“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 at the last minute. When you are the parent of a child with a life-threatening disorder, you must prepare beforehand. There has to be a balance between living the life you’ve been given with this child to the fullest and being “ready” for an abrupt end.
But even after all your preparation when the moment comes it will feel like oppressive chaos…. because it is!
In my journey with Harper I have come to discover there is no wrong answer. You make the best decision with the information you have at that time. This wisdom holds true in death.
The reality (for us) of a DNR
The first decision a special needs parent is asked to make in any time of medical need is a Do Not Resuscitate order (DNR). This was harder for us than our decision to donate her body to science!
Initially we had a DNR in place. It is a piece of paper placed in all her files and one you can carry with you as well. When she was younger and in constant suffering it was easy to say, “Should she die, please just let her be at peace…”
It was another reality when I was laying in the chair beside her hospital bed in February 2014 as alarms started to beep. I watched numbers fall and fall while Harper became non-responsive. I pressed the nurse button and yelled into the hallway. I was literally fixing to do CPR myself but Harper came back!
I realized at that moment that a DNR was not for us and that’s okay! It is not for everyone and each person needs to make their own choice that they can be comfortable with.
Harper lived another two years after that initial scare.
It sounds simple to say I will donate my child to science
It is anything but simple!
This was on my heart for two years after the reality of losing Harper became clear. It was a topic that had to be discussed not only as a family but also with various individuals as to how exactly to make this happen.
The discussion needed to take place when Harper was as healthy as possible so we could be in a reasonable frame of mind. AND…. it is something that has to be remembered during your moment of panic and pain.
It is important that you know this about the process: Harper wasn’t simply whisked from our arms and “torn to pieces” upon her death because we had pre-planned the donation of her body.
We laid with her and loved on her for hours while waiting for the medical examiner. Dustin and I chose to bathe her ourselves just as we had when she was born. We wrapped Harper back in the blanket she passed away in and asked them to please explain to the medical examiner that her body’s preservation was time sensitive. Four hours had already passed and there was only a 6-hour window to work with for preservation purposes. There was a 24-hour window for collection of the vital tissues that we hoped would go on to make the difference for people everywhere who suffer from seizures and CDKL5.
Wanting to sleep and never wake up
Emotionally and physically drained, we left the hospital, without Harper, around 4:30am on January 8, 2016. We came home and showered just as we always did after returning from the hospital and went to bed. Important phone calls regarding the donation of Harper’s body to science awakened us at 8am.
I was angry to be awake! I wanted to sleep and never wake up because my life was now a hellish, unbearable nightmare and sleep was the only way to avoid it. But, for Harper I woke up and forced myself to put all those painful emotions aside.
I still had to do for Harper what I always did, and that was help her live out her purpose. She was gone from her body, but her body was still here as a gift of hope. We pulled ourselves together and took care of the business at hand to do what would continue to make her life meaningful.
The most important sample Harper left behind
In our case we were doing two separate donations: organ (i.e. brain) and tissue. With regards to brain donation you need to plug into the support groups of your specific disorder if you can and find the brain bank they may be partnered with. If so, there is a number you contact at the point of passing. A doctor will come to the location of the body and retrieve the samples.
Most hospitals do not allow outside doctors to perform these procedures in house, even for organ donation. So the hospital morgue will help you find an outside morgue that will allow the necessary doctors entry.
The tissue donation for Harper’s disorder (CDKL5) had a lab that would house the donated tissue appropriately, but they were not set up to come and collect the sample. I PANICKED! The tissue sample had to be collected, preserved and shipped by us to the laboratory.
BUT….this is where I tell you it is absolutely imperative if you have a child with special needs that you build a supportive team of doctors starting with your base….THE PEDIATRICIAN!
I contacted Harper’s Pediatrician and explained exactly what was needed. Dr. Rivera was able to take care of the arrangements of sample collection and preservation. My Dad made sure shipping was executed perfectly with the help of FedEx.
To me, this was the MOST IMPORTANT sample Harper left behind for science. These tissues, “Harper’s Cells” are what are growing today in a lab in San Diego. Follow Hope4Harper on Facebook and Twitter to get real-time updates on our visit to this lab on April 12, 2016.
I had to see her again
We spent the rest of the day after Harper died on autopilot and in business mode. Dustin and I spoke with doctors, research organizations, funeral homes, the hospital. Through this, all I could think of was that I HAD to see her again! The funeral home did a fantastic job of making this possible.
Should you choose to donate your child’s body to science and not want to cremate the remains, an open or closed casket service is completely possible if working with the right funeral home. She was beautiful! She looked so much better than the day she died; much less swollen and more like herself. I am so glad we got the chance to see her pretty face one last time even after parts of her were taken for science.
It wasn’t until the next day, January 9, 2016, that I could truly begin to process the loss of Harper because the job of giving her body over to the care of research was done.
Tomorrow it will be 3 months since Harper passed. Being able to move forward without her presence is another process entirely that I expect will take the rest of my life to understand and do.
Moving forward, not moving on
Moving Forward…
Posted by Hope4Harper CDKL5 on Thursday, March 10, 2016
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