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Blog
Our journey with Harper was full of adventure, difficult decisions, and exciting possibilities. Please use the search bar to type in a word of the experience you are searching for such as, CBD, Organ Donation, Eye Gaze, GTube, etc…. If you are unable to find information please feel free to contact us directly and we will help you in any way we can.
It Sounds Simple to Say I Will Donate My Child to Science
“If you lose something, it’s OK. And I get to see Harper again, but not for a long time… Just like in the book. Right?” -Lily Howard The reality of a life-threatening disorder It’s important to know the task of death requires great strength and that you do have options. You cannot throw this together […]
Remains of CDKL5
In my previous post I mentioned that the parts of Harper not donated to science were cremated. Body donation is delicate but it is not a scene out of Frankenstein. Science takes the pieces they need and can appropriately preserve for valuable research. The remains are left to the family. What did we do with Harper’s […]
A Missing Basket and Being Able to See: Harper’s New Beginning
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. Grief is not a process it’s a new way of life Do not be fooled by our outward […]
Hope is Something Everyone Needs and Will You Help?
How would you market HOPE? Hope4Harper began exactly five years ago because of a specific diagnosis of Harper’s rare genetic disorder. Hope4Harper has evolved into an organization of spreading HOPE and help in funding research that is centered around providing a better quality of life to those who suffer from seizure disorders. Hope4Harper remains to […]
Help is Needed in the World Harper Helped Create for Us
Your responses I asked if you thought Harper’s story should continue or end. Read the post “Continuing… or Ending… Harper’s Story here: (Part 1) and (Part 2). We will Continue! After contemplation, feedback, and family discussion which included Lily we have decided to move forward in the world Harper helped create for us. There are many […]
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 […]
Continuing… or Ending… Harper’s Story (Part 1)
Lost and healed I woke up to find that another CDKL5 child has been lost… or another way to view it is another CDKL5 child healed. It’s a choice on which way you view it. One, while still sad, speaks words of hope and positiveness that will help you move forward. The other brings remorseful, […]
Speaking for Hope and Hemp at Southwest Cannabis Conference DFW
“Hemp helped my sister be my sister“ The Southwest Cannabis Conference and Expo (SWCCExpo) is a professional and educational medical cannabis and hemp conference where industry members, entrepreneurs, local leaders, companies, advocates, and curious individuals can learn about the industry. People can discuss with other like-minded individuals about the benefits of cannabis. It took place […]
Harper Howard Celebration of Life – Never Give Up Hope
Harper Howard Celebration of Life – Never Give Up Hope Harper’s life, her way Today many people came to CELEBRATE Harper! And so many more were unable to attend in person but have been thinking about her so much lately. Loving messages have been left on my Facebook wall, even videos of balloons being […]
Unpacking a New Normal
Unpacking a New Normal Accept being served during times of need During the past two weeks we have had many family and friends step in and assist us with moving, unpacking, keeping the kids, providing meals, birthday party planning for Lily so she doesn’t get forgotten, and the list goes on and on. As a […]