Crave Quiet

Does anyone remember a television commercial from decades ago that had a colorful animated house? I have absolutely no idea what was being advertised. It could have been candy, auto insurance, fast food, etc. Whatever it was, couldn’t be ignored. Seemed it was alive and danced to the music. The exterior walls expanded as if they were breathing in and out. Noise came from everywhere. I’ve often thought that when others see our home, that is what it looks like. I hope they also see energy, twirling, family, beauty, joy, colors, lights, and laughter.

If Jacob is awake, seems there is noise 75% of the time. Some days I can tune it out easily. Others, I absolutely CANNOT!

I like quiet. I’ve never been the type to want or need the TV going for some background noise. Actually, I really dislike that. I rarely have music playing because silence is nice. Even in the car. If I’m alone, I will enjoy just that. I’ve realized that as a result of Jacob being home now for almost ten months, I actually crave quiet.

An I-can’t-take-it-anymore day came along and the loud music was more than I could stand. I put my headgear on with speakers and had to turn my volume way up to tune Jacob’s out.

It worked. But only because on that day, I could tolerate music of my choice, somewhat drowning out his. And, well obviously, because sweet Lucas needed to snuggle!

I decided to take extreme measures and ordered some Professional acoustic ear plugs – designed to quiet noisy environments while isolating and filtering everything clearly. Great for: concerts, musicians, drummers, guitarists, DJs, festivals, raves, construction, fitness classes, loud work environments, dental hygienists, nightclubs, bars, sports, motorcycles, sporting events, shows, noise sensitivity, and more. I figured living with Jacob was in the ‘more’ category.

The ear plugs arrived and I was anxious to give them a try. Sure enough, Jacob gave me the opportunity. They were advertised as reducing the volume. Perfect. That’s all I asked. They did not help. Returned those and decided the next time, I could go more extreme and use our ear protectors for the shooting range.

So many people on the autism spectrum are really bothered by noise. Not Jacob! The only noise that seems to bother him is when he is startled. Otherwise we say “turn it down!” a lot, but that only works for about two seconds.

I was doing something in our garage on the opposite end of the house from Jacob’s bedroom. I could not have been further away from him. And, guess what? I could clearly hear Hickory Dickory Dock and other children’s songs!! Anyone walking down our street could have enjoyed the concert. My neighbor raking pine straw gets to hear whatever Jacob is listening too.

Years ago when we were looking at houses preparing to move, it seemed many of the newer developments had houses super close together. I truly couldn’t consider one of those for fear that Jacob would disturb the peace!

Let there be peace on earth
And let it begin with me
Let There Be Peace on Earth
The peace that was meant to be

Peace on earth is so desperately needed. Now more than ever. And I’m not making light of that at all!

I am wishing Jacob could let some peace begin in his daily activities! And while I’m at it, that snuggle buddy of mine, pictured above, can rock the house with his bark. Another reason quiet is such a gift when it comes!

Tonight, I won’t be the only one craving quiet. The fireworks bringing in the new year will disturb the peace in our home. The three of us plus two dogs will be glad when it’s over for sure.

Yes, we are the dancing house in the commercial. Sometimes it feels like a concert, sporting event, festival, construction zone, AND MORE! All up in here!

Wishing you all a peaceful New Year!!

Jacob and Griffen

In the spring of 2012 we lost our first golden retriever. It was sudden, unexpected, and heart wrenching. Andi was a gorgeous girl and a really important part of our family. We grieved her terribly and felt like our remaining golden, Barkley, missed her, too.

It wasn’t long before Mike discovered there was a Golden Retriever Playgroup in our area. Have you ever heard of such? Isn’t that the most fun idea?!?! He reached out and got the information needed for us to check it out.

We were welcomed with open arms by the hosting family. (They became dear friends and trusted us with Gracie from one of their litters.) If you like dogs and big dogs make you smile, imagine being in a backyard with golden retrievers everywhere!! It was practically magical and one of the most fun things we could have ever done. Especially on the heels of saying good-bye to our golden girl.

In that playgroup was a gal who had a male golden. We got to know her through the group and kept in touch. At some point she was looking for a dog sitter and I offered. If you’ve ever had ‘visiting’ dogs in your home, you know, it can turn out to be a really positive experience or unfortunately, sometimes it just might not be a good fit? Well, this was a PERFECT fit!

By the first time that he spent a day with us, we were again a two-golden family – Gracie and Lucas (after sadly losing Barkley). Griffen walked in like he owned the place. Never looking back at his ‘mom’ and wondering where she was going. They became fast friends.

But the friendship that blossomed most was that of Jacob and Griffen. He would go to the hallway and turn around as if to say, ‘come on, Jacob, let’s go to your room’. If Jacob didn’t follow, he’d go there and wait.

It became a given, that if I couldn’t find Griff, he was in Jacob’s bedroom.

For several years, he was a frequent guest in our home. It is safe to say that we all loved having him visit.

Sometimes he might only stay for a few hours and sometimes for several days. But no matter, every single time, he made himself at home whether hanging out with Jacob or sunning on the chaise lounge outside.

Jacob has been around dogs most of his life. Some of ours were more comfortable around him and him them, than others. But, of the pets we have loved, none made a point to keep him company for hours and hours, like Griffen. It seemed they developed a bond. Unspoken. But a strong one none the less and were a comfort to each other.

When Griff crossed the Rainbow Bridge almost three years ago, it was hard and emotional. Felt like Jacob had lost a buddy. A buddy that was a special gift not just to Jacob but our family for a long time.

Decorating Jacob’s Christmas tree this year, and hanging ornaments gifted to him, brought back sweet memories and a time for me to talk to Jacob about his special friend.

The gift of blessings come to us in all forms and this four-legged prince of a fella was one of the best!

May you receive a blessing in an unexpected form this year! Merry Christmas!

The Wonder of Prayer

Part of our long-time nightly routine with Jacob ends with his daddy saying a prayer with him. For the last four weeks though, he’s been out of commission recovering from surgery. Thankfully, he is doing great and has been able to help Jacob at mealtimes and with hygiene. Although, he is usually ready to turn in before Jacob, so I’ve taken that end of the day responsibility.

And, it has absolutely been the sweetest time.

Jacob lays back with his head on a pillow and I cover him up. A ritual of a sheet and one or two t-shirt quilts. Sometimes, he wants to look at the squares and me tell him about a particular shirt.

I kneel beside his bed and take his hand. He gently takes mine and I pray.

I admit that occasionally I peek and his head is bowed. Sometimes his eyes are closed. I pray for our family and ask his protection over them and our friends. Always give thanks for the good day we’ve enjoyed, how He has blessed us so much, and for watching over us. And, I wonder. Every evening my heart smiles wondering what Jacob is saying in his heart to God. Is he agreeing with what I’m saying? Praying for something that is bothering him? Praising God for being able to simply have a thought and know God hears.

won·der/ˈwəndər noun a feeling of surprise mingled with admiration, caused by something beautiful, unexpected, unfamiliar, or inexplicable.

Friends and family have been quick to ask about Jacob even more than usual lately. I want you to know that we thank God at night for you. Your cards, your prayers, your texts all prompt us to remember you as well!

Maybe it’s the season but it seems that the wonder of Christmas and the wonder of prayer go hand in hand. I have a feeling Jacob’s prayers are simple. ‘Thank you, God.’ ‘Help me.’ ‘I love you, Lord.’ ‘Keep me safe.’ That’s the beauty of our prayers. God hears no matter how simple!

A friend reminded me last week that as Christians, we are able to commune with the King of the Universe! I love that word commune. What does commune mean in the Bible?  to focus on God, converse, talk, often with profound intensity, intimate communication or rapport as sharing your heart and mind with God in prayer. Any time, any place, out loud, or in our hearts, we can commune with our creator, the Creator of Heaven and Earth. Let the wonder of talking freely to the King of Kings sink in.

Several nights ago, Mike was in the den as I told Jacob it was time to get ready for bed. He quickly went to Mike and wanted him to come to his room. It was a reminder that Jacob knows our routine has been off and he wasn’t missing an opportunity to invite his dad to pick up where he left off. It was the first night in weeks that his daddy was still up at Jacob’s bedtime. He was a good sport though and went without grumbling with assurance it wouldn’t be long before that old routine would return.

But until then, it has been tender and special and a beautiful, unexpected gift to commune with God while holding my sweet boys hand.

Look for the Good

I’m going to start with a Facebook post I shared in 2016.

Most mornings getting Jacob ready and out the door is hard. Real. Hard. He can be anywhere from just non-compliant to attacking. I am often frazzled by the time I drop him off at SON Valley. Yesterday was especially awful as his bad mood continued into the building where he was attacking everyone in his path. I am telling you; it hurts to see your child behave that way. This morning I was saying how much I loved him and to please be kind to everyone at SV. I went on to say when he hurts people it makes it hard for them to love him back and it makes them afraid of him. Usually, as I drive away, I am praying for my boy.

Just now I picked him up and got the best, biggest gift I can remember receiving in a LONG time. One of the staffers walked out with him and these are some of the things she said, “Jacob had a great day.” “He wanted me to stay in the room and watch Lion King with him.” “He held my hands.” “I saw him smile.” “I love working with him.” “People with autism are my heart.” “He is one of my very favorites.”

Y’all! Yes, I cried all the way home and still am. She had no idea how much I needed that encouragement and to hear those words.

I am not asking for pity because of my tough mornings. Everyone has hard things they deal with that are equally as overwhelming. I am saying that you never know how your words can encourage someone. She wasn’t saying anything about me—she was acknowledging the good in my child. Good, that is often hidden and hard to see. Thank you, Jesus, for answering this mom’s prayer this morning. It was the BEST!

While cleaning out a couple of weeks ago, I found a notebook that, for a short period of time in 2017, went back and forth with Jacob to his day program. A way for me to know details about his day that was hard to get otherwise. Here are some of the notes:

Jacob slept on and off most of the day.

Jacob had a really great day! He used nice, gentle hands when he wanted me to plug up the radio.

I can see so much improvement in Jacob’s behavior and his tolerance of others.

Jacob had another great day!

Jacob was very happy today and twirled a lot.

Jacob has been such a sweetheart today! He listened to country music all day.

He was really excited about the honeybun you packed for a snack.

I was able to get Jacob to participate in the art activity. He has had one of the best days I’ve seen So happy and proud of him!

Jacob ate well and had a good day. Still loving his country music.

I asked Jacob to help me clean the counters where he ate his dirty rice. Jacob walked over to me. I gave him the sponge and I hand over hand helped him clean the counter. When we were finished, I thanked him and celebrated his hard work. Jacob then grabbed the sponge with his right hand and with his left hand he grabbed my hand and placed it on top of his right hand that was holding the sponge. He truly seemed to enjoy cleaning the counters today.

Jacob has been calm and has enjoyed listening to his music the majority of the day. He’s also been resting on and off throughout the day.

Jacob seemed a bit aggravated this afternoon, but not in a physical way.

Jacob cleaned his plate today!

Jacob spent time sitting in the kitchen today.

Jacob had a good day!

Jacob motioned for me to give him some Pop Tarts. He hasn’t eaten them yet but I’m sure he’ll go back to them shortly. (When Jacob asked for the Pop-tarts, he had the sweetest smile on his face and he used very nice hands!)

Jacob had a great day! He danced with me this morning!

Jacob had a great day! He has smiled a lot today.

We tried to see whether or not Jacob would like the Glaze Pineapple Chicken, but he was not a fan of it!!

Jacob had a good day! We went on a van ride this afternoon.

Jacob was not very happy with me when I encouraged him to clean up the food dropped on the floor. But he was good at cleaning up his area.

Very often the notes would reference what he had to eat for lunch or snacks: brownies, fries, nutty buddy bars, prunes, pears, chicken nuggets, pasta, peanut butter crackers, goldfish crackers, hamburgers, etc. This helped me so much since I’d have no idea if he’d eaten or what. I did have access to a daily menu but they also kept a variety of snacks for my boy.

Can you imagine how hearing “Jacob had a great day” made me feel? It was worth more than I can even begin to explain.

Did you catch the main theme in those notes?

Looking for the good and sharing it, is where it’s at! Thank you to those who do just that!

Even If

On October 27th of this year, we got some difficult news. I hinted at it in the Stinkin’ Thinkin’ blog post – https://problemfreephilosophy.blog/2020/11/05/stinkin-thinkin/. Then talked more openly about it in last week’s post: Gather in Your Hearts: https://problemfreephilosophy.blog/2020/11/26/gather-in-your-hearts/.

I was headed to work for a retirement luncheon in my honor. Mike was on the phone and I guessed it was with the doctor’s office so I waited to see what that was all about. Ten minutes before I had planned to leave home, he got off the phone, looked at me, and said, “it’s chordoma”. Tears started rolling down my face while I admitted that I couldn’t possibly go to the lunch after such a report. He hugged me said it was going to be alright and that seems he is ‘one in a million’ after all.

To be honest, I quickly thought, “why do we have something else difficult to deal with? Isn’t parenting Jacob enough?”

Later, we were talking about our different reactions. I asked my man if he might sum up his thoughts about his cancer diagnosis and this is what followed a day or two before surgery. In his words:

Getting a diagnosis of cancer is never a good feeling but when you are an old senior like me, it can’t be the same as when a young person gets the diagnosis.

I will say that for me, the news was not even a close second in sadness to the news we got from Dr. C. Tardo in 1980 that Jacob was autistic. That he would probably never walk or talk. I would think any parent would feel the same way when they receive really bad news about their child. Whether it be death, illness, etc.

A lot of things go through your mind when you get the word. One good thing is you start trying to live in the moment since that’s all any of us have. The cancer will hang on to you for the rest of your life with you potentially worrying if it has come back or not. But in reality, we all have death waiting in the corner to have his chance to get you. I always tell people this life is short and is preparation for the next life. Our real life.

Anyway, below is a conversation I may or may not have had with the Lord when I got my diagnosis of chordoma cancer:

Me: Why me, Lord?!
Lord: Why not you, Mike?
Me: Was it so all my friends, family, and people I don’t know could pray for my healing and we could rejoice and give glory to you when you healed me?
Lord: No Mike, that’s not why.
Me: Was it so I can deal with having cancer and show people how to give glory to you while in the midst of the trial?
Lord: No Mike, that’s not why.
Me: Then why Lord?
Lord: Mike, this cancer is personal between you and me. I want to know if you will love me, even if.
Me: Even if?
Lord: I want to know if you will love me even if I don’t cure you of cancer.
Me: I’m 66 years old, have enjoyed living all these years Lord. No problem, yes, I will still love you if you don’t heal me.
Lord: Careful Mike. If I take you by this cancer, it will mean your long time prayer to take care of Jacob ALL of his life will be answered with a No. Will you still love me, even if?

We all have an “even if”. What is yours?

I hope that I prove faithful to the Lord.