My Most Favorite and Least Favorite Possession

Earlier this week, I found myself sitting with my sweet Tennyson listening to a song from Moana. The condensed lyrics (with emphasis added) are:

The journey may leave a scar

But scars can heal and reveal just

Where you are

The people you love will change you

The things you have learned will guide you

This little Disney song beautifully sums up how I’ve been feeling. As regularly happens these past couple months, the tears rolled freely down my cheeks.

That evening I told Tait about the song. As I talked, I looked at my forearm. As a horse riding, old house demolishing tom boy, my forearm is covered with dozens and dozens of tiny scars. These little white lines cover my arms and bear witness of climbs through barb-wire fences, runs through the forests of Georgia as a child, bug bites I scratched too much, old plaster I tore out of old houses, and many other blood-producing events that I will never remember. My journey through life has definitely left scars on my body. Like this song lyric says, these literal scars do tell who I am and where I’ve been.

But of course, I am not staying up late spending my much needed sleep time typing, thinking, and struggling with thoughts of the silly literal scars on my arm (that would be insane, and much more vain than I could ever care to be).

These past couple months, my heart has been changing, hurting, and healing with new scars. Again, as this song teaches, the scars are revealing who I am --- and a person I LOVE is changing me.

This week we made a purchase that is LITERALLY a several-ton shrine to our daughter’s difficulties. It is so big that any denial in my heart was brought out of the hidden corners of my thoughts and subject to the BRIGHT and glaring light that is reality.  

The title of this little journal, is about our purchase of a shuttle bus -- yup a BUS -- to move our family with just 2 kids in it.  

As she grew, we thought Tennyson would “grow out of” many of her difficulties:

• “When she can speak better… she’ll be able to tell us about….”
• “When she gets bigger… she’ll be able to understand that…”
• “When she can… she’ll be able to process… better.”

Our happy, smart, sweet, caring, beautiful, animal-loving, running, climbing, wiggling Tennyson almost certainly has Sensory Processing Disorder, and/or Autism, and/or social anxiety. (FYI: Nothing “happened” to her to give her this. These are hereditary conditions and we see these issues on our combined family tree).

I remember being a new mom and trying to explain baby Tennyson to people:

• “She is very sensitive to location, where she is is very important to her.”
• “She can’t sleep/nap in a space she doesn’t know.”
• “She is only comfortable in spaces she knows.”

YES, I SAID THIS WHEN SHE WAS A YOUNG BABY, and it was all TRUE! I did NOT know how insane I sounded!!! In contrast, Gavin has NO IDEA where he is, EVER. He simply sleeps when he is tired and bounces through his life like a happy potato.

Back to the issue at hand, we just bought a used shuttle bus with a gazillion miles on it as we still think spending significant money on a depreciating liability (a car) is insane (luckily these things are tough to resale and thus surprisingly cheap). This $2,000 T.W.E.N.T.Y.-F.O.U.R. foot long, 9 ½ foot tall, 8 foot wide MONSTROSITY will be OUR COMMUTER VEHICLE, our daily driver, and yes, we live in the city too… so that should be extra-easy!

Tennyson needs a space she knows to relax and reset when we can’t get home, or if we have to go to social events. For example: This year, Tait’s family was doing Christmas a week before Christmas day. We made sure our nanny could work that day so we could LEAVE Tennyson AT HOME. As much as thinking of leaving our daughter home during Christmas made me CRY, we knew it was the right choice. All that noise, that many people, that much excitement --- all of that would HURT our Tennyson in a very real way.

In an effort to be with family during the holidays (and take care of Tennyson), we hosted Thanksgiving at our house so that Tennyson could be in “her” space. She did better with this situation. She was able to retreat to her bedroom to hide in her blankets every 45-minutes or so. Tait was able to sneak away to rock her and hold her until she recovered from the excess sensory input. But after a bit she stopped coming out of her bed and stayed there the rest of the party (one of the few times we let her watch as much TV as she wanted… we knew her brain was at capacity!) It was hard for her even in the most Tennyson-centric situation we could engineer for her.  

Our lives changed when we read: These kids have “meltdowns” which are much more similar to PANIC ATTACKS than tantrums (and they should be treated accordingly).

I relate to Tennyson’s panic attacks and their impending nature by using the analogy of a staircase with 10 steps. At the 10th “step” the panic attack awaits. It is our job to keep her off the 10th step. The 10th step is damaging. The damage of these panic attacks can last days (sometimes weeks). Our little girl hurts with a pain that I can’t imagine and it hurts us to watch.

Some people who know Tennyson will think that I am crazy for thinking these things. Most of the time, she seems “normal.” (What does “normal” mean anyway!) And if we do our job of keeping her off the higher steps, you won’t see what we see. If we do our jobs PERFECTLY (hahaha!) everyone will think she is “normal.” But life is NOT perfect. I am NOT perfect. Tait is pretty freaking great, but he is NOT perfect either.

We are planners. We want to plan what to do when we fail (not if). We need a plan for what to do when crazy stuff happens -- like the time some kid hit Tennyson in the face and she went from the bottom of her panic attack staircase to the TOP in a single instant.

Tennyson is the most naturally happy person I’ve ever met. She has a genuine desire to be good. This seems a contradiction when coupled with her extremely strong will and stubbornness -- but somehow, it isn’t a contradiction (I can’t possibly explain how that is true, but it is).

Our Tennyson is the kindest little girl. She loves playing and sharing. Her progression up the “steps” comes with little signs. If we are at the Children’s Museum or at church and she stops sharing, I KNOW we are somewhere above the 5th “step.” And it is time for us to act. We can go on a walk, or we can go somewhere quiet. If that doesn’t work, we need to get home FAST. If she stops sharing, starts bossing people around, and has this scared little look in her eye, I know we are at least on the 7th “step” and I’ve missed my chance to get out gracefully. If she gets to the 8th “step” then getting her out of wherever we are, into the car seat, and driving home is almost guaranteed to drive her into a panic attack.

The only way to help her DESCEND the stairs is to be in a safe low-sensory space for a long time. If we catch it before the halfway point, it might only be 30 minutes in the low sensory room at the Children’s Museum which will allow us to go back out and play for another 30 minutes. Or if she gets too much stimulus, but isn’t stressed about it, she EXERCISES her anxiety away. Almost every Sunday after church, we spend at least an hour with Tennyson RUNNING around the gym, climbing the stairs, and doing everything short of climbing the walls to process her anxiety.

Other times, it is coming home and seeing her hurt (without a panic attack) for hours.

Last summer, we went to a family reunion for 4 days in the mountains. We really thought Tennyson did well. Tait and I thought we had turned the corner with Tennyson, we imagined a future where we could travel (even just drive to the mountains for a couple days). Then, Tennyson came home and was a DISASTER for WEEKS. These are BIG feelings.

These fun-facts mean that to BE a good mom, somethings I have to LOOK LIKE a bad mom. I get to say “no” to almost every invitation we receive (A kid’s birthday party is not a great place for her). When she is struggling, she looks BOSSY and BRATTY, as she tries to CONTROL these huge feelings with all the “skills” of a 3-year-old. It is times like these when I get to scoop her up and carry her away. Sometimes it is peaceful, like rocking a big baby. Many more times she SCREAMS at me like I am hurting her. Most everytime, I get to rock her, tell her I love her, I am proud of her for doing whatever she did, and I sing to her. She will only let me sing 1 of 2 specific songs. I figure out which song doesn’t make her scream more and I sing it over and over and over and over and over … easily 50+ times. Sometimes, she cries, “Help-a me!” with all the pain her little voice can muster. These panic attacks are heartbreaking!

I know, the part people see looks like I am telling my kid “good job for being a brat.”

Luckily, my self-employed, nerdy, successful, mini-van driving, Croc-wearing, spreadsheet-loving self usually doesn’t give a crap what people think of me! I haven’t been “cool” for a single moment of my life. Although, having people think I am a bad mom stings, it doesn’t tempt me to change my behavior when I know what is best for my little girl.

Our hope in buying this shuttle bus is that when we get to a 5th “step” or above situation, all we have to do is make it to the parking lot! We will climb into our shuttle bus which will serve as a portable living room. Our bus will be decorated comfortably. Tait will install an awesome storage system. We will have seats, bean bag chairs, mats for the floor, a bed, extra clothes, diapers for Gavin, snacks, food, and a toddler potty for Tennyson (icky!). We will be able to be content, happy, and prepared as we sit in our portable living room for hours and hours while our precious Tennyson re-sets. She won’t know we are sitting in that shuttle bus in a parking lot trying to stave off a panic attack. She will just think she is reading books, snuggling with her parents, playing with her beloved little brother, and eating snacks in her awesome clubhouse-bus.

Right now Tennyson doesn’t need to know she is “different” (b/c who is “normal” anyway???). She will learn that in the future, and we will love and support her through everything. We will be sure to provide all the help and tools we have available. We will get to teach her that everyone has challenges. She will need to own her challenges and manage them responsibly. After all, challenges build strong people.

Lest you feel the need to comfort us with platitudes of “oh, she’ll be fine” or similar, that is totally unnecessary. We KNOW she will be fine. She is already a STRONG little girl. This difficulty will help shape her, but this will not define her. All of her character traits will guide her as she chooses her path in life: hobbies, friends, career, spouse, favorite TV show, favorite food, pets, etc. These struggles will shape who she is, just as my struggles have shaped me and Tait’s have shaped him (and yours have shaped you).

This shuttle bus which holds this portable living room is something that I will hate driving, I will hate the gas mileage, and I hate that we need it.

However, even more, I LOVE what it will provide for our family. I LOVE the peace it will bring to our sweet Tennyson. I LOVE the flexibility we will have for the 1st time in years. I LOVE what is says about us as parents (seems braggy, but it’s true). I LOVE that it will make things easier for our freakishly-patient little Gavin. I LOVE that it will reduce the anxiety Tait and I have developed about outings with Tennyson.

Note: A kid with anxiety means that Tait and I need to get any and all of our own anxiety issues MANAGED asap! (especially those related to our daughter).

I am grateful for the things I’ve learned in my life journey that make this something I CAN handle. I can close the chapter where I have grieved this and move forward loving our little girl even more. After all, who is “normal” anyway?

The journey may leave a scar
But scars can heal and reveal just
Where you are
The people you love will change you
The things you have learned will guide you

 Link to the song if you want to listen to it for 2 hours straight over and over and over like I did. https://www.youtube.com/watch?v=HEiSF8HpyDg  

UPDATE: We've taken the bus out once, and it was LIFE-CHANGING!!! We are excited to get it set up the rest of the way so we can take this MONSTROSITY everywhere!!!