A very wise friend told my husband and I that having a child with special needs would cause us to be in an endless cycle of grief. At first, we thought this to be morbid advice, as grief is understood by most people. We didn’t understand it, nor were we ready to understand it in the early part of our life with twins diagnosed with Periventricular Leukomalacia, causing Cerebral Palsy.
Years later, I completely understand. Today, I fell into an inconsolable fit of grief over a phone call from the school saying they ran out of diapers for the boys. I was at work, and had to sheepishly ask if it was okay that I step out, to buy my 6 year old twins diapers, because it was kind of an emergency. I fell into all the various stages of clinical grief, through the denial “maybe they don’t REALLY need them”, the anger, and the sadness. I went through a whole slew of emotions surrounding the fact that no one else close to me has to bring DIAPeRS to their kids school! No one else I know has to interrupt their day to run to the store! I WAS CRYING OVER DIAPERS!!! DIAPERS!!! For God’s sake, I bawled like a baby in the car from the store, to the school, and back to work.
This may not be the traditional grief that everyone is used to hearing about, but it is grief none the less.
I grieve almost everyday for something that my family doesn’t have, or can’t do, or something my daughter experiences as the sibling of 2 brothers with special needs. I grieve for the boys and their frustration of lack of communication. I grieve because this isn’t what I pictured as a little girl. This isn’t the family that I had envisioned in my head.
Sometimes us Special Needs parents look haggered, and emotionless, and tough. It’s because we have to put up that front very often because every fibre in our being wants to break down and cry.
Which I do VERY often, because I would rather people see the emotion, and not see me as a tough stone like mom.
So if nothing else, know that we all have struggles each and every day. A smile can do wonders, and a hug can heal!

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