Tuesday, February 5, 2013

Here's My Sign...

Our Yearly Signs for Go Red Month!

Cache's Cochlear Implant Journey

Our cochlear implant journey has been an exciting, scary, and amazing journey so far. Our decision for implanting Cache was never an easy one. We only want what is best for him, and we decided opening this door would only help him. While our expectations of oral outcomes are not high, we are very hopeful it will be successful, because honestly, there is nothing Cache does that is not with all his broken heart. We really did our research on this one. I asked advice from people in our same position, Deaf friends, and the people who work with Cache at school. We took it all in and weighed all our options. While my brain told me Cache did not “need” this, my heart told me Cache loves sound, loves speech, and wants more than anything to have an easier time communicating with his hearing peers. That is what sold me. Cache will always have ASL, and it will ALWAYS be is first language. Maybe one day he won’t like his cochlear implant, and that is fine because he will always have ASL. There is many people we may have disappointed in our choice, many people who were excited for us, but the most important thing was, that Cache was happy. Today I am happy to report he LOVES his cochlear implant! He is doing very well and picking up sound at a pretty rapid pace. I love talking to him, and I can even give a whisper of his name and he turns. Pretty amazing stuff! But then again, it is Cache, and he NEVER stops amazing me. As for the surgery, he did well. This is the one thing I was a wreck for since being under anesthesia can be so dangerous for his heart. Coming out of the anesthesia was a little bit of a challenge and his heart was not 100% cooperating, but he pulled through and we got to go home the next day.

The switch on day was amazing. He was over excited to have his devise turned on! He was in awe of his own little voice. It is definitely a day I will never forget! He was so excited to get in a bath with his new cochlear implant! Yup, it is waterproof! Now we just work hard at listening and hope speech comes. I think it will because my boy is amazing and defies all laws and rules! The Switch on....

Friday, October 5, 2012

My Perspective...

I want to give you my perspective on having a heart child. Now this will differ from other heart kids because my kid’s heart condition is unique. My kids look healthy, they look like normal children, play like normal children, and there is no outside hint that, inside their tiny little chest, their heart is not beating like a normal child. Now, take how much you worry about your child. Even the simplest of worries, will they get picked on, will they eat enough, did they brush their teeth, did they have a good day at school, are they going to look both ways before they cross a street? These are normal worries about your child and rightfully so. As parents we naturally worry about our children. See, I have all those same worries, but what can, and at times consumes me, is whether my child will make it through the day without dyeing. Maybe you think that is dramatic, but the fact of the matter is it is true. EVERY DAY I send my children to school I have to fight the fear that I may get a horrible phone call today. Every day I ask myself, is today going to be the day one of my children collapses and dies? If you think I am being dramatic, I am not. It is a very deep rooted fear I fight every day. I can tell you, one little phone number from my children’s school shows on the caller ID, my knees weaken, my heart instantly speeds up, and it is all I can do to breath. I live with fear every day because losing one of my children is something I just can’t bare. Yet it is something I must come to terms with. While you all may sit there and say I am crazy, or that it is not going to happen, let me remind you that it has happened. My son has suffered sudden cardiac arrest. I have always put it lightly, he had a deadly arrhythmia, but the truth of the matter, my son died, and with the work of good technology (that is the only way the doctors can explain it) his pace maker saved him. I don’t want pity, I just want you to realize that there are a few moms and dads out there with my same reality. It is a horrible reality we face every day. While I try not to live in fear because it can and will consume you, there is an internal battle we face and demons we fight daily, and at times, that alone is exhausting.

Sunday, January 29, 2012

CHD Awareness

My teenage years were full of sports and exercise. There was not a day that went by I didn’t have some sort of game or practice. My days consisted school, track, soccer, a jog, and finished up with some strength training. Never would you have guessed my heart was broken. I was older, married and about to have my second child, Cache. I was off to my usual 32 week check-up at my obstetrician office. That was the day our lives changed forever. It was that exciting moment when you get to hear that slushing heart beat and know that the big bump in your belly is this living being in your body. That slushing sound turned out to be my nightmare. My doctor explained to me that the baby’s heart rate was far too low and that my son had something wrong with him. This is something you never expect to hear when you are having a baby. Babies don’t come out sick? At least that was my naive way of thinking. My doctor told me to walk over to labor and delivery and he would meet me there as soon as he was finished with patients he had in his office. When I got to Labor and Delivery, they strapped me up to all these machines, and I had instant panic around me. Nurses were rushing around and almost screaming. All I could do was sit there and wonder what was going on. Next thing you know I was being prepped for an emergency C-section. That was until my doctor walked in the door and told them all to calm down. It was a sigh of relief. My doctor performed an ultra sound along with what felt like another 30 doctors. They all agreed with one thing, my baby was fine for now and needed to stay right where he was. He stated that there was something defiantly wrong with his heart, but until he was born they would not know what. After 36 weeks and lots of daily monitoring and doctor visits, I was induced and my beautiful little boy Cache came into the world fighting like a champ. The next few hours were about to change our lives forever. Cache was diagnosed with Long QT syndrome a few hours after birth and was immediately transferred to Sunrise Children’s Hospital. I was discharged and headed there to figure out just exactly what was to happen next. There we were greeted by the pediatric cardiologist who had done an ultrasound on Cache’s heart in utero. He began to explain the details of Long QT syndrome and how they treat it. He then told us they could not treat Cache because his heart rate was already dangerously low. To fix this, our son was to have open heart surgery and have a pacemaker placed. A pacemaker, isn’t that for old people? We were numb and just in a really bad dream. Three days after our perfect son’s birth he was placed with a pacemaker in his little tiny tummy. I remember that day clearly and as I held him waiting for the surgeons, Landslide by Fleetwood Mac was playing on the radio. It was a Saturday morning and we meet the surgical team. They answered all are questions and we walked my infant son down a long hall. We gave him a kiss and we said good-by. The hospital waiting room was a ghost town. We waited, and waited, and waited, and then did a little more waiting. I clearly remember seeing the whole surgical team walk into the deserted waiting room. My heart sank and I think my knees nearly hit the floor. Why were all of them coming in? Why did they all need to talk to us? As we approached them the head surgeon said “Everything went great.” The best words we had heard our whole lives. I am not the “reach out and give a hug to a stranger” kind of girl but I did just that. The next few weeks, after Cache’s pacemaker placement, had its up and downs. His heart rejected the pacemaker and fluid began to build around his heart. They eventually had to go in and put a drain in to his heart to relieve the fluid. We had trouble with feeding and jaundice. It was three weeks to the day that my son was able to come home and have his two older brothers hold him for the first time. Life with Cache has proven to be a challenging one. Cache never passed a newborn hearing screen and while most parents would be freaking out about this, we had much bigger fish to fry. We were told at the time of his birth that Cache could have a very rare form of Lonq QT Syndrome called Jervell and Lange-Nielsen syndrome. This rare form of Long QT Syndrome causes sever to profound hearing loss. At about the age of three, this was confirmed through genetic testing but Cache also carries another genetic strain as well, Long QT Syndrome type 1. No one, as of then, had ever carried these two genes on the national registry. He had a double dose. It was also confirmed that I too had Long QT Syndrome type 1 and so did my other two biological children. Through the years Cache has had many obstacles he overcame. At the age of 2 ½ he had a deadly arrhythmia and was lucky to be alive. After that arrhythmia, it was then decided Cache needed his pacemaker replaced with an Implantable Cardiac Defibrillator (ICD) and have a left cardiac sympathetic denervation. It was a little over a year after the ICD placement in his stomach that it became infected. The ICD was removed and he was placed in the Pediatric Intensive Care Unit for a week until it was decided that he was big enough to have an ICD implanted in his chest. A few weeks later he had to go back in and have pieces removed that had been left in him on accident. Cache is a thriving child and plays like any other child. We have been very blessed and we all consider him our life saver. He not only saved his Mom, brother, and sister, but his Uncle and three cousins. I am the luckiest Mom in the world to be Cache’s Mom. He has given me far more then I could ever give him. Cache inspires people with his amazing smile, big blue eyes, and love of life. Cache has taught us and everyone surrounded by him that life is far too short and life is more than just the daily grind. It is about living life to the fullest and making sure those who you love, know you love them. It is about today, and living in today, not about what can happen in the future. We have today and that is all we need to get to tomorrow.

Thursday, December 29, 2011

I debated on posting this...

I obviously choose to do it. I wrote this paper for my English class. I remember him sitting there on his recliner chair late at night watching television with the volume as loud as it possible could go. Maybe it was to drown out the sound of us four children. The constant call for my mother to get him a drink or to get him some food would make us all turn our heads. He was a quiet man, but when he spoke, we all listened. There was no question of when he was mad; you ran the other way as fast as you could. He never did engage much in my childhood. I remember thinking how odd it was that he was going to school to become a teacher when he hardly ever focused on my studies. It seemed the television held a much greater interest to him. Maybe he was just tired after all; he was going to school, holding a full time job sometimes two, to keep our family running. Maybe his lack of engagement into my life was just that, he was trying to make sure I had what I needed to stay engaged. The perception I had of my father, as I grew up changed, but after his passing in May 2010, I knew my father more than I ever had. After my father received his degree in education, he seemed to be gone more than ever before. I often wondered why he sat at school all night. Could a teacher possibly have that much work to do? I thought it seemed strange, and at times, wondered if it was just an excuse to not come home to his family. There was no doubt in my mind that my father cared and loved us; I just often wondered if he knew how to show it. I had now grown older and my high school was far behind me. My father, who seemed to be at his work far more than his home, let me drop out of high school. I never understood how a man, who said he cared so much about education, let his own daughter drop out of school. My reasoning for dropping out of high school far exceeded just the lazy teen who did not want to go to school. I was not into drugs, I did not drink, and I was not pregnant. I had issues far beyond that and my issues were emotional having lost a close friend pass away tragically. Maybe I misjudged my father, maybe, just maybe he knew exactly what he was doing. Maybe he knew me better then I knew myself back then. Maybe he knew it would work out if he let me get out of the one struggle I had in my life. As I grew older, got married, and had a family of my own, my father remained teaching at the same school. Not much changed either; he still stayed at the school all hours of the night. My mom still got his dinner when he got home, and he still watched television on his recliner as loud as it could be. He never change really with one exception, he was an amazing grandfather. I think my father went to more of my children’s school functions then mine. I think he interacted more with them then he ever did as I was a child and you could see the love in his eyes. It was my Dad’s long eight month battle with esophageal cancer when I learned more about him then I ever knew. As I watched my, now frail Dad sit in his bed, whether he was at the hospital or at home, he was surrounded by little notes given to him by his students and co-workers. It was his fight to get back to school and be with his students that made him gain strength. It was his track team that got him through the last few months and getting to see the trophy his debate team won just a day prior to his passing. With each day, week, and month that passed he had one remaining goal in mind, to see his students, to be with his class, and to be doing what he loved most, teaching. I remember getting mad at my father for wanting to work while he was so frail and sick. I told him he needed to stop, gain his strength and get better, and that his students were just fine without him. He disagreed with me and went back to school every chance he got. It was my father’s last day here on earth when I started to understand the big picture. It was when all his colleagues old and new came pouring in to say good-by to my Dad. It was the school janitors that came to say how much they loved him, and how he helped them by just his kindness. It was when two old students came to see him, and one of them became a teacher and was substituting for my father while he was ill. It was their stories of my Dad, who was this guy I never knew. It was all the kids who gave me hugs, told me stories of my father, and cried when they heard he was gone forever. It was the Mother and daughter who came to his school because she knew I was going to be there; to tell me thanks for having such a great father. That he had helped her daughter through some of the hardest times of her life. It was the story that my Dad would help all the kids that needed help, the kids that struggled, and the kids which no other teacher could reach. It was the story that my Dad secretly bought a boy shoes because his parents could not afford them due to his Dad losing his job. It is the bench that now sits outside the school building where my Dad taught in his memory. Standing on that church pew talking about my Dad at his funeral, I instantly became proud to be his daughter. Looking out and seeing all the young faces of the kids my Dad had touched moved me. My father knew all along he had instilled more in me then I ever knew. He knew I would be fine and make things happen for me. He knew I did not need him at all my school functions or sports events. He knew others needed him more than we did. He knew he needed to help kids that didn’t have a Dad like mine.

If you would have told me...

If you would have told me that last year would be the last Christmas with my Dad, I would not have changed a thing. It was a good Christmas.

Wednesday, September 28, 2011

This I Believe...

I believe motherhood is the hardest job a human being can have. Motherhood is not giving birth; it is when having a child turns your world upside down. Life, as you have come to know it, no longer exists, and your perspective on the world is changed forever. It starts when nothing matters more then this small, innocent, child you have graciously and courageously brought into this chaotic world. Motherhood begins when you have untiring sacrifice, untold influence, unfailing faith, and undying love. Motherhood is the greatest sacrifice. You no longer worry about yourself, the things you want or can't do. These take a back seat because your child’s needs always come first. That trip you wanted to take, the outfit you always wanted, or the sports car you can no longer fit a car-seat in, has now become nothing more then a washed away silly dream. Your time, money, and desires are now filled with changing diapers, carpooling, appointments, practice, homework, cooking, and other motherly duties. Most of all, making sure they have food on the table, a roof over their head, and are as healthy as a child can be. The desires you have now are to see them grow, succeed in life, and be happy. Your actions now, being mother, are more important and have more impact. Your actions shape future generations and have a larger impact on the world. How you are as a mother, a neighbor, a friend, a wife, is placed under a microscope and watched very carefully. Your child idolizes who you are and will want to become just like you. You are a super hero and do great and wonderful things such as make ouch-ies go away, bedtime tuck-ins, throw great birthday parties, rides to the mall, pay for their college, and baby-sit their children. You wear an "S" on your chest, even when at times; you feel it is not there. Your actions have a lasting effect on them that one day, they too, may wear an "S" on their chest, because great mothers, raise great mothers. No matter how bad the world is, no matter how bad your child makes mistakes; you always have faith in them. You know they will stumble, you know they will make mistakes, but they know you will always be there for them. You will pick them up when they stumble, brush them off, and tell them to do it again, because you have faith. When they make mistakes, you will tell them they were wrong, you will help them fix it, and you will make sure they know you still love them, because you have faith. You have more faith in your child then you do in all of humanity. The strongest love, the undying kind, is that of my children. There is no one on Earth I will ever love more, would ever do more for, or would ever give up so much for. I am now more vulnerable, more scared, when I send my children out into the world. I have never had a stronger heartache as when they hurt, because seeing them in pain, is far more painful then anything I have ever felt. I never feel as connected, so together as one, as I do with my children. A mother’s love, long after they are gone, will linger in their heart far deeper then anyone. A mother’s love will live on in them, and in their children, and in theirs. It is a life cycle of undying love that will never end with me, this I believe.