It’s okay to not be okay.

On Saturday evening our family received heartbreaking news. My niece Scout was taken to the hospital with an aortic dissection. After many hours of medical procedures, Scout passed away in her parent’s arms. She was only 9 years old. 

Scout was a very special little girl. For those of you who know me, but don’t know Scout, Scout had a condition called Loeys-Dietz Syndrome, which affects the connective tissue throughout the body. My sister, Mandy, would sometimes say “could you tell me what part of the body isn’t connective tissue?” More and more is known about the condition every day, but so few people know about Loeys-Dietz that it is often described as being similar to Marfans syndrome which is a separate connective tissue disorder that most people are also unaware of. 

What this meant for Scout is that from the start of her life, that little girl had intensive surgeries, medical tests, and procedures. Everyone had to be very careful in the physical space around Scout. Even though I knew it well, my sister Mandy always reminded me that whenever I picked her daughter up: I always need to come down to Scout’s level and raise Scout up from below. This was because Mandy was never confident that even the minimal weight of Scout’s tiny person wasn’t so minimal that it wasn’t dangerous to lift Scout up from her shoulders. 

Before Scout was 5 years old, she had already spent a month at Johns Hopkins Hospital in Baltimore, with Mandy and Gabe beside her the entire time. 

But the special thing about Scout wasn’t her condition, it was her soul. Despite her frail body, from an early age Scout latched onto the spirit of her favorite animal, the lion. I don’t know if it was because the lion is the biggest and the strongest, I don’t know if it was because lions are majestic and fierce, but my favorite theory is that it is because lions are brave, and Scout was a brave little girl.  

Scout would sometimes travel with an exclusively all-lion suitcase full of stuffed animals. In fact, I remember a trip where Scout’s dad Gabe realized the suitcase had been left behind at a gas station. He & I drove through the dark and scoured every public inch of the gas station property (including rifling through the dumpster) only to leave empty-handed to return in the morning once the gas station opened. The suitcase was fine. It had been brought inside safely the previous day and all lions were accounted for, but the attendant refused to release it unless Gabe could verify to him the Bible verse that had been painted on the interior of the suitcase. (Apparently two grown men arriving with the knowledge that the suitcase was full of stuffed lions and only stuffed lions was not enough to prove legitimacy). 

Some people might view toting a suitcase full of only stuffed animals on a family trip to be extravagant, but that’s just a small thing Mandy & Gabe did to adapt to their situation. 

I remember from almost 10 years ago the day that Scout was born. I was underneath a car, fixing a flat tire on my supposedly pre-dawn newspaper route when Mandy called me to say that today was the day. Even after finishing the route, packing, and driving all the way to Tennessee, even after we navigated the labyrinth of corridors of Vanderbilt to find the maternity ward, even though it had been hours since Scout was born, Mandy and Gabe were still waiting for the nurses to bring Scout back to her so they could finally hold their precious little girl. 

The delays seemed to last an eternity, especially because it was eerily silent for a maternity ward. I vaguely remember seeing one other baby in the time we were visiting there, but I clearly remember that it was dark outside before Scout was brought back to them. 

We were all waiting down the hall while Mandy, Gabe and Scout were enjoying their first peaceful moments as a family together when we heard the unmistakable sound of an alarm. Despite what we all know about Scout’s medical condition, the alarm was not actually coming from their room. It was far too loud for that. Still, moments later we watched a nurse emerge from the central station and head straight for their door. 

But the alarm bells were not medical alarms. They were tornado sirens. 

We would soon find out that standard procedure at Vanderbilt during a tornado was to move all mothers from the maternity ward into the interior hallway and to take all newborns away into the NICU area. That nurse was coming to take Scout away. 

Gabe calmly but firmly said “no.” 

I can’t remember exactly what he said, but he told the nurse that it was not going to happen. His wife, my sister, had been waiting all day to hold that baby. “You can take Mandy into the NICU with all the other babies or you can leave Scout with her mother” he said, “but you are not taking this child away.” Gabe was refusing to separate Scout from Mandy. 

It was such a small protest at the time, but I was so proud of my brother-in-law. In an unusual way, I think it was an indication of how they all have lived their lives over the last 10 years. They all knew what normal was, they knew what “standard procedure” was, but it didn’t matter. The McCauley’s were going to politely say “no” and just do what was best for their family. 

Even though we are geographically the closest siblings, we haven’t been able to see Mandy, Gabe, Scout, & Ash nearly as much as we probably both should have. Travelling with Scout is always an ordeal. It’s always a risk. 

One day I happened to be passing through Tennessee for a trip and I realized that I had the chance to stop and see Mandy and her family if I just went a little bit out of my way. I was rude and presumptuous like a little brother can be, but I decided to wait until I got all the way to their long farmhouse driveway before I called them to ask if I could stop by. Whether or not I was an imposition, I will never know because they never even hinted that I would be an unwelcome interruption. They just greeted me with smiles and hugs and showed me around the beautiful patch of farmland they live on.  

Mandy suggested that we grab a couple chairs and take them outside and just talk for the short period I would be there. I remember that small visit very fondly but I also remember seeing something that made me very sad. Scout had a new wheelchair. Mandy explained that Scout wasn’t confined to the wheelchair, but it was going to be helpful in certain situations. Mandy might have said something to me in the weeks beforehand about it, but it was still a shock for me to see that chair in person. I did not want for Scout to need a wheelchair. I knew that Mandy did not want for Scout to need a wheelchair either, but she seemed at peace in that moment. 

When I was little, I knew that my sister Mandy was physically tough. As a skinny kindergartner, she was a towering teenager. I never forgot for a moment that even though she wore a dress (sometimes), she was a Jhoon Ree Tae Kwon Do black belt who relished the rare opportunities to show her skills outside of the dojo. Even though it seems impossible, I see that same fighting spirit in Scout. 

Even though the last decade has been hard, Mandy and Gabe have been so strong. They’ve been strong enough to handle an impossible situation with grace to spare. Even while they’ve had their struggles, they’ve done what I’ve continually failed to do, which is help others. As if it wasn’t hard enough to raise a family without special circumstances, they’ve cared for Scout and Ash while also being steadfast friends to others going through their own hardships. 

It’s going to be a few days before I can see them face to face, and there are so many things that I wish that I could say. Sometimes I wish I could open people up and write something important directly on their hearts, but that’s not how it works. If I could, I would I want to say to Mandy what she has often said to me. “It’s okay to not be okay.” 

That’s what she said to me when my son Henry spent a month in the hospital. That’s what she said to me when Graham spent two weeks. That’s what she said to me when Lauren had cancer. And she was right every time. 

When times are dark and you’re not sure how long they’re going to be that way, it’s okay to not be okay. I hope that Mandy, Gabe, and Ash all know that there’s a whole world full of people wanting to hold them up whenever they’re ready for us.  

“It’s okay to be sad sometimes. Little by little you’ll feel better again.” 

 If you are wanting to help the McCauleys out in their time of need, you might consider donating to the gofundme page that has been set up by their family and friends. 

“When I was a boy I used to think that strong meant having big muscles, great physical power; but the longer I live, the more I realize that real strength has much more to do with what is not seen. Real strength has to do with helping others.” – Fred Rogers

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17 comments on “It’s okay to not be okay.

  1. Thank you for sharing a special tribute to these special people!

  2. Susan Santos

    Moving tribute to a beautiful family.

  3. Thank you Jon. Well said.

  4. So sorry about all this Jon. I really am.

  5. Rachael Kingry Sereday

    LOVE your whole family since childhood. Been thinking and praying on this since I heard. It’s ok to not be ok.

  6. Barbara Brauch

    So beautifully said, so touching & terribly sad. So very sorry for you all.

  7. Thank you for sharing.

  8. Kate Jurgens

    We are holding you all so close. Scout was truly a wise old soul- knew it the first time I met her as an infant. She had a look in her eye similar to my daughter. We cherish the McCauley Clan and pray for those whose lives were touched by Scout. Your writing is a gift. Thank you for sharing. It is okay to not be okay.

  9. Rhonda,Brandon and Bob Crawford

    Thank you for your comforting post. So elegantly said. You and your sister and Scout are gifted in your words. We met your family at the first conference for LDS. Their little one, our 11 yr old. Kentucky neighbors. New syndrome, new diagnosis, new adventure…
    Our hearts ache for you all. Your family remains in Our prayers. Your so right! Its so ok to not feel ok! Esp. When ok is not your normal. God bless you all!

  10. Vicki Hale

    I am so sorry for your loss. Please know that family that you don’t know is deeply saddened by the passing of Scout. All of you are in the prayer of my family. I am Mickey Crabtree’s first cousin.

  11. Debora Logan

    I’ll follow what Vicki Hale says above. I don’t really know you but we are cousins…your dad is my first cousin as well. I met Scout once at a cemetery of another relative we had lost. She was such a sweet, beautiful little angel so indeed we grieve along with all of you. This tribute is so very touching and beautiful. You are blessed with such writing talent. We are keeping all of you in prayer…such a terrible loss. Love to all of you.

  12. Laura Powers

    I am a newer lover of the McCauleys, but a lover still. Your words will bless your big sister in a big way.

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