May has always been the month of awareness for the Sturge-Weber Foundation. Sturge-Weber (SWS) is what Jeremy was born with that has consumed our lives since October 27, 2000. For those of you who may have never heard of SWS chances are you've seen someone with a Port Wine Stain (birthmark) & they may have had SWS. Not all SWS angels have visible signs but a lot like Jeremy will have a large birthmark. Jeremy has made me as a mom more patient then I ever thought possible. Patient with doctors who have no idea what to do for him in a crisis, patient with nurses who ask a hundred times what medicines he is on & why. Patient with the lab techs who have a hard time finding a vein- even though usually I am very nicely with tight lips saying no more pokes! More patient as a teacher as I learned how to teach a child whose development was delayed with every seizure that gripped his small body. It has also made me grateful.
I am grateful to be this amazing little boys mom. A boy who see's his cup as half full never half empty. A little guy who never cares if he has seen something a hundred times before it always looks new & exciting to him! He has opened my eyes up to all our blessings & not our short comings. In his eyes I am superwoman & his dad is his hero. He tolerates medical tests that most kids would scream & cry over . He takes medicine better then most adults. He has his moments when my patience is tested to the very end then he smiles and hugs me with his little arms and I melt. I'll never know why God blessed us with Jeremy & SWS diagnosis but I can't imagine not having him our lives.
With that said please take the time to go look at the Sturge-Weber Foundation website. Learn a little more about living with SWS. There is NO CURE only the hope of making life better for those with SWS. Research is critical as know one knows the cause of SWS. Only that it happens at 18 - 20 weeks gestation in the womb. Money is vital for the funding of that research so if you feel called to donate in Jeremy's name then please feel free.
Our main goal is for when you or anyone see another person with a PWS or having a seizure to not make them feel isolated. They are just like you & me. They want the best life possible that they can lead. Be their friend and help them if they ask for help. Jeremy may not be big in stature but his heart is as big as the ocean as he always says.
My EFMP Angel : Link to a little more background on Jeremy. Just sharing a few pictures of my guy & his new favorite video. He makes us play it on the TV all the time now because he loves Banyan. Sturge - Weber is ever changing my son's world. We will help spread the word so maybe one day the research will help make his life better.
10 months day before his second seizures that landed us in the Colorado hospital for almost a week.
3 years old playing at the Children's museum with is favorite thing trains!
My favorite picture of Jeremy with my dad. He loves with all his heart everyday. His hugs are the best hugs in my whole world.