A Personal Share About Unexpected Hardship & Unexpected Blessings
I feel blessed with many wonderful adventures with my family this summer, nourishing time with friends, expressive play, singing, dancing and deep connection at gatherings like Fairy Congress, beautiful mountain, forest and seaside camping and hiking, and solo excursions high into alpine beauty. All these things nourish and feed my soul. And I so enjoy the smaller adventures of daily soccer in the backyard with my son, watching the clouds drift across the sky, feeling the beaming glow of sunflowers, picking luscious berries, greens and now large zucchinis in our garden, dipping into our river, and making our annual applesauce. So much goodness, so much I am grateful for, and I have also felt a raw intensity inside – in my world, in our world.
Unexpected Hardship
This summer, my son had a scary health incident. He had been losing weight, and despite all we were doing, nothing was helping. By late July, I had the feeling in my body that he was peeing away his life energy, his substance. The next day, another symptom arose and we took him to his doctor. His blood sugar was high and he had high ketones in his urine. His doctor sent us to Seattle Children’s Hospital emergency room. There, Orion was diagnosed with Type 1 Diabetes (T1D).
With T1D, an autoimmune condition, a person’s pancreas stops producing insulin. And insulin is needed for sugars/glucose in our blood stream to enter our cells and therefore nourish all our tissues, cells, organs, and especially, for children to grow.
While this is highly personal and he is still thinking through what he’d like to to share this with his friends, I am sharing it with my community of adults, as it could be lifesaving. It also helps raise awareness about T1D, honors Orion’s profound pure heart, strength, wisdom, honesty and courage, and connects us in the realness of our lives. This life we have is not easy. And, even in the hard, hard times, I feel I and my family are showered with love, grace, support and life’s magical ways.
In Awe of Orion
This is a huge change for all of us. Even with all the tools, it is still a LOT. And the daily challenges are opening us to allow even greater love and compassion to flow amongst our family pack. I am also in awe of Orion. This diagnosis and daily care is significant for anyone, let alone a 6-year old child to take in. And it is a lot of pokes and shots, especially for a tactilely sensitive child. Even so, Orion has been participating from the very beginning in his care. Helping to prepare his needles, picking out low carb snacks, reading his blood glucose levels on his monitor, and…letting himself cry when he needs to, and knowing and receiving all the big love and support surrounding and enveloping him.
One thing Orion’s awesome medical team at Seattle Children’s Hospital told us on our first of two full days of diabetes education was that “you make diabetes fit into your life, not the other way around.” Technology and medicine has given us very good tools to help Orion and others with T1D thrive. And it all just takes a bit more planning and care (as well as access to good, affordable, quality healthcare).
With these new challenges/changes, many silver linings and unexpected blessings have also been shining through, and these, for me, highlight the magic in life.
Silver Linings & Life’s Magic
For example, Orion LOVES soccer (hence we play it every day together and he’s now on his first soccer team and LOVING it!). And one of the beautiful blessings in the second day at Seattle Children’s hospital was…Orion was gifted a bag, water bottle, scarf and hackie sack from Jordan Morris!! Jordan Morris is a profession soccer player with the Seattle Sounders. He has T1D and was diagnosed as a kid at Seattle Children’s Hospital (SCH). Now, one of the ways he’s giving back is he gives every child that’s diagnosed at SCH this special gift. And, he also hosts a free soccer camp each summer for these kids! Wow! This was/is incredibly special and meaningful for Orion.
I’ve also been blown away by the amount of support of dear friends, family, including some of our local friends with a child with T1D. They’ve been walking this whole diagnosis into transition of lifestyle with T1D side by side with us.
And I’m in awe of the local and nationwide advocacy groups, such as Breakthrough T1D, an advocacy and research group dedicated to finding a cure and for supporting kids and families. Within our first week at home, they sent Orion a Teddy bear named “Rufus” who also has T1D (there’s a whole app with interactive stories and ways to care for Rufus :-)), a helpful info and resources packet for parents, and I also received a text from a T1D ambassador, another mom who’s 6 y/o daughter has T1D who reached out to offer support. Another amazing advocacy group, Children with Diabetes, recently helped me as well, where the Chief Operational Officer hopped on a Zoom call with me for 45 mins sharing some key tricks, tips and experiences as a mom of two kids with T1D and from her work as an advocate. Amazing! I am so very grateful.
A Special Long-Time, Long-Term Magic Blooming Now
And, in addition to the showering of love and care from our family, friends and community, I am particularly deeply touched and amazed at some long-time, long-term magic happening in my life that’s been in the background, and now is something I’m only starting to comprehend the breadth and depth of its magnitude. I am so very grateful to/for my Mom.
While growing up, one of the important career contributions my mom made was she was an advocate for diabetes care. Because of her work and that of her team of dedicated colleagues, insurance companies are required to cover diabetes care and supplies, including testing strips, glucose monitors, insulin and our very important two full days of diabetes education, and follow-up visits with Orion’s team of endocrinologists, nurses, social workers and dietitians!!
My Mom was one of a team of people who advocated for this in Congress, joined kids in walking the halls of their legislators’ offices in Washington D.C., and gave presentations to high level insurance executives showing and convincing them that covering these critical, lifesaving and necessary supplies would actually save them money. It is largely thanks to her that we have the access and coverage we do today for all of Orion’s life-saving and life-enhancing technology and supplies.
Isn’t this amazing?! Without her and her team, I really don’t know how we would afford Orion’s care needs. This is so so amazing and such a huge, profound and unexpected blessing!
When working, many people asked my Mom if she had diabetes or if a family member did, as she was so passionate about it. She would smile and say no, but that she loved her work and it made a difference. In addition to the millions of lives that have benefited, little did she know then that her work would make such a profound difference in the life of her grandson.
I am truly so very grateful. Thank you, Mom. And, thank you to the Magic of Life.
