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Be Our Guest

Posted by on 2:27 pm in Blog | 0 comments

Be Our Guest

Staying in the hospital is nothing like staying in a castle, even though the care is sometimes just as attentive. Our little beauty had a recent emergency trip to the hospital, which required a transfer to that magical children’s hospital down the highway. It was frightening, full of adrenaline, and it was enchanting. We were their guests. What started off as a very early morning seizure, gradually rolled into another, and then another, and then rescue medication with a plan to drive to the hospital. It quickly rolled into another...

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Closing Time

Posted by on 6:36 pm in Blog | 2 comments

Closing Time

“Sir, if you won’t be needing me, I’ll close down for a while.” – C3PO Interesting that a futuristic gilded space butler can take some time to shut down and recharge, but us so-called “super-moms” feel we cannot. When was the last time you said to someone, if you’ll not be needing me, I’ll shut down for a while? If you are anything like me, probably never. The fact of the matter is, we really don’t ever shut down. Even when we try to shut out the noise and chaos around us, we are...

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Dear Santa

Posted by on 4:46 pm in Blog | 0 comments

Dear Santa

We didn’t want Pepper to be left out of writing a letter to Santa this year so we decided we would write one to him on her behalf. Big brother asks Santa for a miracle for Pepper every year. This year, it was her turn to ask: Dear Santa, This Christmas I am at a new school. I have been a very good girl this year, and here is a list of the things I would like for Christmas: Dear Santa: If you could make my legs do what I ask, I could run to my friends; it wouldn’t be such a task. I could dance in the classroom and run with my mates, I...

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some misunderstanding

Posted by on 6:19 am in Blog | 4 comments

some misunderstanding

Yes, this must be some misunderstanding. No, it’s not a mistake. Pepper is turning 5 years old in a couple of weeks. No, Pepper is not a baby. Though I can see the reason for confusion. Pepper is not talking. Pepper is not walking. She is not self feeding, or self toileting or pointing, or waving.  The wheelchair Pepper is using looks similar to a stroller, but it is not a stroller. It is a wheelchair. It can tilt back. For naps. For seizures. For recovery. It is not a stroller. Pepper is not a baby. But she is my baby. Not A baby, but...

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Changes

Posted by on 9:02 pm in Blog | 0 comments

Changes

Turn and face the strange…. ch ch chaaaaaaangesssss…. (credits to the most awesome David Bowie for his inspiring lyrics, lifting us all to face the Changes) And face them, we have. And face them, we continue to do. In November of last year, we purchased a new home! We’re in a house!  Less stairs, less struggle to get down the stairs carrying a 40 lb sack of potatoes in the early morning pre-coffee hours… And as for future challenges, we are equipped to be able to install a lift to assist us with the challenges of...

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Be brave little soldier

Posted by on 1:38 pm in Blog | 1 comment

Be brave little soldier

As we start another year off with a series of seizures, I shall keep the mantra, “Be brave little soldier” in my head.  Last year was a year of challenges and tested my mettle more than any other I can remember. Even still, my head swims with worry, and nervous anticipation for the next set of challenges; the next mountain to climb.  This year, I will remind myself over and again to be brave.  Over the course of the past few months, we advocated for our little girl within the school system so that she could attend kindergarten with her peers,...

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Climb Ev’ry Mountain

Posted by on 2:09 am in Blog | 1 comment

Climb Ev’ry Mountain

“Climb every mountain, ford every stream, follow every rainbow, ‘til you find your dream..” – Rodgers & Hammerstein When I was a young lady, I inherited the Sound of Music soundtrack on vinyl. Of course, much like most of the world, I had already seen the movie a million times and knew all the songs before having access to them 24-7 in glorious, crackling, hi-fi sound.  The inspirational message of “Climb Ev’ry Mountain” was not wasted on me. I felt it in my heart, and I aspired to do just that in my life. Little did I know at that...

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Patience

Posted by on 2:09 am in Blog | 0 comments

Patience

Patience is a virtue.  This was an adage that I heard repeatedly while growing up.  Apparently, I didn’t have much of it. Truthfully, I was very impatient to grow up, but what child with the world ahead of them isn’t? Now that I am entering my old age, I want to be young again! I want to go back, slow things down and relish my youth. Alas, the sands of time slow down for no one.  Pepper for the most part, has the patience of a saint. She’s not fussed that she can’t get from one side of the room to the other fast enough to reach a toy before...

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Heart 2 Heart

Posted by on 2:07 am in Blog | 0 comments

Heart 2 Heart

You’re in the mall and you see a lady clearly struggling with her special needs child. What do you do? Do you stare? Do you scowl? Do you mistakenly blame her for terrible parenting? Do you feel sympathy? Do you feel her frustration? Do you feel her pain, disappointment and fear? If you’re reading this, I am guessing you are feeling the latter rather than the former. Thank God. And thank you. Go to her. Help her if you can. Tell her she’s doing all the right things. Most of all, tell her we’re all here for her. She’s not alone.  The other...

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Every girl can be a Princess

Posted by on 2:04 am in Blog | 0 comments

Every girl can be a Princess

Any dream can be… Our little Princess celebrated her third birthday back in October, and as you can see, she was treated to a very special cake. We enjoyed a watermelon cake with some added fruit embellishments. This was no ordinary cake.  This was a cake specially made by yours truly for our keto girl, and it was fit for a princess. When I last wrote, things were tough. We were in the midst of one of Pepper’s seizure clusters and were helplessly watching her slide down. It was more heartbreak than I could handle. I won’t lie, things...

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