Starting Over

It's been two years since I posted to this blog. I can't believe I'm starting it up again! I don't know if it is the right thing for me to do. But, here I am. So, do I try to catch you up on my life? Do I fill in a few gaps? Or do I just LAUNCH? I say, launch! I am a tough chick....and not just because my nail polish says so (I promise...that's the name of it!). I am tough because God says so. And I am having my mettle tested these days. Yep....tough! But, I can't think of anyone tougher than Jonathan. Two weeks ago, he went into sudden cardiac arrest at school. Sitting in Biology, minding his own business. I am more than grateful for the quick-thinking students who got him the help he needed, and stayed with him. Several teachers sprang into action, putting their CPR skills to work, and someone located---and used---one of the 26 AED's that Bixby Public Schools owns. I have been told by more than one person that a cardiac arrest save like this just doesn't happen very often. I don't know all of the events that occurred that morning, but I do know that my 15-year-old son's heart stopped. For 10 minutes. On the floor. At school. An AED, used by school personnel, made the difference in this case. I marvel at this thought. What if he had been at home? What if we had been anywhere else? Would there have been this simple life-saving device? So now, I find myself an advocate. Every building in the nation should have at least one AED. And, CPR training should be a part of life. How many people would be saved each year, if we all knew this life-saving technique? We may never have the opportunity to use it---indeed most of us won't. But, if that time ever comes, knowing that you are able to give a mom back her son is an incredible reward. And, AED's are an added expense to a business, but in this case, those shocks, delivered to Jonathan in the critical first few minutes of his arrest made all the difference. So worth the cost---just ask Jonathan's friends, who are at home in Bixby tonight, holding a rally/prayer vigil for him. Jonathan and I are looking at the pictures being posted to Facebook. We are in Little Rock, Arkansas, waiting for another heart transplant. Any day now....

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....