gotten past it and overcome it...boom! It's back recking havoc on you and the peace you thought you had found.
I found myself bowing to fear again back in March when I had to get some tests done that my cardiologist had order. It was a simple MRI that my doctor wanted to do, just to take a look. Nothing was wrong, nor did he suspect anything, he just wanted to check and make sure that things were as good as they seemed. Pumped up from the excitement that was Heart Month in February and feeling extra proud of my scars and my story, I thought that I would go into my MRI feeling like I had CHD instead of CHD having me. But a few days before the MRI I got this phone call...
"Hello Ms. D'Ambrosio we see you have an MRI scheduled for (I don't actually remember the exact date people...it was 2 months ago...) and we had a few questions for you....(a bunch of boring questions about verifying my phone number and date of birth...)...do you have anything in your body that you weren't born with?" My response (in my head) was, "DUH! That's why I'm having an MRI because I was born missing some things and then they put some extra things in...!" But instead I said, "I do, but it's MRI compatible. I've had an MRI before." On the other end of the phone I heard..."Uh...." and then BOOM. Fear arrived. Just like that. I went from pumped to worried. I had a back and forth phone call with this MRI nurse about the type of device and if they "gave me a card when I had the device put in" regarding MRI compatibility (Um, yes...they gave a 3 year old a pamphlet regarding the clamshell device they but in my heart to correct my Tricuspid Atresia...Sure lady...) and a discussion about the types of magnets in the MRI being compatible with different devices and a change in the location of the MRI because of the magnets. I was feeling afraid. Were they trying to freak me out? Well, they succeeded.
The morning of the MRI I got up, showered, made myself a nice breakfast, sat down at the table to read my devotional and started bawling like a baby. I didn't know what exactly I was afraid of but I was afraid. I was upset because here I was again, going through a test that would only confirm what I already knew...I have a disease that I will always have. It will never be cured and it will never go away. What was the point? Thankfully, I only allowed myself to wallow in self pity over my breakfast for a few moments before I put on some music and decided to worship and pray away my fear. The first song that played was No Longer Slaves by Jonathon and Melissa Hesler. (Listen to it NOW if you haven't heard it!) The chorus, which sings, "I'm no longer a slave to fear/I am a child a God", had me crying all over again for different reasons. I decided in that moment that I wasn't going to let fear get me. It had no place in my life. Did I have control? No. In fact I had none. But I never had control in the first place. I gave my life over to God a long time ago and He has been in controlecer since. Even more than that, He has been in control since the beginning. The second verse of the song sings, "From my mother's womb/You have chosen me/Love has called my name..." By this time, the crying had turned to sobbing. God didn't do this to me. He chose me. He chose me to live this life and He chose for me to do it with half a heart. He made me this way and He makes no mistakes. Ever. And He promised that He would never leave my side at any moment or for any part of it. What reason did I have to fear since He was this was a part of His plan from the beginning? What reason did I have to fear since He was with me each moment? God reminded me that fear was not of Him, not from Him, and not part of His plan either.
I went the MRI appointment and although I've had some pretty terrible MRI experiences in the past...this one of the best experiences I have had. I slept, I listened to some worship music, and I even signed consent for my MRI to be used for medical students to study. When the results came in my resident physician (AKA my sister) had good things to say, and a week later when I met with my cardiologist, he was extremely happy with results and all the things that he wanted to look good, did. And once again, being fearful had proved pointless...and I vowed to never do it again.
They always say not to make promises you can't keep. So, I should stop vowing and promising not to fear and just admit that it's a work a progress...like most other things in my life. Fear found it's way back to me once again just last week. Sitting in a meeting, I started to feel sweaty, dizzy, and my ears were ringing. I was afraid that what I had experienced 5 years ago was happening again. And I was right. Thankfulky, I was able to finish the meeting and leave work immediately. I got myself home in time to throw up, and get myself into bed with a pounding headache and extreme dizziness for the next several hours. It. Was. Awful. And I was so upset it happening all over again. When I went to the doctor, his lack of answers (he literally said, "Hmmmm..." and started at the paper he had just written my symptoms down on) and the ordering of more tests didn't help quiet the fear. Not at all. I felt defeated. I felt like after making strides with my CHD this year, I was back at square one with my health. I was feeling confused, annoyed, tired, and afraid. Again. And to be honest, I've been struggling. I am trying to get on top the fear this time. Trying not to think every headache or little ring in my ear is another episode that I'm going to have to run home from work for. I'm trying to remind myself of all the things I God revealed to me during my breakfast in March. I'm reminding myself of all the times that God's moved and worked in my life and all the times He's remained faithful and true. I have to remind myself of these things a lot lately. But I'm determined.
So, I have one more theory. I have a theory that I need God more and more each day. I need him every moment of every day. Every hour, every minute, I need Him. As I work on my worries, and my anxiety, and my fear...I need Him to help me through it all. And I KNOW that I'm right about this theory. Actually, it's beyond a theory, it's a straight up fact.
When you read this, all two of you (Hi Mom! Hi Grandma!), feel free to pray for me. Pray that God continues to guide me as I work to overcome my fears and for peace that surpasses my understanding as I continue to find my way through the unknown of my medical mysteries. (And come up with some more great theories!) I promise I'll pray the same for you!
Praying for peace. For you and for me!
Love,
Emmy
2/14/17
The Other Half of My Heart
Happy Heart Month and Heart Day. The love is flowing today....and I'm here to join the party. Today I want to celebrate, brag about, and share about my sister. My sister deserves a HUGE shout out during heart month, not just because she's a champion of dealing with me and all of my heartisms and heart-issues for the past 28 (and a half) years but because she has a heart story of her own.
Congenital Heart Disease doesn't give anyone a choice. It didn't give me a choice, it didn't give my parents a choice, and it certainly didn't give my sister a choice. She was just born into the midst of my chaos. We are 13 months apart and while we normal parents would be trying to figure out life with 2 kids under 2...my parent were trying to figure out life with 2 kids under 2 while one is making trips back and forth to the cardiologist and spending days at a time in the hospital. It was not an ideal situation for anyone.
If you know my sister, you know she is tough. "Tough as nails" would be a great way to describe her. Some people might categorized her as mean but, I prefer to use words like, stubborn, feisty, determined, unwavering...just to name a few. She is most certainly someone who you want on your side in this life. (I'm darn glad she is on mine!) See, she has had to fight for and work for everything she ever gotten. When your older sister's sickness is the center of the world you are born into, you have to fight. But the best part about my sister, is that if she loves you, she will fight for you and she will fight to the death. Not once, in my entire life has she ever made me feel guilty for having a heart condition that put so much attention to me during our childhood.
I have vivid memories of my sister biking the both of us in our bicycle (it had a seat in the back for passengers) up hill because she knew I could never do it. I remember having races around our house and she would always give me a head start "because of your heart". She would still win every time, but she would never rush me catch my breath before we started another one. I remember her telling neighbors, cousins, friends...whoever we were playing with at the time, that "My sister needs a break. She has a heart condition." No one knew what that meant, not at 5 or 6 years old, but they knew not to question her. She never judged me when I needed to nap, made sure I had extra blankets when the flu got the best of me, sat next to me and waited when I needed to take a break while walking up the stairs, tried over and over again to taste my medicine (it was lemon-lime flavored), and when I had my open heart surgery, she was the only one that could bring a smile to my face. My sister, as I always tell her, is the other half of heart. She is my missing chambers. She makes me whole. Her and Jesus of course.
My sister doesn't get all the credit just because she's an understanding sister. One year, during my yearly cardiologist trip, my sister also went to see the doctor as well. Because there is a history of heart disease in my family and because of my heart condition, the doctors thought it best that my siblings and my cousins get screened for heart defects. So my sister, much to her excitement, got to have an EKG and an Echo-cardiogram done right along with me. I don't remember the exact series of events that followed, but I do remember my mom on the phone, having a long conversation with the doctor, and then calling my dad. At first I thought something was wrong with me, but I heard "Danielle" being said over and over during my eavesdropping and I knew that something was wrong.
It turns out that my sister had an Atrial Septal Defect, which is a hole in her heart. A small one but, one that needed to be fixed. Everyone is born with a hole in their heart, just like everyone is born with soft spots on their head. Just like the soft spots harden as the baby grows, the hole in your heart closes...except hers never did. It's actually a very common and very fixable type of CHD. My dad told us recently that a few weeks prior to this news, he had been driving home from work and thinking about all that my family had gone though with my surgeries, thanking God for bringing us through it, and thinking about how he didn't think that we would be able to go through it again. Well Dad, I guess God wanted to show you what we were made of because by the end of the summer, a few days after her 8th birthday, we were back in the same hospital where I had my first two surgeries. Only this time, my sister was the patient.
I remember going with her to visit the pediatric floor of the hospital, the exact floor that I had stayed on. I remember visiting the "play room" (a closet with toys) at the hospital and we got to put our hand prints on the wall with the year of our surgeries. I felt special being the person with the oldest surgery date and I loved sharing that moment with my sister. Despite the fear I felt for my sister, and the pain I knew she would face, I felt excitement that she and I would share something that very few people get to share. The night before her surgery, we went with her to hospital to get checked in. My grandparents took my brother and I back to their house while my parents stayed with her. I remember looking back as we walked out of the room, seeing my sister sitting cross legged and cross armed on her hospital bed declaring that "This is my throne!" and pretending to be a queen. I don't know that I've ever been that anxious in my life. Even though I was only 8 years, I remember thinking that being the one to worry and wait this time, was not the position I enjoyed at all.
The day of her surgery, our whole family gathered at the hospital. It brought me incredible comfort to know that my grandparents, aunts, and uncles and taken off of work, my cousins had taken off of school and we were all just together and waiting. We went to the chapel, we went for walks, we ate in the cafeteria, and we waited...together. Just like I know they waited when it had been me in the operating room. Finally, after what felt like decades, they let us know that my sister was out of surgery and that she was heading to ICU. I had in my mind that I would be able to see her, and so when they said only my parents were allowed, I freaked out. I mean, threw my Pochontas coloring book and markers across the waiting room, screamed, cried and threw my self on the floor freaked out. I wanted to see her. I needed to see her. I was the only one who knew what she was really going through and they were denying me the right to be with her. She now had a matching scar down her chest and I needed to be the one to hold her hand and tell her that incredible tightness and pain in her chest would go away. I needed to tell her not to pull on her IVs and to try not cough. I needed to tell her to be nice to nurses, because they are only doing their job. I needed to let her know that I was going to fight for her just like she always fought for me.
Well kids, tantrums never work. And I had thrown my very best one and it got me no where but in trouble when my parents came back from visiting the ICU. The next day, I finally got to see her. She looked pained, and uncomfortable, but she was fine. Her surgery had gone well, but she had a long road ahead of her. While my brother and I got to bounce around to various relatives she made a quick and smooth recovery. When she left the hospital, she still had some healing to do and it took a little time. She had to steer clear of anything that could cause an infection and when I got bronchitis, that meant me. ("Stop coughing near your sister! Go in the other room if you need to cough!" were the exact words my mother used.) As her scar healed, much nicer than mine did by the way, she had to be careful how she exerted herself and what she lifted. When school started a few weeks later, I carried her backpack to her classroom for her in the morning and her teacher sent someone to carry it for her when school was over. In some small way, I was finally able to be there for her just as she had always, without hesitation, been there for me.
Thankfully, with my sister's surgery, her CHD was completely corrected. She has had no set backs, takes no medication, has no limitations, doesn't even seen a cardiologists anymore. Only a scar provides evidence that she ever even had a problem. At times, I have been jealous of my sister, that one surgery fixed it all, and I will never have that. Yet my sister has had a deep understanding for me like no other. She has never rubbed it in my face, not once. She is still fighting for me, knowing when I need to rest, when I need a break, when I can push myself a little further, and when I'm milking it. In fact, I know that when she does things I will never be able to do, she does it for both of us. It's an unspoken bond that we have as sisters; sisters who share much more than just clothes. As if growing up sharing our lives wasn't enough, we share a CHD too. How many sisters can say they share that? I'll be it's not very many at all...
If you grew up watching Barney and Friends like my sister and I did, then you know about the sisters Lucy and Tina. They were such wonderful sisters...but even the best of sisters don't always get along. Lucy and Tina had this little song they would always sing after they'd gotten into an argument and Barney and their friends had encouraged them to make up. My sister and I used to sing it to each other, and still do from time to time. So, right now, this goes out to my sister:
With all the medical madness my family has been through, my sister has always had a fascination with it. In May of 2016, she achieved her life long dream of becoming a doctor and I could not be prouder of her. Not only is she my sister but she is my best friend. She is the best part of me, and I carry her heart inside the half of mine. She is my other half, in every way. I don't know what I would be without the other half of my heart. God knew exactly what He was doing when He made me, and when He made my sister, and when He made us for each other.
I love you Yellie. Always.
Love,
Emmy
Congenital Heart Disease doesn't give anyone a choice. It didn't give me a choice, it didn't give my parents a choice, and it certainly didn't give my sister a choice. She was just born into the midst of my chaos. We are 13 months apart and while we normal parents would be trying to figure out life with 2 kids under 2...my parent were trying to figure out life with 2 kids under 2 while one is making trips back and forth to the cardiologist and spending days at a time in the hospital. It was not an ideal situation for anyone.
If you know my sister, you know she is tough. "Tough as nails" would be a great way to describe her. Some people might categorized her as mean but, I prefer to use words like, stubborn, feisty, determined, unwavering...just to name a few. She is most certainly someone who you want on your side in this life. (I'm darn glad she is on mine!) See, she has had to fight for and work for everything she ever gotten. When your older sister's sickness is the center of the world you are born into, you have to fight. But the best part about my sister, is that if she loves you, she will fight for you and she will fight to the death. Not once, in my entire life has she ever made me feel guilty for having a heart condition that put so much attention to me during our childhood.
I have vivid memories of my sister biking the both of us in our bicycle (it had a seat in the back for passengers) up hill because she knew I could never do it. I remember having races around our house and she would always give me a head start "because of your heart". She would still win every time, but she would never rush me catch my breath before we started another one. I remember her telling neighbors, cousins, friends...whoever we were playing with at the time, that "My sister needs a break. She has a heart condition." No one knew what that meant, not at 5 or 6 years old, but they knew not to question her. She never judged me when I needed to nap, made sure I had extra blankets when the flu got the best of me, sat next to me and waited when I needed to take a break while walking up the stairs, tried over and over again to taste my medicine (it was lemon-lime flavored), and when I had my open heart surgery, she was the only one that could bring a smile to my face. My sister, as I always tell her, is the other half of heart. She is my missing chambers. She makes me whole. Her and Jesus of course.
My sister doesn't get all the credit just because she's an understanding sister. One year, during my yearly cardiologist trip, my sister also went to see the doctor as well. Because there is a history of heart disease in my family and because of my heart condition, the doctors thought it best that my siblings and my cousins get screened for heart defects. So my sister, much to her excitement, got to have an EKG and an Echo-cardiogram done right along with me. I don't remember the exact series of events that followed, but I do remember my mom on the phone, having a long conversation with the doctor, and then calling my dad. At first I thought something was wrong with me, but I heard "Danielle" being said over and over during my eavesdropping and I knew that something was wrong.
It turns out that my sister had an Atrial Septal Defect, which is a hole in her heart. A small one but, one that needed to be fixed. Everyone is born with a hole in their heart, just like everyone is born with soft spots on their head. Just like the soft spots harden as the baby grows, the hole in your heart closes...except hers never did. It's actually a very common and very fixable type of CHD. My dad told us recently that a few weeks prior to this news, he had been driving home from work and thinking about all that my family had gone though with my surgeries, thanking God for bringing us through it, and thinking about how he didn't think that we would be able to go through it again. Well Dad, I guess God wanted to show you what we were made of because by the end of the summer, a few days after her 8th birthday, we were back in the same hospital where I had my first two surgeries. Only this time, my sister was the patient.
I remember going with her to visit the pediatric floor of the hospital, the exact floor that I had stayed on. I remember visiting the "play room" (a closet with toys) at the hospital and we got to put our hand prints on the wall with the year of our surgeries. I felt special being the person with the oldest surgery date and I loved sharing that moment with my sister. Despite the fear I felt for my sister, and the pain I knew she would face, I felt excitement that she and I would share something that very few people get to share. The night before her surgery, we went with her to hospital to get checked in. My grandparents took my brother and I back to their house while my parents stayed with her. I remember looking back as we walked out of the room, seeing my sister sitting cross legged and cross armed on her hospital bed declaring that "This is my throne!" and pretending to be a queen. I don't know that I've ever been that anxious in my life. Even though I was only 8 years, I remember thinking that being the one to worry and wait this time, was not the position I enjoyed at all.
The day of her surgery, our whole family gathered at the hospital. It brought me incredible comfort to know that my grandparents, aunts, and uncles and taken off of work, my cousins had taken off of school and we were all just together and waiting. We went to the chapel, we went for walks, we ate in the cafeteria, and we waited...together. Just like I know they waited when it had been me in the operating room. Finally, after what felt like decades, they let us know that my sister was out of surgery and that she was heading to ICU. I had in my mind that I would be able to see her, and so when they said only my parents were allowed, I freaked out. I mean, threw my Pochontas coloring book and markers across the waiting room, screamed, cried and threw my self on the floor freaked out. I wanted to see her. I needed to see her. I was the only one who knew what she was really going through and they were denying me the right to be with her. She now had a matching scar down her chest and I needed to be the one to hold her hand and tell her that incredible tightness and pain in her chest would go away. I needed to tell her not to pull on her IVs and to try not cough. I needed to tell her to be nice to nurses, because they are only doing their job. I needed to let her know that I was going to fight for her just like she always fought for me.
Well kids, tantrums never work. And I had thrown my very best one and it got me no where but in trouble when my parents came back from visiting the ICU. The next day, I finally got to see her. She looked pained, and uncomfortable, but she was fine. Her surgery had gone well, but she had a long road ahead of her. While my brother and I got to bounce around to various relatives she made a quick and smooth recovery. When she left the hospital, she still had some healing to do and it took a little time. She had to steer clear of anything that could cause an infection and when I got bronchitis, that meant me. ("Stop coughing near your sister! Go in the other room if you need to cough!" were the exact words my mother used.) As her scar healed, much nicer than mine did by the way, she had to be careful how she exerted herself and what she lifted. When school started a few weeks later, I carried her backpack to her classroom for her in the morning and her teacher sent someone to carry it for her when school was over. In some small way, I was finally able to be there for her just as she had always, without hesitation, been there for me.
Thankfully, with my sister's surgery, her CHD was completely corrected. She has had no set backs, takes no medication, has no limitations, doesn't even seen a cardiologists anymore. Only a scar provides evidence that she ever even had a problem. At times, I have been jealous of my sister, that one surgery fixed it all, and I will never have that. Yet my sister has had a deep understanding for me like no other. She has never rubbed it in my face, not once. She is still fighting for me, knowing when I need to rest, when I need a break, when I can push myself a little further, and when I'm milking it. In fact, I know that when she does things I will never be able to do, she does it for both of us. It's an unspoken bond that we have as sisters; sisters who share much more than just clothes. As if growing up sharing our lives wasn't enough, we share a CHD too. How many sisters can say they share that? I'll be it's not very many at all...
If you grew up watching Barney and Friends like my sister and I did, then you know about the sisters Lucy and Tina. They were such wonderful sisters...but even the best of sisters don't always get along. Lucy and Tina had this little song they would always sing after they'd gotten into an argument and Barney and their friends had encouraged them to make up. My sister and I used to sing it to each other, and still do from time to time. So, right now, this goes out to my sister:
Sometimes we're real close friends, we stay up late and talk at night.
Other times we don't get along, there are even times we fight.
But I know she's always there, and I know she'll always care.
She's my sister, I love my sister.
I've given her a great big hug when she was feeling bad.
But then again I've said some things, that have really made her mad.
But I know she's always there, and I know she'll always care.
She's my sister, I love my sister.
But I know she's always there, and I know she'll always care.
She's my sister, I love my sister. With all the medical madness my family has been through, my sister has always had a fascination with it. In May of 2016, she achieved her life long dream of becoming a doctor and I could not be prouder of her. Not only is she my sister but she is my best friend. She is the best part of me, and I carry her heart inside the half of mine. She is my other half, in every way. I don't know what I would be without the other half of my heart. God knew exactly what He was doing when He made me, and when He made my sister, and when He made us for each other.
I love you Yellie. Always.
Love,
Emmy
2/7/17
Baby Blues. And Purples too.
Happy Heart Month! I hope you all wore you red this past Friday to raise awareness for Heart Disease. If you wore maroon, I'll let it slide this time but next time... you know better! ;)
Lately, I've been thinking a lot about the word "normal" and how it means absolutely nothing in my world. I'm not normal. I don't live a normal life. Nothing about my life has been normal since the day I was born. Literally, nothing.
When my mom was in labor with me, they didn't like my heart rate. Not normal. (But not really abnormal.) So, they took me by an emergency C-section. Not normal. (But also not too abnormal.) I came out a lovely shade of blue and they figured it was because I had the cord wrapped around my neck. Again, not normal. (But not really too abnormal.) Here's where it gets good. Any possibly for 'normal' is about to be totally thrown out the window. When they unwrapped the cord from around my neck and I start to cry, I began to turn a lovely shade of purple. Definitely NOT normal. Not normal at all. And the doctors and nurses knew it. In fact, my parents have told me on multiple occasions that they could see the worry and panic in their faces. That these medical professionals; who were doing everything they could to make an abnormal situation turn into a normal one; knew that this was very abnormal and they were scared. That's not really normal either. The abnormal was just beginning...
They doctors surmised that something was wrong with my heart. Not really normal. I rode in my first ambulance at 18 hours old to a different hospital where they were equipped to "deal with" whatever was wrong with me. Not normal. At one day old, I had been gotten myself a cardiologist, (not normal) my parents were told I had Tricuspid Atresia and an Atrial Septal Defect (not normal) and instead of planning to take their new born baby home, my parents were making a plan with the doctor on how to attempt to "fix" or "correct" their new born baby's heart defect. (Really, really, not normal.)
My permanent shade of blue, which tended to turn a deep shade of purple when I was upset or cried, (Which my mom would probably want you to know was abnormally often.) stayed that way until my first surgery at two months old. The abnormal continued on with another surgery and eventually open heart surgery at 4 years old. At this point, the world normal was practically a foreign language.
Ah normalcy, I can truly say I never knew you. Every surgery, every procedure, every doctor visit was an attempt to bring me closer to normal, to try and provide whatever semblance of normalcy possible. But no matter what, normal never happened.
It's not normal to be winded walking up a flight of stairs. It's not normal to be unable to jog or run for 2 minutes without getting extreme shortness of breath. It's not normal to have to take medication every single day for the rest of my life, and to feel weak if I forget to take it. It's not normal to have giant scars on my back, down my chest, and 5 or 6 small ones across my body. It's not normal for humidity to make me lethargic, make my breathing heavy, and my irritability soar. No, none of that is really normal.
Over the years of being abnormal is so many endless ways, I've come to learn that abnormal is my normal. That in the ways I'm not like other people, I'm very much myself. What's normal to the rest of the world is out of reach for me, so I have to create my own normal. The life that Tricuspid Atresia and Atrial Septal Defect has given me is the only thing I've ever known. That's my normal. It's been a long process of understanding and accepting that my normal has a very different definition from other people. My family has lived a different normal than most. My parents haven't had a normal day of parenting in their lives. Only recently have I learned to be okay with that. Only recently have I been able to thank God for the normal He gave me because of the tremendous lessons I've learned through all the abnormalities. (I'll save those stories for another post.)
When I was first born, and the doctors were scared, and my parents were worried and nothing seemed be to going as planned...or normal; my parents prayed that whatever happened God would give them the grace to handle it, knowing that He would be there, He would be sovereign, He would be provide mercy, and comfort, and peace; no matter what the outcome was. I pray that prayer a lot. I will continue to pray it often. And I believe that He still answers it, just like He did for my parents then, and just like He has done every day of my abnormal life. He is the creator of my heart, the author of my abnormal life. To Him, I'm fearfully, perfectly, wonderfully made. To Him, there is no 'defect' or 'condition'. To Him, I am normal. Just knowing that makes facing every abnormal day worth it in every abnormal way.
Hope your day is as normal as they come!
-Emmy
PS: Don't know what Tricuspid Atresia is? Feel to free to ask me or to look here!
PPS: Don't know what an Atrial Septal Defect is? Feel to ask me or to look here!
Lately, I've been thinking a lot about the word "normal" and how it means absolutely nothing in my world. I'm not normal. I don't live a normal life. Nothing about my life has been normal since the day I was born. Literally, nothing.
When my mom was in labor with me, they didn't like my heart rate. Not normal. (But not really abnormal.) So, they took me by an emergency C-section. Not normal. (But also not too abnormal.) I came out a lovely shade of blue and they figured it was because I had the cord wrapped around my neck. Again, not normal. (But not really too abnormal.) Here's where it gets good. Any possibly for 'normal' is about to be totally thrown out the window. When they unwrapped the cord from around my neck and I start to cry, I began to turn a lovely shade of purple. Definitely NOT normal. Not normal at all. And the doctors and nurses knew it. In fact, my parents have told me on multiple occasions that they could see the worry and panic in their faces. That these medical professionals; who were doing everything they could to make an abnormal situation turn into a normal one; knew that this was very abnormal and they were scared. That's not really normal either. The abnormal was just beginning...
They doctors surmised that something was wrong with my heart. Not really normal. I rode in my first ambulance at 18 hours old to a different hospital where they were equipped to "deal with" whatever was wrong with me. Not normal. At one day old, I had been gotten myself a cardiologist, (not normal) my parents were told I had Tricuspid Atresia and an Atrial Septal Defect (not normal) and instead of planning to take their new born baby home, my parents were making a plan with the doctor on how to attempt to "fix" or "correct" their new born baby's heart defect. (Really, really, not normal.)
My permanent shade of blue, which tended to turn a deep shade of purple when I was upset or cried, (Which my mom would probably want you to know was abnormally often.) stayed that way until my first surgery at two months old. The abnormal continued on with another surgery and eventually open heart surgery at 4 years old. At this point, the world normal was practically a foreign language.
Ah normalcy, I can truly say I never knew you. Every surgery, every procedure, every doctor visit was an attempt to bring me closer to normal, to try and provide whatever semblance of normalcy possible. But no matter what, normal never happened.
It's not normal to be winded walking up a flight of stairs. It's not normal to be unable to jog or run for 2 minutes without getting extreme shortness of breath. It's not normal to have to take medication every single day for the rest of my life, and to feel weak if I forget to take it. It's not normal to have giant scars on my back, down my chest, and 5 or 6 small ones across my body. It's not normal for humidity to make me lethargic, make my breathing heavy, and my irritability soar. No, none of that is really normal.
Over the years of being abnormal is so many endless ways, I've come to learn that abnormal is my normal. That in the ways I'm not like other people, I'm very much myself. What's normal to the rest of the world is out of reach for me, so I have to create my own normal. The life that Tricuspid Atresia and Atrial Septal Defect has given me is the only thing I've ever known. That's my normal. It's been a long process of understanding and accepting that my normal has a very different definition from other people. My family has lived a different normal than most. My parents haven't had a normal day of parenting in their lives. Only recently have I learned to be okay with that. Only recently have I been able to thank God for the normal He gave me because of the tremendous lessons I've learned through all the abnormalities. (I'll save those stories for another post.)
When I was first born, and the doctors were scared, and my parents were worried and nothing seemed be to going as planned...or normal; my parents prayed that whatever happened God would give them the grace to handle it, knowing that He would be there, He would be sovereign, He would be provide mercy, and comfort, and peace; no matter what the outcome was. I pray that prayer a lot. I will continue to pray it often. And I believe that He still answers it, just like He did for my parents then, and just like He has done every day of my abnormal life. He is the creator of my heart, the author of my abnormal life. To Him, I'm fearfully, perfectly, wonderfully made. To Him, there is no 'defect' or 'condition'. To Him, I am normal. Just knowing that makes facing every abnormal day worth it in every abnormal way.
Hope your day is as normal as they come!
-Emmy
PS: Don't know what Tricuspid Atresia is? Feel to free to ask me or to look here!
PPS: Don't know what an Atrial Septal Defect is? Feel to ask me or to look here!
2/1/17
Happy Heart Month
In case you didn't know, February is heart month. February is the month when awareness is raised for Heart Disease, specifically for Congenital Heart Disease In a world when we have awareness about literally everything, it's easy to roll your eyes at another month of awareness and disregard it but, raising CHD awareness can help to raise CHD funding. Raising CHD funding can help to raise CHD research. CHD research can hopefully help to someday find a CURE for children and adults just like me!
I think most of the time when we think of heart disease or heart defects, we think older, elderly people. But, the very word congenital means from birth. It means that about 40,000 babies are born in the US alone with a congenital heart defect each year. Think about how many are born all over the world. And if those babies are blessed enough to live in a country that has advanced medical technology, they are possibly able to live, able to survive past the first few hours and days of life. Possibly. Millions of people in the US are thought be living with CHD. Some cases are obviously more severe than others but, we don't have trackers implanted in us, so I don't think anyone can get an exact number.
Still, as of now,there is no cure. Heart disease is the number one killer among woman and CHD pays no mind to gender, race, or religion. We live in a fallen world where sickness and disease have come as a result of the fall. God told Adam and Eve in the garden that there were be immeasurable consequences for their sins, and our world today is exactly that. Yet, God is still good. He takes even the worst situations and uses it for good. He gave us brilliant minds, doctors, researchers, chemists, pharmacist, and more...all who are working to bring about healing, comfort, and providing hope in a world where we would otherwise be hopeless. God doesn't enjoy sitting around watching suffer, He enjoys watching use what He's given us to make the world we live in an even better place for those yet to come.
Still, as of now,there is no cure. Heart disease is the number one killer among woman and CHD pays no mind to gender, race, or religion. We live in a fallen world where sickness and disease have come as a result of the fall. God told Adam and Eve in the garden that there were be immeasurable consequences for their sins, and our world today is exactly that. Yet, God is still good. He takes even the worst situations and uses it for good. He gave us brilliant minds, doctors, researchers, chemists, pharmacist, and more...all who are working to bring about healing, comfort, and providing hope in a world where we would otherwise be hopeless. God doesn't enjoy sitting around watching suffer, He enjoys watching use what He's given us to make the world we live in an even better place for those yet to come.
In my 29ish years of life I've had the privilege of meeting quite a few people with living with a CHD, and most of the time, I didn't know they had a Congenital Heart Defect just by looking at them. Our hospital war stories don't make good lunch room conversation, and our numerous scars our usually hidden. We don't want to people to see us struggling to catch our breath walking from the parking lot to the entrance of the mall or know about the exhaustion we feel because of the humidity outside during our 4th of July picnic. Most people who meet me are shocked to hear, 'I was born with half of my heart...' because looking at me you would never know. I don't "look sick" or "look diseased" but I very much am. Every day I fight (and I beat) the odds that CHD has stacked against me. So, during February, I'm going to let you know about my fight. I'm gong let you know about how I'm living with a practically unseen disease. I'm going to tell my story and hopefully hear some of your stories. I'm going to share pictures, I'm going to tell war stories, and I'm going to share the good and I'm going to share the bad of CHD. I'm going to let the world (or at least the part of the world that I am connected to) about CHD. I'm going to spread awareness and I'm going to raise awareness for people with CHD, people like ME!
Happy Heart Month!
With all my half of a heart,
Emmy
1/29/17
Becoming Myself (Book Review)
I finally finished a book and it didn't take me all year long! (Patting myself on the back!) I'm not an avid reader so a book has to be either really good, really interesting, or a requirement for something in order for me to read it.
The book Becoming Myself by Stasi Eldredge gets 5 stars from me. It's excellent! I've read several other books by Stasi and her husband John. All of them have been excellent! They have a ministry called Ransomed Heart Ministries and their books are for both men and women about relationships with the opposite sex, with family and friends, with God, understanding the heart of God, and becoming the best God created us and called us to be. I LOVE their style of writing, especially Stasi's. It's like she speaks my language.
I came across the book at my cousin's house. I went visit her and I saw it on an end table in her living room. I picked it up and said, "Oh, I love Stasi Eldredge!" and she said, "Oh really? Take it! I don't have time to read it so take it and let me know how it is." (Or something along those lines...) So, that's what I did.
Becoming Myself is a book about how we as women, can take all our woman-ness (which, encompasses quite A LOT of things) and we can seek the heart of God because His heart is for us. He created us, as women, created our hearts, created our bodies, created our emotions, our feelings, our thoughts...everything about us. He made and designed and purposed...to be beautifully, and uniquely different woman...and very different from man.
Perhaps I liked the book so much because I sometimes struggle to figure out how to "be myself". If we are honest, I think we all do at times. I struggle to be and balance the person I want to be with the person I am currently. I have good intentions to be and act a certain way, but that it doesn't always happen. I have dreams and desires in my female heart that are uniquely placed there by God, yet I often try to stifle them in order to be something or act or certain way, to become who others expect, or want, or need me to be. I don't think I even fully see myself as a "full grown woman" yet. Perhaps that's because I haven't grown since 8th grade, I can wear pants I wore in high school, and until recently I lived with my mom and dad. I am not fully confident in who "myself" is.
I think part of it is that I was raised by VERY strong, intelligent, women of true inner (and outer) beauty, and incredible faith. Both my grandmothers, my mom, my aunts...to me, they are the definition of women of God. They raised me to be all those things, taught me to be a lady in every sense of the word, yet I feel like I will never quite attain it. I feel as though, I'm continually striving to see things as they do, to think like they do, to believe and trust and hope and have faith like they do. And if I were to have a daughter one day, would I ever be able to raise her they way they have raised me? I have these thoughts, and I don't think I'm alone in thinking them.
But then I remember that I'm different. I've always been different. I've been through things in life that no many have. Each one of us is different. Each one of us has a story that has made us uniquely us; that no one else can truly relate to. I'm walking this earth (literally) with only half of my heart working and pumping, while (figuratively) I'm wearing it on my sleeve. And God didn't make a mistake with me. He made me exactly, precisely, perfectly, the way I am, the way He intended me to be. That's how he made you too. And you too! And you, and you, and you, and you, and you!
He made us woman on purpose. He made woman for a purpose. He made woman with purpose. Not so we could march around naked with signs in our hands screaming profanities and refusing to shave our armpits. He made us so we could do all that men couldn't do. He made us the companion to man. He made us bare children. He made us see things from a different perspective. He made us to pray different prayers. He made us to have our own opinions. He made us to share more of His heart. He made us to display beauty and compassion, kindness and care. He made all of creation, took a seat back and looked at it, and then said, "WOMAN!" All of creation had occurred before He made woman but it wasn't right yet. We are what made it complete. We are the cherry ( and the sprinkles) on top!
Stasi talks about this in several of her books, and in Becoming Myself she goes even further and saying that accepting this fact about ourselves as women, means accepting all that comes along with it...the good, the bad, the ugly. The good hair and make up days, the bad hair and bad mood days, and the ugly one week out of the month where we act like and feel like a crazy person whose body seems like it's trying to kill us from the inside. When we say things like, "I hate being a woman!", even if it's only a few days out of each month, we are saying that we hate what God has created, saying we don't want to accept being who, what and how He created us. I am incredibly guilty of this. I'm an emotional person as it is and I'd be lying if I didn't think that men seem to have the easy way out. But if I believe that God didn't make a mistake with my heart, that also means I believe He didn't make a mistake in making me a woman, and all that comes with woman-hood. As my heart dreams and desires that stem from being a woman, I know that He planted those in me. He has dreams for me too, a purpose beyond what I can even imagine. And those amazing, purposefully plans are based on the sole fact that I am a woman.
And when He created me, us, as woman, He didn't create us to navigate all our thoughts and feelings, and once a month need to consume mass amounts of chocolate by ourselves. He gave us Him, He gave us His son, He gave us the Holy Spirit. For each step, each thought, each tear, each laugh, each heartache, each bad hair day and good one...we are never alone. He wis always with us, loving us through it, providing our needs for the moment, guiding our each and every step. He is refuge and safe place. In Him we find freedom. We are free to embrace being woman, free to become ourselves....exactly who God wants us to be.
Throughout the book, Stasi uses the stories of famous woman in history, in the bible, and even her own personal stories to talk about love, relationships, body issues and image, and so much more. Each page is full of incredible wisdom and solid, biblical truth. You know what, just go buy the book right now and read it for yourself. You will NOT be disappointed.
I'll end this lengthy post the way the book ends: Let's go together. Let's press on to the goal that is set before us--to become fully transformed, fully alive, fully ourselves, fully His. To him who is able to keep you from falling and to present you before his glorious presence without flight and with great joy--to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forever-more! Amen. (Jude vv 24-25)
Go, be yourself.
-Emmy
Eldredge, S. (2013). Becoming myself: embracing God's dream of you. Colorado Springs, CO: David C Cook.
The book Becoming Myself by Stasi Eldredge gets 5 stars from me. It's excellent! I've read several other books by Stasi and her husband John. All of them have been excellent! They have a ministry called Ransomed Heart Ministries and their books are for both men and women about relationships with the opposite sex, with family and friends, with God, understanding the heart of God, and becoming the best God created us and called us to be. I LOVE their style of writing, especially Stasi's. It's like she speaks my language.
I came across the book at my cousin's house. I went visit her and I saw it on an end table in her living room. I picked it up and said, "Oh, I love Stasi Eldredge!" and she said, "Oh really? Take it! I don't have time to read it so take it and let me know how it is." (Or something along those lines...) So, that's what I did.
Becoming Myself is a book about how we as women, can take all our woman-ness (which, encompasses quite A LOT of things) and we can seek the heart of God because His heart is for us. He created us, as women, created our hearts, created our bodies, created our emotions, our feelings, our thoughts...everything about us. He made and designed and purposed...to be beautifully, and uniquely different woman...and very different from man.
Perhaps I liked the book so much because I sometimes struggle to figure out how to "be myself". If we are honest, I think we all do at times. I struggle to be and balance the person I want to be with the person I am currently. I have good intentions to be and act a certain way, but that it doesn't always happen. I have dreams and desires in my female heart that are uniquely placed there by God, yet I often try to stifle them in order to be something or act or certain way, to become who others expect, or want, or need me to be. I don't think I even fully see myself as a "full grown woman" yet. Perhaps that's because I haven't grown since 8th grade, I can wear pants I wore in high school, and until recently I lived with my mom and dad. I am not fully confident in who "myself" is.
I think part of it is that I was raised by VERY strong, intelligent, women of true inner (and outer) beauty, and incredible faith. Both my grandmothers, my mom, my aunts...to me, they are the definition of women of God. They raised me to be all those things, taught me to be a lady in every sense of the word, yet I feel like I will never quite attain it. I feel as though, I'm continually striving to see things as they do, to think like they do, to believe and trust and hope and have faith like they do. And if I were to have a daughter one day, would I ever be able to raise her they way they have raised me? I have these thoughts, and I don't think I'm alone in thinking them.
But then I remember that I'm different. I've always been different. I've been through things in life that no many have. Each one of us is different. Each one of us has a story that has made us uniquely us; that no one else can truly relate to. I'm walking this earth (literally) with only half of my heart working and pumping, while (figuratively) I'm wearing it on my sleeve. And God didn't make a mistake with me. He made me exactly, precisely, perfectly, the way I am, the way He intended me to be. That's how he made you too. And you too! And you, and you, and you, and you, and you!
He made us woman on purpose. He made woman for a purpose. He made woman with purpose. Not so we could march around naked with signs in our hands screaming profanities and refusing to shave our armpits. He made us so we could do all that men couldn't do. He made us the companion to man. He made us bare children. He made us see things from a different perspective. He made us to pray different prayers. He made us to have our own opinions. He made us to share more of His heart. He made us to display beauty and compassion, kindness and care. He made all of creation, took a seat back and looked at it, and then said, "WOMAN!" All of creation had occurred before He made woman but it wasn't right yet. We are what made it complete. We are the cherry ( and the sprinkles) on top!
Stasi talks about this in several of her books, and in Becoming Myself she goes even further and saying that accepting this fact about ourselves as women, means accepting all that comes along with it...the good, the bad, the ugly. The good hair and make up days, the bad hair and bad mood days, and the ugly one week out of the month where we act like and feel like a crazy person whose body seems like it's trying to kill us from the inside. When we say things like, "I hate being a woman!", even if it's only a few days out of each month, we are saying that we hate what God has created, saying we don't want to accept being who, what and how He created us. I am incredibly guilty of this. I'm an emotional person as it is and I'd be lying if I didn't think that men seem to have the easy way out. But if I believe that God didn't make a mistake with my heart, that also means I believe He didn't make a mistake in making me a woman, and all that comes with woman-hood. As my heart dreams and desires that stem from being a woman, I know that He planted those in me. He has dreams for me too, a purpose beyond what I can even imagine. And those amazing, purposefully plans are based on the sole fact that I am a woman.
And when He created me, us, as woman, He didn't create us to navigate all our thoughts and feelings, and once a month need to consume mass amounts of chocolate by ourselves. He gave us Him, He gave us His son, He gave us the Holy Spirit. For each step, each thought, each tear, each laugh, each heartache, each bad hair day and good one...we are never alone. He wis always with us, loving us through it, providing our needs for the moment, guiding our each and every step. He is refuge and safe place. In Him we find freedom. We are free to embrace being woman, free to become ourselves....exactly who God wants us to be.
Throughout the book, Stasi uses the stories of famous woman in history, in the bible, and even her own personal stories to talk about love, relationships, body issues and image, and so much more. Each page is full of incredible wisdom and solid, biblical truth. You know what, just go buy the book right now and read it for yourself. You will NOT be disappointed.
I'll end this lengthy post the way the book ends: Let's go together. Let's press on to the goal that is set before us--to become fully transformed, fully alive, fully ourselves, fully His. To him who is able to keep you from falling and to present you before his glorious presence without flight and with great joy--to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forever-more! Amen. (Jude vv 24-25)
Go, be yourself.
-Emmy
Eldredge, S. (2013). Becoming myself: embracing God's dream of you. Colorado Springs, CO: David C Cook.
1/7/17
A Girl of Very Little Brain
It's a snowy Saturday here in NC. Which means the entire Triangle area has been shut down. Literally. The mayhem started on Tuesday. Yes, Tuesday. When the weather man called for snow people went into panic mode, took all the bread off the shelves, sent everyone home early, and hunkered down. Crazy. All the northern transplants are sitting here laughing, but staying inside because it is very icy out there...
I stayed in doors today, did some laundry and tried this recipe I saw on Pinterest for veggie nuggets (I can hear my sister's 'I'm judging you' voice, "What? Veggie Nuggets? Who are you!?") that I saw on Pinterest, as with most other things people try on Pinterest...it was a failure. I don't know what I did wrong but they were too mushy. They didn't solidify. Perhaps it was the fact that I used the wrong peppers AND 'regular' beets instead of golden beets. (It looked like a crime scene in my kitchen for a while!) Either way, I stuck with it and made them. They taste good, they just look weird. And they are a very deep shade of pink. HA! If anyone has other ideas for veggie nuggets that actually work...feel free to share! I'm always looking for a creative way to get my veggies!
Since I'm just sitting here, being interrupted from time to time by my roomie showing me "abs inspirations" for the abs we are going to get by the summer so she can look good in the bathing suits she impulsively bought online today, I decided to share my brief medical history of 2016. It was pretty noteworthy for me, considering I don't usually ever meet my insurance premiums. I sure did this year...but for great reasons!
Moving at the beginning of the year meant a lot of good things for me however, it meant leaving behind my doctors, my medical advocates (my parents) and the overall sense of security I had. I could not let my little half a heart stop me from walking where God had called me to walk. After all, He made me the way I am and I doubt that He would have lead me here and said, "Ooops, I forgot about your medical issues! Sorry!".
When I got here, I got myself settled in and began my search to find a new doctor. Thankfully, this area is FILLED with some the best medical research and minds. The Triangle area of NC, is filled with universities, hospitals, and medical research. When looking for a doctor, I wanted them to be reputable, exude confidence (but not arrogance), and personable. If I'm going to be their patient for a long while, I needed to make sure I liked them! I also wanted a doctor that specialized in Adult Congenital Heart Disease. See, not too many adults with CHD are alive today. Only in recent years have people with CHD been living long enough to make it to adult hood. I wanted to make sure that whoever my new doctor was, knew how to get through adulthood and all the challenges that may bring. I did some research, narrowed it down, and made an appointment to see an Adult Congenital Cardiologist at Duke University Medical Center.
My cardiologist appointment made me nervous. I didn't sleep well the night before, I had to pray and take a deep breath before I walked in. I sat anxiously in the waiting room, and had to concentrate on relaxing during the exams. I got an Echo and an EKG, which at this point I could give myself in my sleep. I got some blood work done too while I was there. Not much has changed in 26 years yet, fear tried to get the best of me again, BUT...My cardiologist appointment was also a reminder of the faithfulness of God and the power of prayer. Every year I am reminded that God made me perfectly, and He has been in control since before I was born. Every year I am reminded and thankful for all the numerous prayers that have been prayed, and have been answered, over the years. Every year I leave my appointment feeling thankful, blessed, and with tears of joy in my eyes. Every year I am reminded I have nothing to fear. This year was no exception. God was, once again, faithful. In fact, my doctor said to me that my Fontan (the operation they did to "fix" me) was "One of the best Fontan's I've ever seen!"
The appointment was a true success, I loved, loved, LOVED my cardiologist! He was all the things I wanted and was looking for and more! He spent almost an hour with me, talking to me, explaining things to me, asking me questions and listening to me. He showed me diagrams and drew me pictures, he explained my test results to me, and went through my medical records with me. Even his nurse was amazing! He was an answer to my prayers! [Side bar:If you know anyone in this area who needs a great Adult CHD Cardiologist...send them my way!]
Feeling good about myself, I made an appointment to see a Neurologist, as recommended by my Cardiologist. He wanted me follow up about the seizure medicine I was on, as he didn't feel comfortable renewing my prescription. (Much appreciated, doc!) When I saw the Neurologist, I told him my story, of vertigo, and vomiting, and the diagnosis of 'ocular seizures' and how I've been on the medicine for several years symptom free. He listened to me, asked me questions, looked at my medical files, looked at my previous CT scans, and then he shared his point of view. He told me that he didn't think that I was having seizures, that from what I described it sounded like bad vertigo that seems to have coincidentally gone away with the medicine. He told my scans looked normal, perhaps I had a smaller brain than average. (Yes, he said I have a small brain. He said, "I mean that in the nicest way possible. You are a small person so it makes sense. I'm sure you are very, very intelligent!" I just laughed. I laughed so hard! Then I told him not to tell my siblings or they would make fun of me forever.)
The most important thing the Neuroligist said during my visit was that he felt it wasn't necessary for me to be on any additional medications long term if I didn't need to be. He proposed that I take a break from the seziure medicine for the summer, as to aliveate fear of having an episode at work, and to see if it was possible to remain off of it. I appreciated how he made feel it was my decision too. He respected my concerns, and yet made me feel confident in his opinion and medical expertise. I truly felt at ease and so when I went camping with friends for my birthday weekend, the first weekend of summer, I didn't pack the sezuire meds. I didn't take them all summer and I have't taken it since. I visited my doctor again at the end of the summer. He was as happy as was I with the outcome. A whole summer off the meds and whole summer of no symptoms! Although the start of the new school year and the stress that brings made me nervous, he reassured me that I could call the moment I neded to, as he will remain my doctor. Thankfully, I haven't needed to yet. Once again though, God showed me His faithfulness and that He does hear and answer my prayers.
This year has shown me so many things, but for me, "medically speaking" as they say, God showed me, once again, that He knows the plans He has for me. God has declared it. God plans to prosper me and not to harm me. God gives me hope and He gives me a future. I find God when I seek Him with my whole half of a heart. This year, I am determined to live my life with out fear...
...and to find a way to have my recipes come out looking the way they do on Pinterest!
Happy Snow Saturday!
-Emmy
I stayed in doors today, did some laundry and tried this recipe I saw on Pinterest for veggie nuggets (I can hear my sister's 'I'm judging you' voice, "What? Veggie Nuggets? Who are you!?") that I saw on Pinterest, as with most other things people try on Pinterest...it was a failure. I don't know what I did wrong but they were too mushy. They didn't solidify. Perhaps it was the fact that I used the wrong peppers AND 'regular' beets instead of golden beets. (It looked like a crime scene in my kitchen for a while!) Either way, I stuck with it and made them. They taste good, they just look weird. And they are a very deep shade of pink. HA! If anyone has other ideas for veggie nuggets that actually work...feel free to share! I'm always looking for a creative way to get my veggies!
Since I'm just sitting here, being interrupted from time to time by my roomie showing me "abs inspirations" for the abs we are going to get by the summer so she can look good in the bathing suits she impulsively bought online today, I decided to share my brief medical history of 2016. It was pretty noteworthy for me, considering I don't usually ever meet my insurance premiums. I sure did this year...but for great reasons!
Moving at the beginning of the year meant a lot of good things for me however, it meant leaving behind my doctors, my medical advocates (my parents) and the overall sense of security I had. I could not let my little half a heart stop me from walking where God had called me to walk. After all, He made me the way I am and I doubt that He would have lead me here and said, "Ooops, I forgot about your medical issues! Sorry!".
When I got here, I got myself settled in and began my search to find a new doctor. Thankfully, this area is FILLED with some the best medical research and minds. The Triangle area of NC, is filled with universities, hospitals, and medical research. When looking for a doctor, I wanted them to be reputable, exude confidence (but not arrogance), and personable. If I'm going to be their patient for a long while, I needed to make sure I liked them! I also wanted a doctor that specialized in Adult Congenital Heart Disease. See, not too many adults with CHD are alive today. Only in recent years have people with CHD been living long enough to make it to adult hood. I wanted to make sure that whoever my new doctor was, knew how to get through adulthood and all the challenges that may bring. I did some research, narrowed it down, and made an appointment to see an Adult Congenital Cardiologist at Duke University Medical Center.
My cardiologist appointment made me nervous. I didn't sleep well the night before, I had to pray and take a deep breath before I walked in. I sat anxiously in the waiting room, and had to concentrate on relaxing during the exams. I got an Echo and an EKG, which at this point I could give myself in my sleep. I got some blood work done too while I was there. Not much has changed in 26 years yet, fear tried to get the best of me again, BUT...My cardiologist appointment was also a reminder of the faithfulness of God and the power of prayer. Every year I am reminded that God made me perfectly, and He has been in control since before I was born. Every year I am reminded and thankful for all the numerous prayers that have been prayed, and have been answered, over the years. Every year I leave my appointment feeling thankful, blessed, and with tears of joy in my eyes. Every year I am reminded I have nothing to fear. This year was no exception. God was, once again, faithful. In fact, my doctor said to me that my Fontan (the operation they did to "fix" me) was "One of the best Fontan's I've ever seen!"
The appointment was a true success, I loved, loved, LOVED my cardiologist! He was all the things I wanted and was looking for and more! He spent almost an hour with me, talking to me, explaining things to me, asking me questions and listening to me. He showed me diagrams and drew me pictures, he explained my test results to me, and went through my medical records with me. Even his nurse was amazing! He was an answer to my prayers! [Side bar:If you know anyone in this area who needs a great Adult CHD Cardiologist...send them my way!]
Feeling good about myself, I made an appointment to see a Neurologist, as recommended by my Cardiologist. He wanted me follow up about the seizure medicine I was on, as he didn't feel comfortable renewing my prescription. (Much appreciated, doc!) When I saw the Neurologist, I told him my story, of vertigo, and vomiting, and the diagnosis of 'ocular seizures' and how I've been on the medicine for several years symptom free. He listened to me, asked me questions, looked at my medical files, looked at my previous CT scans, and then he shared his point of view. He told me that he didn't think that I was having seizures, that from what I described it sounded like bad vertigo that seems to have coincidentally gone away with the medicine. He told my scans looked normal, perhaps I had a smaller brain than average. (Yes, he said I have a small brain. He said, "I mean that in the nicest way possible. You are a small person so it makes sense. I'm sure you are very, very intelligent!" I just laughed. I laughed so hard! Then I told him not to tell my siblings or they would make fun of me forever.)
The most important thing the Neuroligist said during my visit was that he felt it wasn't necessary for me to be on any additional medications long term if I didn't need to be. He proposed that I take a break from the seziure medicine for the summer, as to aliveate fear of having an episode at work, and to see if it was possible to remain off of it. I appreciated how he made feel it was my decision too. He respected my concerns, and yet made me feel confident in his opinion and medical expertise. I truly felt at ease and so when I went camping with friends for my birthday weekend, the first weekend of summer, I didn't pack the sezuire meds. I didn't take them all summer and I have't taken it since. I visited my doctor again at the end of the summer. He was as happy as was I with the outcome. A whole summer off the meds and whole summer of no symptoms! Although the start of the new school year and the stress that brings made me nervous, he reassured me that I could call the moment I neded to, as he will remain my doctor. Thankfully, I haven't needed to yet. Once again though, God showed me His faithfulness and that He does hear and answer my prayers.
This year has shown me so many things, but for me, "medically speaking" as they say, God showed me, once again, that He knows the plans He has for me. God has declared it. God plans to prosper me and not to harm me. God gives me hope and He gives me a future. I find God when I seek Him with my whole half of a heart. This year, I am determined to live my life with out fear...
...and to find a way to have my recipes come out looking the way they do on Pinterest!
Happy Snow Saturday!
-Emmy
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