The 5 Most Common Questions I Get as a Mother of a Child with Sturge-Weber Syndrome

What Happened to Her Face?

How I answer depends on the kind of day I’m personally having. The adult high road response which I try to achieve is to hand out a check it out card or to explain about SWS and birthmarks. If it’s been an emotionally charged roller coaster ride day due to increased doctor appointments, ER visits for migraines or surgeries, it might be a glaring stare or terse comment. I give myself permission to be imperfect and remind myself it’s not about ME. Of course, there are always those rare but funny moments when the person asking the question isn’t asking about her birthmark but the jelly dripping down her cheek! Nuf said.


How do you manage it all?

Again, the adult response is thanks to God’s grace and my family. The sarcastic side of me wants to say I have a GORGEOUS selection of tights and capes I pull out depending on the season and thank God I got an A in my juggling class! The truth lies somewhere in between and is the same as any mother - one day at a time.


What do you think?

Umm ... about what? I prefer focused questions not open ended to decrease ambiguity. If a doctor is asking me this question, on first blush I’m grateful they respect my opinion. In many cases, I DO know more than the healthcare provider because I’ve lived with SWS medically related issues for many years and studied up on latest research which they typically don’t have time to do outside their specialty. If an educator is asking me this question, same thing as above. Honestly, I would prefer, since they have expertise in teaching, to hear their thoughts first. If it’s a parent of another child with SWS, I usually say that each child with SWS is unique and so are their medical, social, familial and mental health matters. Worst and best part about SWS is the treatment or the answer must be tailor fit to the child and family.


What’s going to happen to her?

I don’t know any more than you know what is going to happen to your child(ren). We live in a world of unknowns as parents of a child with SWS. The SWF and our expansive network of support both medical and parental have enabled us to provide faster more responsive answers to concerns. The truth is, if I had let myself or do let myself ponder too long on this question, I’d dive headlong into anxiety until I put a hard stop to it by reminding myself God’s already there! Just exhale and take it one step at a time.

 

What is the best and worst part about living with SWS?

The best part is everyone knows you and your family! Let’s face it…pun intended…we can go anywhere twice and they remember who Kaelin is and who we are. The worst part is we have no choice but to watch Kaelin endure the onslaught of medical and social challenges and try our best to keep a chin up as we strive for answers through research. We also can’t go anywhere and just blend in. On the flip side though, the blessings have FAR outweighed the negatives…our lives are richer and we have been instruments for good.