Over the past few months we have ordered some books about grieving and other topics that feel relevant. One of them is called “Comfort” by Ann Hood (Amazon). It’s a short book, just a few hours to read from beginning to end. She lost her 5-yr-old daughter Grace after an unexpected and sudden attack of serious strep throat. Dawn had read it earlier, but I just got around to reading it tonight. It’s a raw, emotional, unapologetic account of the emotions that the author goes through after losing her daughter, and much of it rang especially true to me. Not that every situation was the same or that I felt exactly the same emotions, but the way she writes just seems very real and honest to me. It’s not a simple account of the time line of her daughter’s life and death and aftermath, but a glimpse into the confusing and crippling thoughts that she dealt with - that we can relate to. The prologue especially is written so well that I thought I would share it here. In many ways it captures the unfiltered and true thoughts of someone trying to come to grips with the worst possible loss, and how confusing these thoughts can be. I read it not just as the words that people say to a grieving parent, but also things we say to ourselves.
Comfort: A Journey Through Grief
PROLOGUE
TIME HEALS.
She is in a better place.
She is still with you.
You should walk every day; you should write this down; you should go to church, to therapy, to the cemetery; these things will help you.
There is a heaven and you will see her again there.
You are not dreaming about her because you are closed to possibility.
Time heals. Once you have lived through all the firsts, it will get better. The first summer at the beach without her elaborate sandcastles; the first day of school, when she would have put on her purple leopard backpack with her collection of key chains - a starfish, miniature Lincoln Logs, the butterfly from Japan - and walked into first grade; her sixth birthday and her customary costume/painting/tea party birthday party; the first Halloween with her dressing as something with wings; an angel, a fairy, a ladybug; the first Thanksgiving when her face does not appear among the thirty others eating twenty-three pound of turkeys in our dining room; the first Christmas that I do not have to hide art supplies in the closet in my study, the bags bulging with glitter markers and crayons and sketch pads and modeling clay and watercolors and fat paintbrushes and gel pens and rolls and rolls of stickers of smiley faces and daisies and puppies and stars; the first Valentine’s day that she does not cut out construction-paper hearts and string them together for me; the first Easter with an Easter egg hunt or a pink basket filled with Smarties and Sweet Tarts and Peeps, the purple ones; the first anniversary of losing her, when the peonies are blooming in our garden and the air is filled with promise. After you have survived all of those things it will get easier to live without her.
Are you writing down how you feel? But I cannot write. I cannot think of anything except her, the way she looked splashing in the bathtub, the way she wiggled her toes against mine, the feel of her sticky hand holding on to my hand good and tight. Write that down! It will help!
The images of those hours in the hospital, of the doctor’s face telling you Grace was not going to make it, the rushing of the nurses’ feet with vials of her blood, the voice on the intercom announcing that Grace was in cardiac arrest, the way they made you wait outside the room, your face pressed against glass, the sounds of your screams, all of this will fade.
She is still with you. She is a rainbow in the sky. She is the butterfly in your garden. She is the cardinal in the mimosa tree. But I have called out her name to each of these things and they simply fade away. That is because you don’t believe.
You cannot stay in bed everyday and watch Sex and the City on DVD. You need to get outside. You need to walk.
You will sleep again, an entire night through. It is when I sleep that I am back in that hospital. My own screams wake me.
Take Benedryl, Ambien, Xanax, Zoloft, Prozac, Dr. Bach’s Rescue Remedy, smoke pot, drink white wine, warm milk, single malt scotch.
Go to grief groups and listen to other parents tell how they lost their children. Then you will know that you are not alone. But when I listen to how children are dying, on go carts and in fires and with guns and falling out of windows and from mistakes in the hospitals, I only feel more despair. Then you do not want to help yourself. These people can help you but you won’t let them.
God loves you. If there is a God, why would He have to take my Gracie Belle from me? Why would He do this? God only give us what we can bear. But I cannot bear this. Yes you can. You are not trying hard enough.
She is in a better place. How can a five-year-old little girl be in a better place without her mother? Heaven is better than here. But she is all alone. I am all alone.
Are you writing anything down?
Here is a book by a rabbi who lost his son; by two women who both lost children and they have written their stories; by C.S. Lewis, who lost his wife and was Catholic and wise; by a psychiatrist, a sociologist, a teacher; by someone who has interviewed parents who lost children. But none of them lost Grace. They do not know what it is to lose Grace.
You need to get out of bed; off that sofa; out of the house. This world is full of five-year-old girls. They are everywhere I go. The supermarket is full of cucumbers and blueberries and pasta. Target is full of pink dresses and purple shoes and things that sparkle and glitter and shine; the drugstore only seems to sell nail polish and hair ornaments. Out in the world there are only five-year-old girls holding their mothers’ hands wherever I go.
You should walk everyday.
Aren’t you feeling better? You got through a year of the firsts! I did not go to the beach this summer. I did not park in my usual place at the school so I could avoid watching the first graders filing outside through the playground at the end of the day. On her birthday I sat outside beside her toy log cabin and ate cucumbers and pasta and drank too much rose and tried not to think about the feel of her in my arms the night she was born on how her skin was the color of apricots, while my husband talked to her best friend Adrian Roop and his mother in the dining room. I did not know what to do with her Christmas stocking, the one with the angel on it and her name sewn in my crooked attempt to use a needle and thread. I did not know how to celebrate a New Year without her. And on the first anniversary of her death, I ran away with my husband to Cape Cod and climbed the dunes there and felt the spring sunshine on my face as if these things could make me feel better.
You look better!
You sound like yourself again.
Grace is sending you white feathers, heart-shaped stones, pennies from heaven.
Have you been writing this down?
I can’t believe that after one year you are still not going out more. You should be walking, taking Pilates, joining a gym. My body cannot move. I am paralyzed.
Here is a book about the Holocaust survivors.
Did you know that Winston Churchill, Abraham Lincoln, Mark Twain all lost children? And look at what they accomplished! Then I am not as strong as they were. Grief is bigger than I am.
Time heals.
Grace would not like to see you this way. How do you know what Grace was like? I believe she would want me to miss her with every cell in my body. And that is how much I ache for her. My arms hurt from not holding her on my lap. My nose aches from not smelling her little-girl sweat and powder and lavender-lotion smell. My eyes sting from not seeing her twirl in ballet class. My ears strain every morning for her calling “Mama!” when she wakes up. My lips reach for her sticky kisses. At night I search for her.
You need to give her clothes to unfortunate children. Even her sparkly red shoes? Her pink skirt? Her lei made of paper flowers? Her leopard rain boots? Her two-pointed brightly striped pom-pom hat? It is not healthy to keep a shrine. But there are shrines to lesser things. To Jim Morrison. To pets. To saints who are no longer even considered saints. But you need to move on.
Are you writing any of this down? Only the lies people tell me. There are no words for the size of this grief. There are only lies.
You will see. Time heals.
In time you will sleep again and dream of beautiful things.
In time you will not miss her.
You will see.
Time heals.
I also found the beginning of Chapter Three to be something I could relate to:
GRIEF IS NOT LINEAR. People kept telling me that once this happened or that passed everything would be better. Some people gave me one year to grieve. They saw grief as a straight line, with a beginning, middle, and end. But it is not linear. It is disjointed. One day you are acting almost like a normal person. You maybe even manage to take a shower. Your clothes match. You think the autumn leaves look pretty, or enjoy the sound of snow crunching under your feet.
Then a song, a glimpse of something, or maybe even nothing sends you back into the hole of grief. It is not one step forward, two steps back. It is a jumble. It is hours that are all right and weeks that aren’t. Or it is good days and bad days. Or it is the weight of sadness making you look different to others and nothing helps. Not haircuts or manicures or the Atkins Diet.
Writing about Grace, losing her, loving her, anything at all, is not linear either. Readers want a writer to be able to connect the dots. But these dots don’t connect. One day I think about how knitting saved my life, and I write about that. But how do I connect it to other parts of my grief? Grief doesn’t have a plot. It isn’t smooth. There is no beginning and middle and end.
I’ve never been much of a writer, but these days I find it therapeutic. I find comfort in writing down my thoughts, whether they are read by others or saved only for myself. This book, in it’s disjointed and raw form, encouraged me to continue writing down my thoughts and feelings, even if they are in private form rather than a public blog. And to continue sharing with family and friends. Sometimes it helps to tell a story for the 10th, 20th, 50th time. There are moments and memories that feel just as raw as the day they happened. The excruciating early-morning hours in the hospital on the day Kevin died. The long, stormy, silent drive to Iowa City. The final moments we had with him in the same PICU room where he struggled to survive after being born. Having to tell an unsuspecting Emily that her brother died. Coming home. Making funeral arrangements at a time when we could barely think. The empty days that followed.
I’ve shared some of the events and my thoughts with some people, and some close to us lived them with us. But I feel like I need to write these stories down, if not for anyone else then for myself. I hope that by continuing to write and share we will also find Comfort.
(Matt) In the time since I wrote my eulogy for Kevin’s funeral, I’ve had many thoughts of things I should have said and stories I could have told. Although many people knew him well and no amount of words could really capture who he was, I still have this desire to make sure everyone knows how great he was. Maybe it’s the dad in me, still wanting to show off his little boy and still so proud to have been allowed to be his daddy. In the next few days I will post some of the thoughts and favorite memories I’ve had over the last few weeks.
But first, I want to tell the world about Kevin’s mom - just in case someone doesn’t know how lucky he was. There are poems and sayings about how kids with special challenges are reserved for those mothers who can handle it - who have the strength and love to be able to raise them and give them every chance they can. I have to wonder if there is some truth to that. In order to truly understand Kevin’s life and appreciate how he even got to day one, you need to know how hard his mom fought to get him here. This is going to be a long story…
At 16 weeks, on an otherwise normal Monday, Dawn called me from her doctor’s visit as I was getting Emily ready for gymnastics practice. She was crying. She said she couldn’t drive home, and I needed to come pick her up as soon as possible. I drove there and found her in the parking lot crying in the car. The doctor had picked up the baby’s heartbeat but it was very low - low enough that she knew it wasn’t good. After us trying for quite some time to get pregnant and having an otherwise normal pregnancy up to this point, she was heartbroken. They told her to go home, and for us to go to Iowa City at 20 weeks for a level 2 ultrasound. There was nothing else they could do. This was the first time we thought we had lost our baby, which we had just found out was a boy.
Less than 2 worry-filled weeks later, Dawn felt that she needed to go in to her doctor again. She was worried and needed to get the baby checked again, and it had to be today. This was the first time that I learned to just give in and trust her instincts, because she is (almost!) always right. Call it luck or fate or whatever you wish, but that day in the doctor’s office a wonderful woman named Dr. Vickie Pyevich (pediatric cardiologist) was training the ultrasound techs about recognizing fetal heart problems from an ultrasound. We got in shortly before she was to leave, and she agreed to take a look at Dawn before she left. She was the first to recognize and diagnose Kevin as having L-TGA (the lower ventricles of the heart were switched around) and complete heart block. This was why the heart monitor was picking up a low heart rate - the bottom chambers of the heart were not beating in sync with the top. Since we knew nothing about the anatomy of the heart at the time, this was hard to understand and very overwhelming, but she reassured us that this was not necessarily a fatal diagnosis, and there was a chance that he be born and have a life. There was hope.
Dawn came home from this visit as determined as ever. She read everything she could about congenital heart disease and tried to understand everything that may be facing our boy during the pregnancy and his life, if he were to make it. If there was anything she could do, she would do it. If there was any information she could absorb to try to make the best decisions for him, she would learn it. If there were any questions that needed to be asked, she would ask them. She would give this little boy every fighting chance she could give him.
We went to Iowa City at 20 weeks more informed than before, a little hopeful, but still knowing that things could turn out very badly. During the ultrasound, we could tell that the tech and doctor were proceeding with caution and choosing their words wisely. When they came in and sat down with us in a way that said “bad news”, it was another low point. Our baby boy had a serious heart problem, and they didn’t think he had a good chance of surviving. They said that under these circumstances many people consider termination and we had some long discussions with doctors and nurses about what his condition really was and what kind of future he was facing. We took home some books about losing your baby and how to deal with it. It was the second time that we thought we had lost our little boy.
After talking again with Dr. Pyevich, Dawn was reassured that there was some hope and all was not lost. If she wanted to fight on, there were things that could be done. We set up another appointment in Iowa City to understand even more about what Kevin had and what could maybe be done.
Five days later we were in Iowa City again for another ultrasound and to talk to more doctors. We were told that Kevin would certainly need a pacemaker at birth, and there were special ones small enough for newborns. But his heart rate was still low, and he may not make it long enough in the womb at that rate, so they decided to recommend an unconventional medicine that would raise the baby’s heart rate. Unfortunately, it also raised Dawn’s heart rate. And it had to be taken every four hours, around the clock, 24 hours a day, for the rest of the pregnancy. Dawn didn’t hesitate. She would do it. If she could just get him to 30 weeks and 3 pounds, he would be big enough to have the pacemaker operation. There was a chance, and she would do anything in her power to give it to him.
Thus began Dawn’s long journey with a kitchen timer. We set it to go off every 4 hours, and I’ve never seen anyone so dedicated to a schedule for such a long period. She took the timer with her, had it throughout the day, and had it on her night stand every night. She took every pill - six a day, every day, for more than 16 weeks. Over 600 pills. And not only did it raise the baby’s heart rate, but it raised hers as well. She became tired much more easily, she needed to rest more often, and her body was trying to adjust to feeling like it was always pumping on adrenaline. It was hard for her to sleep and hard for her to relax. But she never complained and never thought twice, because this may be the only chance our little boy had.
Five days after that visit to Iowa City, we were fortunate enough to be introduced to a doctor in Madison, Wisconsin who was an expert in fetal heart rhythym problems and was doing a study to help diagnose and understand them. She may be able to help us determine how our boy was doing on the medicine, if he was getting into trouble, and when we would need to deliver him to give him his best shot at life. We made four separate 4-hour trips to Madison, where Dawn was placed in a contraption that is hard to describe. It was a small room, maybe a 20-foot cube, that was completely enclosed with a huge door in order to isolate the delicate signals that were being used. They used a big camera, for lack of a better word, that might remind you of an enlarged version of the x-ray machine they use at the Dentist. Dawn had to lay in an uncomfortable position for up to a half hour at a time, all alone in this dark room, in order for them to try to get a good EKG of our baby boy and isolate it from Dawn’s heart beat. I sat on the outside, looking at the computers in amazement at Dawn’s courage and the technology being used to try to figure out if our boy was going to be okay. We went there four times, and the doctor there was a big part in determining when Kevin needed to be born to give him the best shot. Dawn never complained. Not once.
During this time, I had a random dream one night where I called our baby Kevin. It was an odd choice. Kind of out of the blue, and not like any of the names we had been talking about. But it stuck, and we decided that our boy was named Kevin.
Through the pregnancy, Dawn had 35 ultrasounds, 2 Amniocenteses, 5 echo’s, and 4 trips to the “chamber” in Madison. And she was taking the heart rate medicine the whole time. And she was gestational diabetic so she had to follow a strict diet. If there was ever a story of unselfish devotion to your children, this was it. She amazed me. Even with odds that were not reassuring and a pregnancy unlike anything a mother dreams of, she wanted more than anything to see her baby Kevin and give him a shot at life.
Finally, late in October, it was time to schedule a c-section. The doctor in Madison determined that Kevin’s heart rate was such that he needed to be born soon. Since Kevin was still premature, the doctors decided that steroid treatments would help his lungs. So we made yet another trip to Iowa City where we spent 3 days and Dawn underwent steroid shots and finger pricks for blood sugar checks every hour, all day and night, for 3 days, to hopefully give Kevin the extra help he needed to make his lungs strong. It was a long weekend and extremely uncomfortable for her. I think she complained once. But I forgive her for that.
By November 7, 2005, Dawn had done everything she could do. It was time for Kevin to be born, and he was. We didn’t know what to really expect and we were scared to death, but he came out pink and crying. He had made it to 36 weeks through the extensive care of many doctors and nurses and because of the dedication and love of his mom. She gave him every chance he could have, and now it was up to the doctors in Iowa City to do their magic.
The day he was born, Kevin was diagnosed as having some more problems than they were able to diagnose in the womb. It was another shock, but we still thought everything would work out okay. He would just need another operation than we anticipated.
After his initial operations were done, Kevin didn’t improve as they expected him to. By November 23, day 16 of Kevin’s life, we had hit another low. The doctors came in as a group in the way that you might imagine in your bad dreams. They told us that Kevin was very sick and they didn’t expect him to make it. It was the 3rd time that we thought we had lost our little boy.
But again, hope was not lost. If there was any chance, Dawn was not going to give up. They decided to do an open-heart operation as a last effort to keep him alive, and to everyone’s surprise it was exactly what he needed. Dawn almost never left his side the whole time he was in the hospital. She was there every morning for rounds and tried to understand every measurement and medical term that was tossed around. If there was anything she could do, she would be ready. She was an active participant in his care, and I think she was one of the reasons he got better. She refused to give up on him.
From the time we finally got to bring him home, Dawn was the best mom that I could even imagine. She was on top of everything. She read everything she could read about caring for Kevin, joined discussion groups on the Internet, talked to people, read books, and did everything he needed to improve. She woke up several times a night to feed him through his NG tube, one drip at a time from a syringe, because I couldn’t get it right. She learned how to put the tube up through his nose and down into his stomach so he could be fed. She was thrown up on too many times to count but kept going through her tears of exhaustion and frustration. She made him learn to eat despite his plans to the contrary, because that’s what he needed. I saw her feed him a whole cup of yogurt, then saw him make himself throw up because he didn’t want to eat, only to see her say “oh no you don’t, we’re eating this” and proceed to clean up the vomit and feed him again. Because he needed the calories to grow. She had a keen ability to recognize if he was sick or needed something extra. I had learned over the few years that if she thought something was wrong - even if I thought she was over-reacting - that I needed to trust her instinct because she was right. And she never failed him. Not once.
Towards the end of Kevin’s life, Dawn was noticing some changes in his behavior. He seemed a little more tired, she thought. He wanted to ride in the wagon more often than pull it like before. He wanted to watch movies more often, rather than dance. She suspected something was wrong, but I tried to reassure her that it was probably nothing to worry about. Even as Kevin entered the hospital for the last time, she knew something was wrong. She called the cardiologists and had the doctors notify Iowa City. A cath was planned the following week. She knew her baby boy was having problems, and she did everything humanly possible to help him. It just wasn’t meant to be. There was nothing more she could do. On that early Friday morning when she called me at 2am from the hospital to tell me to hurry there, she had given our boy everything she could give. The doctors came into the hallway a little later to tell us the bad news. It was the fourth time in our life we had been told that we were going to lose our baby boy. But this time it was for real.
There are so many people who knew Kevin that never even knew he had a heart problem. His mommy worried her heart sick at home many days, wondering if she was doing enough, wondering if there was any chance that she wasn’t giving Kevin. But many people didn’t even realize her struggle because she was never someone who announced it to the world or made a big deal about Kevin’s heart problems. Her mission was to give Kevin the best life possible, and part of that was to let him live like a normal little boy without a care in the world. To take the burden of his health off his back and on to her own. To shift the worry off him, me, and others so that we could fully enjoy Kevin for the little boy he was. She has been an inspiration to me and a model of the kind of selfless love that a parent can have for their child. Without her and everything she did, there’s no doubt that I wouldn’t have gotten to meet my little boy and spend 2 1/2 amazing years with him. I know I can’t do her justice in a post on a blog. But hopefully those of you who know her already know what an amazing woman and mom she is, and that Kevin’s story was only possible because she gave so much of herself.
It’s been a little over two weeks since we lost Kevin, and we are still trying to adjust to our changed life. We miss him terribly every day. Our house is too quiet and our life is too calm without his voice, his laugh, his cries for “cup!”, diaper changes, bedtime rituals, and nap time considerations. He brought such joy and happiness to our lives, and the void that he left is so obvious.
We can’t even begin to thank everyone enough for your help and comforting words when we have needed it most. The number of people who came to Kevin’s visitation was overwhelming, and showed how many lives he touched during his short life. The outpouring of love and support that we have received has shown us what great family and friends we have and how much everyone is willing to give of themselves for someone in need. Thank you so much.
We have okay days and not-so-okay days. Life must go on, and we are slowly easing our way into our “new normal”. Once the initial shock passed and we got through all the days of things to take care of, places to go, and people visiting, we’ve found that the reality of all this hits us differently. It sinks in and feels more real. It’s a profound sadness that is always with us and the ache keeps getting deeper. Every day we remember more things that we miss about Kevin and see things that remind us again that he’s not with us. Random thoughts enter our minds and our stomachs twist as the realization that he died hits again. Sometimes we can just sit and look at pictures and watch video for hours in the hope that we never forget what it was like to have him with us. Going places, eating dinner, bedtime, the morning routine - it’s all easier now, but it’s an easy that we don’t want so we don’t enjoy. We wish we could have back the days of messing with car seats, warming up corn dogs, getting cups of milk, putting in Baby Einstein movies trying to find the one he wants, and reading book after book.
Emily is handling everything as well as can be expected for an 8-yr-old. She is strong, but still has moments where she breaks down in tears, or comes into our room in the morning after having a dream about Kevin. She asks very insightful questions about Kevin and our family. We try to be as honest as we can and let her know that we don’t have all the answers either. She has continued to do well in school and play with her friends.
Out of all losses and tragedies some positive things must come, and we’ve found this to be true with Kevin’s death. It’s brought us great joy to hear stories of lives that have been changed because of Kevin. People have told us that they are going to change their lifestyle and spend more time with their kids. That they will try to live each day to the fullest like Kevin did. They have decided to be an organ donor or to donate blood. Two people can now see because they received Kevin’s corneas (the only organ of his that he was able to donate). And one person decided that if Kevin could undergo tests and procedures, then he could be strong enough to get a test that he had been avoiding - and the fact that he did it sooner rather than later may have saved his life. Kevin touched so many people during his life, and it’s comforting to know that even his loss can have a positive effect on people.
One thing that we are doing in memory of Kevin is creating a garden / sitting area in our backyard. We plan to get a nice fountain with flowing water that we can sit and watch, relax, and enjoy being outside. We will plant some flowers and plants and trees that were given to us in memory of Kevin. It will be a place of comfort, and somewhere that we will sit often and remember him.
We will continue to post updates about how our family is doing and anything that those who loved Kevin may be interested in. We know that many of you loved him dearly and are also still dealing with the loss of him in your life. We hope that all the positive things that have come from his death and the love of your family and friends will bring you comfort as well.
As most of you have heard, we lost our sweet boy yesterday morning. He had been in the hospital with a respiratory virus. Friday morning about 2:00 a.m. he got very sick and his heart stopped. The doctors worked on him for well over three hours and air lifted him to Iowa City. The doctors in Iowa City kept him alive until we could get there and hold him and say goodbye. We are unsure of why this happened and why it happened so fast.
We are beside ourselves with grief. Kevin was such a huge and joyous part of our life. We are spending lots of time looking at pictures and telling all of our funny memories of Kevin. He was such an amazing and sweet little boy, we feel truly lucky to have had him for 2 1/2 years. We are trying very hard to concentrate on the time he was here and how he lived everyday like it was the best day of his life. He taught us all how to live and I learned more from him than anyone else. Our grief is intense, but we are taking comfort in family and friends, the time that we did have with Kevin and all of the memories that we will keep with us forever.
Kevin is in the hospital again, and he’s pretty sick. He came down with cold-like symptoms last week and was kind of tired and not himself, then a few days ago his asthma seemed to start acting up and a kroup cough hit him while he was down. So we took him to the doctor on Tuesday and he was admitted to the hospital for respiratory problems.
So far he’s been a pretty miserable boy. I think is the sickest we’ve ever seen him (except for after he was born, of course). He’s completely listless and isn’t himself at all. Tomorrow will be his 4th day there and he doesn’t seem to be improving as quickly as we would like, so we are kind of worried. Luckily his cardiologist is right nearby and has stopped in to see him a few times. She reassures us that she doesn’t see anything heart-related, and that he is just having a hard time kicking the combination of things that hit him all at once.
We hope he’ll recover soon and can come home in the next day or two.
Kevin has always had his little quirks and “obsessions”, but lately it’s his coffee. Just like his mom, Kevin loves his coffee. No, of course not real coffee - just an empty coffee cup from the Porter’s gas station. Whenever Dawn gets coffee from there or McDonalds or Starbucks or wherever, Kevin is obsessed with the cup and wants to carry it around everywhere. He’ll yell out COFFEE! if he can’t find his cup and become quite irritated. We know we are just being facilitators of his coffee habit, but he’s just a boy who loves his joe…
Kevin got to go to the Family Museum the other day for a play group with other kids. He had a fun time and loved driving the play car, of course.
Bath-time with cousin Keaton (”Kiki” as Kevin calls him) is always fun!
Last Weekend we took part in a telethon for the Children’s Therapy Center of the Quad Cities. It was on the local NBC station, and we were asked to be interviewed to give a little information about Kevin, his history, and how the CTC is helping us. Sara has come to our house almost every week for over a year - first to help Kevin with his eating issues and now to help with his speech. She has been wonderful for us and Kevin. He loves to “play” with her and her bag of toys and is always excited when she comes. We appreciate her help and reassurance that he’s doing well when we get worried about him. So the CTC has been great for us, and we were glad to volunteer to be a small part of their telethon.
We showed up at the station, had a bite to eat, then went up to the studio where they were doing the telethon live. Kevin sat and played with toys for a bit so they could get some background footage. We had also visited the CTC location a few weeks ago where they filmed him to get more footage. Our segment wasn’t long, thankfully, but it was fun to see Kevin on TV and to be able to mention Sara and how she has helped us. Dawn did a great job and sounded perfect. I, on the other hand, wasn’t expecting to be asked any questions and didn’t come across sounding as smooth!
We just got back from Iowa City, where Kevin had his semi-annual “big” checkup for his pacemaker and sedated echo. Everything went well and there were no surprises.
Kevin was a wreck this morning, having to get up and out the door around 6:30am. He always has a cup of milk in the morning, but since he was going to be sedated he couldn’t even have water, so he was crying and asking for his “bup” (cup) every few seconds. He didn’t sleep the whole way to Iowa City, but by the time we checked in at 8am he was doing alright. By the time they started checking his temp, blood pressure, etc after check-in, though, he was a full wreck again. They do their best to not make these kids wait too long, but when you have a starving 2-yr-old seeing lots of doctors and getting lots of things checked, every little wait feels like eternity.
We saw the pacemaker doctor first, and she said his pacemaker is working very well with no signs of trouble and battery life still looking like 2.5-3 years to go. When they do these checks they just hold a small “puck” over his abdomen where his pacemaker is and it communicates wirelessly with the device. This time they had a little stuffed puppy that fit over the puck and he seemed to enjoy that. Since he was still pretty cranky during this, they decided to do the sedation after all, since they were considering trying an echo without it. There was no way that was going to happen.
From there we headed upstairs for a chest x-ray. This one was easier than we’ve had before because he just sat in a chair and did really well, rather than being strapped into a silence-of-the-lambs-style contraption. His lungs looked a little wetter than they expected, but that could be because he was sick last month or because the picture wasn’t very clear. They didn’t seem worried about it and said they’ll look again in 6 months. Kevin got his Thomas the Train sticker and we headed back to the cardiologists.
They did some more general checking up and got the echo machine ready while we gave him his sedation. It’s just two syringes, which he’s used to taking, but since these aren’t banana flavored like his usual meds he fought it. He went down fighting, but eventually succumbed to the sedation and was out.
The echo went well. A guy named Roger did it for us, who has done his at least once before. He’s a great guy and talked to us, explaining everything he saw. He had a new machine that let us see Kevin’s heart in 3-d, too, which was neat but still pretty hard to see what was what. Everything looked good as far as he could tell, and Kevin’s leaky valve was leaking only mildly, so it’s good to know that it’s not getting worse. After the echo they did a quick EKG while he was still asleep. Kevin hates EKG’s because they put about 15 stickers and probes on him and he has to stay still.
Finally the head cardiologist Dr. Law came in and told us everything looked good overall. He upped his Enalapril medicine a little and made a small change to a setting on Kevin’s pacemaker (if you must know, the delay between atrial contraction and ventricular contractions was extended just a bit to give the ventricles more time to fully fill).
Then we were all done, so we just had to wake him up. He was still pretty out of it so it took a while. We removed all his EKG stickers and stuck a cup in his mouth and he slowly came around. He acts a little “drunk” when he wakes up and was slurring his words, asking for “mommy-daddy-cup-byebye”, and almost falling off our laps like he couldn’t keep his head up. He drank some fluid so they gave us the okay to go home.
As we often do after his check-ups, we stopped at McDonalds for a Happy Meal on the way home. Unfortunately Kevin was still out of it and screaming. We had to stop and daddy had to sit in back and hold him for a bit while we ate. He finally fell asleep on the way home and he’s still napping away after his long morning.
We always thought Kevin was a smart little guy, but the other day after breakfast he made it clear that he craves a little more information about current events than we are teaching him. I guess he’s an Obama supporter too - that’s our boy!
Kevin had a fun time with Easter this year, even though he didn’t quite understand why he should find eggs and he isn’t that big of a fan of candy. Nevertheless he did manage to find some eggs and have a good time.
We tried not to mention the Easter Bunny too often, because he was traumatized by a visit from the him at his library storytime. He didn’t want to have anything to do with that big bunny, and for a week afterwards he would peek around corners looking for him and saying “bunny?” in his obsessive, worried tone that he has. Eventually he got over it, but even now if we mention the “E.B.” he says “E.B.?” and gives us a look like “how could you?”
