It’s a strange feeling to have relief and pain at the same time
I am so happy that Harper is no longer suffering! She lived 2097 days. That is 299 weeks trapped inside a broken body that hurt.
Harper, Easter 2015
Grief is not a process it’s a new way of life
Do not be fooled by our outward strength. We internally struggle every day with this new way of life. Dustin and I have silently been preparing for these days for the past 5 years and 9 months.
We have prepared Lily at her young age to not only care for Harper should she outlive us but to also understand the reality that she may not. Lily had an unexplainable connection to Harper, as did Seth even at his very young age.
I reached out to a friend who experienced the loss of their child two years ago. I asked how they made it through the holidays. I was told to create new traditions and do what we need to for the remaining four of us.
It started out a hard day but ended with smiles. I made myself move forward for the kids I still have with me.
the Howard family, Easter 2016
I asked Lily at the beginning of March how she wanted to observe Harper’s birthday this April. She said she wanted to go to school and celebrate Harper by telling her friends it’s Harper’s birthday. So that is what she will do.
I however, NEED to see Harper’s new beginning!
Her spirit set free means her body freed for science
The death of Harper’s body is not the death of Harper, rather it is a new beginning. Harper made the ultimate sacrifice for her own organization, Hope4Harper. Hers is the first brain to ever be donated for CDKL5 seizure research. This means so much MORE may possibly be discerned than from trying to reproduce seizures in mouse models.
Her tissue samples were sent to the University of California San Diego and are reproducing other tissue cells in a petri dish at the university lab for CDKL5 research on a metabolic level. Samples of her brain are being preserved at Children’s Hospital of Boston. As for the rest of Harper’s body, it was cremated.
I know it’s not Harper at the lab but it’s what Harper sacrificed for so many people that is growing there. This is scientific research! This is why Hope4Harper and many other research organizations exist. This IS hope made REAL!
San Diego lab visit is scheduled for 9am on April 12.
This is a trip for nonprofit business that is emotionally healing at the same time. I thank you to those that contributed to Hope4Harper for the purpose of this specific trip! Your contributions paid for our plane tickets via Southwest Airlines.
For those wishing to contribute directly to this cause we are still in need of funding for the hotel and taxi. Donate here.