IT TRULY TAKES A VILLAGE...
Carrying a precious newborn baby fills your heart with a love that is indescribable. As a mommy, all I ever wished for was good health and happiness for my children. For the past three and a half years, our son Nā‘ōnohikauikahelelani Naumu "Nā‘ō" has been struggling with his health.
He is now four years old and despite daily setbacks, he continues to show us the power of endurance, faith, hope, and gratitude. Nā‘ō is autistic, non-verbal with sensory processing disorder and suffers greatly with seizures and hypoglycemia.
For much of his life, Nā‘ō has been in and out of the hospital. Just last week, he was rushed to Wilcox by ambulance after going unconscious from a hypoglycemic seizure.
Two days later, he hit a life-threatening low which required him to be airlifted by a special team to Kapi'olani Hospital on O'ahu.
Nā‘ō spent nearly a week undergoing numerous tests as doctors and specialists worked around the clock to get him stabilized.
This week we will be flying him back to Kapi'olani Hospital for more testing and to undergo surgery.
As I sit here writing this, I am brought to tears. As his mommy, some days, if not most days, are REALLY hard! It is physically exhausting but most of all emotionally draining. My heart breaks each and every time. And while I've been reminded that I am "doing a great job," the truth is that I often feel like a failure.
Yet while I think my life is challenging, it does not compare to all that Nā‘ō endures each and every day.
The things we so often take for granted like being able to talk, eat, sleep, shower, brush teeth, change clothes, switch from task to task, is a daily struggle for Nā‘ō; even more heartbreaking is when his seizures and hypoglycemia add to these challenges.
As a mother of four, I try my best to be strong in the face of adversity. I try to save my tears for times that I am rarely alone, and I smile and put my best foot forward in hopes for a better tomorrow.
With the special needs and medical conditions that Nā‘ō lives with, I am his full time caregiver while my husband works to support our family.
No one signs up to have these challenges, so when they're dealt to you, you graciously accept it as part of God's plan. I am still learning, but one of the greatest things I have learned is that I am nothing without our Heavenly Father.
Sometimes we are pushed to a 'breaking point' not because we cannot handle but because it's an opportunity to humble ourselves and ask for help. In times like these, weakness can be a sign of strength. Together with our family we have and continue to do all that we can to give Nā‘ō the best chance at life possible.
Nā‘ō also has a five year old sister Nāwena, a two year old sister Willow and a little baby brother 'Aulani (in heaven). In preparation for Nā'ō's future, the majority of his care will be on O'ahu.
Our goal is to be together as much as possible because going through life apart is hard. To be together as a family first requires addressing Nā‘ō's medical needs so he can safely reside at home.
A glimpse into Nā‘ō's daily life...
On a good day, Nā‘ō's glucose levels are checked through blood pokes eight to ten times a day. On an unpredictable day, it's as frequent as every thirty minutes.
To minimize such frequent glucose checks, we would like to explore the option of a medically trained dog to be his constant companion. In doing so, this highly trained K-9 will be able to alert us before Nā‘ō has a hypoglycemic seizure episode.
There are many moving parts to ensure Nā‘ō gets the care he needs. Next week's surgery on O'ahu will require approximately a week long stay in the hospital before allowing us to fly back home to Kaua'i.
While Nā'ō's health is my priority, there is so much that weighs on my mind: making sure that our girls are cared for at home on Kaua'i, making sure my husband is able to balance his role as daddy and maintaining his job to put a roof over our heads, food on the table, and health insurance for our family. While he works hard to provide these necessities, unfortunately it is far more than we can bear.
Despite a full time job and paying monthly for optimum premium health insurance, sadly we still struggle. Majority of what is accumulated is out of pocket. I seldom ask for help so to find the right words to say is difficult.
Although my husband and I are doing all that we can, sometimes our all isn't enough and so I ask...I ask, that if you are able to give to our son, any amount given, nothing is too small, it will help us continue to provide Nā‘ō the health care that he needs and deserves to be able to live the best life possible.
If you are not able to donate, please know that we appreciate you just the same. Know that we are grateful that you took the time to take a glimpse into Nā‘ō's medical journey.
We want to thank you for thinking of our little hero and for keeping him in your prayers. It truly is humbling to be parents of a special needs child.
Young or old, no one is promised tomorrow. Hug your children a little longer and a little tighter. Never pass up a moment to tell them just how much you love them.
Your donation will help us rest assured that despite our financial limitations, Nā‘ō will never be limited in the care he needs.
No donation is too little--every penny is appreciated more than you know. We have faith that by small and simple things are great things brought to pass. It takes a village they say... and it is true!
Thank you for being a part of Nā‘ō's Village of Angels!
Ka 'Ohana Kau'i Naumu
Nouveau & Noe, Nāwena (5), Nā‘ō (4), & Willow (2)
- Kalei Beniamina
- Enoka Karratti
- chantelle Kane
- Pulelehua Cummings