“There is so much that I don’t understand. But I know you’re dancing with the angels.” –Monk & Neagle
Harper Elle Howard
April 12, 2010 – January 8, 2016
I never imagined Harper’s job on earth could be done…
We got Harper to the doctor for our yearly “common cold-turned-pneumonia” thinking we would be at the hospital for the kind of respiratory aid we were unable to provide for her at home. It was then we find out that her electrolytes were so off balance that her body was going into shock and her organs were dying. We asked family to come as we tried to figure out how to prepare for the worst.
We did everything we could to save her. She had 21 lines of meds and fluids in an attempt to regulate her heart, her blood pressure and her breathing. She was covered in warming blankets and every PICU doctor and nurse they could spare were standing guard outside her door. Medications were locked and loaded and took up all counter space in the room.
The worst day of my entire life is the day Elvis was born.
She fought hard for 31 hours. They couldn’t even keep her body alive artificially. It was dying from the inside with organ failure due to a life-threatening metabolic imbalance that wasn’t detected until we arrived.
Then her body just could not give anymore. They did compressions and maxed out all her medication options.
The room was crowded with medical staff. We sat in the chair while they administered CPR. Then on the count of three they simultaneously pulled all lines out of her body, scooped her up and let us hold her for her last breath! The WORST DAY OF MY ENTIRE LIFE is the day Elvis was born. It figures that’s the day she would choose to die! Graceland being on her wish list wasn’t enough to keep her here. Before we knew it her job here was done. Harper went to Heaven on January 8, 2016, 12:08 am.
More broken and fragile than any of us could see
I didn’t think it would be this soon. I thought I had more time! I always knew she would die before me but I certainly never imagined Harper’s job here on earth was done. Her body was tired. It happened so fast. My Beauty is gone and we just moved her into a home fit for a special needs Princess. We had growth hormone therapy treatment starting next week. She was clearly mentally there but physically her body was broken. More broken and fragile than any of us could see.
Opportunity was sitting at Harper’s doorstep for 2016. I am just happy that 2015 brought so many good memories and norm-changing accomplishments. She died a National America Miss Princess Covergirl. Read her 2015 year in review here.
We used to cry because Harper was here and suffering. Now we cry because she’s gone.
I am glad she is not in pain and is now free to simply be! I HOPE I retain for my lifetime what she has taught me these last five years and I HOPE I can pass that along to her siblings and to others. I LOVE that RHSO Hemp Oil from HempMeds gave us 28 full and lively months to truly KNOW our baby girl! It brought her to LIFE but sadly could not save her from the genetic disorder that took her away from us.
Over the past five years, seizure control has been such a prevalent issue and goal to improve Harper’s quality of life. But CDKL5 disorder has so many other life-threatening symptoms and those are what ended up taking her life so quickly. There were just too many side effects from her disorder and we couldn’t fight them all.
CDKL5 beyond the seizures
Harper died because it was a fight for her body just to live everyday. She got sick and her body couldn’t recover. Nothing grew in culture but a common cold. I believe it was metabolic. Her body was getting nutrition but wasn’t processing it correctly on a cellular level because of CDKL5 complications.
At this time there is no textbook correlation to what I have said since the discovery of her having CDKL5. The genetic disorder IS in part a metabolic condition.
Harper was a gift to us in and of herself. My Princess left us a gift that has never been given before. My hope is that with the donation of her body and funding given by those that loved her we can leave Harper’s mark on this disorder. The research will no longer help Harper but through it SHE will help all that continue to live with CDKL5.
For those that loved Harper
The days ahead will be extremely hard for our family because as many of you know only ten days ago we moved to a completely handicap accessible home specifically to meet Harper’s needs. We feel lost, we feel broken. We feel thankful we had a great holiday season with her.
Memorial service arrangements are being made. We did not want a funeral as Harper would have wanted a party instead…so for her we shall! Everyone and anyone is welcome and encouraged to attend Saturday, January 30th at 11:00 am at First United Methodist Church of Carrollton. The date is far out but time is needed for our family. We are overwhelmed yet grateful for the love and support that has been shown to us. Loving friends and family and supporters of Harper’s cause have reached out through phone calls, texts, and on social media.
Lily has insisted we continue with the 2016 Run4Hope to benefit seizure research and awareness even though this year Harper’s chair will be empty. Therefore, in lieu of flowers (and plants that I am unable to keep alive) please register now for our annual Run4Hope which will take place in September 2016. Packets for Virtual Runners are available and general donations appreciated. Funding enables the researchers to study the metabolic connections within CDKL5 disorder that caused Harper’s death.
“I want to leave a legacy, how will they remember me?
Did I choose to love? Did I point to You enough
To make a mark on things? I want to leave an offering
A child of mercy and grace who blessed Your name
Unapologetically and leave that kind of legacy” -Nichole Nordeman
Harper beyond CDKL5
Harper had SASS! She could give the “stink eye” like no other. She didn’t want to be called a baby but didn’t want there to be any other Baby. With the addition of hemp oil we were overjoyed with what we were able to experience with and learn about our nonverbal, immobile, beautiful girl.
Things that Harper LOVED:
Being Held
Her big sister, Lily
Watching other people get in trouble (like her little brother Seth)
Elvis’ music…she was an old soul
Her horse at Spirit Horse Therapeutic Riding Center
ABM Therapy with Mrs. Tracy Roybal
Thera Suit Therapy with Mrs Joanna because she could sit on the table and be in charge of the others in therapy!
In-home Therapy with Mrs. Tina and Mrs. Stacy where they helped her discover she loves watermelon and peanut butter but not mixed together!
Going to Chuck E. Cheese and playing the games I could help her reach
Watching movies (Brave, Tinker Bell, ET, Home Alone!) She HATED Annie.
Sleeping in the BIG BED
Roller Skating because it is warmer than Ice Skating
Bowling
Her favorite colors: Orange and Purple
Arts and Crafts
LOTS of Bows in her hair. (the most she ever asked Nurse Nikki for was six…that was a fun day!)
Nails always painted (and if you didn’t let her pick the color she smeared it everywhere. I told you she had sass!!)
Being in Pretty Dresses (She never cared how hard it was for me to manage all that skirt in a wheelchair!)
Dancing
Having Friends
Vacation Bible School and Sunday School
She had the best time making new friends and dressing up at the National America Miss Pageant
Going on walks
Being outside in the sun or looking out the window (one time we put her in time out for her sass and that backfired because it was by the window)
Swinging (I remember taking her to a wheelchair swing and after a long time we stopped it to leave. She hollered!!!)
Going down the slide with some help
Presents
To hold her head up like a BIG Girl
Instrumental music like the piano
Her Nurses (because I only kept the ones she liked)
Things that Harper HATED
Having her hair brushed. (made it hard to put her bows in LOL)
Musicals
Baths
Teeth Brushing
Lots of kisses on her face (that was mostly me that annoyed her with that!)
The sound of the flute (sorry Mrs. Emily)
New Therapists and Doctors
Needles
In the name of science, in honor of Harper, in the purpose of HOPE!
In my experiences over the last five years I would tell others in our situation to make sure you have an excellent primary care physician. They are your base for keeping you healthy and for building a team of any specialists needed. You need one you can trust, one that treats you as the expert of your child. But you in turn have to allow them to combine their expertise in medicine with the information you diligently provide them. If you do not have that in place let that be your 2016 goal.
Harper had the BEST TEAM in DALLAS! If not for them I believe she would have died well before age 5. Her 5th birthday was her best! She tried to kick the cake off the table 🙂
Harper’s is the first brain banked for CDKL5 research.
We always knew this was something we wanted to do so that her life after death would continue to have purpose and meaning. After her passing, our entire day was spent coordinating the professional brain tissue, blood, and skin biopsy sample collections and shipping in the name of science, in the honor of Harper, in the purpose of HOPE!
If you have not considered this please do and get organized and prepared beforehand because there is a limited timeframe before this option with your CDKL5 child is lost forever. IFCR board (International Foundation for CDKL5 Research) can assist in providing the correct information.
In our visit to the 2015 American Epilepsy Society Meeting great strides have been made in Hope4Harper’s research projects. As I mentioned before her body is donated but without funding nothing can be done to progress forward and help bring continued meaning to her life.
As it says on the wall above Harper’s bed…”Dream until your dreams come true!”
Harper Elle Howard
April 12, 2010 – January 8, 2016
Memorial Service: Saturday, January 30, 2016 at 11:00am
First United Methodist Church
Carrollton, TX
Donate Online:
Donation By Mail:
EIN # 45-4886455
Make Checks Payable to Hope4Harper
Hope4Harper
PO Box 116952
Carrollton, TX 75011