There are SO many parents that I have met- they inspire me to do more, be more and learn more. They also ignite a passion in me to give more… only there isn’t much to give these days. What I do have is you, Reader, and your power.
Power? Yes. You have the same power I do. Social media, email, word-of-mouth. You have compassion in your hearts and some of you have stories of your own. Ones you want to share, make right, or dreams to fulfill and gifts you want to share. In the following words I will share with you a story of love and a journey of healing from a family I’ve become close to via social media.
This story will be brief- I hope you follow the links to learn more- about Heather and Zane’s journey with their third child, Cooper. Cooper’s battle began in the womb, where Heather was tested for a number of scary Trisomy issues as well as dwarfism. She writes about that HERE. In August Heather and Zane learned that their new son had ACHONDROPLASIA. While Cooper’s BIRTH was a joyful moment, his struggles began early, with the BILIRUBIN BATTLE. All the while, Heather and Zane were doing everything they could to have Cooper home and all that was happening were more tests and nights admitted! Frustrating and scary are just some of the emotions they felt.
The fears intensified when around 4 1/2 months Cooper went on a big doctor trip (similar to Addie’s Delaware trips) to the children’s hospital a few hours from home. After a sleep study showed moderate apnea, Cooper was put on oxygen and pulse oximeter to measure his oxygen levels as he slept. This interrupted his normal sleep-through-the-night pattern. Then, an MRI, which showed severe narrowing of the C1 vertebrae and foramen magnum and fluid in the head, prompted the neurosurgeon to be alarmed. Lastly, the ENT was disappointed in the amount of ear infections Cooper had been having, but preferred to meet as a team before proceeding with any surgeries. Needless to say, Cooper’s TRIP was rather alarming for the whole family!
Cooper does a lot to keep up his strength, including his participation in Early Intervention. Cooper is in Physical Therapy, Occupational Therapy and Speech. Did this keep mom and dad on their toes? You bet, but Cooper was prevailing! Then, in December of 2012, Cooper went in to have decompression surgery… Check it out HERE. Just reading about the day of surgery makes my heart ache… but Cooper did GREAT! He recovered well, and was on his way- at just 3 days post-op he was rolling around like his happy self. His dwarfism related issues seemed to be mountains he was surpassing and just whispers of don’t worries in his toddlerhood travels, but there was a looming issue of kyphosis on his doctors’ minds.
At just 15 months, Cooper is destined to be in a brace. Kyphosis is a curvature of the spine that can cause bits of the vertebrae to break off and even fuse. This is painful and restrictive and can cause permanent damage of the spine that he would be living with for the rest of his life. To prevent such drastic issues, many doctors work to find a solution while the spine and bones are still flexible. In Cooper’s case, a brace. Sadly, this comes at a hefty price during a downturn in Heather and Zane’s lives.
Zane recently lost his insurance, which means the cost of the brace, coming in at a whopping $8,000, needs to be paid out-of-pocket. When I read this, it brought be back to the first time I spoke with the billing office regarding Addie’s sleep study. $6,800+ needs to be paid-in-full before you check in… Is there a discount if I pay in full?… Yes, it will be $6,000. Addie has had more than one sleep study. Reading the words pay-out-of-pocket have a new effect on me, as though I was one of Pavlov’s dogs, I begin to feel a reaction. Nausea. Sweat. Fearful I cannot provide for a child. My child. Any child. What child needs to grow up in pain when there is a simple solution?
The answer is no child. Not one. An $8,000 brace is a blip on the radar if we could all spare our coffee money for one week. Not get a manicure, or even skip purchasing that one indulgence at the grocery store. Heather and Zane have taught me a lot about PERSPECTIVE and how blessed we parents are to have children who are so special, so loving and yet, yes, so needing. Kids who are so independent, but need more than others teach us to expand our horizons, give way to new leadership and guidance, become more creative in our parenting, and grow up. Yes. Grow up. Sometimes we need to ask for help… this is one of those times. Not for Heather, Zane or me. For Cooper.
I ask you, Reader, please check out THIS LINK and share, share, share, write a letter, send an email, or- if you yourself have the means- donate to this sweet boy. I cannot thank you enough for taking this trip into another life with me. Cooper and his family are a wonderful example of the power of belief and a true testament to love.