being a special needs mom

I noticed a few blogs this week were focused on what NOT to say to a special needs mom, or how you can help your special needs mom friends….. and I thought about it quite a bit. There is really nothing you CAN’T say to me, I am a special needs mom – and while I’m sure the other moms who blogged about it were not saying they would have it any other way, I would definitely not have it any other way! I also know that not everyone knows what it is like to be a special needs mom, or special needs dad, or grandma or grandpa, or aunt, uncle, sister, brother, etc.
So – what is it like to be a special needs mom? It is beautiful, and heartbreaking, and sometimes a little bit exhausting. It is lessons I never thought I needed to learn, and an appreciation that I never expected.
I always thought I was pretty open minded, and that I knew a lot about the world and causes….. being Isaac’s mom has taught me how little I really knew, and how much more open minded I could actually be. I had great friends, and I learned that they will stand by me through anything.
I have made new friends – other special needs moms, some I have never spent time with in person, but we have these amazing phone conversations and we just “get” each other. I can call them in the middle of the night from the ICU and tell them how badly I need a piece of chocolate cake, and they understand why. I have been exposed to other special children, and I have learned oh so much from them.
I have learned compassion, resiliency, love, unconditional relationships….. they have taught me that bad days aren’t always the worst days. These amazing children (including mine) smile with a knowldege of something we don’t understand – it is the knowledge of their survival. How can a smile not mean more when you’ve been through as much as these kids? Nothing that they have been dealt is fair, but they don’t complain.
My Isaac has a compassion that I have never seen in a four year old. He loves to love, he consoles with great understanding. When he speaks it is magical, the fact that he CAN speak is in and of itself a miracle. When he tells me “I love you” I melt. It has such deep, amazing roots. Most parents value their child’s voice and particularly their first words – we live for Isaac’s voice. It is a voice we missed for several years.
So, there really is no right or wrong thing to say to me. Because I have this amazing gift, in the form of a beautiful 4 year old, that I marvel at several times a day. I sometimes put my foot in my mouth or say something I shouldn’t have – that is life. There are no rights and wrongs when it comes to special needs moms – just talk to us. Keep us in your thoughts when we need it, and laugh with us when we need that. Marvel at our children the way we do, and love all of the little quirks of your own children a little bit more because of my Isaac.

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