Archives for the month of: May, 2021

I was on a social media site this week and saw that I had some notifications that certain people put into their story. So I took a moment to scroll through them and as I did I started to think about some things. One of which was that each person felt that that moment in time in their life was something that needed documented and sent out into the social media universe.

Second is that each person’s circle of their world is clear. My journey and its highlights, while amazing to me and quite timely, exist in its own circle and yours would do the same. So we really have all these circles that represent the lives of people all sort of, well for a lack of a better word, circling among each other.

Near to each other but not really touching.

I can hit a button indicating I like or love something someone posted and truly mean it but then go back into my own circle and keep doing my life or world.

Or maybe someone will do the same for the things I put our there and feel are important.

I was talking with a friend today and she mentioned all the emojis she got from an emotional post she shared about a friend who went to heaven. The responses are all there and done with heartfelt feelings I am sure but then everyone goes back into their circles.

I think it is really just the fast paced, quick world we are living in. Where a big new story gets the attentions for its requisite 15 minutes of fame, where we all respond but then retreat to the circles and live around the event.

As mom to a child with special needs, my daughter, Elizabeth age 23, I see how much separation there is between the world our children live in and the world of the typically developing. I see the importance of understanding and caring becoming the bridge from one world to the next. And I know just how wonderful it is when those bridges are created and allow for caring and love to be shown and given to our special children.

I saw a social media post the other day, a cartoon image of a special needs mom who fell into a hole, symbolic of the challenges we face in our daily lives. What followed were the words said by others. Such as someone saying, “Tell me how you fell.” And another saying, “I will talk to others and make a decision how to help you.” But it was the other special needs parent who said, “I got you, I have been there before and I know how to help you get out.”

Help.

Doing something for someone in need.

That is so moving to me.

It is caring.

It is understanding.

It is giving of yourself to others.

It is the chance to leave a circle that is yours and and enter another person’s

And support them.

I hope to be the one who has learned by life with my beautiful Elizabeth to leave my circle and join another person’s if I can.

We are all in this thing called life together.

Michele Gianetti

I had someone tell me once during a big discussion of life that ” Truth be told, Michele, time goes at the same pace it always did” He meant it goes no faster or slower but I disagree. I understand that time ticks away at the same pace but there are times in your life or moments in your life that make it feel like time flies or crawls along.

The thing said to us all and really BY us all, is that “time really does pass fast” but for those who have children with special needs, it seems to pass so slowly at the same time because maybe we/they are working so hard or maybe it is just a really tough time.

Elizabeth is my middle child and she has special needs. She is 23 now. She was diagnosed at 2.5 years old with Sensory Processing Disorder (SPD) and dyspraxia. Her early years were really tough ones with her crying almost all day and the therapy appointments and on and on……

Those are the times I think felt like they were going so very slowly….Would she ever talk? Will she really walk well? Oh, Look! She said a word? Oh wow! She is trying to walk! It was bit by bit, moment by moment, effort by effort. I feel that is why it all felt in slow motion.

Life with Elizabeth and her needs changed the way we felt time went.

It is like we are working so hard each moment, day, week and year for our special needs child that it is as if an imaginary calendar, is directly behind us just flipping off days as we continue to do all we want/need/must do for our special child and we don’t notice it all. Yet when we look up from our work, we do and we notice it greatly….

So when I look at pictures and see my children when they were little it seems just a moment in time.

It is such a tug at my heart when I see the little bob haircut on Emily, my oldest or the tiny bows in Elizabeth’s hair when she was little (and would allow them IN her hair) or when I see Michael, my youngest in these little shorts. Or when I see them in middle school on track or a swim team picture. Elizabeth for the former, Emily for the latter. And Michael on his first basketball team. How fast it seems to have gone!

Or when I see the graduation pictures of Emily and Elizabeth. Fast again.

Or when I remember Emily went off to school for Kindergarten and Elizabeth and I were together headed to therapy after therapy…..Slow motion here.

Then Emily was suddenly in 5th grade and Elizabeth entered our school system (a bit late) to first grade.

Slow, then fast, then slow……Then Michael arrived and the clock started again. And it too, moved slowly and super fast as well.

I have often talked about the “Gift of Elizabeth” The ways that being in her life have taught us things. Such as slowing down to watch the sunset or dancing to a song is really important even if dinner is cooking, or to really appreciate and celebrate EACH AND EVERY success achieved in life. I am so grateful that because of her gifts, we were able to treasure the good things of life whether the time was moving slow or fast.

I hope all the moms or “moms in the life” of a child with special needs realizes deep in their hearts just how important they are, what gift THEY are. And just how much their love and devotion makes a difference in their child’s life. That is just something I really needed to say.

So with that I wish all the moms out there a Happy Mother’s Day. And weather you are in a place in life where time is moving slowly, I wish you strength or if you are in a place where time is moving fast, I hope you enjoy it all.

I write this blog in honor of my friend Barb Phillips, sorry Barb I had to put your name here. As I write this, she is at the hospital going on day 17 being the biggest champion and advocate for her daughter Lacie.

Lacie has faced the very real possibility of going to heaven these past 17 days and Barb has NOT once left her side. She speaks for Lacie, because Lacie doesn’t have a voice right now. Barb is a beautiful mom.

Lacie, in her 20’s now, was born with many many medical issues and Barb has NEVER, NOT ONCE waivered in her care for Lacie. Driven by, well…LOVE, Barb has seen her through situations, surgeries, and care throughout days and nights that would drop others to their knees. But the love keeps her going. She herself has some health issue but she doesn’t complain. She is truly what a mom is. Lacie is a gift to her but Barb, you are a gift to Lacie as well!

Barb wants Lacie’s life to matter.

Barb, by your fierce love and devotion, you have made sure it does.

Happy Mother’ Day to all

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself.