Just when I thought I had it up to my eyeballs.Parenting a child with special needs is a daily, emotional, daunting, exhausting experience. Some days, even weeks go by without skipping a beat and I do all the things without thinking. Others weeks? Not so much. The past few weeks have been a roller coaster for sure. I have hung on desperately while being hurled upside down and turned inside out. By Sunday I was convinced that not a single person on the entire universe around me knew or cared. I was feeling vastly overwhelmed, unseen and forgotten as a...
Keep calm…Benny on! Special needs parenting is hard. I thought I would mention that just in case no one already knew this just by observing the brightly lit chaos surrounding our everyday life. Most people that venture into our home, and notice the ever ready on-demand coffee made, acknowledge immediately that, indeed, we, the Benny people, depend heavily on the brew made from beans. Keeping calm…Benny-ing on is harder than it looks. I realized on one especially exhausting day that we could not keep going without getting Benny on some kind of calming meds. Something to slow him down in his over...
Nobody told me. Nobody let me know on that hot, humid July day in 2003, that my life was soon to be a roller coaster ride of oxymorons like bittersweet. Or synonyms and antonyms like joy and sorrow, acceptance and denial, grief and gladness, happiness and sadness, and the list goes on. When that faint cry of a newborn was heard throughout our home, no one, not even God, announced the dramatic change about to bring us down to earth in an awakening so astounding that nothing could have prepared us for. Joy and Sorrow. When we heard the joyful...
The Saturday Morning Confessions of a Special Needs Mom. “You’re such a good mommy.” “You’re super mom.” “Benny is so blessed to have a mommy like you.” I hear this often and it blesses me so much. How do I respond? “Yes, I know. Thank you very much for noticing?” No, of course not! While it makes me feel good, and I know in my heart that I try my best, I also know the times when my own wants and needs rise up and desire to be served first. Like this morning. Hi-Ho to Bob Evans We Go! As...
In my previous life, I was a cleaning fanatic. Does this mean I believe in reincarnation? Heavens, no! Not even close. When I use the term “previous life”, this is what I’m talking about: Previous life: Before Benny. Current life: Anything after Benny! This is how I think of my life. I have been pondering why I look at my life as before and after Benny, but then I realized that it is probably because my fight completely changed after Benny. How I used to fight. Here is a peek into my previous life and what I fought for on...
Who is Blaze? Blaze is a horse Benny met a while back on a therapy exercise. The following is a story I wrote as through Benny’s eyes and heart about this harmonious experience on top a horse! Although Benny’s face is turned away in the picture, I love the expressions on everyone else’s faces! Benny was so wild and boisterously laughing that he had us all laughing with him. This is the way of special needs children. This ability to make others happy is a part of their beautiful life! My name is Benjamin, but everyone calls me Benny. “Come,...
The picture above is of our Benny’s signature shiver. (Also, note the amazing crop of hair! 🙂 ) He does this shiver in anticipation of just about everything in life. It has caused me to acquire ants in my pants and to jump up and down on the inside with pent up energy when I am trying to move on with my day, and he takes his good old time to shiver. Shame on me. Every single time he gets a glass of milk he shivers. Whenever he glimpses a tube feed coming; shiver. Oh boy, a bath; biggest shiver...
I’m pretty sure that if you’re a special needs mom, you already know it. And you don’t need to read this to figure it out! But just in case, here it comes. This started out as a Facebook post. But then about ten sentences into writing, I came to the brilliant conclusion to not write a whole chapter on Facebook. Because sometimes when I hit the read more button on a post and it is as long as Santa’s naughty list, and in order to read the whole thing I would need a bowl of popcorn, I just keep on...
What if God had created special needs kids without unconditional love?I have been pondering this question all week as I have been going about the daily care of Benny.What if every morning when Benny insists on a bubble bath at 5:30 am, he would complain. What if he would yell that the water isn’t the correct temperature, or that there are too many bubbles. Not enough bubbles? What if he wouldn’t laugh and kick with pure glee all those mornings, letting us know that there is joy in a bubble bath at this unearthly hour?What if Benny wouldn’t get ultimate...
Dear mom of a special needs child, Good Monday morning as you begin yet another week caring for a most precious child! I see you there, coming away from the weekend. I see a shadow of discontent momentarily come across your eyes as you shove that bolus feed through your child’s feeding tube. I see how it appears that other’s lives keep right on going and you get left behind and choking from the clouds of dust billowing from their heels. I get it. Perhaps you heard of others reaching out to that person you would love to minister to as...
