My Worst Fear

All week long, my heart has been breaking for a mom named Kate Leong, with a son named Gavin, whose blog I have been reading for some time.

Gavin has always reminded me of my Ari.  Gavin and Ari are similar in extraordinary ways, not the least of which was their age, their mixed Asian heritage, their diagnoses of premature birth, enlarged ventricles and Cerebral Palsy; their twin status (Gavin lost his twin in utero), their history of terrifying febrile seizures, their likes and dislikes, abilities and struggles, and the astounding way in which they manage to light up a room and capture the hearts of others wherever they go.  I have always felt that Kate and I were somehow linked, and this is why I followed her blog and read her story.  I do not know her personally, beyond this. 

Something that is challenging to explain to people who aren’t a part of the special needs community is that as many amazing friends as I am so blessed to have, there is always a piece of my life that I feel is not completely understood. I long for the sense of community and likeness and complete freedom from judgment or comparison that I feel when I know that there’s another mom out there who is walking my road.  This understanding I receive when I visit the world of Kate Leong.  She has given me a sense of companionship and sisterhood that is hard to come by, much less in a complete stranger who lives on the opposite side of the country. 

Well, one week ago, little Gavin died.  Without going into the details, suffice it to say that Gavin suffered a seizure, went into cardiac arrest, and never recovered. I can’t tell you how deeply affected I am by this occurrence, and I don’t necessarily even want to.  That wasn’t the intent of this post.  But last night, Kate did it again… she wrote my heart out.  What she wrote was something maybe only two people know about me.  When I read it aloud to Jake, barely able to talk as I was choking on the knot in my throat and trying hopelessly to fight back the tears that were already streaming down my neck, I felt my thoughts and emotions welling inside; but I said nothing besides reading what she had written.  When I finished, Jake said, “That sounds like you,” and he was right.

My Worst Fear – Kate Leong

I just want you to know that "something happening" to Gavin was always my worst fear. I feared that he'd get hurt. I feared that he'd be overlooked. I feared that I wasn't getting his teeth brushed well enough when he'd fight me. I feared that someone would say no when I asked for anything to make Gavin's life easier (luckily I rarely heard no). I feared that his fragile left eye that survived the severe corneal abrasion would tear again. I feared that he'd choke - or aspirate on bath water when he insisted on putting his face in the water. I feared a repeat febrile seizure after last year's seizure that Ed and I both described as the scariest moment of our lives. I feared that we'd die without us having something in place for him - someone to take care of him.

I took some criticism along the way. I was a "helicopter mom." "Overprotective." "Dramatic."
I'm not gonna lie - I'd like to punch those people in the arm right now.

Today I got through Gavin's first three years and lovingly chose photos to display at the services. My sisters helped assemble them on display boards. I struggled through his memory box pulling out tiny hospital bracelets and special keepsakes. Miss Sara took Brian to my wonderful friend Patti's house for a playdate with her twins. A co-worker of Ed's brought dinner. And then Miss Sara and I went to the mall to find me something blue to wear for Gavin's funeral. I was sleepwalking.

Now I'm home - in bed - listening to the pouring rain pound my window. It's like the Heavens are giving me permission to grieve.
And so I do.

"Something happening" to Gavin was always my worst fear.
But I never imagined he'd suddenly die.

For the last five and a half years my identity has been wrapped up in him... in protecting him... in fighting for him... in my fears for his safety and well being and his future. But in the end, I was helpless and useless. There were no letters to write, appeals to begin, strings to pull. I couldn't help him. And he died. My very worst fear.

Tonight I feel like it will rain forever.

My heart reaches out to the Leong family, and especially to Gavin’s mommy Kate, as they attempt to grieve and cope with the worst thing any mom could ever be asked to endure.  I marvel at how she’s getting through the day.  I know that I could never, ever handle what she is handling with even a fraction of the grace.  I am certain that I would shatter into a million jagged pieces.  I hope she somehow finds comfort and peace and healing, but I also pray that she gives herself continued permission to grieve. 

“Grief is not a sign of weakness… it is the price of love.” – author unknown