The first step is not the hardest

It was 5 years ago today, that Audrey first walked.  1,826 days ago, Audrey's first step was the easiest.  Not the hardest.  Yes, you heard me correctly.  We will get to that in a little bit.  I remember April 20, 2019 as a pretty glorious day.

Her smile shows how proud after walking for the first time.

There must be something magic about the springtime, specifically the middle of April because 2 years ago from yesterday was when Hannah first rode her bike confidently without training wheels

Hannah joyfully mimicked Duke Caboom from Toy Story 4 as she rode through the NIU Rockford parking lot.

That was her first time riding, but not her best.  Last year, she rode over 16 miles in a leg of a Register's Annual Great Bike Ride Across Iowa (RAGBRAI) day.  As a seven year old, she did a 20 mile practice ride.  The best is yet to come, because one day I see her riding an entire week of RAGBRAI.

That wasn't the same for Audrey.  On April 20th, 2019, she was less than 2 months away from being diagnosed with Infantile Spasms (West Syndrome), a severe childhood epileptic encephalopathy.  In fact, we could tell by her first birthday on May 29, that she was not herself.

Infantile Spasms, and the intractable seizures accompanying Audrey's epilepsy, led to an associated neuro-muscular condition called Hypotonia, which is described as an abnormally low level of muscle tone.

Two years, later, after an evaluation, Audrey was also diagnosed with Autism Spectrum Disorder. At first, we thought that it was behavioral when Audrey started dropping or throwing herself  down on the ground as toddlers sometimes do.  

This past summer, we had the privilege to go to South Dakota with the girls and my dad.  While we knew the trip was special, now we know HOW special it was. We went to Mount Rushmore the night we made it to the Black Hills to view the nighttime show. We woke up almost every morning with bison outside our cabin window.  Audrey loved Wind Cave National Park.  Then, we revisited Mount Rushmore, and did the .9 mile loop hike from the visitor center to underneath one of the most impressive monuments in the United States.  Audrey was not having it.  Again, we initially thought her refusal to walk was behavioral. But more and more puzzle pieces continued to come together to suggest that it was Audrey's low muscle tone that gave her so much trouble that day. 

   

Audrey had a great time with her sister, mom, dad, and pop pop.  But Mt. Rushmore was a rough hike for her.  

One of the most terrible parts of epilepsy was seeing epilepsy take parts of Audrey away.  The neurologist couldn't pinpoint it, but Mandy and I are quite confident that Audrey developed autism as a symptom of her epilepsy.  Everything that afflicted Audrey started with her infantile spasms including her hypotonia.  Also, her persistence and strength came from the fact that since 2020, Audrey did not have a day of her life when she did not have a daily seizure.  Seeing her fight through and try and regain herself was terrible and also made her the fighter she was.

The fact was, she peaked with her level of development in April of 2019.  Her first step was her easiest step and never had it easy again.  

Its understandable if you can't relate to this.

But Mandy, Hannah  and I CAN relate.  We have been told that the first days and even year of grieving is easier than the second year.  This is shock.  Shock got us through the first days, through the funeral, and getting back to some sort of routine.

It seems much more difficult eight and a half months later.  The shock is gone.  Our first few steps in grief seem easier compared to the much more real seeming grief.

We will fight through this just like my superhero did every day of her life.

4 years later after much regression, she was still putting in the work.

Some people know that the first step is not the hardest.  It may be the easiest step one takes.  

For those that know this, there is help.  We are thankful for members of the "club" who came before us and have helped us along as some of the steps have been hard lately.