Back to School

Our teachers and students begin to go back to school tomorrow.  The district operates a staggered-start schedule so Angie and Josh will have their first school days later in the week.  Tonight my mind is on the upcoming school year and what it will bring for our family.

The professionals on Angie's IEP team (I think there are about 12!) have spent hours preparing her program for the year.  With the wealth of information we gained at the conference this summer, our efforts are refocused.  The team has been tireless, researching at home, asking questions and suggesting creative ideas of what might work best for her.  We could not ask for a more committed, involved team and we do not take our good fortune for granted for a minute.  Angie's education and her safety are in good hands.

So why am I so anxious?  I cannot remember if this is normal for me at the beginning of the year or not.   I am grateful for all I have learned about the needs of children after hemispherectomy surgery this summer but I also have a new awareness that Angie is not "out of the woods" and she never will be.  While the surgery has certainly given her an exceptional quality of life, that could change at any moment.  I realize now, that I had become complacent, even cocky, about her condition.

Too many children continue to lose their lives to Sturge-Weber Syndrome and each tragic event is terrifying and heart-wrenching.  Many of them had well-controlled seizures before they passed away suddenly.  Recently, a child we met at the conference this summer had a serious seizure after over 7 years of freedom from seizures.   Another child underwent craniofacial surgery this week after his skull began to collapse.  Serious complications can occur even 30 years after surgery.  We are never "out of the woods".  What was I thinking?

Last night, Angie suffered a fall in her bedroom which resulted in a large knot on the back of her head where she hit her headboard.  She was alone when it happened and she does not know how or why she fell.  I am fighting myself to not think the worst about her fall-that it could have been precipitated by a seizure.  I am making myself crazy, I know.  I know.

So now what?  I cannot stay here for long or I will make myself crazy.  Transitions are always hard for Angie so I am prepared for a tough couple of weeks at the beginning of the school year.  She will need extra support.  I have to shift my focus to all we have to be thankful for and try to leave my anxiety behind.  Gratitude has to be the answer.  And I am grateful so grateful, for all of you who help us to celebrate Angie's victories and also support us through the hard days and nights.  Grateful for 5 years without a major seizure.  Grateful for a child who has taught me to appreciate the miracles around me.  Grateful for wonderful people in Angie's life who are committed to loving her and protecting her when we are away.  Grateful. So grateful.