Doing alright

Once I find myself at the bottom of the dark holes CDKL5 places in front of me, it is really challenging for me to pull myself up and out.  It is almost too easy to just keep falling further and losing all of my ability to see the light from above.  Every day that Sonzee seizes, whimpers in pain, is unable to communicate her wants and needs is another day I feel suffocated and a failure as her mother.  Then there are these fleeting moments where I am able to see that she really is truly content with the life she has been given and that she really doesn't know any differently and I realize that I should not be discouraged.

I had one of those mommy moments during Sonzee's swim class this week where the world around us did not exist and we were in a dream.  It was one of those great moments that caught me off guard and brought some tears to my eyes, a ridiculous smile to my face, and for a split second I forgot about her troubles.   For a good half an hour I watched her in her element; not in any pain, smiling on and off, looks of content across her face, just pure happiness exuded from her as she kicked her feet, went under water, and worked on back floating.  Lately I feel as if these situations are rare and I wanted time to stand still so we could be frozen in the moment for a little longer.  I live for these moments, they are what make hallmark movies and P&G Olympic commercials. 

The other day one of my special needs mommy friends mentioned she keeps her daughter on palliative care because it is "care-ative" medicine vs "curative" medicine, the line resonated with me immediately, but it was not until today watching Sonzee play in the water that I felt its true meaning.  We will never cure Sonzee of seizures or the lack of CDKL5 protein that is present in her body, we won't ever be able to cure her GI issues or make her able to function like a typical person does in our society.  We are only able to care for her in a way that shows her we get her, we understand her essence, we only want her comfortable and happy and during her swim class I felt it was her way of giving me a pat on the back and telling me "Ema, thank you, you are doing alright". 

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CDKL5 5 Push-Up Challenge

Help us raise awareness for CDKL5. 

Use #cdkl5challenge on your videos!! 

1. Donate $5 to the International Foundation for CDKL5 Research at www.cdkl5.com
2. Do 5 push-ups
3. Share this video and tag 5 friends 

Awareness

Before July 26, 2011, Sam and I had no real life experience with a NICU.  Just 18 months earlier with our first child, we delivered in a hospital that had a level 3 NICU for the "just in case" scenario.   On that Tuesday night with uncertainty, we were quickly thrown into a new experience.  We had known throughout my pregnancy that our son had a congenital heart defect, but how severe, no one knew.  Luckily for us, his stay was brief, and he was discharged back to rooming in with me in couplet care within 12 hours.  His diagnosis, we would later learn was a bicuspid aortic valve with mild aortic stenosis.

My knowledge of the heart has definitely grown, although I still find it a bit overwhelming with all the pieces of information we receive.  Before July 26, 2011 I was unaware that a bicuspid aortic valve is the most common congenital condition of the aortic valve.  

Fast forward to this year.  On March 11, 2015, I had no idea what a seizure looked like in a one month old.  It took just 3 more days to gain that knowledge.  On Thursday, April 16, 2015, at 2pm I was blissfully unaware of CDKL5 and the cause of Sonya's seizures, and then a mere 30 minutes later, I became aware.

We see ribbons of awareness all the time, all around us.  Some of the more "popular" ones we know without hesitation.  We look at those ribbons and give pause to our own experience with the disease or person it is representing.  Then there are others we look at and we are not quite sure what those stand for or who they stand for.  I probably wouldn't be wrong if I said that for those less than popular ones, the majority of us don't run to the Internet to do a quick google search to learn more.  We may not ever learn that the infertility awareness ribbon is pink and blue, that bright yellow is for spina bfida, or that purple is for epilepsy. 

It typically takes a diagnosis and deep rooted desire for a cure to want to spread information.  It takes being at the very bottom of an unfortunate situation to reach out and try to garner interest.  It is on the shoulders of those impacted at the first degree to teach as many people who are willing to listen so they themselves can share the information.  It is our job to help raise awareness so that our ribbon color is always known.

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This month is CDKL5 awareness month. Our colors are purple for epilepsy and bright green for CDKL5 itself.  Hope-love-cure is our motto.  I ask you to join me in helping spread awareness.