Because Cake.

28 Mar 2019 04:27

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<p> <span class="pibfi_pinterest &lt;img class=" aligncenter="" size-large="" wp-image-15738"="" src="" alt="2015-06-20_1434764361" width="570" height="570" srcset=" 570w, 150w, 300w, 100w, 580w, 640w" sizes="(max-width: 570px) 100vw, 570px"></span><span class="aligncenter size-large wp-image-15739" onclick="gaTracker('send', 'event', 'outbound-article', ';pg=team&amp;fr_id=1080', 'Walk to End Epilepsy');" target="_blank Walk to End Epilepsy]. &nbsp;A wildly successful fundraiser that has raised over $13,000 in the two years and SO MUCH support.&lt;/p&gt; &lt;p&gt;My People know how to rally. &nbsp;This is certain.&lt;/p&gt; &lt;p&gt;“I’m not doing it this year.”&lt;/p&gt; &lt;p&gt;“What? &nbsp;Why not?”&lt;/p&gt; &lt;p&gt;We talked some. &nbsp;He told me he’s seen a difference in me lately. &nbsp;Did I need to go talk to someone? &nbsp;He said that he thinks this year’s road blocks and constantly changing seizure patterns are affecting me. &nbsp;I told him, that day, that he was crazy. &nbsp;I was fine. &nbsp;I just didn’t feel like doing it. &nbsp;Something about a full plate. &nbsp;No margin.&lt;/p&gt; &lt;p&gt;But he’s right.&lt;/p&gt; &lt;p&gt;It’s been a hard year. &nbsp;A gloriously good year too. &nbsp;No doubt. &nbsp;But epilepsy has kicked our butt&nbsp;this year. &nbsp;It has always brought with it restrictions and changes and The Things We Cannot Do. &nbsp;But this year we also cannot be near water. &nbsp;Something about the way the light flickers. &nbsp;We aren’t sure how sensitive she is to it, but either way, it doesn’t matter. &nbsp;We must Avoid. &nbsp;We can experiment next summer, once meds are stable and we’ve hopefully given her little body a break. &nbsp;I prefer baking soda and vinegar volcano experiments thankyouverymuch. &nbsp;Those don’t end in 911 calls and ambulance rides if they fail.&lt;/p&gt; &lt;p&gt;Facebook was hard this summer. &nbsp;So many photos of lake trips and pools and beaches. &nbsp;I wasn’t angry for those who posted, and surely I wasn’t so self-centered as to think they shouldn’t post them lest they offend me. &nbsp;But each splashing photo stung. &nbsp;Every goofy smile in bright pink goggles and neon orange arm floaties hurt. &nbsp;Jealousy. &nbsp;Daddies catching littles jumping in mid air. &nbsp; Anger. &nbsp;Cannon balls and inner tubes. &nbsp; Some bitterness to round out the ugly bunch. &nbsp;I wanted to type in big all caps letters “DON’T TAKE THIS FOR GRANTED. &nbsp;BE SO THANKFUL THAT YOU CAN PLAY IN THIS WAY.” &nbsp;But I never did.&lt;/p&gt; &lt;p&gt;A friend of mine, after asking where we were headed the next week said “Wow. &nbsp;Disneyland again?! &nbsp;You guys really like that place!”&lt;/p&gt; &lt;p&gt;And yes. &nbsp;We absolutely do. &nbsp;Disneyland IS truly our jam. &nbsp;We love its hot, crowded Dole Whip slinging guts. &nbsp;But this summer, it was our only choice. &nbsp;Hiking, camping, biking, lake trips, beaches, anything with a pool…the kid can’t even take a bath. &nbsp;We must be within 15 minutes of a hospital. &nbsp;We cannot have water play. &nbsp;Her cerebral palsy limits physical excursions. &nbsp;Beyond theme parks in a metropolitan area, we cannot do what most families can.&lt;/p&gt; &lt;p&gt;So while we are fluent in Disney Magic, we don’t have much other choice. &nbsp;It helps that we love it.&lt;/p&gt; &lt;p&gt;Each time we are invited to pool parties or vacations centering around water, we are forced to decline. &nbsp;And each time is a painful reminder of this awful disorder&nbsp;that takes so much, so often, from so many. &nbsp;It aches to say no because it means I’m also saying no for the others. &nbsp;The ones who don’t have epilepsy on their medical charts but bear its scars and restrictions just the same. &nbsp;The brothers and sisters who also Cannot Do.&lt;/p&gt; &lt;p&gt;But as I wallow in my anger at these things…and how it affects her siblings…I remember that we are not the only ones. &nbsp;These things, in some variation or another, are true of most, if not all, special needs families. &nbsp;This is our communal reality in many ways. &nbsp;A life of Sitting Out. &nbsp;A life of courage and bravery and sweat dripping down your back and ignoring the stares when you&nbsp;finally do&nbsp;decide to Try Something Different.&lt;/p&gt; &lt;p&gt;But then, as I always do, even if sometimes it takes longer than I care to admit, I Remember.&lt;/p&gt; &lt;p&gt;I Remember how beautiful it all is too.&lt;/p&gt; &lt;p&gt;I Remember how kind and compassionate it makes my other children.&lt;/p&gt; &lt;p&gt;I Remember how it brings my husband and I together so often.&lt;/p&gt; &lt;p&gt;I Remember how her story is ours and how it helps others feel validated and in company.&lt;/p&gt; &lt;p&gt;&lt;strong&gt;I Remember CAKE.&lt;/strong&gt;&lt;/p&gt; &lt;p&gt;If you’ve been around any of my social media channels, you know that I often reference cake. &nbsp;Or cupcakes. &nbsp;Or donuts…which are really just thinly veiled cakes, socially acceptable to eat before noon.&lt;/p&gt; &lt;p&gt;A few years ago, after a particularly long seizure, Jilly was in a deep state of drugged out exhaustion. &nbsp;We were thankful she had stopped seizing, but then came a new terror…was she still there?&lt;/p&gt; &lt;p&gt;You see, when your child experiences HOURS LONG seizures, there is always a question of if additional brain damage was done. &nbsp;There is always a shrieking fear in a parent’s heart that yes…it has stopped…but will she be back in all her previous self? &nbsp;Or did we lose pieces of her this time? &nbsp;Will she ever be the same? &nbsp;Was this The Time It Happened? &nbsp;In so many ways, the time after a seizure is the worst for parents. &nbsp;Our outsides may look composed, but our insides are panicking, ready to burst at the seams, but for the weary skin holding it all in.&lt;/p&gt; &lt;p&gt;It certainly doesn’t help that hours long seizures and several rounds of barbiturates to stop them, leaves a little girl&nbsp;a rag doll mess. &nbsp;This time in particular, she was in extra bad shape. &nbsp;My husband and I frantically searched each other for the words, but too terrified to say them out loud.&lt;/p&gt; &lt;p&gt;Instead, he leaned down, moved a rogue blonde wisp of hair behind her impossibly perfect ear, and whispered, “If you come back to us, Daddy will buy you cake. &nbsp;Do you want cake? &nbsp;Daddy will buy you cake and you can have it all to yourself. &nbsp;You don’t have to share with the others. &nbsp;You just have to come back.”&lt;/p&gt; &lt;p&gt;And her eyes crinkled at the edges. &nbsp;There was a twinkle. &nbsp;And the faintest smile you ever did see.&lt;/p&gt; &lt;p&gt;She heard him. &nbsp;She understood.&lt;/p&gt; &lt;p&gt;He looked back at me and grinned that signature Andy grin that I fell in love with so many years and pounds ago.&lt;/p&gt; &lt;p&gt; &lt;span class=" pibfi_pinterest="" <img="" src="" alt="2015-03-10_1425945926" width="570" height="570" srcset=" 570w, 150w, 300w, 100w, 580w, 640w" sizes="(max-width: 570px) 100vw, 570px"></span><span class="aligncenter size-large wp-image-15740" onclick="pin_this(event, ';media=;description=Because Cake.') &lt;/span&gt; &lt;/span&gt; &lt;/p&gt; &lt;p&gt;You see, Jill is also mostly non-verbal. &nbsp;But one of her first, and at the time, only words was CAKE. &nbsp;Never ever simply cake. &nbsp;Always CAKE. &nbsp;Always exuberant and with a bounce, CAKE.&lt;/p&gt; &lt;p&gt;Daddy spoke her language. &nbsp;As he always has.&lt;/p&gt; &lt;p&gt;Several hours later we were discharged and sent home with a weak and tired little girl. &nbsp;But heading home.&lt;/p&gt; &lt;p&gt;I was confused when he passed the left turn to our house. &nbsp;In my relief I had forgotten. &nbsp;He pulled into the grocery store. &nbsp;Ran in and came out with a cake. &nbsp;Bright yellow with gaudy plastic butterfly rings stuck in it.&lt;/p&gt; &lt;p&gt;Daddies are the best Promise Keepers.&lt;/p&gt; &lt;p&gt;She was too sick and tired to eat it that night. &nbsp;But we saved it. &nbsp;She ate it for breakfast. &nbsp;As one does.&lt;/p&gt; &lt;p&gt; &lt;span class=" pibfi_pinterest="" <img="" src="" alt="2015-04-16_1429193644" width="570" height="570" srcset=" 570w, 150w, 300w, 100w, 580w, 640w" sizes="(max-width: 570px) 100vw, 570px"></span><span class="aligncenter size-large wp-image-15743" onclick="pin_this(event, ';media=;description=Because Cake.') &lt;/span&gt; &lt;/span&gt; &lt;/p&gt; &lt;p&gt;So now, after every single seizure, we have cake. &nbsp;Or donuts. &nbsp;Or sometimes both.&lt;/p&gt; &lt;p&gt;Because CAKE.&lt;/p&gt; &lt;p&gt;Because the seizure stopped. &nbsp;CAKE. &nbsp;Because we are going home. &nbsp;CAKE. &nbsp;Because we get to call her ours. &nbsp;CAKE. &nbsp;Because we walk this path in a shockingly brilliant community of support. &nbsp;CAKE. &nbsp;Because I know it’s scary, brother and sisters, to watch and see, but we are a fierce family. &nbsp;CAKE. &nbsp;Because fill in the glorious blank. &nbsp;CAKE.&lt;/p&gt; &lt;p&gt; &lt;span class=" pibfi_pinterest="" <img="" src="" alt="Untitled-16" width="570" height="536" srcset=" 570w, 300w, 603w" sizes="(max-width: 570px) 100vw, 570px"></span><span class="aligncenter size-large wp-image-15737" onclick="pin_this(event, ';media=;description=Because Cake.') &lt;/span&gt; &lt;/span&gt; &lt;/p&gt; &lt;p&gt;Because sometimes it takes a determined, tough&nbsp;as nails little girl to remind us that even in the ugliest times, there is always something to celebrate.&lt;/p&gt; &lt;p&gt;There is always always always time for CAKE.&lt;/p&gt; &lt;p&gt;It has become our family’s inside joke. &nbsp;Our secret language. &nbsp;Our battle cry.&lt;/p&gt; &lt;p&gt;Because CAKE.&lt;/p&gt; &lt;p&gt;I will probably cry. &nbsp;I will probably be angry.&lt;/p&gt; &lt;p&gt;But I will eat cake too.&lt;/p&gt; &lt;p&gt;BECAUSE WE CAN.&lt;/p&gt; &lt;p&gt;[" rel="attachment wp-att-15737 &lt;span class=" pibfi_pinterest="" <img="" src="" alt="2015TeamJillypurp" width="570" height="356" srcset=" 570w, 300w, 1206w" sizes="(max-width: 570px) 100vw, 570px"></span><span class="xc_pin" onclick="gaTracker('send', 'event', 'outbound-article', '', ''); 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