We were living a simple life with our five children in the solar capital of sunny California. I was an advocate for solar oven cooking. Our children were enthusiastically involved in cooking nourishing meals with the power of the sun which is quite bountiful in our valley. Then in an ironic twist of fate, our youngest son, Oliver was diagnosed with Xeroderma Pigmentosum (XP), a rare genetic disease that affects around 250 people in the United States and 1000 worldwide. XP prohibits Oliver from being exposed to the sun, more accurately ultra violet rays (be they from the sun or artificial lighting). To know that something that is as life-giving as the sun can just as easily take away the life of our son was devastating and almost cruel when we first learn ed of Oliver’s diagnosis.
However, through our faith and the graciousness of family, old and new friends, we will endeavor to give Oliver the fullest life that he deserves and continue to utilize the sun to our utmost advantage. Afterall, something can only become a true enemy if you plan on letting it defeat you. And in time even a foe can become an ally.
I have often been asked to blog about how I live a more natural family life and about the how to’s of solar cooking. That blog never made it past a few posts. My hope with this new blog is that I will be able to chronicle Oliver’s new normal coupled with a sporadic solar cooking blurb and how these two world’s collide yet can co-exist together. My husband and I are truly grateful for the XP Family Support Group and all the new members of this ‘XP Family’ who have welcomed our family and lent their support. We are grateful for the resources that have been given to us, and grateful for the phenomenal doctors who have so compassionately cared for our sweet two-year old. We have learned that instead of having to live a life in darkness, that with the right tools and preparations with weather permitting, Oliver can do most of the things we have always done as a outdoors family that loves to travel. This blog will chronicle our daily struggles of having a child with XP and how we cope with the eventual skin cancers that will arise. We will also be chronicling our night-time adventures, when Oliver is free to wander the dark and play under the moonlight without the bonds of layered sun clothes, layers of sunblock or having to wear his special hood.