Kari Olavson

@kari-olavson | contributor
Community Voices

The pictures that matter most

So, before the moments in this picture, you wouldn’t have caught me in a swimsuit with a camera around, no way. I always wore a dress until I got in the water or just didn’t go swimming. I was embarrassed of my weight. But, I knew while planning our son Jacob’s cross-country, bucket list road trip in 2017 that I would want pictures of every little thing, and that it might mean beach pictures. I mean, our primary goal was to get Jake in the water! To touch the ocean!

So, I found myself a cute swimsuit and just told myself I would do what I felt comfortable with as we went on our adventure. I knew many of the photos and videos we took would be sent to Kare 11 as reporter Lindsey Seavert prepared a story about Jacob’s (bucket) List and our trip. I wanted them to truly reflect our family and our adventures.

When I carried Jake down to the water, I wore my swimsuit cover. I was so self conscious of all the people around us, but I did my best to ignore those feelings and immerse myself in checking this incredible item off his bucket list. This day was not about me, or my big butt. It was about Jacob and his endurance and passion to never give up. It was about making precious memories with him because we just didn’t know how long he would be with us.

When someone offered to take our photo, we had already done some swimming and they must have noticed us taking our own photos, so Kirk and I quickly laid in the sand and this photo was taken. I knew I would hate it. I knew I would just see flabby, white thighs, a big belly and a double chin.

But, as it turns out… it’s one of my favorites. I love it because Elsa isn’t looking, and that is Elsa in a nutshell… busy and in her own world,, Kirk and I are laying with Jake and all he sees is Mom and Dad, down in the sand, enjoying his beautiful beach day with him. And Seth is with us, he took many pictures for us so it was nice when he was in them, too!

My kids and my family weren’t just noticing the body I am embarrassed of, they were just glad we were all there, enjoying the day. I thought about it a little bit before sending it to Lindsey, did I really want a large portion of Minnesotans seeing my non-beach body? But, it was such a special family moment, I sent it.

The night the story aired, I felt proud. Of course proud of Jake and our family for what we had accomplished, but also proud of myself for not hiding this family picture, full of love, just because I was worried about what someone might think of how I look. Maybe someone did watch it and say “holy shit that chick is fat!” But, that’s not my business anyway.

My ramblings for the day are just this, take the picture… take it with messy hair, take it after you cried your eyes out, take it after you had a crazy park day with your kids and everyone is dirty and exhausted. Just take pictures. And be in them! Who cares how you look?! They will be treasured gifts to you and to your children. You won’t regret capturing a moment of joy, even if you look a bit rough. I promise.

Kari Olavson

The Benefits of Choosing Pediatric Hospice for Your Child

Here we are, about a year out from the day we chose to begin hospice for our 6-year-old son, Jacob. I knew as soon as I climbed in the ambulance with him a year ago that it would be our last ride; I just had a feeling. I knew his body was tired. I knew the seasons of his life were changing. What I didn’t know was that we while we were facing the end of our son’s life, we were also being blessed with a great gift: hospice. Hospice never sounds good. The word itself indicates death and dying and oftentimes, that makes people really uncomfortable, especially if you’re referring to pediatric hospice. What is hospice? For us, it’s choosing comfort. It’s realizing that sometimes, even maintenance care can be intensely stressful (bi-yearly bronchoscopies for example). It’s accepting that you can no longer “fix,” and must now just love and care. The situation that shouted “hospice” to us was a gradual decline of Jake’s nervous system, causing dysautonomia and the inability to keep his body warm. We called an ambulance that day because his temperature was 94.5 degrees Fahrenheit, but we had done similar things before. I knew there was only so much they can do. We didn’t realize, however, that we were facing only four months of hospice before Jake went to heaven. At the beginning of the process, we discussed a three-year term, and afterwards we’d revisit our plans. Pediatric hospice has different guidelines than adult or geriatric hospice. Hospice made us throw caution to the wind a little more often. Which was undoubtedly, another gift. I recall planning for a Christmas party just a few days after getting out of the hospital with our still new hospice plan. We decided Jake needed to go. We brought his heated blanket and lots of warm clothes, all his meds and his equipment. It was so much. He loved it! He stayed awake for most of it and got to see Santa Claus. Hospice also made us make time to snuggle and cuddle and enjoy the little things. A friend, who has also lost a child, told me to take pictures, so I took pictures of everything: his fingers and toes, his eyelashes, his cute little nose. We had a friend come take candid photos of us just enjoying him one morning. The other gift it gave us was a plan. Now that we were in hospice, we had a plan for the end of Jacob’s life. We knew what it would be like (or most likely), we knew the signs indicative of a decline, and we knew what we wanted for him. I have always been someone who needs as much control as possible around a situation, and hospice helped me find balance in an almost uncontrollable situation. Lastly, we were blessed with the gift of the plan we had for him coming to fruition. Not many people get to plan how they will die, and even less get to honor that plan — because dying is as personally unique as being born. For us, letting Jake go home to G-d in the comfort of his own bed, in our home, surrounded by those who loved him most, was what we wanted and what we assumed he wanted. We chose to make him very comfortable with medicine and remove his ventilator, as his life was mostly pain at that point as his body was slowly shutting down. I can see now that we made the perfect choice at the perfect time, just as it was all meant to be. A doctor once told me he saw life in seasons. We are born in the spring, and in the winter, we pass away. I like this analogy. Jacob struggled a lot to get through spring. I feel he really came into his own and found comfort enough to just enjoy life in his late summer or early fall — that beautiful time of year when the leaves change and a walk outside is brisk and refreshing. That was the part of his life he most enjoyed. Jacob’s winter was short. We almost didn’t realize winter had come and he was gone. I miss him every single day, but I’m still thankful for the gifts hospice brought into our lives. Sometimes, there is no other way, as much as we wish there was. Throughout his life, Jacob attracted the most incredible people, many of whom remain good friends today. But hospice? That was a team of angels, I am almost positive.

Kari Olavson

What Raising a Son With a Rare Disease Means to My Family

Being rare means many things. Often, you don’t start out rare. You are tossed in the bucket with everyone who experiences your symptom. I recently read a quote from a friend that I had to stop and reflect on. It has popped into my head repeatedly since that day. “If you hear hoofbeats, assume horses, not zebras.” Doctors and health professionals seem to be taught to think this way in diagnosing and treating illness. And why wouldn’t they be? But sometimes, it is a zebra. My son, Jacob, is rare. In the beginning, seizures were our battle. They began when he was born and have continued to this day. At first, his neurologist believed we would resolve and control these seizures and life would go on. Then it became apparent the seizures weren’t backing down. This led to the first round of genetic testing. Negative result. He suffered from infantile spasms at one point. They’re a harsh, awful and stubborn cluster of seizures that usually present around age 1. This gave us a clue — a hint of a bigger picture. Infantile spasms are also rare, and only a unique subgroup experience them. Rare means lack of answers, and when the answers start to show their faces, they often are so specific, you still can’t relate to anyone, so it means feeling alone. I’m thankful that many of Jacob’s doctors listen and are open to suggestions and new ideas. A special needs mom with the internet at her fingertips does better research than the FBI. If I find something concrete that I truly believe could help, I share it. But I didn’t always do that. I had to build up confidence and realize that if Jacob is as rare as he seems to be, my husband, Kirk, and I are part of a handful of experts on his specific disease just because we’re his parents. Being rare means that people will learn from you. It’s not all bad. Yes, being rare is difficult, but it presents us with an opportunity to educate our peers, especially when we see another family swirling around in the pool of some seizure disorder or a developmental delay, and we can reach in and help them find answers because of the path we took to get here. It also means, sometimes, doctors don’t want to take responsibility for you. They become intimidated by how complex our world is and run screaming. Here’s an example: Jacob had a seizure and vomited after. This happened three times. I called the neurologist who said, “Sorry, that seems like a problem his gastroenterologist should deal with.” Then I called the GI doctor who said, “Oh, Mrs. Olavson, that seems like something the neurologist should deal with.” I called the neurologist again who said, “Well, what do you think we should do?” Me? I’m not a doctor! I’m just the resident “Jacob” expert. Then one day you get an answer. One little letter, on one little gene. An “A” that was supposed to be a “G”. That’s it. Because of the path genetic testing is on, people will no longer wait like we did. I spent five years worrying he had a birth injury or I caused it by taking an antidepressant while pregnant. Now, I know it’s something so small, by comparison, it’s more catastrophic to my son’s body than a nuclear bomb is to the earth. We recently received news that my husband also has the same mutation. My boys are part of .007 percent of the population. I believe that number will grow. We also learned that this gene mutation is always destructive. But that’s another thing I believe will change with time. Genetics in general are still in their infancy. For now, this means searching for whatever else ails Jacob because there must be something more. Kirk doesn’t have seizures, but he has a family history that lines up with this gene and its typical presentation. Being rare means sometimes the answer doesn’t mean much. It means I have found five other children with the same gene as a cause for their epilepsy and other battles. Just five, hopefully many more will come. It means there isn’t a foundation we can turn to for answers, resources or education. It means we know more about this than almost anyone. CACNA1A. It was first recognized as an epilepsy-causing gene in 2015. We happened to catch it on Jacob’s third genetic epilepsy panel. Next is whole exome sequencing. While rare disease often means a lot of hurdles and many difficult days, it also means we are given a voice. Being the mother to this little warrior and his sister has given me more self-confidence than anything else in my life ever has. I had to stand up and fight for him, which showed me it’s OK to stand up and fight for me, too. When no treatments worked for his seizures, we found new ones. When I saw things I would like to see changed at our hospital, I joined the family advisory council. And there’s no current resources for our genetic mutation? Maybe I will just have to create them. I will tell you one thing I know. If you’re open to it, rare disease will lead the most amazing and wonderful people into your life. It’s a tribe of friends, fellow moms, therapists, teachers, nurses and doctors. And they genuinely care about Jacob and our family. Rare disease doesn’t have to be a tragedy. Yes, it’s a very, very stressful life, but I would never change it. Jacob has brought many more blessings than burdens, more joy than sadness. He has taught us many lessons. He has made us more kind. We want to hear your story. Become a Mighty contributor here .

Kari Olavson

What Raising a Son With a Rare Disease Means to My Family

Being rare means many things. Often, you don’t start out rare. You are tossed in the bucket with everyone who experiences your symptom. I recently read a quote from a friend that I had to stop and reflect on. It has popped into my head repeatedly since that day. “If you hear hoofbeats, assume horses, not zebras.” Doctors and health professionals seem to be taught to think this way in diagnosing and treating illness. And why wouldn’t they be? But sometimes, it is a zebra. My son, Jacob, is rare. In the beginning, seizures were our battle. They began when he was born and have continued to this day. At first, his neurologist believed we would resolve and control these seizures and life would go on. Then it became apparent the seizures weren’t backing down. This led to the first round of genetic testing. Negative result. He suffered from infantile spasms at one point. They’re a harsh, awful and stubborn cluster of seizures that usually present around age 1. This gave us a clue — a hint of a bigger picture. Infantile spasms are also rare, and only a unique subgroup experience them. Rare means lack of answers, and when the answers start to show their faces, they often are so specific, you still can’t relate to anyone, so it means feeling alone. I’m thankful that many of Jacob’s doctors listen and are open to suggestions and new ideas. A special needs mom with the internet at her fingertips does better research than the FBI. If I find something concrete that I truly believe could help, I share it. But I didn’t always do that. I had to build up confidence and realize that if Jacob is as rare as he seems to be, my husband, Kirk, and I are part of a handful of experts on his specific disease just because we’re his parents. Being rare means that people will learn from you. It’s not all bad. Yes, being rare is difficult, but it presents us with an opportunity to educate our peers, especially when we see another family swirling around in the pool of some seizure disorder or a developmental delay, and we can reach in and help them find answers because of the path we took to get here. It also means, sometimes, doctors don’t want to take responsibility for you. They become intimidated by how complex our world is and run screaming. Here’s an example: Jacob had a seizure and vomited after. This happened three times. I called the neurologist who said, “Sorry, that seems like a problem his gastroenterologist should deal with.” Then I called the GI doctor who said, “Oh, Mrs. Olavson, that seems like something the neurologist should deal with.” I called the neurologist again who said, “Well, what do you think we should do?” Me? I’m not a doctor! I’m just the resident “Jacob” expert. Then one day you get an answer. One little letter, on one little gene. An “A” that was supposed to be a “G”. That’s it. Because of the path genetic testing is on, people will no longer wait like we did. I spent five years worrying he had a birth injury or I caused it by taking an antidepressant while pregnant. Now, I know it’s something so small, by comparison, it’s more catastrophic to my son’s body than a nuclear bomb is to the earth. We recently received news that my husband also has the same mutation. My boys are part of .007 percent of the population. I believe that number will grow. We also learned that this gene mutation is always destructive. But that’s another thing I believe will change with time. Genetics in general are still in their infancy. For now, this means searching for whatever else ails Jacob because there must be something more. Kirk doesn’t have seizures, but he has a family history that lines up with this gene and its typical presentation. Being rare means sometimes the answer doesn’t mean much. It means I have found five other children with the same gene as a cause for their epilepsy and other battles. Just five, hopefully many more will come. It means there isn’t a foundation we can turn to for answers, resources or education. It means we know more about this than almost anyone. CACNA1A. It was first recognized as an epilepsy-causing gene in 2015. We happened to catch it on Jacob’s third genetic epilepsy panel. Next is whole exome sequencing. While rare disease often means a lot of hurdles and many difficult days, it also means we are given a voice. Being the mother to this little warrior and his sister has given me more self-confidence than anything else in my life ever has. I had to stand up and fight for him, which showed me it’s OK to stand up and fight for me, too. When no treatments worked for his seizures, we found new ones. When I saw things I would like to see changed at our hospital, I joined the family advisory council. And there’s no current resources for our genetic mutation? Maybe I will just have to create them. I will tell you one thing I know. If you’re open to it, rare disease will lead the most amazing and wonderful people into your life. It’s a tribe of friends, fellow moms, therapists, teachers, nurses and doctors. And they genuinely care about Jacob and our family. Rare disease doesn’t have to be a tragedy. Yes, it’s a very, very stressful life, but I would never change it. Jacob has brought many more blessings than burdens, more joy than sadness. He has taught us many lessons. He has made us more kind. We want to hear your story. Become a Mighty contributor here .

Kari Olavson

What Our Mornings Are Like for Our Son With Complex Medical Needs

Recently, we had a shift in nurses, and the one who filled all of our daytime hours went down to minimal part-time. I know this will be a constant occurrence in our lives. There will always be changes. It’s very, very awkward and sometimes difficult to get used to someone being in our home. We have the mild comfort of knowing they passed a background check and have some medical knowledge, but they are still a stranger, and we are forced to be professional in our own home, which is extremely difficult when I am beyond exhausted and have already answered far too many medical questions for the day. During this shift in our nurses, we were without any daytime nursing help for the better part of two weeks. The way our home works is, I stay home and take care of keeping up the house, appointments and taking care of the kids. My husband works out of the home; he works second shift, evening hours. When he’s done, he comes home and helps me. Our work is never over. When we don’t have a night nurse, we don’t really sleep. We take shifts. If I had to estimate, I would say my husband and I sleep in the same bed three nights a week, and for only about four or five hours. We have Jacob, who is almost 6. He uses a wheelchair. He has cerebral palsy and epilepsy. He is also dependent on a trach and a g/j-tube. He uses a ventilator when he sleeps for breathing support. And then we have Elsa. She’s 2. I think that explains enough. Have you ever met a 2-year-old? Jacob uses a ventilator for bi-PAP support when he sleeps. This means he needs eyes on him all the time. When Jacob needs to be admitted to the hospital, he goes to the PICU (Pediatric Intensive Care Unit). When you think about it, that means we run an intensive care unit in our home every day. So, I thought I would share how a typical morning goes at our house: 9 a.m. Jacob is alert and awake and does not need oxygen this morning, so I disconnect his vent from his trach tube and turn off the Trilogy ventilator. I replace the vent with an HME (Humidity and Moisture Exchanger). Our mouths and noses make humidity for us, trach tubes don’t do it on their own, so this protects Jacob’s lungs while giving him the humidity he needs. 10:00 a.m. Time for morning routines to begin. First, I collect the six medications he will be getting this morning. I also grab a large syringe to fill with water to flush his meds through his feeding tube. Six meds and 40mL of water is too much to put through his j-tube at once, I give three meds and 20mL of the water through the medication port on his feeding tube. 10:05 a.m. I slide his wrap vest under his back, make sure it’s snug and connect the tubing to his vest machine. I push the proper buttons, and the machine begins to shake Jacob. It shakes up his lungs for 10 minutes — this prevents anything from settling in his lungs. After this, I prepare a nebulizer treatment. I step to the other side of Jacob’s bed and connect the nebulizer cup to his ventilator tubing. I turn on the vent, heater pot, and nebulizer machine and reconnect it to Jacob’s trach. After some time, we have perfected what we do and how we do it for Jacob. Strict routine has proven to be the best method. There are times when we wait to do certain things if he’s sleeping or we have an appointment. But, we always try our best to follow this process. I should also note that each of us who care for Jacob have our own way of doing his routines. They are all very similar, but Dad might brush his teeth before doing trach cares, when Mom does it the other way. While keeping Jacob safe, we try to remember it’s OK to put love in everything… our home is not a hospital. 10:15 a.m. The vest has finished its cycle and so has the neb, so I slide the vest off and disconnect and turn off all the machines. Now it’s time for cough assist. The cough assist machine also connects to his trach. This machine simulates the dramatic inhale and exhale of a cough. You and I cough all day long and don’t realize it. We constantly use our lungs to capacity. Jacob’s low muscle tone doesn’t let him do that, so we do it for him. I turn on the machine, connect it to Jacob’s trach, and push “therapy.” It goes inhale, exhale, break, inhale, exhale, break; I count five cycles, then pause the machine and disconnect it from Jacob’s trach. We do this process twice on days he is well. 10:20 a.m. I give Jacob two puffs of his inhaler. We use a chamber, I puff it into the chamber, and he can use as many breaths as he needs to get the medicine out. Sometimes, he will suck in a big breath, but today I count a few before giving the second puff. 10:25 a.m. I give Jacob the other three meds and remaining water through his j-tube. 10:30 a.m. I set up a station with two Dixie cups, one with acetic acid (vinegar) and one with sterile water. I open cotton-tipped applicators and place four in each cup. I locate a 2×2 split gauze and a clean or new trach tie. I’m ready to do trach cares. I use one of Jake’s plush Ninja Turtles under his neck to rock his head back a little and remove the old gauze. I take the cotton-tipped applicators and clean, then rinse, around his trach. I use a gauze to dab the area dry, then tuck another neatly around his trach tube. I unfasten his current trach tie and replace it, one side at a time, very careful not to pull his trach out. I lift his shoulders and tuck him into my chest to free my hands and fasten the trach ties at the back of his neck. He always wiggles; he thinks it’s funny. We’ve been working on “hugs” this way. Sometimes, we have to adjust the ties a few times to get it just right. 10:40 a.m. I put some mildly minty mouthwash (say that three times fast!) into another Dixie cup. I take his toothbrush and tongue scraper and dip them into it and brush his teeth, then clean his tongue. He understands and opens his mouth to make it easier, unless he wants to be a stinker that day. He usually has his mouth open which makes the flora of his mouth very different from most. We have found this routine works really well for him if we do it twice every day. 10:45 a.m. Get dressed and ready for the day! After this is a little clean up, the trach care station, putting the used syringes in their container to be washed and used again, washing his toothbrush and tongue scraper, etc. All in all, it takes about an hour. This is when Jacob is well. When he is ill, this routine extends with more breathing treatments and nebulizers. And we do it all four times daily instead of two. Sick routines are nothing short of exhausting when we do it on our own. This is our routine, Jacob’s unique morning practice that works perfectly, just for him. We do it at 10 because my husband and I have never been morning people. Jacob gets doses of meds seven times per day; sometimes there are many medications, sometimes just one or two. When we don’t have a nurse, this is our responsibility, but, one of us needs to work. That responsibility falls on my husband, and this one usually falls on me. Not because it’s the traditional way to do things, but because it financially works best for us. Don’t get me wrong, he does it on his own quite often also. I always make sure to have my coffee in by meds time, because, don’t forget…. we also have a 2-year-old! Editor’s note: This is based off an individual’s experience and should not be taken as medical advice. Please see a doctor before starting any type of medical routine. We want to hear your story. Become a Mighty contributor here .

Kari Olavson

What to Expect After Your Child's Tracheostomy

A little over a year ago on, May 13th 2015, my son had a tracheostomy. He was four and we had really been through the ringer with respiratory illnesses that whole year. He has epilepsy, low muscle tone, cerebral palsy and a slew of other battles. A tracheostomy, or a tube in the trachea to help with breathing difficulties, was brought up six months before we finally agreed to it, and my son’s pulmonologist asked me, “If you ever come up with what to say to parents to make this decision easier, please share it with me.” Well, I didn’t figure that out, but I did reflect on what the last year has given our family and how much I would urge others to really try to see the benefits of a trach if it is brought up as an option to make their loved one’s life easier. I wrote a letter to myself; it was the best way I could think to show what has changed and how we have grown. My son nearly died from pneumonia and pseudomonas a month before we made the decision. We spent more than a hundred days in the hospital the year prior to having the tracheotomy. He had to get to that point before we gave in. I believe we made the right decision for him, at the right time. We had the guidance of amazing doctors and nurses who sat with us and discussed every detail and answered every question we had. That helped so much. It really was the hardest decision we’ve made so far, and we have made many. It shouldn’t have been the hardest, but it’s very hard to see that when looking in from the outside. It was worth it. It was worth facing our fears as parents for one more chance. To the mom I was before the tracheostomy, I know this decision will sit with you as one of the most difficult ones you ever have to make. You are choosing to have a hole surgically placed in your child’s neck and neither of you will ever be the same. But, it is going to be OK. You are so much stronger than you give yourself credit for. You have tackled everything up to this, and you will dominate this challenge too. I recall the thoughts you are having. Will it be scary? Does the good outweigh the pain of surgery and recovery? Are we unnecessarily prolonging his struggle? Is it going to be strange to see something around his neck all the time?(This sounds so vain when I read it, but it’s how I truthfully felt at the time.) How will I learn all this new information? Will people stare?  …and on and on. It’s OK to be worried, but life is going to get immensely easier. This is a quick surgery. It takes about 45 minutes when it goes to plan. You will be able to see his face again. Always. No tubes, wires, Bi-pap masks — nothing will ever have to be taped to his face again. This could not be predicted, but it has been one year and he has not gotten pneumonia. That is a miracle after nearly losing him so many times to that pesky illness. You will be tired for a while. You’re going to be overwhelmed with nurse schedules and supply orders at first, but like anything, you will adjust. Training will seem intense and scary, but once you change that trach the first time, it will only get easier. You can do this. You really can. Don’t doubt yourself. Other mothers and fathers have done this. My shaking hands were the first ones to change Jake’s trach after the initial change. I did it. The sense of empowerment knowing what I could now do for my son was overwhelming. I could give him an airway. When he gets sick now and secretions are heavy, and he’s working hard to breathe, it’s a simple matter of turning on a few machines and running a few nebulizers. At the worst, changing his trach. We stay home now. We go to school now. We go to restaurants and the mall. We don’t hide anymore. Because of his trach, Jacob gets to live his life and you get to live yours. The word “trach” is scary, but only when you’re on the outside. To families like ours, the word trach is refuge, freedom, strength and endurance. It means pneumonia doesn’t have to win. It gives us the home field advantage. A year ago, I felt like a trach was a horror movie I wanted to hide my eyes from, and I was spending so much time at the hospital with Jake, it became comfortable to be there. Today, as I listen to his nurse do his routines and get him ready for bed, I am comforted that he is home. We have control, and we can see his whole face, all the time! I know it is a hard decision, but you are making the right choice and I’m proud of you. When they tell you life will be easier, believe them — even if it gets a little harder first. Sincerely,A one-year veteran trach-mama