Vascular Compression Syndrome Awareness

When I discovered December was Vascular Compression Syndrome Awareness month, my first thought was...Ugh, it's December, the holly jolly month. But as our family all too well knows, these syndromes, their symptoms, and the hell they wreak NEVER take a break. Over her twenty-one years, I have begged, bargained, and pleaded. Still, her birthdays, school events, Halloween, our birthdays, vacations, Thanksgiving, milestones, Christmas, and every other day in the calendar year have been affected.

The first time you hear the words, "It is better to have a thin child than one who is obese," you cringe. The third time you hear those vile words, you find there is nothing charming left within you to give. When doctors refuse to listen, you learn to push harder. You learn to be blunt because you only have fifteen minutes to make this doctor comprehend what your child lives through every waking and sleeping minute of her life. In those fifteen short minutes, you also know if you will or will not agree to visit that physician again. Doctors are no longer given carte blanche respect or trust because the letters MD follow their name. Respect and trust are only earned by them listening to your child, changing her life, and ultimately saving her life.
When a friend tells you, "Maybe you shouldn't look for things that probably aren't there," you feel your circle shrinking. A sense of gratefulness washes over you for the clarification of who your people are in this fight. You verbally spar with teachers and principals who refuse to comprehend why your daughter needs six weeks off of school after her life-saving surgery.
As your daughter groans in agony, whispering in the wee hours of the morning, "Mom, I'm scared. I feel like I am dying," you comprehend there is nothing dramatic about her words—only an honest plea for help. You feel fortunate that one of the world's best children's hospitals is in your backyard, finding a strange level of peace in your home away from home. All the while wishing you had never had the opportunity to peer through their stained glass windows. You adopt the mantra, "I don't leave until you leave," because the only thought worse than what your daughter is experiencing is the idea of her experiencing it alone, without someone to advocate for her. Never are there more proud Mama Bear moments when she finds the strength within her voice while advocating for herself. Hope waxes and wanes as you continuously cling to the most minuscule trace because giving up hope means giving up on your child–and that will never be an option.
Jayde-Rhiannon has four of these six compression syndromes. She did not magically wake up one day sick. She was born this way. We have spent her life fighting with countless physicians to see the invisible within her. A lifetime passed before Jayde heard the words, "This is all very real. This is not all in your head."
To the many VCS patients and mamas who have become friends and allies in this journey, we see you. We love you. 💜💚💙💛


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