I spent two days in Washington, D.C., last week. My friends and I were gathered there to lobby for funding for the Congenital Heart Futures Act, which became law when the President signed the Health Care Reform bill. Whether or not I am a fan of the Health Care bill is of no consequence here. What matters is that what we lobbied for last year is now a law. However, there are currently no funds appropriated for this act.

So, I went to Washington. It was an interesting experience, and I enjoyed the process of meeting with Legislative Directors and Health Care Aides, to discuss how their bosses---my senators and representative---feel about $7.25 million for a Congenital Heart Defect Surveillance System that will help doctors and researchers look at trends, compare cases, and ultimately, wipe out an enemy that affects 1 of every 100 children in this country. I found out that there are actually people in power, people whose paychecks are paid by US, who just really don't care about what matters to their constituents. They are more concerned with who's lining their pockets and paying for their box seats at the ball games. They don't support "disease-specific legislation," even though they once delivered babies, and, if you go by simple statistics, delivered about 40 with a Congenital Heart Defect. They don't want to take the time to visit with people from their own state, but will give a paid lobbyist their undivided attention. I wish I understood this thinking.

On the up-side of this story, we met with some really nice people who promised to talk to their bosses about our concerns, and see what they could do to help us out. I also met some really incredible people who were there to help us. There's Chad, who is 17 and has lived with CHD, and who came to D.C. by himself to help lobby for our cause. There was Dr. Vergosy, who came just to offer his support and his professional input. Then there were Christine and Sarah, who both lost babies last November. They put on a brave face, and showed strength that you could never imagine. I had the privilege of going with Sarah to talk to her representative from West Virginia. This rep was a woman who had just become a grandmother the week before. Sarah's story broke her heart, and gave her a face to remember when the time came to vote on appropriations. I hope she will think about Sarah and her little Jacob.

All in all, it was a productive trip. I am so glad I went! Now, I need a vacation....

The ripple effect

One of the things I do with my life is offer support and help to families of children who have heart defects or heart disease. Often, these children are either facing surgery in the very near future, or they have had surgery within days, sometimes hours, of my visits. It is one of the most fulfilling things I do, aside from being a wife and mother.

I do this because I've been there. I've had the countless hours sitting next to a hospital bed, watching monitors, watching nurses and doctors, and hoping for signs of improvement. I've been there in the middle of the night, when it's quiet in the hospital, and you are hoping that it's all a dream and you will wake up from the worst nightmare of your life. I've slept many an hour on a sofa in a waiting room, or in a recliner or chair in Jonathan's room. I've been in the waiting room in the middle of the night, waiting to hear from a doctor about my child's condition. I've been in the back of an ambulance, and in the back of a life flight airplane, watching as someone worked to keep my child alive. I've even been there when the doctor say they can keep him comfortable, but not alive. But miraculously, he survived!

So, I go to the point of crisis for this parents, to give them HOPE! I was visiting with "heart" friends yesterday. One of them has a one-year-old who just literally breezed through his second surgery. They were talking about how we would never have known each other, if it hadn't been for our support group, which never would have been, if my friend's son hadn't had a heart condition, which prompted her to start the group, which I never would have joined, if MY son hadn't had a heart condition.... You get the picture.

Would I have preferred for Jonathan's old heart to have stayed healthy? YES!!! A thousand times, YES! Would I rather him not have had to endure what he's had to endure the last 13+ years of his life? Absolutely! Was a transplant what I wanted for him? NO! But, would I go back and change a thing, knowing what I know now? NEVER! I wouldn't change the decision we made. I think of all the friends I have made, people I've been able to help, and doors that have been opened to me, because my son had a heart transplant. Our lives are like ripples in a pond. We touch those who are close to us, and they touch others, who touch others, who go and do the same, etc. We don't know how far our "ripples" go, because we can't see them. But, they're there, and every time we reach out to another family in need, we start a new ripple. It's the coolest thing in the world. What was meant to destroy Jonathan, God has turned into something meaningful and beautiful for others to share. It's just the coolest thing!

Eating

Why is it that I eat when I'm stressed? I had a stressful evening, and was in a place where there was food---LOTS of food! So, what did I do? I ATE! And I didn't stop with a few crackers with some cheese, fruit and veggies. NO!! I dove right into the cookies and cupcakes. UGH!



It reminds me of the time I was in the hospital with Jonathan, about this time thirteen years ago. He and I were sitting together on the sofa in his room, when a doctor came in to check on him. Jonathan had lost lots of weight before his transplant, but afterward, because he felt better and because he was taking steroids, he was hungry ALL the time. So, this doctor came in, and there we sat, eating whatever was there. I was feeding my nerves, of course, and Jonathan was feeding his perpetual hunger. That doctor looked me square in the face and said, "You know, you don't have to eat every time Jonathan eats!" I was horrified and embarrassed, and really wanted to cry, but chose to laugh instead. But, I became acutely aware of how much I was eating while we were hospital-bound. I decided that the doctor was right, but I didn't really care at that point in time. Dieting would come later, when we were home, and I had more to do and better food choices. I have since also decided that, if a bag of powdered-sugar donuts was what it took to get me through the stress of a hospital stay, then I would enjoy every bite of them. I have also encouraged more than one mom to not worry so much about her diet while she was at the hospital with her child.



So, tonight, as I sat with friends and my boys, I enjoyed myself--a little too much perhaps---but I won't look back with regret. I can only look forward, learn from my mistakes, and plan better next time.

Days like today

Days like today always remind me of early spring in Houston. It's not too humid, and there's lots of sunshine, and a warm breeze blowing. We took Jonathan out for the first time since before his transplant on a day like today. It was sunny and fairly warm, and we had cabin fever like you would NOT believe. So, Julia, Jonathan's transplant coordinator, came in one morning with a wagon and announced that we were going outside. PANIC!! You mean leave the room? Outside the hospital?! What??? She promised to go with us, so I calmed down. We dressed Jonathan in the only clothes he had there---a sweat suit---and a surgical mask. He looked at us like we had grown horns when we put that mask on his little face, but you could see that he was smiling. His eyes were smiling, so that meant the rest of him was, too. He kept the mask on until we were almost outside, then he'd had enough of that. I tried to keep it on him, but it just didn't work. Oh, well.... He LOVED being outside, though! He was willing to put the mask on his face, just so he could go out. After that, Jonathan wanted to be in the wagon, and going all the time! We had to wait until evening, but we would go cruising around the building when it was quiet, and everyone had gone home for the day. He loved just getting out of the four walls that were our home for so much of the day.

Today, when he's supposed to be doing schoolwork, Jonathan keeps wandering outside. It's almost like he's drawn out there. I wonder if, in the deep recesses of his mind, he has some tiny memory of being cooped up, but longing to escape the four walls that held him. It could be that he just doesn't want to do his work, but I like to think that he's drawn out there for reasons that he can't explain. It just sounds better that way! He's heading back to public school in a few months, and then he'll be stuck inside all day. It's so pretty out there....I think I'll let him go!

The lighter side of being a Heart Parent

One of the things I have learned about being a heart parent for 13+ years is that you have to find humor where you can sometimes. When your child is scared and sick, and you feel helpless and alone, sometimes the littlest things can make you laugh---HARD! So, here are a few that made me laugh then, and still make me smile now!

When Jonathan was about two years old, he had to have a heart catheterization. It was his quarterly heart cath and biopsy, so it was to be an all day affair. Somewhere along the way, he learned that trips to the hospital meant that he was going to have to be separated from Mom and Dad for a while, but that we would see him again soon. The separation was traumatic, and we all dreaded it. We were living in Omaha at the time, and had had the heart cath done by the same guy several times. This time was no different---the separation was traumatic. However, the post-procedure time was almost as traumatic. Jonathan had been given a sedative that he was sensitive to, and he was hallucinating, which was amusing. He would look at me funny, then squeeze his eyes shut, like he was trying to get them to work right. Then, he'd open his eyes just a little, to see if I was still there, then shut them again. At one point, he was swatting the air, like he was waving a fly out of his face. When he woke up one time, he decided it was time to go! He tried to sit up, but just flopped back onto the pillow. Then he looked at me and said, "Maa-maa, Iiii neeeeeed mmyy ssshhhh.....ssshhhh...." Then he went back to sleep for a few seconds. When he woke up again, he said, "Ssshhhh.......ssshhhhooooooes!" Picture a drunken sailor, and you'll be pretty close! Every time he woke up after that, he asked for his "ssshhhh.....ssshhhhhoooooes!" Finally, the nurse got tired of his asking, and let us put his shoes on his feet. He went back to sleep with a smile on his face. Shoes meant he was going home, and that's all he needed to know!

A few years ago, when Jonathan was in the hospital in Houston, he had been moved from the Cardiovascular ICU to the Pediatric ICU, so we went from these private little rooms for sleeping at night to a wide open waiting room with recliners and blankets. My mom had come to stay with us, and decided that David needed to go to the Ronald McDonald House to get a good night's rest, and she and I were going to stay in the waiting room. Jonathan had started waking up more, and was usually awake in the middle of the night. He hated being by himself in his room, but parents couldn't sleep back there. So, Mom and I spent the night in the waiting room, close to Jonathan, when he needed us. This particular evening, I had stayed in Jonathan's room until about 11PM, then I went out to the waiting room. Our "beds" were right inside the door from the PICU area, so I walked in, and there sat my mom, with a smug look on her face. I asked her why she was smiling like that, and she said, "I changed my shirt right here! Took my bra off and everything! Nobody saw a thing, either." She was SO proud of herself for having accomplished this small feat, without having to traipse back to the restroom down the hall. After she told me what she had done, I looked up and, right above her chair, was a security camera! When I pointed it out to her, she and I burst into laughter. Then, we couldn't stop laughing! We'd get calmed down, then one of us would look up at the camera and start laughing again. Then, we'd both start up. This went on for a while. It's one of my favorite memories of that particular hospital stay! I wonder what the security guard who was monitoring the cameras thought, though?! We'll never know.....!

Last year, when Jonathan had to have his annual heart catheterization and biopsy, he told his cardiologist that he didn't want anything to calm his nerves before the procedure. Well, when the time came, he decided he DID want something for his nerves, so the nurse brought him a pill. David had stayed home with Jackson and was coming up as soon as the school bus picked him up. So, Jonathan's Youth Pastor, Keith, was there. Jonathan got in a hospital gown and took the pill, and then he sat in a chair for a few minutes. He was talking with us, and we prayed and were talking some more, and Jonathan looked at me and said, "I think I should lay on the bed now." I moved so we could switch places (I was sitting on the bed), and when he stood up, he smoothed the hospital gown in the front, looked at Keith and said, "Do you like my dress?! Isn't it pretty?!" Keith and I just looked at each other and smiled. When Jonathan was laying down in the bed, it was like he was in a completely different world. He started looking at everything around him, including his hospital bracelet. His doctor's name was on the bracelet, including a portion of his middle name---Tay. When Jonathan read that, he said, "Kimberling, Matthew Tay. Matthew Tay?! Who's that?!" Then, he decided it was funny! "Where's Tay-Tay?! Matthew Tay-Tay!!" It was one of those things that you just had to be there to see (as an aside, he has NO memory of doing this!). When he left for the Cath Lab with Gary, he was chirping about "G. Vance, R.N.," which made me laugh. It's so much easier to let your children go, if they aren't crying and teary at the separation point. Youth pastor's are a different matter. Keith was more un-done than I was. Proof to me that his heart is so toward our children. The year before, Jonathan had thrown up at Keith's feet, narrowly missing his shoes! Keith was brave enough to come back for a second helping last year.....and he genuinely wanted to be there for Jonathan.

So, while these memories may not be very funny to you, they still make me smile. Any port in a storm, right?! By the way, whatever sedative they gave Jonathan in the Cath Lab last year must have been GOOD stuff. The next day, Jonathan drew cartoon superheroes of "Dr. K" and "G. Vance, R.N." You'd have to see them to appreciate them, but let me tell you, he had a heightened sense of humor that day, too! I'm hoping for a cartoon drawing of "Mighty Mom" this year....

The Strength of Parents

I went to a funeral service on Wednesday for a little girl who lived to the ripe age of 75 days. She left two amazingly loving parents, and two older sisters, all of whom grieve for her. I cannot imagine the unspeakable grief they must feel. At the service, her father carried her casket from the chapel to the gravesite, which was a short walk away, and then had a hard time letting it go when the time came. It was so incredibly moving and heartbreaking. Her sisters cried and the whole family just held on to each other.

It is not the first funeral for a baby that I have been to over the last few years. I have been to several. Too many, to tell you the truth. It's a sad reality for those of us who spend any amount of time with families of children born with heart defects. I don't know how the doctors and nurses who care for these children do it day in and day out. I have been told that I get too emotionally attached to these families and children, but how do I not get attached to them? We are on this road together, my comrades and me. We are warriors, doing battle against an enemy that would kill our children. If you can't get attached and learn to trust each other, then you feel like you're fighting alone. And that will never do.

Let me tell you what I have observed, though. There is this quiet strength in the parents who have lost children. I have seen them comfort the mourning, laugh when they wanted to cry, and celebrate the time they were blessed to have with their children. It is the ultimate demonstration of grace under pressure. Everyone is looking at them, expecting them to fall apart at any second, but they are the ones holding everything together. Are there tears? Oh, yes! But, there is also that strength. They know that their baby is through with suffering and pain, and there is the hope that they will be together again, when we get to our permanent home. They know that their children passed through this world, on their way to a better one, and made our lives better on their stop-over. These parents understand that there are worse things than death, and Heaven looks even sweeter than it ever did before. Even the parents who do fall apart show a strength that would impress the greatest of superheroes. Our children are supposed to outlive us, not the other way around. Any parent who can endure that kind of pain, and still keep going, is tougher than steel.

I know that I am not there in the private moments, when they are missing their children so much they can hardly breathe; when their arms ache with the emptiness; when they hear a baby cry, and their heart skips a beat, for just a moment. I am only there for the public moments, when they are relatively composed and hold it all together for those of us who need for them to put on a brave face. I have not been there at the end of the day, when they lay down in a quiet house, and their minds wander to what might have been, but will never be. I am certain that their grief must be so deep, they wonder if the sun will ever shine again.

The amazing thing about these incredible people is that the sun DOES shine again. They still miss their child immensely, but they are able to keep moving forward. They hurt and there is still a sad emptiness in their lives, but still they keep going. They go on to comfort those who will mourn their own children, to encourage families to never take a single day for granted, and to be brave enough to parent again. This group of parents has humbled me in ways you can never imagine. They have taught me to trust God, no matter what. They have taught me about the bittersweetness of parenthood, and how to look at each day with my children as a marvelous gift.

So, today I think about all the babies who lost their earthly battle, but won in Heavenly places. I think about Taylor, who went to Heaven, but gave Jonathan her beautiful heart; Baby M, whose sisters and parents mourn for her today; Sweet D, who loved my jelly beans, but who loved his Mom even more; Precious E, whose big sister loved her unreasonably; Baby Girl I, who was waiting for a new heart that didn't come in time; Beautiful J, who fought so hard, but just got too tired to fight any more; Little J, who was Daddy's little pride and joy, and whose short life impacted so many; Adorable K, who was Mama's girl; Big Boy B, who tried so hard, but just was too sick; and I think about Wonderful I, who is laughing and dancing in Heaven with his big brother, who went before him.

Love your children. If you can't put your arms around them because they are away from you, but still on this earth, call them and tell them you love them. They need to hear that from you. If your child left this earth before you were ready, know that I am thinking of you today----as I often do. Hold your children close in your heart, and know that, if you love God, and believe in His Son, Jesus, there is a time that you and your precious one will be reunited. And know that you have left an indelible impression on me. I will never forget....

Time flies....

What?! Two weeks (or more!) since my last post?! Where does the time go? Seriously, where does it go? I have a hard time wrapping my brain around the fact that it's been thirteen years since Jonathan had his transplant. Thirteen years ago today, in fact, we were at home. I will never forget that. It had only been three weeks since his transplant, and he was still extremely weak. After being flat on his back for over a month, and on a ventilator for almost that long, he just didn't have a lot of strength. But, he was getting stronger every day. Once I even commented in a letter to him that he was literally changing by the hour. I could see the physical changes taking place in him. It was weird and wonderful, all at the same time!

So, we were discharged to go home---which was my in-laws' home. I wasn't at all sure Jonathan was ready to leave, but they kicked us out, anyway, saying that I was just nervous and that we'd do fine on our own. At that time in his life, Jonathan was taking medicine literally around the clock. He was addicted to morphine, so we were giving him decreasing doses of that, to wean him off. Then there were the steroids, blood pressure medicines, anti-rejections medicines, etc. He took meds 12 times a day! It was crazy! I was up until midnight, then had to get up at 3AM to give different meds, back up at 4AM for another cocktail, then got to sleep all the way to 7AM! UGH! Not only did I not think Jonathan was ready to go home, I was having a hard time coping with the perpetual lack of sleep. Our stay at home didn't last long, though. Jonathan developed a fever, and we went back for observation. Then he had a biopsy, which showed some minor rejection problems. Nothing horrible, but it required another week in the hospital, with another biopsy before we could leave. By the time we were able to leave the second time, I knew Jonathan was ready to go home. He looked around at the world with new wonder in his eyes! And he SMILED when he saw the green trees and beautiful flowers. His smile has always been like coming home for me. When Jonathan smiles, you feel his glee to your very soul. His clear, blue eyes sparkle and shine, and you just know that everything is right in his world. Of course, he's a typical teenager, and would rather not show his emotions, but he just can't help himself sometimes!

I find myself wishing I could go back and cherish those times more. Those times when I was awake in the middle of the night, because Jonathan needed medicine, or because he had his days and nights backwards from being in ICU for so long. At that time, all I could think was, "Can't we give this kid something to make him go back to sleep, so I can get some rest?!" Now, I grieve for the time I lost, wishing for this or that. Same thing with Jackson. I remember being awake with him in the middle of the night, thinking I could just let him cry, and he'd learn to comfort himself, then I could actually sleep. And I was proud of him for figuring it out, but now I wish I had just taken the time to enjoy cuddling my babies while they were little. It all happens so fast...

Where does the time go?

The Diva in Me...

I went to Arkansas today, to pick up four of my six nieces. It's their Spring Break, and they wanted to come to Aunt Lex's house. SO, my sister and I met half-way between our houses, and traded kids for space. They are the sweetest four girls you could ever hope to meet. Very well-mannered, and so eager to please. I love having them around. For some reason, I am the "Diva" of the family. I'm the girly-girl that my sister is not. She doesn't have time to be--she has five girls! They love to hang out with Aunt Lex, because they know we'll do girly-girl stuff like shop and get our nails painted, and try new hairstyles. I'm into looking stylish. Although my wardrobe is rather outdated right now, I love to look my best. I like high heels and jewelry, and I love my long, layered hair (although I think it's a bit too long at the moment!). My sister is into function and efficiency. She's a full six feet tall, and high heels would make her taller than her husband, and she couldn't chase young children as well in them. Jewelry is an afterthought, and she just doesn't have much of it. Her short haircut is smart---perfect for her slender face, but also for her busy lifestyle. She is beautiful, and I love her dearly, this "baby sister" of mine. She has learned to do without, so her kids can have, and good enough is usually good enough. I admire her for her mother's heart. She's giving and caring in so many ways. My life is so much richer because of my precious sister.

OK---back to the Diva in me! For a long time, I was a little put off by this title. Lex, the Diva, who was too busy trying to look good to help with the dishes, or who was too busy socializing to actually get her hands dirty. My sister would say this with a smile on her face. I knew she was kidding, but in a way she was serious, and maybe even a little admiring of my ability to get out of doing just about anything I didn't want to do with a little Southern charm, and a lot of "paint and glue"! My husband even gets in on this Diva thing---when we have somewhere to go, and I need to look my best, he starts singing a song from the movie, "Oliver." The first lines are: "Girl, we've got work to do. Pass me the paint and glue....When one knows the world is watching, one does what one must. Some minor adjustments, darling; not for my vanity, but for humanity!" And that's not really the whole truth. It IS for my vanity! But don't tell anyone....

So, maybe there is a Diva in me, and I let her out on occasion. Is that an altogether bad thing? As long as I don't ACT like a Diva, and expect everyone to cater to my every whim, I think I'm OK.

Are you getting up? Oh, good! I need a soda....!

Finding the Humor

This weekend was a chance for me to really reflect on my boys and our lives. If I could, I would create a world where they would never have to suffer pain, or endure hardship. But, we live in this world, and we know that we have to take the bad along with the good. And some of the bad is actually kind of funny---NOW! Believe me, at the time it was happening, I wasn't laughing!

There was a time that Poison Control actually knew me by name, and they knew my children's names. Well....actually only one child's name---Jackson! Jackson has always been very independent, and extremely inquisitive. He's the child who asks 500 questions a day (still does this!), and wouldn't stop there, except that we get tired of answering them! He's curious. So, there was a time in his life when he thought that everything needed to be tested, worn, or tasted! There was the time that he painted his face, lips and fingernails with White Out. Of course, on the label in bold letters it says, TOXIC! KEEP OUT OF REACH OF CHILDREN! Hello, Poison Control?? Then, there was the time he was playing in my bathroom while I showered. How much damage could the kid do while I was right there?! I step out of the shower, and he turns around, holding the nail polish remover, with the lid in his mouth! Hello, Poison Control?? My favorite was the time I was the cause. Jonathan was taking liquid meds at the time, because he hadn't learned to swallow a pill yet. So, the time came for him to take his meds, and I drew them up, walked over and just popped them into a kid's mouth. A few minutes later, I walked past Jonathan, and said, "Oh, Jonathan! I need to give you your meds. Wait! I already did that---I drew them up, and...gave....them.....to...." About that time Jackson walks over and says, "Mmmm--mmm!! Mommy, Jon-Jon's 'menos' tastes GOOD!" Oh, shoot!! First call---the cardiologist. He laughed, then he told me to call---you guessed it---Poison Control! Hello?? On the other end of the phone: "Oh! Hi, Mrs. Fussell! What's Jackson gotten into today?" GREAT!! They know me by name now! I'm sure I'm on some "watch list" at this point! I didn't bother to call them when he ate Chap-Stick. I figured it would just help his constipation. Turns out, I was right! Dog food concerned me a little, but the dog didn't seem to mind, so I let it go. Thankfully, none of the things Jackson did, ate, or had given to him harmed him in any way.

I'm learning to see the humor in these little things....in the grander scheme of things, most of it's all small stuff anyway, right?!

Letting go....

I heard once that motherhood was the greatest heartache a woman would ever experience. I also heard that mother's enter into this endeavour knowing that we will have our hearts broken, but we do it anyway. I must say that I believe both of those. We love our children so much it hurts, and we know that there will be disappointment and heartbreak along the way. One of the things that nobody mentions is the guilt moms feel. I wish we could learn to let go of the guilt. I feel guilty for every struggle in my children's lives, no matter what it is. If you feel that way, you are NOT alone! But I want us to make the effort to let go of the guilt! I don't know why things happen in this life. I don't NEED to know why---I just need to know that God is in control. And whether our children's hurts are a skinned knee, a breathing problem, a heart problem, a bad grade on a test, or their first broken heart, we can't spend our time feeling guilty about it. That's not living! Maybe Forrest's mama was right---life really is like a box of chocolate; you never know what you're going to get. I don't know about you, but I'll take the bad along with the good. If you think of it like chocolate, you know that some you'll like, some you won't, but it's not worth throwing away the entire box, just because you bit into the orange creme, and you were hoping for chocolate truffle! You take the bad along with the good, because you know that, at some point, the good is going to come around again, and you're going to savor every minute of it. Soak it up, and let it sink in. Then, when life hands you the bitter, you can handle it. And you pray....if you pray over your children every day, then you can trust God to do His part and take care of them. Does that mean that hardship won't come? NO! It just means that, no matter what, you trust God to see your children---and you---through the rough times.

March 19th

If you have known me for more than five minutes, then you probably know about my son, Jonathan. I have two beautiful children---Jackson, who's 9, and Jonathan, who's 13. Both of them were born, to the best of our knowledge, healthy and normal. There was nothing out of the ordinary about pregnancy or birth with either one of them. However, in October of 1996, at the age of 4 1/2 months, Jonathan got sick. We lived in North Louisiana then. I had no idea how sick he was, or how sick he would become at that time. Aren't you glad God doesn't show you these things? I think that, if I had known what we were going to face, I probably would have just curled up in a corner somewhere, and stayed there until they came to take me away. Ignorance was bliss.

When I took him to the doctor, thinking that he had a virus, and might be a little dehydrated, she took one look at him and called an ambulance. When she came in to tell me that he needed to go to the hospital, my first response was, "No! He's not going!" When she told me that she thought he had internal bleeding, I felt like I had been kicked in the stomach. My husband is a pilot, and he was out of town on a trip that day. I had no idea where he even was at that moment. All I could do was get into survival mode, and do what needed to be done.

In the ambulance, the doctor kept asking me if I had dropped him, if he rolled off a bed, if I or my husband would ever hit him, or if a caregiver might have done something to him. The only thing I could think of was a bumpy airplane ride we had taken the day before, but she assured me that wouldn't have been the problem. We rode to the hospital, with the doctor giving him oxygen, and me wishing I could have some, too.

At the hospital, Jonathan was whisked away while I went to admitting for paperwork. When I left there, I had no idea where to go. I had never spent much time in a hospital, and didn't know there were different ICU's for newborns, children and adults. I found the adult ICU, sat down in the only chair available in the room, and started to cry. Not two seconds later, I heard the sweetest sound ever---my name. Someone there knew me! I looked up, and there, across the room, sat the mom of one of my dear friends. I quickly told her my story, and she told me I was in the wrong place. She loaned me money to call my sister, who was 30 minutes away, and my mom, who was two hours away. Then, she walked me to the Pediatric ICU, and she stayed with me, until my pastor arrived.

When the doctor came out with an X-ray in his hand, I was stunned. He told me that Jonathan did NOT have internal bleeding, but that he was in Congestive Heart Failure. What?! That's an old person's disease, right? My grandfather had that---not my 4 month old baby! But, it was definitely Congestive Heart Failure. Then, the doctor told me that he couldn't treat Jonathan there, and he would have to go to a hospital five hours away in New Orleans. So, a few hours later, I found myself sitting at the back of a small plane, with Jonathan being kept alive by a nurse and respiratory therapist pumping an Ambu Bag for him, on our way to a hospital in New Orleans. It was there that doctors first mentioned Jonathan and a heart transplant in the same sentence. I denied it would be necessary, thinking that, if I just believed HARD enough, God surely would just heal Jonathan with a supernatural *ZAP*! That didn't happen.

Fast forward to March 1997. I had watched Jonathan get sicker and sicker, refusing to believe that he would need any surgery. When he ended up in the hospital again, doctors told us that his only option was to be listed for transplant. By this time, we had changed doctors, and were now being seen at Texas Children's Hospital in Houston. Once Jonathan went back into the hospital, he didn't leave again until he got his new heart. At first, doctors thought he might be well enough to go home, but he took a bad turn. He was listed for transplant on March 14th---my mom-in-law's birthday. On March 18th, we were told that he needed to be on heart/lung bypass, because he wouldn't make it through the day without it. Doctors told us they had done everything they could, Jonathan was maxed out on all the medicines he could get, and ECMO had to be used. But we refused it. Then, they told us they could keep him comfortable, but that we should plan on it being just my husband and me again.

You remember that I didn't want Jonathan to have a transplant, right? Well, that was STILL what I was saying---that he wouldn't have to have a transplant, and that he would just be supernaturally healed! Thanks to my mom, I came to a very sobering realization that March 18th. What if God's way of healing Jonathan was WITH a transplant, using the medical knowledge and skills of doctors?! It was a real light-bulb moment for me. I quickly changed my "song and dance", and told God that it didn't matter to me HOW He healed my son---as long as He kept His promise that he WOULD heal him. Less than 45 minutes later, we got a phone call about an available heart. We accepted the gift we were being given with joy and trepidation. It was so hard, knowing that Jonathan's heart had to come from another child. Little did we know then, but that heart, from that precious little 22-month-old baby girl, would bring us so much joy. AND our experience with Jonathan would bind us together with some amazing people. Because of one act of kindness toward strangers, our donor family has blessed not only our family, but countless others that we have been able to bless over the last 13 years. Jonathan had his transplant on March 19th. That day will forever be a bittersweet day of celebration. We celebrate the life of our child, Jonathan, who is healthy and happy; and we celebrate Taylor Marie, whose life was cut short, but who gave us the most incredible gift. It's sadness mixed with joy.

Thank you Matt and Denise, for sharing Taylor's heart with us. I can assure you, we have taken good care of it, and will continue to do so! Thank you, too, for allowing us to share Jonathan's life with you. I want you to always see that something good did come out of a terrible tragedy. Jonathan is the most wonderful big brother, son, and grandson you can possibly imagine. He is a young man of great strength and character. He will lead his generation in something great.