Archives for the month of: August, 2021

I know there are days that after I wake up and give thanks for the fact that I WOKE up and have my family with me, I take a huge breath and wait for the wash of thoughts and concerns to show themselves again.

These are the same thoughts and concerns I probably left the night before and ones I probably had the day before.

But there they are.

Right back where I left them.

So I begin the morning, half in thought and half in prayer and planning on what I can do to make these situations that worry me better.

I can honestly say that there are days when it seems that everyone I love so much is in my thoughts for one reason or another. I do this thing where I mentally picture the face of the people I love, one by one, and think about what is tugging at my heart about them.

What is my concern?

What is my worry?

What can I do for them?

What comes to mind for me is the analogy of when someone puts something “on the back burner” . This expression can be familiar to many. It means that something doesn’t require immediate attention, that you can come back and revisit it at a later time. It is simmering along, not boiling.

This is kind of how I see the concerns of each person are they simmering or boiling?

Some are simmering along and just need a bit of stirring, some are boiling and need attentions NOW! Some simmer one minute and boil like heck the next.

I know that this is par for the course. Right? It comes with the territory and all the love you feel for your family and friends.

But I have to say that as a mom of a child with special needs these emotions come stronger and more frequently as we navigate our child through life. As we become their advocate and voice. As we try to catch the small issues before they take root and become big ones that are harder to help them with. We know their pots can boil faster and stronger.

I know there are days that seem there are 5 pots boiling for Elizabeth at any one time. She is my daughter with special needs. She has SPD (Sensory Processing Disorder) and Global Dyspraxia. Both disorders affect her days, all day, everyday. And the anxiety she feels due to the disorders can boil a pot in no time.

I don’t go looking for the pots to boil. They do that all on their own. But I do have to say, for Elizabeth, I am always keeping one eye on the pots to see just how close to boiling they are getting.

Does she look extra nervous about doing_________?

Why did she shy away from doing this when she loved it before_________?

Always sort of evaluating and always sort of keeping an eye on the pots.

I know that that is what we must do. And I know that I am no different in doing this.

But the one thing I want to share that I have learned on this 24 year journey with Elizabeth is that sometimes, when all the pots for her are simmering or even MOST of the pots for her are simmering……

To enjoy it.

To enjoy the moment.

To enjoy the peace for as long as you are able.

Because you know that you will never not react when the pot boils, you will. And you will do your best to help your child ,as you have always done, to get them back to a simmer. To help them succeed as best as they can in this thing called life.

I had the moments this week when literally all the pots for Elizabeth were just….simmering.

And I was thankful

And I enjoyed them.

I offer this out to those who may need to hear this and who may be smiling at my long running analogy. But the big takeaway is that it is so important to take the peaceful moments and rejoice and enjoy them. Take the good when it comes and let it in fully.

I wish everyone a peaceful week and please stay safe and wear a mask!

Michele Gianetti author of Elizabeth Believes in Herself

“Absolutely YES!”

That was my answer to the question my husband posed tonight which was “Want to pick up dinner tonight?”

A wise choice for sure as I feel I have cooked a pretty impressive amount of days in a row!

So we go to pick up the dinner and the restaurant has this interesting way of entering and exiting it. You have to pull in off of one street and exit onto another one. To leave it, necessitates going around the back of the restaurant and through several groupings of office buildings.

As we were navigating this maze, we passed the office of one of our local dentists and for some reason tonight I thought about how so many years ago, one of the office receptionists was the mom of one of Emily’s friends. (Emily is our first born) I found myself thinking of the summers we spent near this mom because her daughter was on the swim team with Emily. Her daughter’s were the same ages as mine but that is where the similarities ended because her daughters were able to do the typical sister things together with no crying, meltdowns or fits.

In fact, Emily one time, in a fit of emotions, told me that she felt sad seeing them together because she knows she would “just love the chance to just do those things” with Elizabeth.

For those who don’t know, Elizabeth is my daughter with special needs. She has global dyspraxia and SPD (sensory processing disorder). These disorders affect her life each and everyday. When she was younger, her SPD was so intense that she would cry, what felt like, all day everyday. Until the age of 3. So life was quite complicated for sure. With therapy and hard work, she has made amazing gains in her life. She is now 24 years old and such a beautiful young adult.

I continued my thinking as we drove home…

I started thinking about how long ago that time with this friend was and found myself thinking of just what Elizabeth was like at that time. Was she talking well? Was she able to enjoy the pool yet? Could she manage her emotions? I was kind of amazed that I could actually remember it all and was able to answer my own questions.

But the biggest take away from this, other than the fact that I can apparently remember a lot of things, is the fact that the overriding question to my memory was What was Elizabeth doing? and How was she?

I am thinking that my markers of time also include the inevitable review of What was Elizabeth doing and How was she? I think because her journey has been so long and so complex, I think any memory comes with the question of Elizabeth.

When we think about our family trips. There are thoughts of pools, beaches and fun and How was Elizabeth? Did she have fun?

When we think of family gatherings. We think of the blessed time together and of Elizabeth. Did she talk well yet? How did she do with opening gifts? How was she then?

I think the lives of typically developing children move in one path for the most part. And that is forward.

Crawling leads to walking, then running.

Cooing leads to babbling and then talking

And, well, you get the point and sometimes, I know it seems that some days you swear your teenager has actually regressed to that of a young child but overall, you get the point.

I think only those who have a special needs child in their life know just how much time they spend thinking about, planning for and adjusting around their child. Maybe there are gains or maybe set backs and struggles. Successes then a failure

Be it therapies, trips, life or just a tough day. And it is all done with the hope, intent and purpose of helping them grow in this thing called life. It is all done with the want to do the very best for your child as you can.

As the new school year starts I can go down many a memory lane and think about the years and what we did and the ever present How was Elizabeth?

So I offer to those who are starting the new year to listen to your heart when it comes to your child, advocate for them and trust your instinct.

I wish everyone the very best as you start or if you are in your first few days.

And remember that when you look back on your year and your memories, you will know you did the very best you could for your child.

I wish everyone a peaceful week,

Michele Gianetti author of I Believe in You

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