I cashed in all my frequent flyer miles to attend one funeral. There were three that weekend that I know of.
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| Kirby |
I mentally prepared myself Kirby’s service. I wasn’t going to let it bring me to a whimpering puddle on a hard pew. Kirby’s older sister Maggie, gave an eulogy that could have destroyed my emotional wall of self preservation. It’s been a few weeks since the services and I’m ready to reflect.
Maggie told two stories about Kirby that resonated within me. Maggie a sibling and me a mom, I still made the connection at the same level.
Maggie was a bug girl she loved searching for bugs: collecting them, analyzing them, adoring them. This was her thing, so much so that her nickname was bugs. Family vacation came around a camping trip, Maggie’s bug paradise. Maggie’s first find was a scrumptious, brightly colored, fat and furry caterpillar. It was also Kirby’s first smash.
Life just isn’t worth living if you can’t give second chances.
A few years later Maggie and Kirby are at the zoo with Kirby’s caregiver. The caregiver suggested a trip through the exotic and rare butterfly exhibit. I feel Maggie’s inner warning… this could be a really really bad experience or it could be magical.
I imagine what’s going on in Maggie’s head. She’s listening to the debate bouncing from shoulder to shoulder. Who's talking now? Is this the devil or the angel?
Left side: “Oh but it will be beautiful, you will love it, Kirby will love it. A memory that you will have forever, a sisterly bonding experience. It’s such a beautiful day anything bad that could happen will be outweighed by the good.”
The other entity on the right shoulder say’s: “Remember what happened last time? You thought the same thing.”
The other voice: “But it’s been years, Kirby has matured. Give her the benefit of the doubt! People change. Kirby used to love bananas, now she hates them. It will be fine, what’s the worst that can happen?”
Putting myself in Maggie's shoes and reasoning to myself: I know that Jonah is safe, no sharp edges to fall on, or cliffs to fall off of, and no ponds to jump in. Furthermore, I can probably stop Jonah from grabbing a butterfly, they’re fast and can fly away. I’m assuming that there won’t be any caterpillars creeping around where Jonah would notice them. Check the boxes: Jonah is rested, he is fed and he doesn’t have to go to the bathroom.
Worst case scenario Jonah runs through the exhibit without admiring it; pushing past people who give us judgmental looks. We’re good, it will be fine you tell yourself.
Unfortunately for Bugs and her bugs, there were caterpillars within smashing distance. GAME ON! Must-smash-all-caterpillars at-all-cost! BTW there is no cost for a Sanfilippo child, it’s the same for the Incredible Hulk. See bug smash bug. Go ahead and try reasoning with The Hulk, I'll meet you at the car.
In closing Maggie said that the rare butterflies became even rarer that day.
Bummer.
Lead with comedy and follow with a tear jerker. Kirby’s thing was to sing the Barney song at meal time. Breakfast, lunch, or dinner, at home or in public. Everyone gather around the table, hold hands and sing:
I love you, you love me
We're a happy family
With a great big hug
And a kiss from me to you
Won't you say you love me too?
I love you, you love me
We're best friends like friends should be
With a great big hug
And a kiss from me to you
Won't you say you love me too?
The mourners shyly broke into song, it was deeply touching. It’s impossible for me to not vision Jonah’s services. For Jonah’s day, all together now!
We all live in a yellow submarine
Yellow submarine, yellow submarine
We all live in a yellow submarine
Yellow submarine, yellow submarine
And our friends are all aboard
Many more of them live next door
And the band begins to play
We all live in a yellow submarine
Yellow submarine, yellow submarine
We all live in a yellow submarine
Yellow submarine, yellow submarine
I offered Sue my condolences and she hugged me tight, surprised and happy to see me. I introduced myself to her friends and family members as just another Sanfilippo mother inspired by Sue. All the Sanfilippo parents in attendance introduced themselves the same way. It was a theme. My feelings hurt, I thought this is going to be me. Meeting parents that I had never met in person before, greeting me with a open armed hug and thanking me for all my hard work. I was ready then to go home and hug Jonah. This isn’t supposed to be how it goes. Parents should not have to mourn their children.
I haven’t dared to scroll through FB and count how many children have died in the last 8 weeks. I personally saw two and that was enough. Rumors were flying that we lost 9 Sanfilippo children. Winter hasn’t even hit yet. What constitutes as an epidemic? If 9 kids died in a few months time of e coli, what do you suppose would happen?
The second child that popped up was Ross. Ross’s parents posted a picture of their beautiful sleeping son, his checks were flushed and I could feel the heat rising from him. Other then that he looked healthy. His parents said the door was open for friends and family to stop by, to say goodbye. Ross was 11.
The previous day we attended a fundraiser for Connor, Connor was diagnosed at 10. A client of Connor’s dad mentioned that his son was autistic, but that wasn’t the umbrella disease. He had recently had genetic testing and found that he had a rare disease. This conversation made Mike think about his own son, he was inspired to ask his doctor for another panel of tests for Connor. MPS IIIC came back this time.
Jeremy and I told Jonah that we were going to my friends party and there would be lots of kids. He asked if any of them were his friends. We told him that Connor was his age and the he’d be his friend. There were a ton of people at the party when we arrived.
Jonah watched a heard of kids running hard and shooting each other with nerf guns. Jonah the tentative lion, eyeballed each kid in the heard searching for the weakest one. A boy Jonah’s age broke loose and walked into the club house. The kid wore glasses, Jonah sniffed him out. “Are you my friend?” Jonah asked.
The boy looked at us, smiled and shrugged his shoulders. With prompting Jonah put out his hand and introduced himself. We all made small talk until the boy with glasses noticed the nerf gun. He grabbed it, reloaded and politely excused himself. Jonah shook it off. We found a board game and two younger players to join us.
At school Jonah has found his tribe, zebras in a heard of their own. Jonah has learned to identify his tribe by their stripes: hearing aides, talkers, walkers, and glasses. Limps, diversions, scars and sweet slanted smiles. These are a few of our favorite things. When Jonah enters a new grassy field he searches for his zebra friends.
I had every intention of posting a blog before World Sanfilippo Day, which was November 16th but that didn’t happen! I’m feeling terrible about that, please mark you calendars right now for November 16th. That will make me feel better. Check out this link for more information, there is a cute picture of Jonah on the landing page. https://curesff.org/worldsanfilippoawarenessday/world-sanfilippo-awareness-day-for-families/
Time just got away from me. Last week I ran to D.C. for an FDA workshop and from there I flew to TX to visit a clinical team at UTSW. Hopefully I can get that blog out.
GIVING TUESDAY is TOMORROW! Time flies. Please donate and help us save our kids. You can donate on the link as well.
This blog is dedicated to Ross and Kirby. As I mentioned several other Sanfilippo children have passed over the past two months. Please forgive me for not seeking out the names of these children. They are in my heart. For me to function and to continue to fight the fates of the living I must protect my mental well-being. I can’t cope when I see all the faces of our children dying one right after the other. I’m useless to our community when I fall into despair over all the deaths.
Happy Thanksgiving,
Jill
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| Ross |
