Adrenaline Hangover

When Michael woke up with a fever and sore throat last Monday, I assumed it was strep throat. This kid can get strep just by thinking about it. So when we went to the pediatrician later that day and they asked if they should test for both strep and COVID, I said yes to both. Strep because I was certain that he had it. COVID because I wanted to be cautious and seemed sensible.

Ten minutes later the pediatrician walked into the room with a pulse oximeter and I knew, without her saying a word, that Michael was positive for COVID.

Adrenaline immediately kicked in as my mind spiraled through the checklist of things to do. Get Michael home and into isolation in his room. Get his BiPap on and continue to monitor his oxygen levels. Call Tim (who was at work). Get Peter from school. Call Michael’s school. Message Cure CMD (our patient advocacy group) to get latest advice. Talk to the school district’s nurse about Peter. Call Michael’s neurologist and pulmonologist and make a plan if he needs to go to the hospital. Get the rest of us tested (can we even find a rapid test?). Text work and let them know I was taking the rest of the day off. Talk to the school district’s nurse about Michael. Call or text everyone we saw over the weekend (Ugh. Why did we see people?!). Talk to the city health department. Clean and sanitize the entire house. Move Peter’s bed to a spare room (the boys share a room). Text family and ask for prayers. Post on social media and ask for prayers. Oh, and remind myself to breathe.

This is my “go” mode, a crisis mode I have perfected over the years. In it, I’m able to set aside emotion and spring into action, relying on adrenaline to propel me. Blinders engage, and I am only focused on the task at hand. I usually stay in “go” mode until I feel the acute danger is gone. In this case, that didn’t happen until Friday when Michael had gone 24 hours without a fever and it seemed that the risk of serious respiratory issues was over.

Then I crash. My body becomes exhausted when it experiences high and sustained levels of adrenaline. I no longer have energy to do anything. I can’t concentrate on much for very long. I just want to sleep. I called it an adrenaline hangover. I’ve wonder if this is how everyone respond to situations like this or if my body’s reaction is due to the hum of anxiety I operate with on a normal day. Or that the crash is related to my proclivity for depression. Who knows and, frankly, who cares? The cycle for me is unavoidable. I’ve learned to give myself time to rest, heal, and reflect when this happens. So that’s what this weekend has been about. That’s what this blog is about.

We knew the risk in sending Michael (who is not old enough to be vaccinated) back to school this fall. We felt the risk outweighed his mental health need of being around his friends and peers again. We also felt the precautions that our school district is taking would (hopefully) prevent him from getting COVID. We made it five and a half weeks before Michael caught it, most likely at school as positive cases have spiked in this grade. Best laid plans . . . .

As a Rare Mom, I have learned that the only certainty we have in life is uncertainty (see my last post, The Beauty of a Sick Plan), so as I reflect on this past week, I’m focusing on what I know for sure.

  • Our faith sustains us. Our family sees God working through prayer, people, science, medical innovation, and so many other ways. God’s love for us is revealed by His people.
  • We have a wonderful support network that will respond with a simple ask. Neighbors and friends offered grocery deliveries, meals, lattes, ice cream, and even houses. Our families checked in, offered to come and help, and sent cards and gifts for Michael. Prayers and support were felt from far and wide.
  • Our medical team is strong, including our pediatrician, the boys’ specialists at Children’s of WI, the Cure CMD community, clinicians, and researchers, NIH researchers, and the vast medical network that has made it possible for families like ours to survive this pandemic.
  • We will continue to do all we can to keep our family healthy and safe, but in the end there is no rhyme or reason for who gets sick and who doesn’t despite our best efforts. The rest of our family (who are vaccinated) have remained healthy and negative. Another CMD family we know had COVID recently, and everyone was positive (including two vaccinated adults) except for their young daughter with CMD. Several seemingly healthy friends around my age were diagnosed with cancer in the past few months with varying prognoses. Rare disease shows up in any family at any time. This truth may seem to offer little comfort, but it makes me thankful for every healthy day we have. I’m more likely to remain present instead of wasting my time on the unanswerable “Why?” question.

A week into it, Michael is on the upswing. He’s been fever free for several days, and his oxygen levels have remained in the upper 90s the entire time. He’s still very stuffy and congested, which is annoying but treatable. His isolation ends in a few days but he’s been spending some time outside to relieve some of the boredom. We are aware that there can be ongoing effects of COVID in children so we know we aren’t out of the woods yet. We remain hopeful that we are past the worst of it.

It’s been a hell of a week. Now, if you’ll excuse me, I’m going to go nurse my hangover.

Michael lays in bed with headphones on. He is smiling at the camera and giving a thumbs up. Our orange and white cat, Ellie, is laying on Michael's pillow by his head.

The Beauty of a Sick Plan

I love a good plan. Several spreadsheets are required when I plan an event or when I was planning concerts as a music teacher. When I have a big project to accomplish, I break it down into manageable steps with due dates along the way. Checklists and To-Do lists are tools I use daily in my work and personal life. Organization is one of my innate talents.

With any good plan, though, you have to have several back up plans. Early in my teaching career, I learned that flexibility is crucial. You have to be able to pivot mid-lesson depending on a wide array of variables such as a class that gets the concept right away, a fire drill in the middle of class, or even a bee that has made its way into the classroom. An unexpected event is always around the corner.

My ability to plan and simultaneously be flexible has served me well as a mom to two boys with Congenital Muscular Dystrophy (CMD). Although they are not immonocompromised, we expect our boys to get sick especially during cold Wisconsin winters. A common cold can easily and quickly morph into pneumonia, so we are in the doctor’s office at the first sign of illness. Every time we visit their pulmonologist for a check up, we make and/or revise their sick plan, that is, a protocol we follow when they encounter any sort of illness. Of course we make sick plans hoping that we don’t have to use them, but I feel so much more at ease knowing we have one.

A few examples:

  • They have a cough that has descended into the lungs? We increase the use of their cough assist machine and ask the pediatrician for a chest x-ray.
  • The youngest complains of a sore throat? We immediately go to the doctor for a strep throat test.
  • Their cold is making it hard to breathe? We bring out the albuterol inhaler, use a saline spray for their nose, and increase the use of their BiPap.

One of a reasons we felt comfortable sending the boys back to school this fall is we now have a COVID sick plan. This protocol for those affected by CMD was created by Cure CMD (our patient organization) and neuromuscular disease researchers at the National Institutes of Health (NIH). A year and a half into this pandemic, we have a much better idea of how COVID may and can affect those with CMD. Thank goodness.

Over the years, I’ve decided living life with a contingency plan is a good way to live all of my life. Bad things will happen. No one is exempt. Better to plan for the unexpected than to believe all of life with be rainbows and kittens.

I’ll always love a good plan but my expectations have changed over the years. Now I can scrap a good plan with a moment’s notice and not think twice about it. I’m learning. . .

Black lettering that says "Pray for the best, prepare for the worst, and expect the unexpected." Gary Busey

An Unexpected Journey

Today, Tim and I celebrate 18 years of marriage. Below is an essay I wrote a few months ago and describes the beginnings of our journey. Here’s to many more years together!

When anyone asks, I always say, “From met to married in only nine months.” I usually get one of two reactions: shock and disbelief or a head nod and their own story of a fast romance. Eighteen years later, it’s easy to say, “well, that all worked out”, but the whole thing was unlikely from the start.

First of all, we were set up on our first date, a blind date, by my mother and Tim’s landlord, Carol. They were having coffee at the local coffee shop in my small hometown when Tim came in for a cup. As she describes it, the thought just came into Carol’s head. The next day Carol sent her husband up to Tim’s apartment to procure his email address and permission to exchange it with mine. My mom followed suit.

We lived in different states. Different time zones, in fact. Tim in Wisconsin with plans to move to the northwoods of Minnesota, and I in Utah. We arranged our first date while I was home in northern Wisconsin for Christmas. The date started with a hike in a local state park, which led to coffee, which led to dinner, turning into a seven hour first date.  

After the successful first date and subsequent coffee date a few days later, I went back to Utah to finish teaching the remainder of the school year. Mind you, the year was 2003, and I had a flip phone with limited minutes. No Skype. No Facetime. No Zoom. Mostly we used a prepaid calling card for our long phone conversations, exchanged daily emails, and even wrote handwritten letters.  

Tim flew out to Utah for my spring break in April. We went camping in Arches National Park for a few days and spent time hiking around Salt Lake City where I lived. By the end of the week, Tim proposed in the middle of Liberty Park. I had not met any of his family (including his parents) except for his youngest sister and her husband. Tim had only met my parents and youngest brother who still lived at home. Two days after I said yes, Tim got on a plane back to Minnesota. 

We knew we would get married in Amery, my hometown, so I began planning a September wedding from Utah. Also I had a few months of a school year to teach and a road trip to go on with my newly appointed maid of honor. It was July before I moved back in with my parents. By that time of summer, Tim was deep into the summer camping season in northern Minnesota so I went up to visit for a month.

Whew! Finally, on September 21, we managed to get everyone to Amery for a wedding (though my maid of honor almost didn’t make it because of a hurricane in North Carolina where she lived). Our honeymoon was a week in Door County, a quiet place for newlyweds who had not yet lived in the same state to get to know each other.

Some people thought I shouldn’t get married so quickly after meeting Tim, especially since I was only 23 years old. I always felt, though, that I would not date or be engaged for long once I found the right person. Sitting across from Tim at the restaurant on our first date, the first spark flew when I noticed how cute he was. Long talks on the phone and the precious time we had together in person confirmed that he was the person for me. 

In Tim, I discovered a loving, supportive, patient, steady, and adventurous dreamer. These attributes have contributed to our family’s success as we navigated significant challenges: a long diagnostic journey for our boys, becoming a rare disease family, personal and family health issues, the death of Tim’s mother, a year (plus!) of pandemic, and major surgery for our son.    

A few months ago my therapist mentioned that the extreme togetherness of the past year and a half has helped many couples realize that their marriage or relationship is over. I have realized the opposite. Marriage is hard. Marriage affected by a rare disease is complex. I would choose this journey with Tim every single time. 

How Much? How Little?

Each fall, I email my sons’ teachers to give an overview of their Congenital Muscular Dystrophy (CMD). I explain the differences they can expect to see in their abilities, their need to take breaks and rest, and our parental expectation that they try everything. I ask the teachers to inform us of any changes they may see over the course of the school year and any problems in their ability to participate in classroom activities. I invite them to be part of our team. Then, throughout the year I volunteer in their classrooms and establish relationships with their teachers. I participate in PTA and, until recently, co-chaired a committee that organized a major school event. My regular presence at school and starting an open dialogue with teachers has worked for us. 

Our success can partly be attributed to the public school district where we live. The leadership has made it plain that they care about creating an inclusive and accessible education for all. A lofty goal to be sure; one that I’m sure isn’t always reached. However our requests for accommodations have always been responded to quickly. A letter from their neurologist to the district nurse is all that is needed to establish a Individual Health Plan (IHP) for our boys. (An IHP is a formal agreement that outlines the student’s medicals needs and a plan for addressing those needs. An IHP is used when needs do not impact student learning.) My regular contact with teachers serves to reinforce the IHP and ensure their needs are being met. We are very fortunate that this process has been fairly easy for us.

Two weeks ago our oldest started high school, and I found myself hesitating to email his teachers. I want Peter to get the accommodations he needs but I also loathe helicopter parents. I was a teacher for 17 years, and I have been on the other side of that table. I decided against emailing his teachers. Instead, we discussed the details of his IHP so he was clear on what allowances he can have. My husband and I told him that we are happy to talk to any of his teachers about his needs but would only do so if he asked us to. Peter agreed to this plan and we felt good giving him this responsibility. High school seemed like a good “practice run” for life after he graduates.

Those in the disability world know that our society has not been created for people who are differently abled. People with disabilities have to ask and sometimes fight for equal access to things that non-disabled people take for granted. Someday my sons may need to advocate for themselves with a professor, an employer, a business owner, a church, or so many other societal systems that don’t consider their unique needs. I know the world will not treat them fairly. I am certain of it. So what can we do to equip our sons for their particular life path? 

Maybe these are questions all parents ask as their children grow and become more independent. I don’t have children unaffected by CMD so I don’t have any perspective on that. Though I suspect they do ask these questions, but maybe in different ways. 

Sending my children into an unknown world makes me anxious. Have we done enough? Have we given them the tools they need to be an advocate for themselves? At the same time, I know they have already encountered difficult things in their short time on earth which has given them strength and resilience.

Maybe they will be OK? 

A person walks through a maze created by manicured bushes that are bright green.

The Asterisk

About a month ago, I contacted the boys’ pediatrician to get her advice about sending them back to school this fall since our youngest is not old enough to be vaccinated. Her nurse responded that they recommend all kids to attend school in person this fall unless they are high risk. Since our boys fall into the high risk category, she told me to contact their specialists.

This past spring, an acquaintance (and pediatrician) ranted on social media that all kids should be back in school immediately since they were less affected by COVID-19 (this was before the Delta variant) and their mental heath was suffering. I pointed out to him that we had chosen to keep our boys home for the entire year, because though their mental health was suffering, we didn’t feel we could risk their physical health. He told me we were a unique situation and he was speaking for the majority of children.

Early in the pandemic, when many states had enforced lockdowns, someone posted a meme on social media that said people who wanted to could stay home to protect themselves from the virus. It’s a free country, it said, and we have the right to choose self quarantine. I explained that it didn’t feel like a choice or freedom to stay home for us. I didn’t get a response.

The pandemic has made our family and others like us feel like a constant exception. The asterisk to the general rule. One of the things that’s not like the others. A small minority.

A herd of white sheep standing on a road face the camera. A white dog is hidden between the center sheep.

This feeling isn’t new for us. Rare Disease families and people with disabilities have experienced this “otherness” for a long time, way before the global pandemic.

It’s felt when a highly rated restaurant isn’t accessible so a person who uses a wheelchair can’t enjoy a nice dinner with friends.

It’s felt when parents are told their child isn’t welcome at a school, because they couldn’t possibly provide for the child’s needs.

It’s felt when an employer won’t hire a qualified, talented, and hard working person who happens to have a disability, because they think the person will be a liability.

It’s felt when a church refuses to enforce any precautions against COVID-19 and doesn’t offer a virtual option so the family whose child recently had a kidney transplant can’t participate in a faith community that is important to them.

I understand the inclination to make decisions based on the majority. But consider this:

Add people who are affected to common diseases such as heart disease or certain types of cancer and the group of people who can be considered “high risk” doesn’t seems so small anymore. Perhaps we need to stop thinking about these groups as anomalies and recognize the needs are greater than we can see from our limited view.

Ultimately I hope you remember that these “exceptions” are people, families, human beings who are worthy of everything life has to offer. They don’t need or want to be pitied. They just want an opportunity to participate as a full member of society.

Our family has decided to venture out into the world again. The boys will be attending in person school. My husband and I are going back to the office. Not because the boys are no longer at risk for COVID, but because we cannot lock ourselves in our house forever. We are, of course, nervous about this decision but we will do our best to mitigate their risk of infection.

If I’ve learned anything in the past year and a half, it is this: I cannot depend on most people to protect the health and well being of my children. It’s a horribly cynical way to live but here we are.

Blue lettering on a white background says, "Abeism. Academic Definition: Ableism is a form of discrimination or prejudice against individuals with physical, mental, or developmental disabilities that is characterized by the belief that these individuals need to be fixed or cannot function as full members of society (Castaneda & Peters, 2000).

The Pit

First, an update on Peter. We had the final post-op appointment and x-rays recently, and the surgeon felt good about everything. The x-rays looked good, and Peter doesn’t have any persistent issues that aren’t normal and expected. Peter goes to weekly PT at Children’s and has daily exercises in between appointments.

Slowly we are seeing his strength return to pre-surgery levels, and he is learning to do things differently now that he has two metal rods in his back. He was able to pick something up off of the floor yesterday which is a huge milestone. He does tire easily though (more than before) so frequent breaks are necessary for all of activities. Not that we are doing much these days. #COVID

Peter (and our younger son, Michael) will return to in person school this year so we are focused now on making sure his transition to high school (!) goes well. He will need to re-acclimate to being in school with his classmates, while also adjusting to more physical activity after a major surgery. As always, we are grateful for your prayers and healing thoughts. We’ll take more if you got ’em.

A photo of a character named the Albino from the movie The Princess Bride. White text says, "Welcome to the pit of despair."

I’ve been a bit quiet lately on this blog and on social media, because I’ve been spending some time in the Pit (see this post for a glimpse into the Pit). When this happens, I find I need to turn inward and take extra care of myself and my people. Weeks later, I’m slowly clawing my way out.

I fall into the Pit for many reasons but this time can be summed up in one word: trauma.

As a parent of a medically complex child, you watch your child go through unimaginable pain, frustrations, and challenges on a regular basis. You also sit by their bedside when they experience a medical crisis. In both situations, there is almost NOTHING YOU CAN DO. Your body responds with adrenaline and anxiety, ready to fight, but most times all you can do is call for the doctor and watch.

For example, Peter was immediately put on a ventilator after being extubated post-surgery. We knew this would happen. On a good day, Peter needs a machine to help him breathe when he sleeps, so he definitely needed breathing assistance after anesthesia. A few hours post-surgery, Peter’s oxygen levels dropped into the 70s four times in rapid succession (above 90 is a good range for Peter). I panicked. My worst fear going into the surgery was his breathing and its precariousness. At that moment, my worst fear was being realized. Being on an unfamiliar machine, I couldn’t do anything to help. The respiratory therapist rushed in adjusted his settings, and within ten minutes Peter was breathing normally again. After that, I watched his oxygen levels like a hawk. Thankfully we didn’t experience anything like this incident for the rest of his ICU stay.

I have not been short on traumatic events lately. The weight of surgery was enormous and preparing for it was a full time job. The week in the ICU, while expected, was exhausting. Add in a long pandemic year with two high risk children, school and work at home, hurtful rhetoric from friends and family, an ill dog that had to be put down, and . . . and. . .

It’s no wonder I crashed. And crashed hard.

Normally my mental illness manifests itself in anxiety. Even in normal times I feel a constant hum of anxiety. However anxiety’s terrible partner depression shows up in the crash and leads me down into the Pit. I’ve been in the Pit before, and I’ll be there again but this time was particularly bad. I was constantly tired even though I was sleeping more than usual. I didn’t have energy to go for a walk. I couldn’t complete simple tasks like writing a three sentence email without typos and incorrect wording. I had to re-read everything three times before hitting send to make sure the message was coherent. Showering seemed like a lot of work.

Turns out, even without my diagnosis anxiety and depression, the affects of trauma is common among parents of medically complex children. In fact, some experience Post Traumatic Stress Disorder (PTSD).

On a recent episode of the podcast Once Upon A Gene, psychologist (and Rare Dad) Al Freedman spoke about the topic of mental health in this cohort of parents. We can feel crazy for reacting in extreme ways when our children are sick or struggling, but he said that our reactions are a normal human reaction to a very crazy situation. He spoke about how every year his family brings Thanksgiving Dinner to the PICU where his son spent many nights as a child. Dr. Freedman said he loved seeing everyone but is always anxious to leave. The PICU has too many difficult memories for him and being there triggers the emotions he felt when sitting with his son who was fighting for his life.

So parents, be gentle with yourself after your child’s medical crisis. Know that feeling grief, sadness, anxiety, depression, and a myriad of emotions is normal. You are allowed to feel them. These feelings may never go away especially if traumatic events with your child continue, but there are people and treatments that can help. Asking for help is HARD. SO HARD. I give you permission to pause, even for a moment, to take care of yourself. Most importantly, you are not alone.

One Month Post-Surgery

Last week Thursday marked four weeks since Peter’s spinal fusion surgery. While we are still two weeks from his first postoperative appointment, it appears that the surgery has been successful. Peter continues to gain strength each day and is largely pain free. He has a lot of work ahead of him, but we are grateful that the surgery is now in the rearview mirror. 

Thank you for your support over the last several weeks and months. Thank you for the cards, messages of encouragement, meals, dog walks, thoughtful gifts, and prayer. We truly are blessed by your encouragement and gracious acts of kindness. 

Over the 4th of July weekend we were able to get out of the house and snap a photo to share with you. The mural is on North Ave, about a mile from our home. We liked the message, and Peter may have taken the message literally – he came out of the surgery about an inch and a half taller than when he went in. 

We hope you are enjoying your summer. We will certainly be enjoying the remainder of ours. Thanks again for being with us during this part of our journey.

With great appreciation,

The Knutsons

The four of us stand next to a mural painted on the side of a brick building. The background is shades of green and the white lettering says, "Grow Through What You Go Through."

Where Do We Go From Here?

Shortly after my dear mother-in-law died of ovarian cancer in 2017, I looked around and wondered how people could just keep living their lives. They were all going to work, taking care of their kids, going to soccer games, and doing yard work like nothing had happened. How was it possible? How could they just go on like normal? Didn’t they know that the world was less brilliant? That the world shifted and will never be the same? If you have lost someone, then you are probably shaking your head and thinking, “Same.”

Lately, I’ve been feeling this way again. The world (and not just my world) is changed. It was disrupted by pandemic, illness, loss, trauma, political unrest, hurtful rhetoric, and so much more. I once again look around and wonder how we can possibility return to the same way of life we led in the “before times”. At the very least, how can we return to some semblance of “normal” without taking a moment to process, examine, and work through all that we have experienced during the past year and a half?

Grief comes for so many reasons. It’s obvious when you lose someone you dearly love, but grief can also be felt for a lost school year, the lost security of a job, waning friendships, missed holidays with family, and intermittent social interactions. We all lost a lot this year. I’m thankful that people have stayed away to keep us safe this year but I’m realizing how lonely this is making me feel. Despite living in an urban area with people all around us, I feel isolated and disconnected.

I’m also feeling a little bit jealous. As people take trips, resume sports schedules, and visit friends they haven’t see in over a year, our family must remain home, as we have since March 2020, so our son can heal without the risk of any illness, including COVID. I’m not upset that you can resume your lives. I’m thrilled you can hug your parents or grandparents for the first time in what feels like forever. I’m glad your kids can head back to summer camps. However I’ve had to quit looking at social media because it hurts too much to see your smiling family out in the world again. I had to watch a video of my younger son’s 5th grade promotion from an ICU room where my older son recovered from spinal fusion surgery. My older son missed his 8th grade promotion. No fun summer camps for our boys or trips to our favorite museums. Vacations are not planned for this summer. Getting out on our boat may not happen for awhile.

When we found out in February that Peter would need surgery soon, I didn’t know how I was going to be able to cope. I wasn’t sure how I could add more anxiety and uncertainty onto the grief, jealously, and loneliness created by the pandemic and still survive. I have used every coping technique that has worked for me in the past and then some, but some days that has fallen short. Even now that we are past the surgery and well into the recovery period, my anxiety level refuses to come down to more normal levels. I feel like I have an adrenaline hangover.

Alas, this is the life you are promised when your child is affected by a rare disease that has no treatments and no cure. Grief is a part of the package deal. Not just during a pandemic but always. You will miss out because you have to tend to a medical need or cost.

But wait?! Didn’t I just write last week about how grateful I am for our village and the support they have been giving us? Yep, and I AM extremely grateful. I can hold both grief and gratefulness in my heart at the same time. Surrounded by love and support and also utterly alone. Both/and. As the author Glennon Doyle says, “brutiful. Beautiful and brutal.” No black and white. Just lots and lots of gray.

Red background with black lettering that says, "Nothing about rare diseases is simple." -Elisabeth Grehl Breden


Peter is smiling at the camera. He is sitting in our boat which is on water. He is wearing a red life jacket.

Fourteen years ago today, this kid made me a Mom and, though I didn’t know it at the time, a Rare Mom. What a journey motherhood has been for me! Despite the challenges, I would choose to do it all over again in a heart beat.

Peter had a post-op appointment yesterday and had a good report. They removed the bandage from the incision on his back, because it is healing well. It is quite the scar! It rivals Grandpa Roger’s scars from his bypass surgery in length by almost double.

They were pleased that his pain level has been low. In fact, he’s only been taking Tylenol the past few days and not all the time. He has been experiencing numbness in his left thigh since the surgery. We were relieved to hear that this is normal because he spend so much time laying on his stomach during the surgery, and it should go away in a couple weeks.

Our goals going forward are eating more, getting the digestive system moving normally, and movement. His eating has improved but definitely not up to normal levels. He just couldn’t keep anything down until a couple days ago. He’s lost weight but not enough for us to be concerned. Thankfully, he (like all of us) put on a few extra pounds during COVID. Ha!

We start physical therapy next week, but we will continue to get him moving at home. He’s been out for short walks in the neighborhood and has successfully gone up and down the stairs to the second floor of our house several times. He’s relying less and less on us for balance and help when moving around the house.

All in all we are moving in the right direction. I have to remind myself that we aren’t even two weeks post surgery yet. It feels like it was over a month ago. For now, he continues to rest and recuperate.

Thank You!

“If one part suffers, every part suffers with it: if one part is honored, every part rejoices with it.”

I Corinthians 12:26

I have seen and felt this verse to my core the past two weeks. You have walked with us through Peter’s surgery and hospital stay. You have reached out with words of encouragement, prayers, and healing thoughts. You have checked in on us and made sure we had everything we needed. Now as we move into the home recovery stage, you are showing up at our door with food and to walk our dog. You are sending cards and well wishes. You are helping keep our younger son busy so we can focus on caring for Peter and ourselves. You have done so much.

I haven’t always been good at asking for help. I like control and to handle challenges on my own. Being a family affected by rare disease is teaching me that I cannot do it on my own. I’m learning to ask for specific help so I can be a caregiver. I’m learning to takes breaks and care for myself. In doing so, our family has received support from family, friends, and even strangers.

“Thank you” feels insufficient to express my gratitude to you for reading our updates and being present in whatever way you are able, but it’s all I’ve got. If you feel you haven’t been able to help, don’t worry. We will need more help in the future. Maybe even next week!

I hope our experience will help you keep your eyes peeled for the next family that needs your help. If we aren’t here to love and support each other, then what is the point?