Because we have a son with SWS, Lawrence and I have become apart of the Sturge-Weber Foundation . We receive a newsletter from them a couple times a year called, Branching Out. In it's most recent publication, there was an article entitled, "Perception vs. Reality" written by Rhonda Finley, mom of a child with SWS, Ryan. I wanted to post it here as I felt it captures so well how Lawrence and I feel about our lot with Judah.
SWF [Sturge-Weber Foundation] Partners were asked to send us their observations and experiences on the perceptions the general public, friends and acquaintances have revealed to them and how it matches with the lives they are living.
One thing I hear a lot is "Wow...I don't know how you do it. I could never handle a child with so many disabiliites. I couldn't do it. You must be so strong. " My standard answer is something like, "I didn't have this child because I'm strong. I became strong through my child. And guess what---you too would become strong if he were your child. It's not a choice; it's a responsibility driven by a powerful love."
It's amazing how, as a parent of a child with SWS [Sturge Weber Syndrome], KTS [Klippel Trenaunay Syndrome] and PWS [Port Wine Stain], we learn to be very assertive, deal with adversity, almost on a daily basis (every time you take your child to the grocery store for example) and become the advocate you never thought you could. We were forced out of our comfort zones, stepped out of our protective coating and learned how to deal with the world as it comes at us, sometimes it's hard and fast and it hurts.
The decisions we face are no less than surreal--do we increase the medication, change a medication or is it time to cut some of our child's brain out?* Will that help? Will he survive? How will this affect our lives? The funny thing is no one can answer those questions. At the same time, we learn how wonderful life really is. Each step, every word, all the laughter and smiles, the hugs and kisses, the normal challenges of everyday things---these things are special. I believe we have an increased awareness and appreciation for what most people take for granted. This is what I would tell the public.
*a hemispherectomy is the removal of a part of the brain which is done in SWS patients whose seizures are uncontrollable otherwise and for whom the benefits of such a surgery outweigh the risks. Thankfully, we have not had to come close to facing this possibility for Judah as he seems to have no brain involvement to date.
As challenging and exhausting it can be to care for Judah at times in regards to his SWS, we give thanks that it is not as hard as it could be. God has shown us much mercy; nevertheless, what we do face has produced in us a greater appreciation for all we see Judah and our other children learning and accomplishing. We have only to give thanks.
2 comments:
What an awesome description that mom gave...it is encouraging in its love. Thanks for sharing it, love, gretchen
As another SWS parent, I agree with your comments. I too am often confronted with the "you must be so brave" comments.
In my opinion bravery is when you purposely take a course of action - we did not choose to have a child with SWS (and a handful of other medical issues). However, having being handed with these adversities, I do what I can and fight the daily battles to make my son's life as full as possible.
I also agree that through my son's eyes I see much more than a "normal" parent would see. The small gains and achievements have much more meaning. A normal parent can never understand the simple joys of a contented moment with our SWS child.
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