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I have seen many Congenital Heart Defect Awareness videos. Some are really very good--these are the ones that I usually pass along to share. Even though the goal of all awareness videos is the same, some sadly are fairly amateur and difficult to get through.
Of all of the blogs I follow, I'm very impressed with Baby Hearts Press Blog. I have a link to it on the sidebar. She posted a link to The Heart of the Matter, which is putting together a documentary which should be completed by winter 2011. The pilot for this documentary is absolutely amazing! This is the kind of stuff us parents of cardiac kids have been working towards for a long time. We are behind the curve. CHD's are the number one birth defect in the world, killing more children than all childhood cancers put together. Unless you have been personally touched by someone born with a CHD, most people don't even know about children and heart defects.
If you have an extra 17 minutes, please take the time to watch the pilot for this documentary. Help me spread the word, and let's see if we can make an impact by spreading CHD awareness before it's even officially released.
http://www.congenitalheartdocumentary.com/CHD_Website/Videos.html
Monday, June 21, 2010
Saturday, June 19, 2010
The Blessing of Special Needs
Parenthood can be challenging. We all think we are the best parents...until we have our own children. I have a degree in Psychology, I was a teacher, and I thought I could handle most anything thrown my way involving children...afterall, challenging children just need more discipline, right?
Ethan (12) experienced severe reflux as a baby. Despite giving my all, he was diagnosed with failure to thrive and Eosinophilic Esophagitis by six months old. He had surgery for severe gastroesophageal reflux at 7 months of age. He continues to develop new food allergies every few years. He also has Asperger's Syndrome, a Mood Disorder NOS (not otherwise specified), and mild Tourette's. He has battled outbreaks of Petechiae from low platelets, and even bravely fought off a virus that caused him to experience two weeks of liver failure and dangerously low platelets. He has since fully recovered from that virus, but I do watch him closely. Despite all he is an amazing kid who is absolutely brilliant.
AnnaSophia (2) was born with awful heart defects. She had her first open heart surgery at 11 days old, experienced Junctional Ectopic Tachycardia (JET), heart failure and pulmonary hypertension. This led to her heart transplant almost two years ago. After transplant, she rejected and was treated successfully. She also has battled four CMV (cytomeglovirus) infections. These infections require special medication and treatment, but thankfully, she has been free from these infections for a year now. I was told she might suffer stroke, brain damage and learning disabilities. She has not had any of these complications, and she is truly our miracle girl.
My beautiful Emily (9) is sandwiched between Ethan and AnnaSophia. She also was born with severe gastroesophageal reflux and underwent surgery in Denver at 6 weeks of age. She has been on her share of medications to manage her reflux. She also deals with significant allergies. (Small problem in the grand scheme of things, except for the fact that she is allergic to anything with fur, and she adores all animals.) As Emily put it one day, "Mommy, I'm special too, because I'm the only one who is normal." Bless her heart, I couldn't believe my ears. I hugged her and told her that she was indeed special, not because of whether or not she had something wrong with her. She's special because God made her and loves her, and I love her.
I think that some people are afraid of the term "special needs", but I believe that a child who is different, for whatever reason, is a blessing. Ethan sometimes gets lost in his own autistic world, but when I see progress, or he allows me into his world, or he has success in the "neurotypical" world, it's like he just won the Olympics. This past year, I stopped homeschooling Ethan and enrolled him a school with an Autism Program. He excelled greatly, and I couldn't be more proud of him. He even made it on the Battle of the Books team all by himself! He read 40 books and was part of a team answering questions about these books. Think spelling bee style. He was an amazing team member with an incredible memory for details. He did this all by himself--no help from paraprofessionals or special teachers. I couldn't have been more proud.
Every developmental milestone AnnaSophia reaches is a reason to celebrate. Every "heart-iversary" is a reminder of how victorious she is. She is so smart--sometimes too smart, picking up on her older brother and sister's bad habits.
Emily struggles with having two siblings with challenges at times, but she has grown up so much. She struggles with her relationship with Ethan, sometimes getting frustrated. She is very good at entering his world to play with him, but has a hard time understanding why Ethan can't reciprocate. Emily has an amazing heart and capacity for love. She is so good with both her brother and sister, but I am painfully aware of how much she needs one on one time with me too.
Our family is different from others in many ways, but I feel so blessed with the children I have. I get so excited when Ethan picks up on a person's social cues and responds appropriately. Success!!! For many families, that's not even on their radar. I rejoice in the wonder that AnnaSophia experiences from being outside playing with a ladybug. If it were not for her transplant, she wouldn't be doing that right now. Emily and I continue to grow closer and closer. She is an "old"nine year old and continues to mature quickly. She has seen things that most nine year old girls haven't, and I'm sensitive to the love and direction that she needs from me.
Our family is unusual in many ways, but I wouldn't trade it for the world. There are times when life is really, really tough, but we manage and come out stronger. There are also times of pure joy. The reality is that God hands each of us different circumstances. There are no perfect people and no perfect families, but one thing I do know is that "special needs" need not be scary. In fact, if you allow yourself to, you might be more blessed by knowing someone who is "different".
Then I had my own. Three amazing children, all with their own special issues. I have reflected on the statement that "God will not give you more than you can handle" quite often. I really think that He thinks more highly of me than I do. What I realize now is that I can handle it...with His grace.
Ethan (12) experienced severe reflux as a baby. Despite giving my all, he was diagnosed with failure to thrive and Eosinophilic Esophagitis by six months old. He had surgery for severe gastroesophageal reflux at 7 months of age. He continues to develop new food allergies every few years. He also has Asperger's Syndrome, a Mood Disorder NOS (not otherwise specified), and mild Tourette's. He has battled outbreaks of Petechiae from low platelets, and even bravely fought off a virus that caused him to experience two weeks of liver failure and dangerously low platelets. He has since fully recovered from that virus, but I do watch him closely. Despite all he is an amazing kid who is absolutely brilliant.
AnnaSophia (2) was born with awful heart defects. She had her first open heart surgery at 11 days old, experienced Junctional Ectopic Tachycardia (JET), heart failure and pulmonary hypertension. This led to her heart transplant almost two years ago. After transplant, she rejected and was treated successfully. She also has battled four CMV (cytomeglovirus) infections. These infections require special medication and treatment, but thankfully, she has been free from these infections for a year now. I was told she might suffer stroke, brain damage and learning disabilities. She has not had any of these complications, and she is truly our miracle girl.
My beautiful Emily (9) is sandwiched between Ethan and AnnaSophia. She also was born with severe gastroesophageal reflux and underwent surgery in Denver at 6 weeks of age. She has been on her share of medications to manage her reflux. She also deals with significant allergies. (Small problem in the grand scheme of things, except for the fact that she is allergic to anything with fur, and she adores all animals.) As Emily put it one day, "Mommy, I'm special too, because I'm the only one who is normal." Bless her heart, I couldn't believe my ears. I hugged her and told her that she was indeed special, not because of whether or not she had something wrong with her. She's special because God made her and loves her, and I love her.
I think that some people are afraid of the term "special needs", but I believe that a child who is different, for whatever reason, is a blessing. Ethan sometimes gets lost in his own autistic world, but when I see progress, or he allows me into his world, or he has success in the "neurotypical" world, it's like he just won the Olympics. This past year, I stopped homeschooling Ethan and enrolled him a school with an Autism Program. He excelled greatly, and I couldn't be more proud of him. He even made it on the Battle of the Books team all by himself! He read 40 books and was part of a team answering questions about these books. Think spelling bee style. He was an amazing team member with an incredible memory for details. He did this all by himself--no help from paraprofessionals or special teachers. I couldn't have been more proud.
Every developmental milestone AnnaSophia reaches is a reason to celebrate. Every "heart-iversary" is a reminder of how victorious she is. She is so smart--sometimes too smart, picking up on her older brother and sister's bad habits.
Emily struggles with having two siblings with challenges at times, but she has grown up so much. She struggles with her relationship with Ethan, sometimes getting frustrated. She is very good at entering his world to play with him, but has a hard time understanding why Ethan can't reciprocate. Emily has an amazing heart and capacity for love. She is so good with both her brother and sister, but I am painfully aware of how much she needs one on one time with me too.
Our family is different from others in many ways, but I feel so blessed with the children I have. I get so excited when Ethan picks up on a person's social cues and responds appropriately. Success!!! For many families, that's not even on their radar. I rejoice in the wonder that AnnaSophia experiences from being outside playing with a ladybug. If it were not for her transplant, she wouldn't be doing that right now. Emily and I continue to grow closer and closer. She is an "old"nine year old and continues to mature quickly. She has seen things that most nine year old girls haven't, and I'm sensitive to the love and direction that she needs from me.
Our family is unusual in many ways, but I wouldn't trade it for the world. There are times when life is really, really tough, but we manage and come out stronger. There are also times of pure joy. The reality is that God hands each of us different circumstances. There are no perfect people and no perfect families, but one thing I do know is that "special needs" need not be scary. In fact, if you allow yourself to, you might be more blessed by knowing someone who is "different".
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