I have realized a bit-why I have been “struggling”. I think part of it has been my narrative-writing and sharing my life story with a group of people, and…the Pepsi voting. It is normal for me to sort of emotionally “crash” after an event. I mean, I am so overwhelmed by people’s love and gratitude. God wired me to handle things differently. I am fine at the event and have no problem sharing our story. In fact, I like it. I like sharing about Jayden and Brooklyn like any other proud parent and I like people being educated about Sanfilippo and how they can help. It makes me feel like a good mom to share and I love people wanting to know. But, a few days later the reality of what Sanfilippo means for my babies hits me. I wasn’t just educating people or telling wonderful stories about my children, I was describing how they will die. How they will become mentally absent. How they will need feeding tubes and I will be feeding my 10 year old, baby food and changing his diaper. My Jayden. My Brooklyn. When all is said and done. I go home to Sanfilippo and the reality that this deadly, silent intruder is still in the corner waiting to take my babies. MY babies.
Events thrust us into the spotlight. People’s status cries out for our kids. I see my face as someones profile pic. I see pictures of other Sanfilippo families, some in hospitals, some of children that have passed….It is so hard to look sanfilippo in the eye for a night, let alone exist in it for a month straight. I am sun burned a bit. Don’t get me wrong. I want all this. VOTE VOTE VOTE! keep my pictures out there and keep updating your status and tell your friends. It is possible that with your vote, a treatment or cure could come in time for my children! Whoo Hoo!
But-it is living in these two emotional worlds that is hard. I have been trying for days to say something profound so I can write it on my facebook and it would cause thousands to repost and tell everyone…………….but I guess I am not that sly!
But today, Jayden did something profound that speaks louder than words. Here is what soul we are fighting for. A soul that we want around longer to bless this world. The soul of my baby boy.
Every day, Jayden gets a notebook home with the teacher’s report about his day. This is very helpful because Jayden can’t communicate about his day beyond, “my dad”. 🙂 Here is what his notebook said today:
I heard a story about TWINKLE TWINKLE LITTLE STAR
I learned about PAINT AND GLITTERED A STAR
My teacher was so proud of me for GETTING MY OWN SNACK AND DIPPING MY PIZZA IN RANCH
I played with CARS, BLOCKS, KITCHEN, SNOW (IN THE CLASSROOM) and LOTS OF FRIENDS TODAY 🙂
Today was special because I TOOK CARE OF A SAD FRIEND
WHEN A FRIEND WAS CRYING JAYDEN WENT UP TO HIM, TOUCHED HIS HEAD AND WAS TALKING TO HIM. HE SAT DOWN IN FRONT AND WAS TALKING 🙂
JAYDEN WAS DANCING AND SINGING.
Does it get any better than that?!
Jayden- Mommy loves your gentle soul and your freight train body, Big man! Don’t ever loose that, buddy!