Make-a-Wish

 I blog for a variety of reasons.  Mostly I blog because I enjoy keeping track of our family adventures and like going back to see all the cute pictures.  Sometimes I blog because it's helpful for recalling specific details.  For example, just today I couldn't remember the name of Annika's second grade teacher but found it easily on the blog.  Many times blogging feels like a chore or obligation.  But sometimes it's more than that.  When dealing with heavy topics, blogging helps me to process.

Today's post is like that.  Make-A-Wish.  It's big, right?  When Annika's doctors first approached our family about a Make-A-Wish referral, I felt super disturbed.  In my mind, Make-A-Wish was synonymous with terminal illness.  Even though I knew how close Annika had come to death, I had no interest in being a part of that club.  In my mind, I pictured children battling cancer, having lost their hair to chemotherapy.  Annika made it through.  She recovered.  She survived, and now she was well.  End of story.  

Don't get me wrong--I was all about granting wishes for ill children.  I just didn't want my child to fall into that category.  And when they approached us about Annika becoming a Make-A-Wish poster child?  Sheesh.  Jason was all in favor, but it was much more than I could handle.  Let's just say that our differing viewpoints caused some marital tension.

It turns out that there is a sorority near our home, Chi Omega, who fundraises for Make-A-Wish each year.  They wanted to involve Annika in some of their special events and share her story online.  They needed a kid to be the "face" of their campaign, and I wanted nothing to do with it.  This was just weeks after her cardiac arrest and my emotions were far too raw.  Jason, on the other hand, felt that we really ought to be supportive.  Still salty, I finally capitulated and told Jason that fine, we could do it as long as he took care of everything.  I didn't want to be there.

And so, Jason did!  He took care of all the email correspondence, wrote her story, and brought her to the Wish Week Olympics held at Reservoir park, just a few blocks from our home.  I showed up late and found her surrounded by a mob of college students, including all these frat boys.

I think many kids would be overwhelmed, but Annika LOVED all the attention.  She was having so much fun as the judge and referee for all these events where competitors paid an entrance "fee" that was donated to Make-A-Wish.

Plus, some of the girls brought their puppies for Annika, and she got to go crazy with the whipped cream.  Life is sweet.

Balloons, donuts, and an outpouring of love--my heart was definitely softening.  Perhaps being a Make-A-Wish family wasn't so bad after all.  

While a scheduling conflict still kept me from the next Chi Omega Wish Week activity, I was done sulking.  In fact, I was grateful.  All those frat boys?  Well, they brought Annika an entire box of Crumbl Cookies, along with an adorable handwritten note.  Meanwhile, the Chi Omega girls gave her this beautiful butterfly necklace and a leopard print backpack.  Now I know life isn't all about stuff, but I was deeply touched by their thoughtfulness.

For Annika, the very best part was yet to come. She got to ride the Bucking Bronco!

Yee haw!  Best day ever.

Oh wait!  I just remembered why I wasn't there this day.  I was skiing with my cousin Greg.  As we drove down the hill on our way back, we passed this big crowd surrounding a giant inflatable bull. Totally shocked, I squealed and explained that I thought Jason and Annika were there.  Greg snapped a quick photo (not creepy at all), and sure enough, we spotted Jason under the tree!

Meanwhile, Annika was inside having a great time line dancing.  At one point Jason lost track of her, and discovered that she was upstairs on the roof.

I never thought I'd be thanking a sorority, but thank you Chi Omega for helping Annika feel so special, and for helping to grant wishes for kids everywhere.

After this special week, I was ready to consider Make-A-Wish with an open mind.  I learned that Make-A-Wish kids do not have to be terminally ill.  However, they do have to be "diagnosed with a critical illness that is placing the child's life in jeopardy."  While I still don't love this language, the truth is that Annika does have a critical illness that absolutely places her life in jeopardy.  While we are grateful that she now has medications and an ICD for protection, it's likewise okay to acknowledge that her heart is still sick.  Does it hurt to admit this?  Absolutely.  It hurts a lot.  But is it helpful to progress?  I think so.  And if the journey is hard at times, a wish brings joy and light.

Still a bit unsure, I took a look at Make-A-Wish's cardiology referral sheet.  It turns out that Annika qualifies in a couple of areas, both in terms of her cardiomyopathy and her Implanted Cardioverter Defibrillator.  So yeah, even though Annika seems amazingly healthy, when it comes to Make-A-Wish, turns out she's legit.

So, we began the process of working with Annika's wish granters, two lovely women named Tami and Katelyn.  They came to our home and helped Annie decide on the wish of her dreams.  Then they invited us to Make-A-Wish Utah's headquarters (located in Murray) for a very special wish declaration.

"Welcome to a Wishing Place, Annika!"  I wish everyone could see this magical wishing place.  Being there felt so special.

On our tour, we were greeted with a sky full of stars.  Each of these stars represents a wish granted for a child here in Utah.  Some day Annika's star will hang brightly as well.  On the wall were some stories of very special wishes, ranging from a Secret Garden to a blessing from the Pope.  A cancer patient wished for toys to give to those going through treatment with her, while a boy wished for a drum set and grew up to become a professional musician.

Annika got a chance to write down some very special wish ideas of her own.  I'm pretty sure I see something about eating octopus and sea urchin.  Her wishes went into a special brass canister while the rest of us had a moment to write down our wishes for Annie.

Annie then received a special skeleton key that unlocked the wish tower.  The room can only be accessed by a Wish Kid and their guests.

A magical space with changing lights and a water wall, it was the perfect place to share our own wishes for Annika.  I may have cried a little...or perhaps a lot.

When we were done, some glowing lights on the floor led Annika to the spot where she could send her wish to the Wish Wizard.  Whenever this happens, a beam of light shoots up from the building.  If you are driving by and see this light, you can know that a Wish Kid is being granted their wish.

Annika and her wish granters.  Thank you!

The Wish Wizard must have worked some quick magic, because once we made it downstairs, it was already decorated to match Annika's wish.  Aloha Hawaii!  More than anything, she wants to swim with dolphins.

Grandma Susie and Grandpa Charles, thanks for joining us for this special occasion!

Thank you to Make-A-Wish and all who support this tender program for helping Annika's wish come true.

Chopper Ride

  It's crazy late and I ought to be headed to bed but I can't sleep.  It's been a pretty intense day.  It started off fairly relaxed--we worked in the yard a little this morning before leaving the house around 10:45 to drive Eli up to FSY (For the Strength of Youth) at Utah State.  All of the kids were with me because we wanted to spend the day with Grandma Susie and Grandpa Charles.  We'd even brought our bikes to check out the new trail that Charles has been developing around Hyde Park.

Well, we'd only been on the road for about ten minutes when Annika mentioned that her hand felt weird--tingly and numb.  After a short while the numbness moved up to her right arm, then her mouth.  We weren't quite sure, but it seemed like she might be having difficulty speaking.

A bit freaked out, I called Annika's cardiac team at Primary Children's Hospital and spoke to one of the nurses there.  By the time we connected Annika was feeling better and wanted to keep going to Logan.  (She particularly wanted to see the chicks at Robin's house.)  The nurse and I both felt like what had happened was definitely weird, but probably okay, so we continued on.  Annika fell asleep and the drive was peaceful.

Well, as we neared Logan Annika woke up and was worse.  Not only was the numbness back, she now had a severe headache (localized on the left side.)  We were just a few minutes away from Eli's drop-off at Utah State, but decided to make a detour to the Logan Regional Hospital.  I had Brooklyn and Talia drop Annie and me off so that Eli could still get to FSY on time.  It was hard to say goodbye to him under such circumstances.  This is his first time away from home!  Fortunately Talia was super generous and gave him her phone so that we could stay in touch.  We love you Eli!

Checking in at the ED, I wondered if we were making too big of a deal out of a tingly arm and a headache.  Truthfully, if it had been any of the other kids, we probably would have waited longer.  But given Annika's cardiac history, I didn't want to take any chances.

Well, when they took Annika's vitals her heart rate was low--super low.  Like in the 40s, occasionally dipping into the 30s.  I knew that was bad, but didn't realize quite how serious until the doctor explained that per protocol, they would perform CPR at this point.   Annika may have been feeling pretty lousy, but she was still awake and conscious.  Thankfully, CPR was not the answer.  Instead they gave her some atropine.  Still, I cringed as they placed the defibrillation shock pads on her chest, just in case.  Too many memories.

As you might guess, Annika immediately escalated out of triage and up the chain. They set up a teleconference call with the ICU at Primary Children's who said that she needed further evaluation at Primary's.  Could they arrange transport?

Well, transport looked like a helicopter.  Fortunately, by the time the helicopter had arrived the atropine had raised Annika's heart rate and her headache was subsiding.  The numbness and tingling were gone, and she was back to her chipper, chatty self.  In fact, she was pretty excited about taking to the air.

The pilot decided that I could hitch a ride in the front seat.  Annika was directly behind me so I couldn't see how she was doing, but the pilot Nate would occasionally give me a thumbs up sign.  Per Annika's review, the flight was awesome.  If nothing else, I'm glad she will be able to remember this one!  I kind of wish I'd given her my phone to take pictures since it was an absolutely beautiful day.  I didn't feel quite right snapping photos under the circumstances, but here are the few I did take.  Do you like how the ear protection matches my shirt?

As we neared the hospital, we flew directly over our home--so close that you could easily identify the different headstones at the cemetery. No wonder I find the sound of a helicopter triggering! When we landed on the heli-pad, I took it as a good sign that there wasn't an entire team waiting for us. Instead a security guard led the flight nurses to our room in the Cardiac Care Unit. Her vitals were so stable that we got to bypass the ICU completely (knock on wood.)

The person who suffered most was Jason.  He'd stayed behind in Salt Lake to work, but knew that we were in the ER because of text messages.  He was actually in the process of trying to donate blood when he received the text that Annie was doing poorly and would be admitted.  He'd just had his finger poked when they said, "Um, your heart rate is too fast."  At this point Jason broke down and explained the news he'd just received about Annie.

Naturally he wanted to come up to Logan, but at this point we didn't know if she would end up back in Salt Lake.  I'm glad he didn't start driving, even though it was awful for him to be stuck waiting for the helicopter to arrive.  He felt left in the dark because I was in conversations with medical personnel and couldn't text much.

After some hassle with security, Jason made it up to the Cardiac Care Unit just as Annika was settling into her room.  Her cardiac team was there waiting.  I am grateful that they know Annie and her complicated medical history.  Now we just need to puzzle out what's going on.  Best case scenario, it's just a medication dosing problem.  My mommy tingle thinks there might be a bit more, but then again, it could be nerves.  It's been quite a day.

Even so, I would love to break free in time to see some fireworks.  The freedom of Independence Day just doesn't feel quite the same when confined to a hospital bed.  Mostly though, we are SO grateful to live in this amazing country with extraordinary medical care.  To quote our baby girl, "Thank you for saving my life!"