“Jacob smile!” “Say cheese” sure doesn’t work with a non-verbal kid. While I’ve never successfully gotten a posed picture of Jacob smiling. I have gotten some really fun photos.
13 For you created my inmost being; you knit me together in my mother’s womb. 14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 15 My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. 16 Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.
Don’t have to tell me to smile when I see this sweet fella’s face!! So thankful God created this handsome face for me to love!
This was a Facebook post from almost three years ago:
The morning with Jacob was Rough with a capital R! First wake up was 1 hour before I wanted to leave home. By all appearances, he slept great last night. He was sleeping so soundly that he did not want to get up. After a couple more times of me going into his room to get him moving, he finally arose.
Time to get dressed and I usually open a drawer and tell him to pick a shirt. Well today, he was bent on opening a different drawer and getting out a winter pajama shirt. While I steered him toward short sleeves, he’d jerk away whatever shirt I had in my hand, toss it and pull out a different shirt. Finally, after a wrestling match, I got him dressed. (And he put shirts back in the drawer as pictured.)
Do you know those games at the fair where you try to hit a moving target to win a big prize? I liken that to putting on Jacob’s socks. No joke. He is flailing around moving his foot back and forth, up and down, all around, and then curls his toes under. Once I’ve achieved getting a sock on, he may take it off only to start the process again. It feels like I should have won a gigantic teddy bear by the time I got both socks and shoes on today.
All this time, Jacob is being a bully. That is hard for me to say but there is really no other word to describe it. Strong arming me, swatting at me, making me sorry I woke him.
Once we get in the van, he is cooperative. Probably tired by now! I know I am. We’re buckled in and backing out and the toy that goes everywhere with him, WILL NOT play. UGH! Arggghhh!! I cut the van off and go back in the house to retrieve a working toy and change out the fobs on it (in case it gets lost).
Once at his day program, he sits in the van for 13 minutes refusing to get out. Different staffers come by and greet him, I tell him all sorts of reasons he needs to get out so that I can go to work. The van is cut off so he can’t watch a DVD or feel all comfortable while he waits, all the while, I am starting to get hot (in more ways than one)!
Once he exits and goes into the building, I am so frazzled that I drive to work in tears. I really wanted to just go home. I am wishing medical marijuana was legal in our state—for me, not him. Okay, maybe him. Rough morning I tell ya.
When I went to pick him up in the afternoon, he came right out and quickly got in the van. A staffer said, “Jacob went on a ride today. Across the spillway, by the fire station, the church, and across the spillway again. He had a good time and good day!”
For the second time that day, I drove away from SV in tears. But this time, happy tears. So thankful that while the easier thing would have been to let him stay home today, I didn’t. He enjoyed being the sole passenger as two staff members drove him around to take in the scenery and beautiful day. Thank you, Lord, for the little things that bring him pleasure and make my heart smile.
Win some, learn some.
I (we) have learned a lot through the years of parenting Jacob. Sometimes, we choose to let him have his way. Good or bad, it is the best solution some days. Don’t borrow trouble, focus on the situation at hand! Sometimes we use a bribe. Mini Hershey bars have come in handy when we need him to follow through on a task. Sometimes what seems like a lost cause, can turn into a win for all of us.
No matter how your day starts, when it ends, there was probably something you can list as a win and maybe you learned something along the way, too.
3 There’s more to come: We continue to shout our praise even when we’re hemmed in with troubles, because we know how troubles can develop passionate patience in us, 4 and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next. 5 In alert expectancy such as this, we’re never left feeling shortchanged. Quite the contrary – we can’t round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!
Jacob has been back attending his day program for about 5 months now. We’ve had a lot of different things going on so the familiarity is helpful in Jacob’s contentment level and us juggling various commitments.
Not long ago when we arrived to pick him up, one of the young ladies that attends, said, “Jacob has gone on a walk with S.”
Where he attends, it is actually 2 buildings. One has three suites, each having it’s own purpose and the other is where Jacob spends most of his days. But he likes to go visiting next door. I’m told that happens fairly often. Maybe he enjoys being outdoors and circling the area or more than likely his thing is going door to door to check out what everyone is doing.
Back in May, the manager sent me some fun photos of one of those days.
Seems Jacob has picked out a new office space to call his own. I love how he makes himself at home and the ’real owner’ lets him do that. If you are keeping up, this would be his third office space since he’s been in the program. That’s a lot in 8 1/2 years!
Another day of being nosy. We’ve always joked that Jacob wants to be in administration there. He continues to prove our point!
We had his annual care plan meeting a couple of month ago. It felt really great to hear just how comfortable Jacob is when he is away from us. That says a lot about how the staff members are in tune with him and are doing everything they can to meet his needs.
Jacob is not one to want to go on a group outing. He is happy to explore whatever is within his reach. At drop off, I imagine him going through, in his mind, what he wants to do that day. Check out the snack closet and pick a favorite to eat. Maybe S brought gummy worms. See what Mr. B has on his desk. Listen to music. Hear about A’s mission trip. Explore next door. Kick off his shoes and stretch out on the couch. Look to see if E brought his guitar.
Eight years ago we moved to be closer to this program. A move that simplified our life in many ways. I’m thankful it worked out and I’m certain Jacob is, too.
This was posted June 10 and Jacob’s granddaddy was featured. This past Sunday he took his last breath on earth and woke up in heaven. We celebrated his life yesterday. I’ll blog more about him another day but for now, sharing this one again.
I was raised to focus on the positive. Training yourself to look for the good, what is right, worthwhile, goes a long, long way toward a healthy mental state.
Today’s blog is not directly about Jacob. But, it is about how I respond to him and not letting my circumstances pull me down. There is something to be said about looking on the bright side. It will make today, tomorrow, and the day after that better!
The story below was shared with me probably 20 years ago. I cannot give credit to the author because I haven’t been able to confirm.
Maybe it will give you pause and something to think about as well.
The 92-year-old, petite, well-poised and proud lady, who is fully dressed each morning by eight o’clock, with her hair fashionably coiffed and makeup perfectly applied, even though she is legally blind, moved to a nursing home yesterday. Her husband of 70 years recently passed away, making the move necessary.
After many hours of waiting patiently in the lobby of the nursing home, she smiled sweetly when told her room was ready. As she maneuvered her walker to the elevator, I provided a visual description of her tiny room, including the eyelet sheets that had been hung on her window. “I love it,” she stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.
“Mrs. Jones, you haven’t seen the room…just wait.”
“That doesn’t have anything to do with it.” she replied. “Happiness is something you decide on ahead of time. Whether I like my room or not doesn’t depend on how the furniture is arranged, it’s how I arrange my mind. I already decided to love it. It’s a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do. Each day is a gift, and as long as my eye open I’ll focus on the new day and all the happy memories I’ve stored away, just for this time in my life.”
She went on to explain, “old age is like a bank account, you withdraw from what you’ve put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories. Thank you for your part in filling my memory bank. I am still depositing.”
And with a smile, she said: “remember the five simple rules to be happy:
Free your heart from hatred.
Free your mind from worries.
Expect less and enjoy every moment.”
Jacob’s Granny recounts her own grandmother talking about special days giving her lots to think about. Fun memories that were deposited in her bank.
Now she is doing the same. Granny started a Donut Day with her great-granddaughters (Jacob’s nieces). While it is a tiring day from start to finish, she wouldn’t trade it for anything. The giggles, sprinkles, tasting, powdered sugar, smiles, and hugs are all going in her memory bank.
Free your heart from hatred. Proverbs 10:12 says: Hatred stirs up conflict, but love covers over all wrongs.
Free your mind from worries. Matthew 6:25-27 says: Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?
Live simply. Philippians 4:11-13 says: I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.
Give more. Acts 20:35 says: You’ll not likely go wrong here if you keep remembering that our Master said, ‘You’re far happier giving than getting.’ The Message
Expect less and enjoy the moment. Psalm 16:11 says: You make known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.
A week ago, we received hard news about Jacob’s granddaddy. Words like brain atrophy and dementia. A decline that we saw but didn’t seem real until a neurologist said so. Thankfully, he is still able to recall some new information. But it is those special memories he deposited through the years that will bring him more peace and joy. He’ll have those to draw from on down days.
Yesterday as I visited him, his speech therapist was working with him. He said, “tell her about Jacob”. I hope memories of him singing to Jacob will bring him happiness. He’s always loved and appreciated music but he wasn’t one to sing. But he did to his first born grandson. Recent events may not stick with him long but he has deposited much to make him smile.
Being with him reminds me to focus on the good times while we make memories. While he interacted with hospital staff last week, he said, “if you are friendly to people, they will be friendly back”. I’m soaking up his wisdom for the day I’ll need to make a withdrawal.
Create a positive pause and see what you might deposit in your memory bank. You’ll be glad you did as your happiness grows.
Yesterday marked four weeks since I had shoulder surgery. It was the second time on my dominant side making it all the more frustrating. It had been 21 years since the first time and neither of us had much recall of what that period was like as far as what I was or wasn’t able to do and how much Mike had to pitch in.
By the time surgery rolled around, I had worked up such a dread because I could remember how difficult it was to sleep post-op and the long process to rehab my shoulder.
This time would be different in that we’re retired. Hopefully it would make my recovery easier on us as whole.
Mike had to take my place. Instead of being on house arrest, Mike put me on bedroom arrest. Yes, I was quarantined for my protection. Having an arm in an immobilizer and being terribly sore, was not a combination that Jacob could respect or understand well.
I knew there would be things I’d need to let go of for a time. Jacob being clean shaven. Crooked clothes. A chocolate smudge or juice stain.
But, what I had not thought about, would be hearing what happens in the next room. One evening as I sat in the recliner, shoulder iced down and reading, I could hear Mike and Jacob. We were separated by a wall. It was really special hearing them and did my heart good. Mike was singing, “you get a line, I’ll get a pole, we’ll go down to the crawdad hole…” to entertain Jacob. I enjoyed the one-sided conversation as he offered Jacob different options to eat – breakfast pizza, brownies, banana bread.
I heard silverware rattling and knew it was the sound of the dishwasher being loaded. He was in the thick of it – doing everything involved in taking care of Jacob from the beginning of the day until lights out. He left the kitchen clean every evening, kept up with laundry, vacuumed, gave our golden retrievers a bath, delivered breakfast to me, and made sure I got meds on time and had ice ready to go.
Mike didn’t know that I had been listening to my guys. Wanting to be in the middle of them myself. I don’t do well being on the sideline. Often I would watch Jacob via the monitor in his room. I really, really missed him.
More than once Mike suggested I fire him from his position. He had job security whether he wanted it or not! No way was I going to find a replacement.
Within a couple of weeks, he was making tuna salad, meat loaf, and spaghetti. He mumbled under his breath that he might like cooking – with direct supervision. He even made Jacob brownies for his birthday!
I didn’t like being on bedroom arrest. But I never once wondered about my boy’s well-being. It allowed me to focus on my recovery. And, the blessing of a really good caretaker.
Mike earned an A+ from me all the while I sat in my recliner in the next room. A high grade doesn’t mean all that much to my man but maybe it will stop him from threatening a one minute notice rather than a two week. All in fun!
If not today, one day very soon, you’ll know the joys of being a mother. Happy Birthday, Terri. We love you so very much,
Mom and Dad
Jacob’s due date was close to my birthday. He wasn’t born that day but a week later. Tomorrow is my firstborn’s birthday. And I have, without a doubt, experienced the joys of motherhood with two amazing sons.
My Dear Jacob,
You became my world. Your well-being was my number one priority. Every, EVERY first-time parent understands that no amount of reading, classes, observation, etc. could possibly prepare me for all that went along with being your mom.
I will never forget you being placed in my arms. The wonder and miracle that you belonged to me. The gamut of emotions: LOVE, fear, worry, excitement, doubt, nervousness …. I felt them all plus more. Mostly smitten, in love.
Colic was hard on both of us. I called the pediatrician’s office so many times, it became embarrassing. I thought about changing my name. Felt the nurse was thinking, ‘oh, it is HER again’!
The pure bliss of watching you sleep on your daddy’s chest. Thanking God for the best gift on earth.
I can still picture the first time you giggled. I was holding you in my lap while sitting on the bed and gently bouncing you. Your back was up against my stomach and you could see yourself in the mirror and you GIGGLED! It was the best. From that moment on, as crazy as we must have appeared, the mission was to repeat it. Parents are funny that way.
I remember taking you to the mall for a picture when you could barely sit up and the photographer going on and on about your beautiful eyes. She was right and I was beaming.
Never uttering a word but babbling dadadadadadada. Oh how I lived to hear you speak. I cannot imagine how difficult it is to live in a world where you can’t. The good news is you will one day. When we are in heaven together. I cannot wait to have a conversation with you.
You have been my teacher: 1) take your time, rushing doesn’t help you get anywhere faster. 2) patience is indeed a virtue. 3) don’t judge others. 4) be yourself. 5) what matters most cannot be seen. 6) enjoy the music. 7) find things that make you smile. 8) don’t try to impress others.
You have made me a better person. And, changed me and the world without trying. Your smile makes my day. Every. Single. Time.
I wish for you joy and contentment. Peace and security. To know and feel the everlasting love of God. Prayers you will have tender loving care your entire life. As much as I want the very best for you, it is our Heavenly Father who will make sure it happens.
On October 27th of this year, we got some news that was difficult to process. I hinted at it in the Stinkin’ Thinkin’ blog post. I asked my man (husband and Jacob’s daddy), Mike, if he might sum up his thoughts about his cancer diagnosis and this is what followed:
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 on 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?
Stuffed Bell Peppers; BBQ with *Baked Beans, Potato Salad, and Rolls; Pulled Pork Sandwiches with Deviled Eggs and Slaw; Chicken Parmesan with Steamed Green Beans and Green Salad; Fried Chicken with Green Beans, Turnip Greens, Rice and Gravy, Fried Green Tomatoes, Squash Casserole. Deer Sausage. Watermelon, fresh picked blueberries, fresh tomatoes, bananas. Plus, *brownies, almond cake, cookies, more *brownies, pound cake.
Does that make you think of a family reunion? It does me! But that’s not the case here.
I’m two weeks post-op from my third rotator-cuff repair surgery. Second on my dominant side. It was obvious 5 months ago that I’d experienced another tear. Lots of tears were shed between then and now knowing the reality would involve a hard fix.
Here’s the thing, the How to Prepare for Rotator Cuff Surgery manual had a long list of what to expect. Things to do before, day of surgery, and things to do after. Top of the list of after-surgery guidelines: YOU WILL NEED HELP AT HOME.
No problem. Mr. Man signed up.
What I wasn’t prepared for was the out-pouring of help from others. Since surgery, over two dozen families have served us. Loved on us so beautifully.
Evidenced by that long list of amazing food! The three of us have eaten so very, very well. *Jacob ate more than his share!! And it made me so very happy!
Mike is thinking I need to have surgery more often! He is kidding. He BETTER be kidding! The last 12 months have brought on too much as it is. Yet, over and over again friends and family have been the hands and feet of Christ.
Besides all of the mouth-watering food delivered to our front door, we received calls, texts, gifts cards to local restaurants, big surprises, and little happies. More offers of meals. And cards, many beautiful cards. Two friends sent sweet cards (pictured) saying, “I thought Jacob might like this card, too.” And he did!
Sometimes, it’s awkward being on the receiving end of a blessing. Even when you need help. Years ago, a precious Sunday School teacher I had, talked about something similar. When sometimes pays you a compliment or does something nice for you, don’t feel like you have to deny or make them feel as if they shouldn’t, because it is undeserved. Instead, receive it as a beautiful flower and at the end of the day, take your bouquet and offer it up to God. He is the giver of all good things.
Whether it’s a meal or offering an ice machine I’d need for aftercare, it is easy to say, I’m fine. We’re fine. That is often my first response. I’m reminded that serving others is a win-win. With the exception of a couple, I would not know these families if not for Jacob. What a gift they have been to us through the years.
I look forward to being able to pay it forward one day. It brings me great joy to do for others. Maybe this will give you ideas of how you might help a family in need (NOT US – we really are good!). If I’m making brownies for others, I’ll need to hide them from Jacob first. Or make a double batch.
We’d had company over the weekend. Jacob had been quite good while they were here but obviously happy for things to return to ‘normal’ once they left.
He woke on his own that Monday morning, took his medicine, got dressed without a struggle, and was ready to go to his day program.
Heading in pretty quickly, he got to the entrance at the same time a few other people arrived. That caused him some angst. It seemed he handled it fairly well and was going to be okay. I backed out of the parking space and looked up to see Jacob hurrying out of the building. Oops. His daddy was with me so he jumped out to steer him back inside. Only Jacob wasn’t interested. They wrestled some and Mike backed off and gave Jacob some space. It took a few minutes and Jacob did a little exploring but finally went in the building and we breathed a sigh of relief.
Those mornings, I half-way expect a call that Jacob is having a rough day. That almost never happens. But I’ve rarely seen him try to leave as soon as he got there.
It was impossible to know what was going on in that sweet mind of his. He is unpredictable, if anything, and it reminded me of two afternoons about four years ago. These were the Facebook posts.
Jacob ran from me this afternoon and ran toward the street going in front of the other building. The manager and nurse happened to see it play out and joined me in trying to head him off. He sat on the ground between the parking lot and street and was very uncooperative. It seemed like hours but we were able to finally get him loaded.
Before I got out of parking lot, he unbuckled his seat belt so I stopped and put the safety clasp on.
As we turned into our neighborhood, he shimmied under the seat belt and proceeded to attack me from behind. Pulling my hair, clothes, and arms. I was afraid we’d wreck before I could get to our home.
Twelve days later
Upon picking Jacob up he didn’t want to get in the van, but instead went toward the business next door. As I attempted to veer him to our van, he hurried toward the street. While I tried to get a good solid hold of him, he put his arm down the front of my shirt. I was able to free myself from him and move him in the correct direction. He then put his arm down the back of my shirt and got a hold of the hem. I really thought he was going to pull my shirt off then and there for all the world to see. It was soooooo terribly frustrating.
Thankfully two staff members, J & T came to my rescue and the three of us got him secure and ready to go.
If you’ve ever been around Jacob and gotten too close, you have probably experienced him put his hand down your shirt. It has nothing to do with wanting to touch you and everything to do with venting his frustration or wanting to frustrate you. And, speaking for myself here, he is successful every time.
Thankfully, we’ve seen less and less of that behavior. Last week, the manager saw me drop him off and walked out to speak. She proceeded to tell me how much they’ve enjoyed Jacob’s return to the program. How several staff members had commented that he has been more calm, cooperative, and social. It was such a blessing to hear those words.
They echoed in my mind last week when Jacob put his hand down his dad’s shirt on the morning he exited so quickly. I was so appreciative of the timely encouragement that came just a few days before.
His unpredictable behavior is always going to be part of Jacob. Even when we ‘feel’ it coming and brace ourselves. There are days, he seems to have the upper hand.
It sure is great to know that he has way more good days than rough mornings or crummy afternoons.
Thank you Lord, that you never change. We can trust your presence even in the midst of unpredictable moments.
Being the creature of habit that Jacob is (admittedly, I’m the same), he notices when something is different.
Most days that he attends his day program, his dad and I take and pick him up together. If it turns out that only one of us can, he will do a double-take as he exits the building.
Last week, Mike had an afternoon appointment so I was running solo. Jacob came out of the building and looked in the driver’s window and I could tell he was wondering why I was picking him up alone. He got in the van fine and was compliant on the way home. When we went inside, he did a quick room-to-room survey. Once he’d made it through the house, he did a U-turn and headed to the garage.
I watched to see what he could possibly be doing. Sweet buddy, opened the side door and got in. I was following bewildered that we had just gotten home and he was getting back in the van.
He was waving wanting me to buckle him up when it dawned on me. His daddy wasn’t part of the pick-up team. He assumed he was home. He wasn’t. I do believe Jacob thought we needed to go get him.
When I explained that Mike would be home in a couple of hours, Jacob accepted my answer and went back inside.
It was really special and funny at the same time.
Not long after that, Mike was actually out of town for an overnight trip. I got Jacob ready for bed following our usual nightly routine. Right before we were doing lights out, Jacob jumped up, pulled his window blinds aside, and peered out. You guessed it, looking for his daddy’s car!
He might be getting tired of me!
In honor of Father’s Day, from Jacob to his dad: I’m so happy you are mine and I’m your Cooter Bug. You are the very best daddy! I’m lucky that I get to live with you. Thank you for being my best friend! I love you so much!!