It is that time of year...anxiety is running high

Sports have been a great distraction for Kal recently. We went to a hockey game last night and as you can see from the photo-all eyes and attention are focused on the ice. Although the team we were rooting for lost by quite a few goals (or touchdowns as Finn kept calling them) Kal never gave up hope and we stayed to the bitter end. What a great way to relieve a little stress...or redirect it anyway!

We had Kal's parent teacher conference this week and I must start by saying we really hit the lottery this year-Kal's first grade teacher (Mrs.) is amazing. She really gets Kal. Sometimes things are just meant to be. This wasn't a school "pre-planned" match up, let’s call it fate.

Kal has suffered from severe anxiety for as long as I can remember. When he was younger it was more challenging to figure out the root of what was bothering him, but now that he is older HE can usually make it pretty clear to us. One of Kal's strongest traits has always been his ability to express himself verbally. He began speaking at 8 months old and has never really stopped-he is a constant chatter box...which we LOVE! Some of Kal's worries have seemed a bit far-fetched at times and some make perfect sense (or at least we can understand where he is coming from). We have sought professional advice-some has helped and some...not so much.

Kal never really liked being dropped off at day care, but we thought that was somewhat normal. In pre-school he worried about "who" would pick him up each day. He is a smart kid and had the schedule memorized before he even set foot in the school (it was the same each week) but he began perseverating over who was picking him up. He would start in the morning by asking us and it would carry over to his teachers...all day long, repeatedly asking the same questions and all around who was picking him up. We met with a psychologist who suggested Kal keep a cardboard coin in his pocket with the name of who was picking him up that day written on it so that HE could answer his own question and wouldn't have to rely on others to provide the answer. This worked like a charm-right away. We thought we were in the clear and we were for a while. Other worries cropped up, but he didn't appear to perseverate over them as he did the "pick up” issue. Things seemed good.

Fast forward to kindergarten and the bus. Kal had this fear before he ever rode the school bus that it was going to get into an accident. He stressed over this for quite awhile and it just seemed to get worse instead of better as the year went on. And then, on his birthday of all days, I received this blast from the school that, yes, you guessed it, there had been a "serious" bus accident...and I thought, "Nooo, this can't be? What are the odds that this would be his bus?" And then they said it. It was indeed-bus #12 that was in the accident. After hearing this, I realized that I hadn’t heard from Kal or the babysitter, but I quickly reassured myself that things must be ok. After all, the bus would have dropped him off hours ago and if it hadn't, surely I would have heard from the babysitter by now, right?

I took a deep breath and called home. Kal answered and began telling me that HE had just heard the blast on the answering machine and that bus #12 was in a “serious” accident after it dropped him off. I tried to down play the whole incident, but he already knew far more than me. "It said the fire trucks and ambulances all arrived on the scene," he told me. "And a few people, including Mrs. G. [the bus driver] had all been taken to the hospital."

“Really!?! This is all in the public blast?” I thought, but oddly he seemed almost calm about it. "The accident had happened after he got off the bus so maybe he won’t think too much about it," I wishfully thought. But how does this happen? What are the odds? Kal has worried and worried about this very thing happening and then it does… and on his birthday! Crazy!

He rode the bus a few more times that year just to see that it would be ok, but his bus driver didn’t return after the crash that school year which made it hard to convince Kal to keep riding it himself. He began perseverating over the bus the moment he woke up each day and this anxiety continued throughout the school day - the bus was not really seeming like a good idea any longer.

First grade started off ok, but we decided for "scheduling" reasons that the bus was probably not worth the trouble it was causing and Kal became a permanent pickup at school. This is when the severe anxiety really reared its ugly head again. Kal became fixated on who was picking him up - just like pre-school all over again. He was talking about it to anyone and everyone who would listen. The pick-up coins went back in his pocket and we began rewarding him for refraining from asking people at school who was picking him up-he knew the schedule and if we turned the question around and asked him-he would always answer correctly.

Now we are to the point where I started this blog entry - the parent teacher conference. Mrs. begins telling us how she really “gets” Kal and she can see from his face, his body language and his teary eyes that he is genuinely nervous. Riddled with fear and anxiety. Mrs. goes on to say that she can see that he feels trapped and that he really doesn't want to feel this way. I can’t believe what I am hearing…finally someone understands. I have tried to explain this to acquaintances over the years who still believe that he is trying to manipulate us by acting this way to get what he wants. "If you could just see him you would know the fear is genuine and your heart would ache for him the way mine does," I think as friends tell me all the stunts their child has ever pulled to get their own way. "You too would know by the look in his eyes that he is not acting or turning on the water works to get what he wants."

Kal shakes at times he is so nervous-it is hard to watch. He is such a "people pleaser" and those that know him, KNOW he would do anything to avoid letting anyone down. I can tell these friends aren't really buying my theory, and probably never will , but I am ok with that-I don’t expect them to. I know they don’t really know him. And that is why when Mrs. says these words I have to refrain from leaping across the desk and KISSING her, "I really get how he is feeling." Mrs. said. She gets him...did she just say that? WOW, Mrs. really GETS him! I am giddy.

Kalvin was on a bypass machine for over 8 hours undergoing major open heart surgery at 5 days old. As a result he suffers from an anxiety disorder-the professionals have told us. We signed waivers and read study after study-this is just one of the long term side effects of by-pass surgery. Mrs. went on to say that Kal’s ability to express his feelings is one of his biggest strengths and she isn’t sure that rewarding him for hiding his feelings is the right way to approach this anymore. "Ok, we can come up with another way,” I reassure myself.

Then Mrs. continues, "Kal has been asking to go to the bathroom a lot."

"Uhmmm, hmmm, ok," I am thinking. "He use to wet his pants a lot and recently began going to the bathroom frequently to avoid wet pants. The pedi informed me that this is perfectly normal for his age."

And that is when Mrs. said the words that shook me to my core..."I think he is going in the bathroom to cry and let out his emotions so no one can see him," she says. "He comes out of the bathroom with swollen red eyes and a flushed face. And...this is happening several times throughout the day."

The thought of any seven year old child feeling so alone all day long that they have to go in and out of the bathroom to cry is painful to even think about. The fact that it is MY child, my first grader going into the bathroom to cry because I told him NOT to ask anyone at school anymore questions about who is picking him up AND, and I am rewarding him for this “good” behavior, made me want to vomit right there on his desk. How does one even wrap their head around how he is feeling on a daily basis? And then I think, "thank God for this teacher...and for placing Kal in her classroom this year." Thank you.

I have read a lot about CHD kids suffering from anxiety. Kal is enrolled at a study at Children's Developmental Center that works closely with the Cardiology Department to study these kids and their learning and developmental delay issues. I have been trying to educate the school about the effects of undergoing 8 hours of bypass surgery at 5 days old. Some seem to really want a label to help treat him...does he fall on the Autism spectrum-they want to know? That we will learn in some upcoming testing, but I can tell you right now he doesn’t. He suffers from "CHD Disorder" (my own label) and I hope if you are reading this and you can relate to what we are experiencing that you will comment below or email me privately. This is why I write. I want to help Kal and I want to try and help others who are also experiencing some form of this suffering. We have come a long way-my husband and I-our family. It has been, and remains at times, a tough road to travel - this CHD highway. Kal makes it all worth it, every single day. This is who he is and I Iove all of him with every fiber of my being. I just want to be able to help him the best way possible. I want to be able to help him forget his worries for a few hours the same way a bunch of men with sticks, chasing a puck around the ice can make him forget!

The gift of life.

This video really moved me. It is a reminder of how precious life really is. Grab a kleenex...or two-it is really such a beautiful story.

I watched this video and was deeply moved. It is such a bittersweet story. I was in awe of this perfect family and their miracle, baby Mia. I could not get the image of baby Jacob out of my mind-what his amazing mother must have gone through. It is a reminder to us all how important organ donation is. How with each ending there is a bright new beginning. Then I eagerly moved on to "blog land" in search of more to read about beautiful baby Mia and her family and that is when the rug was pulled out from under me. I was not prepared for what I read. I could not stop crying. This is a true reminder of how precious every day is. My thoughts and prayers are with the McDonald Family.

Mia Marie McDonald 2008 - 2012
Mia Marie McDonald, beloved daughter of John and Marie "Mimi" Jensen McDonald returned home to her Heavenly Parents on October 8, 2012.
Mia was born on July 8, 2008, in Seattle, Washington. Mia came into this world with challenges, but our baby girl came prepared to live life fully. Her family knew from the time of her birth that she would need a heart transplant. After many prayers on her behalf, Mia received the much awaited heart transplant when she was just four months old, from her angel heart donor Jacob.
She is our little miracle and we feel blessed for every day we had with her. She had a special way of endearing others to her and connected with people everywhere she went. Her sunny and infectious personality would fill any room. She loved music and would dance instinctively. She loved singing primary songs, playing with her "babies," coloring, eating "chocits" going to preschool, calling her "Aunt Nats," giving "essimo kisses" and giggling. We will miss her affectionate, sweet, spunky and fun personality. This darling girl had a mischievous side and she would relish teasing her brothers and sisters, and loved when people would laugh when she said something funny. Mia exuded joy. Her tiny body radiated light every day of her life.
Last week, the Make-A-Wish Foundation granted Mia's special wish to meet Minnie Mouse in Disney World. Upon arrival, she became ill and after being hospitalized her heart stopped beating. Although her heart recovered, the trauma to her tiny brain could not recover from injuries incurred while they were trying to resuscitate her. Darling Mia never made it to Disney World, but she will be giving someone else the gift of life by now being on the giving end of organ donation.
Although few, we will cherish the sweet years we shared with our golden curled beauty, Mia. She will be dearly missed by her parents, her brothers Jensen and Sam, and her adoring second mother, her sister Ellie.
She is also survived by her grandparents Sid and Cindy Jensen of Midway, UT, Dean and Laura Conway of Spanaway, WA, and Vern and Carol McDonald of Lakewood, WA, as well as numerous aunts, uncles, and 60 cousins.
She was preceded in death by her great-grandparents Murray Giles, Fred and Aliene Jensen, Howard and Shirley Hallmeyer, and Floyd Vernon McDonald.
We love you Miss Meena, our arms and hearts ache to be with you and hold you. We anxiously await the time when we will be reunited. "I missed you in na night!"
Funeral services will be held at 11 a.m. on Saturday, October 13 at the Midway Stake Center. A gathering will be held from 6 p.m. to 8 p.m. on Friday Oct 12th, and one hour prior to the services on Saturday. Mia will be interred in the Midway Cemetery. Please join us in the celebration of her courageous, joyful, life.
Condolences may be left for the family at

Please be a registered organ donor.

We don't always get chances like this...

Something happened as I was on the way out the door to go to Kal's parent teacher conference, his eyes welled and he started sobbing. I know Kal doesn't like me to go away when it is a normal time for me to be home-I work full time and I know it is hard on him. But this sobbing when his grandmother would be with him was odd, really out of the ordinary. I could tell by the desperation in his voice and from his words that something was going on, but I couldn't quite figure out what it was.

I asked him, "Did you have a bad day?"

"Yes, worst day E V E R", he cried.

"What happened?" I asked.

"Everything," he moaned.

"Did you have a substitute?" I asked knowing this could throw him on the best of days.

"No," he replied.

"Did you fall at recess? Did you drop your lunch in the cafe? Did someone think you were taking the bus?" I drilled trying to think of all the things that really worry him.

"NO, NO and NO," he shouted.

I left and just became more confused when my husband and I met his teacher and she reported what a fabulous day he had. Hmmm, I pondered the possibilities to myself throughout the entire conference. I was trying to solve the mystery knowing that it is always best to be one step ahead of an anxious child.

When his father and I arrived back at home, we told Kal how proud we were of his work and more. "Your report card is stellar and your teacher says you are such a hard worker. We saw your desk and it is really cool! And best of all your teacher thinks you are so kind and considerate to everyone. She says that you always ask the kids who are looking for a playmate to play a game with you." we rattled off all the teacher had reported to us.

"Really?" he said stunned, "She really said all that about me?"

And then, like a ton of bricks landing on my heart, it hit me. This poor little boy was panicked that his teacher wasn't going to say good things about him. That is why he was so desperately trying to prevent me from meeting with his teacher! Wow. How could a seven year old have such little self esteem? He is the kindest, gentlest, sweetest, most considerate boy and everyone at school loves him and is constantly telling us this - all the time. Hmmm, telling US this. Maybe this is the problem. Maybe we aren't telling HIM this enough. Do we take the time to really tell him how much we care?? What a kind special soul he is? Do we go that extra mile to help him see his own strengths? Obviously not. I was crushed. I felt like a complete failure. All we do day in and day out for our children, but maybe we are overlooking the simple, the free, the one thing they are looking for and need more than anything else...our words of acknowledgement.

The next day, I was browsing some books at the book fair and I found this wonderful book. For You, Just Because You're Very Special to Me -thoughts to share with a wonderful person by Douglas Pagels. I have been reading it to Kal every night before bed and before his nightly book. Just me to him. It puts the biggest smile on his face and you can see his whole heart melt as I read. It is the best thing to come from the parent teacher conference and it is so simple, so easy to implement and so very rewarding for both of us. Here's the first reading:

Has Anyone Ever Told You This?

Has anyone ever told you what a wonderful person you are?

I hope so! I hope you've been told dozens of times...because you are just amazing.

And just in case you haven't heard those words in a while, I want you to hear them now.

You deserve to know that...

It takes someone special to do what you do. It takes someone rare and remarkable to make the lives of everyone around them nicer, brighter, and more beautiful. It takes someone who has a big heart and a caring soul. It takes someone who's living proof of how precious a person can be.

It takes someone...just like you.

"Just" A Cath Lab Procedure

We received the date for Kal’s cath lab procedure-January 16th. It is a 3 day extravaganza-kicking off the day before the procedure with a full battery of tests including a chest x-ray, lung scan, blood work, EKG and a visit with the cardiologist. Kal will stay overnight in the hospital the night of the procedure with a bed provided for one parent.

A visit to the cath lab may seem “easy peezy” after having undergone open heart surgery and I guess in retrospect I felt that way years ago, but now time has passed and I have a bright 7 year old who is so full of life. Life meaning he is a vibrant energetic 7 year old. Life meaning he is curious and full of questions. Life meaning he is my whole life. He is my 7 year old "baby". So when I start to think about January 15th- the day we head into the hospital to face blood work knowing needles have been Kal's biggest medical fear for the past few years, a chest x ray and a lung scan (requiring a needle full of radioactive dye)-I get that old familiar pit in my stomach. I wonder how Kal will deal with all this testing knowing that it is followed by an overnight stay in the hospital to have his heart worked on. I wonder how I prepare a boy who suffers from severe anxiety on a regular day for all this? And I wonder when I tell him about all this-not too soon, but not too late?

I have to consider that he is going to find out by accident if I wait too long to talk to him about his cath lab visit. He is always listening...taking in all that goes on around him, all of it. So even though I plan not to talk about it, I will "slip up" and mention it when he is in ear shot and he will hear it all, he always does. Just tonight he told me he knows I have a web site all about him. I was stunned. I have done all my work when he is asleep. I have not talked about it at all, not ever on the phone. How does he know? When I asked him why he thinks that, he said, "I am a force field." Hmmmm.

I was having a conversation recently with someone who was simply making small talk with me when I am quite sure they got a little more than they bargained for. They politely asked how the kids were doing and I replied my standard, “Good-they are well, thank you.” And then before I could stop myself I blurted out, “But Kal IS going in for another procedure on his heart.”

The conversation flowed back and forth for a bit and then they spoke the words that I have not been able to shake, “Oh, they aren’t cutting him open? It is JUST a cath lab procedure? That’s not so bad. I thought they were cutting him open." And just like that the conversation was dismissed.

For some reason I haven't been able to stop thinking about the conversation. The doctor is inserting a hollow sheath into his femoral vein and pushing through it a long tube with a deflated balloon on one end, stent on the other. The balloon end will snake up the vein, past the liver, and enter the heart. ENTER THE HEART. Enter HIS heart. I dont know, sounds just a little serious to me. He is SEVEN. He is my first born child - my baby. He is my whole life. I know the conversation was an attempt to minimize the situation to ease my mind and make it all seem somewhat routine. The thing is, minimizing the situation does not provide comfort. I guess I was in search of just a little empathy. I know people don’t know what to say. I get that, I do. It is just the life as a mom can be full of worry and fear - add open heart surgery and a lot of uncertainty about what the future holds and you have the life of a heart mom. I don't know, it seems wrong to even mention this now that I have typed it, but I know there are other heart mom's out there who know exactly what I am feeling. Some days you just don't feel like pretending anymore and you want someone to acknowledge that it is a tough road we travel. The optimist in me can now see this conversation as a gift...the words I can use to explain to Kal about his heart procedure. It is JUST a cath lab, nothing to worry about. Nothing serious. Easy peasy, lemon squeezy. All will be just fine.

There are six entries in total relating to Kalvin's cath lab.  You can read them here 1, 2, 3, 4, 5 in order.  Thanks for stopping by.  We love to hear your thoughts and comments!

It has been 6 years since Kal has had any heart related hospital stays and I would say that is a pretty good run of good luck - but that isn't making this new news any easier to deal with. We went for Kal's annual cardiology appointment last week, yes I did say annual and I do realize how blessed we are that these appointments are now only annually, and heard those words we were not really planning on hearing - "we will need to go to the Cath Lab and put a stent in his coarc"! I am learning that with each age, your child's cardiology appointments present new challenges. There are the baby stages when trying to keep them from eating before the appointments so they can be sedated is heart breaking and challenging all at once. Then come the toddler stages when they are too big to be sedated and keeping them still during the procedure itself is completely draining. Then there are a few years where things were fairly smooth - I would say ages 5 and 6 have been the best for us thus far. So I wasn't really expecting age 7 to be much different from the previous two years, but once again we are facing a new challenge - Kal's own line of questioning.

As I sit and watch the echocardiogram screen I can feel my stomach tighten. I see the red streaks of color moving back and forth and I see the blue streaks doing the same and I strain to make out what the screen is telling us. I can remember a time, as if yesterday, when I would become physically ill while waiting and staring at the echo screen. I would find myself praying all would be ok and straining to make out anything that looked wrong on the screen - like I would really be able to decipher anything wrong on the screen, but yet I still kept on staring and trying to figure it all out. I fear some of this fear is now shifting to Kal - he is asking a lot of questions and showing concern about the procedures for the first time. His first question to me in front of the technician is "what are the sticky things on my heart for?"

"To see how your heart beats" the technician answers.

Kal then turns to me and asks, "What if it is beating too fast?"

The technician answers quickly - purposely not giving me the opportunity to respond, "It is not."

Kal seems to be satisfied by this response and settles back in to watch his movie. Kal is now asking the questions I use to want to ask, but knew I couldn't for many reasons. This is so much easier for me to deal with than when he was 3 or 4. This is "easy squeezy" for ME now, but Kal is so aware of what is going on and showing concern about it all for the first time. For an already anxious child this could really become more anxiety provoking than I anticipated. I quickly decide in my mind that we will just have to watch what we say in front of him and be sure to make it all "light and fluffy".

The black, white and gray shadows on the echo screen again automatically cause my stomach to knot up-the same way the smells that permeate the lobby of Children's Hospital take me back 7 years with one sniff.

Kal is holding his breath now which makes his lungs cover his heart and hard to get clear images of his heart parts. The technician explains this to Kal but he is still struggling to relax and breath normally. When we get into the clinic room we are greeted by Kal's cardiologist. His calm demeanor and big smile always put me at ease, but he has paper and pen in his hand today and I know instantly what that means... he is going to draw us a picture and that is never good news. I struggle to make small talk and hope that I am wrong. As he looks at us and asks if he should take Kal out of the room to discuss "a trip to the Cath Lab", my husband and I look back and forth at one another. Hmmmm, instantly I think of Kal's teachers telling us that we might be sharing too much "adult conversation" with Kal lately. How do we handle this? How will Kal handle this news? Will he understand? We opt to let him stay in the room and try and keep the conversation light and fluffy - as if a trip to the Cath Lab for your 7 year old can ever be "light and fluffy"?

We have known this day would come, but it is still scary for us and now that Kal is 7 and asking lots of questions, I imagine this procedure will be a lot more stressful than I originally thought. They are going to put a stent in his coarc where the surgeon repaired it at 5 days old. They patched it with tissue (human tissue that was treated but that doesn't grow) and now he has grown so much (he weighs 75 pounds and 4'5") that the coarc is once again very narrow. The dr. asks if we have noticed any signs - slowing down before his friends have to, shortness of breath, tired alot, or leg aches. A light bulb goes off and I am feeling like a very neglectful mother...he has complained of leg aches... A LOT and I thought it was nothing more than growing pains. Kal seems to be taking this all in stride and doesn't really ask any questions - the dr has done a great job at making this all light and fluffy. And now we wait for the Cath Lab to call and schedule the procedure. Kal does complain a bit about having to be at the dr and does ask us why his younger brother doesn't have to have his heart looked at by the dr's and then he asks the heart wrenching "what is wrong with me...and why am I broken?" and I swallow hard and point him to the gift shop.

There are six entries in total relating to Kalvin's cath lab.  You can read them here 1, 2, 3, 4, 5 in order.  Thanks for stopping by.  We love to hear your thoughts and comments!

Kalvin, born 2005

Kalvin was born on May 22, 2005. We were completely shocked and devastated to learn of the CHDs at his 20 week ultra sound. Once we were under the care of Children's Hospital, Boston, Kalvin's prognosis improved and we were filled with a new sense of hope. Kalvin was born at 38 weeks, weighing 10 pounds and was 21 1/2 inches long with d-transposition of the great arteries, a VSD, Coarctation of the Aorta and pulmonary stenosis.

A team from Children's Hospital and the NICU at the Brigham and Women's Hospital were outside the delivery room when Kalvin was born. They whisked him away to the NICU when he was just minutes old. And then, when Kalvin was just a few hours old, and before I had even had a chance to hold or see my beautiful baby boy again, I was asked to approve the atrial septostomy surgery.

At five days old Kalvin underwent 8 hours of open heart surgery to correct his defects. I remember meeting his surgeon, Dr. Pigula, and asking to see his hands. I knew our future lied in his hands and I wanted to see what the hands that would determine my future looked and felt like. I asked Dr. Pigula what he thought the most difficult part of the surgery would be and his reply was "it is just a lot to do all at once."

Once Kalvin was back in the ICU and we were allowed to see him for the first time, he experienced junctional ectopic tachycardia (JET) with a jet rate of over 200/min. Doctors and nurses came running from all corners and surrounded his crib. They worked on him for a while and ended up building an "igloo" around his crib to try and get his JET rate down. The doctors did a great job at making this all seem somewhat routine, but I overheard the doctor telling his students that Kalvin's case of JET was one of the worst they had ever seen. This is when we realized this was going to be a roller coaster recovery and every day would present new challenges. Kalvin came home after 21 days. We were a little nervous without all the doctors and nurses around, but we quickly felt like ordinary first time parents-sleep deprived and concerned with diaper changes and feeding schedules!

Kalvin's pediatricians noticed, at his 3 month check up, that the pulse in his left femoral artery was nonexistent and sent us immediately over to Children's Hospital. Kalvin had two catheterizations to correct his COA; one at 3 months and another at 9 months old. The first one was unsuccessful and resulted in a damaged femoral artery in his left leg. His second catheterization was a success! As a result of his damaged femoral artery, his left leg is now about 1cm shorter than his right and also has less muscle mass, but it doesn't slow him down!

Kalvin continues to thrive. He is in the 100th percentile for height and weight and doesn't take any medications. He is a vibrant loving little boy who loves boating, playing in the snow, music and going to and playing doctor! He thinks that all the people out there in the world who "help" you are nurses. When we were in a store and were having trouble finding something he told me "go get a nurse to help us!"