How epilepsy affects Lily

Lily's excitement at meeting her baby sister, Harper 

This is the hardest part for me in my efforts of creating awareness for Harper.  Our family makes a conscious daily resolution to maintain a positive attitude about the struggles we face.  It is difficult to pull apart the wall for a moment and disclose the emotion behind that daily decision.   It weighs heavy on our hearts to know that this burden is not one we as parents simply carry, but one that affects the entire family, including Lily, age 3.

As my belly size continued to increase and time grew near we began to explain to Lily that she would soon have a baby sister. One day we were discussing Dustin’s name choice of Harper and Lily happened to overhear our conversation.   From that point forward she referred to her baby sister as Harper despite our undecided name choice.  Lily’s persistence solidified the name: Harper for everyone.  When the day finally arrived Lily couldn’t have been happier!

Two weeks later we gave Lily to my parents for an unknown amount of time as we took Harper to the ER for seizures.  We attempted explain to Lily, at 2 years and 3 months old, that her nearly three-week-old baby sister was sick and we had to take her to the doctor so they could help her get well.  During the first year, Lily was displaced for a minimum of two days per month while I took Harper for a 24-hour video EEG, and even longer when we traveled to the Children’s Hospital of Boston in hopes of finding some answers.  In an effort to take Harper to all her appointments and therapy sessions without making Lily suffer through the wait we increased her time in school.   Luckily she enjoys going.  This was hard for me because I wanted to enjoy my limited time with her before she had to attend school.  I am so very thankful I was able to stay home with her for the first two years.  That time we shared is memorable.

Over the past 18 months as we have sought out therapies and doctors to help us combat the seizures and overcome the delays we were determined to have Lily continue the activities which provided stability to her disrupted life.  With the help of Lily’s Grandma Shirley I am able to have Mommy-Lily time on Friday mornings, which makes a big difference in Lily’s attitude.   During that time I take her to gymnastics and dance and we eat lunch just the two of us.  It is a time she and I both enjoy where we can focus on each other and talk about everything!

One day on the way home from our Mommy-Lily time an unexpected conversation took place that I was not fully prepared for but should have been.

Lily:    out of nowhere comes the question “Why is Harper sick?”

Me:      shocked and unsure where this conversation is headed “I don’t know baby”

Lily:    “Well, you need to fix her!” with an angry look on her face

Me:      “Baby we are trying very hard to make her better.”

Lily:    in a very demanding tone with an assertive look on her face “Then why is she
not better?  Why is she still sick?  Why does she still have seizures?  You need  to fix her!”

Me:      swallowing back the tears, “Baby, we are doing everything we can, lets go
home and see Harper and Grandma, okay.”

Lily:    “okay!”

The remaining ride home was silent and the longest five-minute ride I think I have ever been on, as I looked in my mirror and see Lily staring out the window.

Harper responds so well to Lily that we constantly try to encourage interaction.  I know Lily loves Harper, but it is difficult for them to play the way Lily sees other siblings interact.  Harper is a year and a half now but to Lily she is still just a baby.  It is difficult for us as parents to cope with the difference between the two at certain ages.  It is also challenging to explain to Lily where she was at that age when she sees Harper is clearly not near accomplishing that ability.

Lily: 18 months walking, talking and feeding her self.

Harper: 18 months unable to walk, talk, feed self or sit with out assistance.

Lily’s favorite station at school is home living.  She loves her dolls.  She is a great mommy, doctor and therapist to them.  She comforts them as they have seizures, puts them in her car and drives them to the doctor and does therapy with them.  When her and Harper are in the same room she’ll yell out seizure when Harper has one and either Dustin or myself will look at a clock, call out the time and go to the book while the other goes to comfort Harper.

We do our best to protect her from as much bad in this world as we can and focus on how much good surrounds us.  Since the age of 2 Lily has had to be emotionally mature enough to watch her little sister have seizures multiple times a day.  Lily is an amazingly strong and supportive BIG SISTER!

Despite the physical and emotional challenges, we are honored to serve in such a special situation.  It is surreal to reflect on my own life and realize it has been training for such service.  There is a plan.  There is a purpose.   It is not always clear but it is there.  Hope is what makes the path laid before you easer to follow and we hope for Harper everyday!

Penny Howard is Lily and Harper's mom and cofounder of Hope4Harper.