June 03, 2016

Have His Cake and Eat it too

Bridger's first birthday.

Spent in the hospital, getting a gastrointestinal tube (g-tube) placed in his stomach, which process begins with a nasal gastrointestinal tube (ng tube) placed for a couple weeks.  His "birthday cake" was some vanilla formula through the schnauzer enjoyed in a laundry basket I had brought from home and strapped him to with a Leckey vest to hold his body upright, since he could not yet sit, with the blankets holding up his head so he could enjoy a makeshift hospital ball pit.  Watch out, we know how party.

Bridger's third birthday.

Still 100% g-tube fed. We had been working with the feeding therapist for 9 months with the goal that Bridger would eat birthday cake on his birthday.  No frosting, no colors.  Just letting a crumb of plain yellow cake touch his tongue.

I can still feel the excitement bursting inside me in this picture taken on his birthday, when he finally tasted that celebratory crumb.  

Fast forward to a couple months ago.

Bridger's 9th birthday.  Still has the g-tube. Still will sometimes let a crumb of yellow cake touch his tongue.  And sometimes, he surprises us.  Like when I went to get the birthday candles and turned around to catch this.  His birthday excitement overpowered his sensory limitations.  This cake was supposed to be just a prop -- a cake for the rest of us just so he could have his candles that he likes to blow out, then cry when they are out, then relit, then blow, then cry, then relit . . . repeated 10 times.  {And, while we are talking about birthday routines, don't you dare try to sing happy birthday -- that will launch him into uncontrollable screaming and crying, no matter who's birthday. No singing here.  None.  Never.}  He had some plain vanilla ice cream ready in the wings for him - that he may eat . . . or may not.

Seeing this, our jaws dropped in astonishment and we laughed as we just let him go to town. 

By all means, he can have his cake and eat it too.

June 02, 2016



Not the first child.

Not the last.

Not the first daughter.

Not the last.

Stuck in the middle.

Go with the flow.  Roll with the punches.  Walk in the shadows.  Deal and move on.

That is my Sadie.

I have always called her "Joy in a Can".  There were no other words to describe her.

She had just turned 2 years old when her special brother was born.  Her sweet toddler life came to a screeching halt.

For a good chunk of her third year of life she was without a mom.  I was in the hospital for weeks and months at a time.  She was tucked in over phone calls and given kisses through the receiver.

Her preschool experience was forfeited to hours upon hours of doctor appointments as we went through the painful "diagnosis year" for her baby brother, searching for answers, discovering symptoms, documenting baselines, which continued into hundreds of monthly hours of therapy appointments that she sat dutifully by my side, watching her brother "play" with balls and puzzles, stamps and toys.  She was watching, always steadily watching.

She was my sidekick.  It was her and I enduring the daily struggles in Special.

Beautiful qualities are still emerging from her developmental years that came with a Side of Special.

One very strong quality I learned she possessed a few years ago.  I had flown out of town to attend a wedding - it was to be my first ever getaway from my children.  While the kids were at the cabin with their dad, Bridger had a terrible wheelchair accident.  Alan threw everyone in the Suburban and immediately went down the mountain to the nearest hospital.  Because of the severity of the concussion, Bridger was going in and out of consciousness.  Because of the fall, he was also bleeding heavily from his mouth.  Lance's job was to keep him awake and to wipe the blood.  Lance, who was 8 at the time, kept saying, "Come on Bridger, you can make it," as he wiped the blood from his mouth.  He reported to me that he thought Bridger was dying, and he was keeping him alive.  

Eva was in the back seat, hysterically sobbing with worry, distraught over her brother.  

Sadie was sitting silently next to her the entire ride to the hospital.

"You're not crying, you don't care about Bridger!" Eva accused Sadie, sobbing through her words.

On my phone call with my little 5 year old Sadie as I was waiting for the red eye flight to return home and head to the hospital, Sadie explained to me as her voice slightly cracked,

"I do care about Bridger, mama.  I was just trying to show you how strong I am."

With those brave words spoken, she began to sob.

As did I.

I learned the most important quality about my middle child that day.


Sadie is fiercely stoic.  She is rock steady.  She will take a hit, and hold it in.  She will observe and study, be wronged and offended, and go forward -- not letting it build up for a later explosion, but tempering it.

That quality is such a wonderful part of her, and a blessing to me.

But it is something I have to consider with great caution.

In our life with a Side of Special, she will take a hit.  She will have to take many hits.  She will observe much, and likely only be an observer too often.  I cannot take her stoicism for granted.

I need to look out for her.

My favorite way to keep tabs of those needs with my children is through a little one on one time.

Alan had some business to do in NYC a few weeks ago, so I decided to take my trusty stoic sidekick and crash his business trip.

She and I decided to try out one of the $20 express bus services to NY.  {insert reminder to myself to never do that again}

I catered the trip especially to her taste, which started with a taste of the Cake Boss at Carlos Bakery. We loaded a bag full of goodies to take back to the hotel for the night where we would reunite with Alan.

After we checked into the hotel in Times Square and took a brief snooze to recover from our bus lag, we headed over to my favorite Manhattan lunch eats at Sarabeth's next to Central Park.  A bowl of Sarabeth's tomato soup should be on everyone's bucket list.

Sadie is a foodie.  She has the palate of a well traveled grownup, not an 11 year old girl and it makes her a fun traveling companion.

After strolling the streets, we headed over to Dylan's Candy Bar where she chose to pick out treats for her siblings.  They converted their third floor to a cafe, so we decided to check it out.  With some time to kill and no dessert in our stomachs yet, we indulged in some sugary delights of her choosing.  A Pop Rocks sparkling punch sipped through a candy stick straw with a Pop Rock rim and a sour fruit roll garnish - um. . . yum??  One sip and my eyeballs popped out.  Four sips and she was done.  We lingered there, people watching through the glass wall by our table and enjoyed each other's company.  Sadie is my daughter, by also my dearest friend.  I enjoy her immensely.  

We went back to the hotel, freshened up and headed to Broadway to see Matilda.

Adorable, funny, amazing.  Sadie was captivated.

The next day was our touring day.  I indulged her deepest dream to one day own a selfie stick. We saw all of the sites, walked to Amy's Breads for our lunch, shopped some more and hit Broadway again, this time, for Wicked.  Ohhhhh, how we loved it!  Pretty sure we were the last people to see it.  It was worth the wait!

She had a taste of NYC nightlife.  Decided 5 minutes was enough for her and we went back to crash at the hotel and tell her dad all about her adventures of the day.

The next morning, I let her enjoy a first for her -- room service.  Reason #283 to love Sadie, she loves to take the morning slow and leisure about and watch HGTV.  She knows every episode of Fixer Upper.  

After we lounged about, it was time to pack up.  We headed to the M&M store for some souvenirs, strolled Times Square and walked over to Alan's building to meet him for lunch. A couple quick slices of NY pizza later and we were back on the bus towards home.

A little time alone with Sadie and her stoicism can melt.  You get to her vulnerable, her feelings, her heart.  You can get her to her safe place where she can open up and allow what needs to come out to be flushed to the surface, and help her process the unique challenges of her life and let her keep all of the joys close to her heart.

Stoically stuck in the middle, but never to be overlooked.


I love her.

My sweet Sadie.