Remember me?
I know, I know...It has been a while since I have blogged, but as you know it was a lot going on in my life. Especially, pertaining to my family. Before I start my rant I need you to understand something. I am not afraid of being honest. In truth, I can only be honest when I write. Maybe, that is why I love writing so much. Maybe, that is also why there are such long breaks in my blogs. Because, I can only write when I am having strong emotions, that I can not get out verbally. Emotions that can only be expressed through written word.
So....here it goes.....
I really must give credit to all the mothers of special needs children. I mean I honestly salute you!
I feel like being a special needs mother is a badge of honor. Like, a super hero power. Like, you are fucking invincible. (excuse my French). Which it really blows my mind to say this because once upon a time I thought that I never wanted to have a child with special needs. In fact, when I was pregnant with my first child I recall watching a documentary about how married couples with a special needs child often end in divorce because of the added stress.
Upon watching that my husband and I who were newlyweds at the time had a conversation about it. My argument was that if we were ever to have a special needs child that I would not keep it, because I was afraid of having anything affect or ruin my marriage.
What a fuckin idiot I was. (Excuse my French).
Back then, I could not understand how people could knowingly put that type of permanent stress on themselves. How could they jeopardize their life. Their future by putting restrictions on themselves in continuing a life that could only advance so far.
I know... being young and dumb.
Some might speculate that I jinxed myself.
I am sure there are people who see special needs kids with their parents and have the very same thought. But, now being the special needs parent I can understand why. Not only do I understand why, but I have a newfound respect for the people that choose to continue a life that would forever change the pace of their own.
I can not speak for another mother. I can only speak for myself.
It is HARD!!!
Most of it is hard. The long hospital stays.
The lack of emotional support.
The inability to take care of yourself, and plan every single free moment you get to make sure what little time you have not caring for someone is used wisely.
The annoying interactions with companies, for equipment, and nursing.
The endless appointments, and therapies.
The feeling that you must be perfect and on your shit, because if you make one mistake.
It could change everything. The feeling when you wake up in the morning, but still feeling exhausted like you never slept. The feeling that you get when your child looks at you the same moment you feel like breaking down.
The hardest part is the looks your child gets when out in public. The looks I get as her mother. That whole I feel so sorry for you look.
Those are just to name a few of the daily obstacles I face.
Like I said, I have a new respect for special needs parents.
It truly is a super power to be able to take on so much on a regular without a break.
And to think, there are some people that do it all on their own.
I am proud to be in this group.
I am proud of my children.
I am proud of my family.
Of course right now we are in damage control. The affects of Calista's long hospital stay has had a drastic impact on everyone in our household. We are trying to create a new routine in our home with Calista's quality of life being drastically different. Everyone has their struggles, but with it all we managed to stay together.
If there was anything I would want strangers or people who cannot relate to my life right now to know about me. I want you to know that special needs kids are not burdens. Yes, it is hard and it is different. But, special needs kids and their families can still have a life. We do not need to be excluded from things because we are limited. No, we cannot always go on vacations, or go out at the drop of a dime, but that doesn't mean we can't go out.
Life is rough, and sometimes it is helpful instead of staring and looking sympathetic just smile and say hi. I want you to know that random kind words to someone who is going through tough transitions have powerful impacts. Just the same as negative words.
If there is no other take away I hope that this is the message that sticks. Special needs kids have every right to be here on this earth alive, just the same as healthy children. Special needs parents are not crazy, and weird. But, incredible, and self-less. Just because they have these obstacles do not mean that they are not the same people they were before the kids. If you know someone with a special needs child that you are close to...invite them out for a break. Or at least encourage them to continue on through laughter, or a brief distraction with something positive.
Remind them that they are amazing, and strong. It also wouldn't hurt to buy them a drink either.
Whatever, way you choose to do it.
Just know it helps to reach out.
Even if you cannot relate.
Mothers are the foundation of a family. For every mother that has sacrificed for the good of her family you need to know that you are incredible, and appreciated. Even if no one ever tells you that.
I am telling you now.
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