Continuing… or Ending… Harper’s Story (Part 2)

Choices: if we had one, would we have Harper’s life be the same?

There is no right or wrong answer to the question Dustin posed to me last night.

“If you could go back six years and have Harper be ‘normal’ and have no clue of this special needs world we have come to know….would you repeat her life ‘normal’ or would you live it all the same way again?”

Dustin’s Answer:

“Selfishly, I would choose a ‘normal’ life for her. It was not fair to Harper or Lily that she suffer so much for so long. They both deserved to experience a happy life as sisters running and playing and laughing and fighting. For so long I was so angry and now I’m not, but I think Harper and Lily would still have been amazing people given the opportunity to be ‘normal.’”

My Answer:

“I would do it all again the same way! How could I not? She’s touched so many and changed Lily, as well as you and me into better people. We are a more compassionate, understanding, and unified family because of her. After Seth was born things became very difficult to manage, and I felt I was losing everything she taught us. Especially our patience! However, I still think the mark she left on this world is bigger than we may ever understand. And it wouldn’t be right to take that away. So although I certainly understand the desire to see who Harper should or could have been given a different path, I still think the one she was given made more of an impact.”

Lily is old enough, certainly mature enough, and has been impacted by this enough that posing the same question to her seemed reasonable.

Lily’s Answer:

“I would do it all the same!”

Why?

“Because she was perfect exactly how she was and she helped science. If we didn’t do it the same way what would happen to all those kids that Harper and I helped? “

Dustin’s question came out of a realization: We are a special needs family, but with Harper gone, we no longer look like one.

We are just one family, and I am just the mom. We have no cures, no right answers, no profound and influential knowledge.

We have LOVE! We have HOPE! And with those we GROW together.

We share this love, this hope and our growth with the thought that some of what we have experienced may HELP others in the growth of their own love and hope.

We were a special needs family

Now we are at a crossroads. Do we continue as a special needs family or do we just mark that time in our life with Harper as complete and move on as a “typical” family? Do we simply take the experiences for what they are?

If we move forward, Harper will not be forgotten by us. But is the change in our hearts because of her permanent? If we carry on as “typical” will we forget her life lessons to our family and revert back to the hustle of societal life? The compassion and empathy will remain but will the drive to change the definition of normal remain?