What I've Learned Living with Sturge-Weber syndrome and Birthmarks

To expect the unexpected…and express more cliches needed than I can count to get me through the day!

Seriously, 31 years living with Sturge-Weber syndrome (SWS) and my daughter diagnosed at birth (with a very large facial port wine birthmark, double glaucoma, seizures, depression and intermittent anxiety) have made me become a Warrior Mama. Life with SWS and birthmarks has caused painful moments which end in pity party sob-fests and delirious moments of celebratory weeping for joy. I think life with any rare disease makes us cherish the little things more than the average bear! It can also magnify what are just age appropriate behaviors, family issues and the usual life challenges because, rarely do we get to let our guard down like a “normal” family can.

I’ve learned that if strong family and emotional foundations are not present when the diagnosis is made their will be fissures and cracks that emerge that can erode the crucial foundation needed to sustain us throughout life. SWS has taught me to be an educated advocate for my daughter and family. Early on my gut instinct told me that our family lived with what did or did not happen for Kaelin medically, educationally, socially, etc. It was my honor to be her advocate and to teach her to be her OWN advocate as soon as possible. I believe “teachable moments” are all around us and to always be open to being the student or the teacher in any given point in time.

I’ve learned that self-care is necessary to be able to bear the unexpected and carry burdens both real and imagined. It doesn’t mean I’ve always created space to do so or in an appropriate manner! The point is to not feel guilty if you’re just “gived out” and need that lil’ pity party, bubble bath, etc. Do as I say not as I didn’t do or as much of as I needed to…ask for help. Give yourself permission to not have all the answers or opt out of the lead advocate role.

I’ve learned that in the blink of an eye you will have reached the other side of life with SWS and birthmarks and realized how much you missed and want to do over! I have forgiven myself for not being mother of the year or millennium. I yearn for more parents to take up the banner so I can have respite from the front lines.

I am grateful for the inspirational children diagnosed with SWS who by their very courageous presence in our lives show us what is important in life. I cherish the families who unite against our common foe. I’ve learned this too shall pass and to exhale. I’ve realized I am forever embedded in the lives of those who followed me and those to come…not a day goes by that I don’t think about your struggles, cheer on your celebrations and try to honor the journey you too are taking with SWS!

Hang in there!

With faith, hope and love,

Karen