Inspiration

It's a word that I have reflected on a lot lately. I seek out people who inspire me. There are amazing people in this world who make us want to be better people. These are the people I want to learn from. I have been stunned by people who have approached me to say that my family has been an inspiration to them.  I have had others tell me that I am an inspiration to them.  Really???  Do they know how absolutely inadequate and broken I feel most days?  They find me to be an inspiration???

The online Miriam-Webster dictionary defines inspiration as:

The action or power of moving the intellect or emotions.

I have seen people interviewed on tv that have moved my intellect, making me want to be a better person.  I have felt moved emotionally as I am in awe of other's stories of triumph as they overcome difficult circumstances.  That's when it dawned on me...the people who inpsire me most are not the ones who have lived perfect lives.  I'm not inspired by people who have made all the right choices in life, but have never been faced with hardship.  Hardship and difficult circumstances can define us--either for good or bad.

It's the people who are handed difficult circumstances, who rise above the tragedy and the hardship that are most inspiring to me.  Life is tough.  Life can beat us up.  Life doesn't always turn out the way we would like it to.  What is inspiring is when people live lives of joy and love in spite of the challenges.  Inspiration comes from people who refuse to let the difficult things in life keep them down.  These people take difficult circumstances and use them for good.  They change lives and make differences.

Many times in my Christian walk, I've been told that God doesn't give us more than we can handle.  I've often laughed and said that God surely has a higher opinion of me than I have of myself.  Angela Brock is a divorced mom of four children; her youngest was born with a Congenital Heart Defect.  She started a Mended Little Hearts group in the city where she lives, and works tirelessly to raise awareness about CHD's and support other families who have children with heart disease.  She recently said in an interview on the Today Show,

"You never know how strong you are, until being strong is your only choice."

The reality is that heroes choose to be strong.  There are many people out there faced with difficulty who don't choose to be strong.  There are those who are afraid, or think that the circumstances they face are too challenging,

and they walk away...

Its out of our brokeness that inspiration happens.  Inspiring people face challenges head on with determination and love.

The New Century Bible says it best:

We know that in everything God works for the good of those who love him.  They are the people he called, because that was his plan.  Romans 8:28

We live in a fallen world.  Bad things happen.  Real heroes, inspiring people, choose to rise to the occasion and change lives.  Maybe it's just the life of their child, maybe it's the lives of many.  Be inspired and be inspiring! 

I still don't know how people can see me as inspiring, but if that's so, I hope that the people who are touched by my life will be inspired enough to influence other's in their circle.  Pay it forward, and make your life count.

I have felt led to share a video of a father who is absolutely the most inspiring man I've ever seen.  He is an amazing father!  He demonstrates in a very real, very physical way, the love he has for his son.  The first time I saw this video, I sobbed.  He is a flesh and blood example of our Heavenly Father's love for us.  Enjoy the clip about Team Hoyt.  (Don't forget to mute the music on the playlist at the bottom of the page so that it doesn't interfere with the video.)

Blessings.

Welcome to Holland

I first read this poem in the packet of information that Denver Children's Hospital gave me when AnnaSophia was admitted for her first open heart surgery. Things were so uncertain at that time. The doctors told us that with her constellation of defects (interrupted aortic arch, VSD, ASD, bicuspid aortic valve), she was over 95% likely to have DiGeorge Syndrome, and could have learning diabilities associated with that. She could likely have a stroke from the surgery, have the nerves to her vocal chords damaged from the arch repair, or have major mental retardation due to the lack of blood/oxygen from bypass and surgery.

I know that they have to prepare us for the worst, but this was so much information to be dumped in my lap. I looked down at that beautiful baby in my arms and knew that I would always love her no matter what. It didn't matter what challenges lay ahead for her, she was a gift, and I would always love her as such.

A month later, Ethan was diagnosed with Asperger's Syndrome. What??? I think I've heard of that, but I'm not sure what it is or what this means. Autism??? Really??? Me being the Research Queen, I started reading everything I could on Autism and Asperger's Syndrome. It explained a lot, really. Without having an official diagnosis, I knew that Ethan was different. I knew that he didn't easily fit in with the rest of the world, but that was ok. We adapted. We aimed for success.

As time moved on, AnnaSophia showed absolutely no signs of learning disability. She recovered well, and genetic tests showed that she was one of the rare kids with her constellation of defects who did not have DiGeorge Syndrome. Even though I breathed a sigh of relief, I didn't love her more or less because of it. Ethan got the help he needed, and I strived to understand him better. I was able to make changes in our home that helped with his success.

Today, both of them are doing really well, in spite of challenges and setbacks. They are amazing! The analogy that is painted in the poem Welcome to Holland is so beautiful. I planned on going one place, but life took us somewhere else. It's not bad, just different. Once you embrace the different place where you are, you can enjoy the beauty that is there. It's not bad, just different.

Please enjoy the video, and don't forget to mute the music at the bottom of the page so that it doesn't interfere with the video.

Blessings.

Before My Heart Stops by Paul Cardall

This is an absolutely inspiring video promoting Paul Cardall's new book, Before My Heart Stops. Just this short clip brings me to tears everytime as I remember my own daughter's heart transplant journey. My perspective on life has changed so much since watching my daughter teeter on the brink of death many times. I view life differently, and I cherish every moment with my children like never before. They are my life, my reason for living, and I never want to feel like I have any regrets. I want to know that even in my brokeness as a human being, that I have been the best mother I can be. There is no greater calling than to be a parent--to love our children the way that the Lord loves us. We are their example of what a loving God is here on earth. Each day I fail miserably, but I will continue to press on, love them, lead them and let them know that they can always count on me.

Mason Hibbert, Our Hero

Two years ago, our lives changed in a way that we could have never fathomed. From the moment AnnaSophia was born, she was fighting for her life. She had such prolific defects, I didn't think that there was anyway that a child like her could live. I was amazed at the surgical techniques the doctors in Denver used to repair her heart, but she still struggled. She limped along on the heart she was born with, not realizing she was so sick. She smiled and cooed her way through heart failure that progressed rapidly. Finally, we were told that she would not be able to live much longer with her heart. She had heavy duty drugs pumping through her veins just to keep her alive. Her only chance at life was a heart transplant.

As I write this at 1:45am, I realize that two years ago, AnnaSophia was in surgery having all of her lines placed and being prepared to go on the heart/lung machine. We measured time by status updates from our nurse. We prayed that she would be strong enough not to die on the table before her special heart arrived.

Even though we were dealing with such a frightening, yet hopeful situation, I was keenly aware that there was another family that was dealing with the pain of losing their child. I cried and prayed for my child, but I also cried and prayed for this family that I didn't know. I was in awe that a family could make a decision to donate life during the most difficult time in their lives. Through their pain, they chose to save other's lives.

I am still in awe of the Hibbert family and the gift they gave to not only my AnnaSophia, but to two other people as well. They are the very definition of heroes in my book. Mason was a vibrant, big, 18 month old boy with a smile that could light up a room. His parents told me that he was very giving and loved to share. These qualities held true to the end for Mason who in his passing saved lives and shared his heart with my little girl. Thank you Hibbert family, and I pray that the Lord of peace will continue to shower you with comfort.

Fakes

I feel like I have certainly been on a roller coaster ride for the past two and a half years. Our lives changed dramatically with the birth of AnnaSophia. For my children and I, we never knew that we could love someone like we love AnnaSophia. I have seen Ethan and Emily grow by leaps and bounds--not just physically, but I have seen their hearts grow with love and compassion for their baby sister with the special heart, and all children who we have been blessed to know, who have had their own set of challenges.

At times this roller coaster has not been just about AnnaSophia's medical issues. We have all struggled with our faith at times, wrestling with God. We have seen our friendships tested and truth revealed, sometimes in very painful ways. I tend to be a very trusting person, taking what people say at face value. Maybe I should be more cynical, but I have always tried to see the good in people.

Lately, I have really struggled with truth and lies. I love truth!!! I really, really don't like lies and liars. I'm not talking about little white lies that we tell to prevent injury to others. I'm not talking about responding to the question of how is your day with "Fine" or "Good" when you are really having an awful day. I'm talking about something more pathological. It seems that I have encountered many people within "the church" who have a nasty habit of lying. By "the church", I mean the non-denominational, evangelical community. I have seen people in church, presenting themselves as the perfect christians, who know all the right "catch phrases" and "christian-speak" so as to make people think that they are somehow very enlightened, mature christians. The reality is that all this seems to serve is to paint a picture to the world that they are something that they are not.

I don't presume to know what is in a person's heart, but I do think that I am a pretty good judge of actions. I have seen church leaders pursue relationships that put their marriage vows at risk, I have seen people say one thing and admit that it was a lie later, just for the purspose of appearing like the perfect christian. Honestly, I battle being disillusioned by the things that I have seen and experienced.

The heart of the matter is that we are all sinners. We are not perfect. I just don't like people who pretend to be. Be real!!! Be real to yourself, be real to God and be real to others. Wrestle with God, search for answers, surround yourself with people who will sharpen your faith, but for goodness sakes, make sure that they are what they say. I admire people who are honest about their faith more than people who say all the right things, but are fakes.

The Heart of the Matter

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

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?

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".