A Holiday In Pain

Dear… Obscure Relations / Those-Who-Think-They-Know-Us-But-Haven’t-A-Clue / Random Citizen who has the misfortune of crossing my path during the next few days or weeks….

I’m not happy. In fact, I’m f#(&ing pissed. Not positive. I refuse to see the positive side of the “special needs” life at the moment. In particular, I cannot fathom what good is coming from my son’s epilepsy. My son’s INTRACTABLE, UNSTOPPABLE EPILEPTIC FORCE that swings machetes at what’s left of his mind.

I’m pissed at the insurance company. I’m pissed at researchers who haven’t figured this s#!^ out yet. I’m pissed at every doctor that’s ever missed this in my son and others. I’m pissed at our first OB who missed the blood clots that ultimately caused my son’s stroke and cerebral palsy and reportedly, his epilepsy. I’m pissed at everyone.

So, while I’m usually very adamant about the fact that every person has his / her own weight to carry, and adamant that anyone can talk about their excitements and sorrows without fear of thinking their concerns aren’t as important as a special needs family’s…THIS IS NOT THAT TIME.

Don’t ask me to do another thing for you so you can get ready for your party; don’t tell me about what’s “inconvenient” for you. Should you cross my path and complain about the perfect place setting for the holiday party you’re throwing, or that you’re so stressed baking cookies for your kid’s school parties, or that your damn dentist refuses to see you right away and you really want your teeth whitened to start the New Year…please save your breath and $crew off; I don’t want to hear it.

TearFor once, for this particular time in my family’s life, I’m going to say that shit isn’t very important. In fact, it isn’t important at all. While you’re cooking dinner for your family wondering how you’re going to get your house cleaned before the in-laws come around, I’m contemplating putting my son on about the 13th DRUG to try to stop his epilepsy; I’m contemplating the fact that we will have to use the meds we’ve previously refused because they ultimately will cause his liver failure or will reproduce the rages of his past – and that there’s a huge possibility that they won’t work anyway. Which then leads me to contemplate the very real probability that we will begin procedures for brain surgery.

When I finish contemplating that, I’ll return to my next step in our journey of begging – BEGGING the insurance company for just a few more IVIG treatments that cost $20,000 a day, two days at a time or LOSING THE BEST BENEFITS WE’VE SEEN FROM A TREATMENT YET resulting in us losing our son AGAIN. But you can contemplate your disapproval of my family’s lack of warmth in accepting your demands for holiday joy.

So, unfortunately if you’re looking for my positive side, my inspirational, supportive, even-keeled persona to get you through…you might want to look elsewhere. In fact, I encourage you to look elsewhere because my sorrow and anger run so deeply that even though I may get a second to breathe, it will be a second, then the contemplations will return, and I fear it won’t leave for quite some time.

Sincerely,

The Grieving Warrior

P.S. For those who truly, honestly, genuinely and wholeheartedly have been on this journey with us…this is not to you. To you, I again ask for your compassion, and a shoulder to cry on.

Gina St. Aubin
Gina St. Aubin is a former Victim’s Advocate who now advocates for those with intellectual and physical challenges. Her eldest son is diagnosed with Cerebral Palsy, Autism, Sensory Processing Disorder, Electrical Status Epilepticus during Sleep / Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) and Developmental Delays. In June, 2012, her son also underwent a successful hemispherectomy. Gina is the editor, author and owner of Special Happens, serves as a member of the Board of Directors for the SPD Foundation, and resides in Colorado where she is a mother of 3, wife, blogger, writer and special needs advocate. You can reach Gina through various Special Happens connections on Facebook and Twitter, or email her directly.
Gina St. Aubin
Gina St. Aubin

14 Responses to A Holiday In Pain

  1. Though we grieve, we will never stop. As warriors we cannot. God bless you, your precious son and your family. May you all find peace and comfort for the holidays and every day.

    Thank you for your words.

  2. You know what? I’m pissed for you! I totally get what you mean about all the little stuff that people whine about day in and day out. I do not have a child with special needs, but I watched as my father fought a two year, three month battle with cancer and the strongest man I know became one of the weakest. Yet, that was not my child. So I cannot comprehend what you are going through. I only know you have every right to be pissed. Go with it.

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