One Tough Cookie

Jacob has a high threshold or tolerance for pain. And, it is a blessing. I’ve read you can train yourself to tolerate being uncomfortable. This is not something he learned. As far back as I remember he was a tough cookie.

His brother would start crying before the nurse even walked into the exam room with a shot. Jacob would watch them sticking him. There was a time he was having regular lab work because of a certain medication. He was a champ about being stuck. We were always nervous and each held an arm, in case he jerked, but he always surprised us.

Through his life he’s had some hard knocks. When he was attending a local high school, I got a call from the teacher that Jacob was upset and they weren’t able to console him. He had ridden the bus to school that morning and from the time he entered the building, was noticeably agitated. Flailing around, couldn’t be still, and biting his hands. I hopped in the car to pick him up and agreed, something was definitely wrong. Turns out he had broken his collarbone! Seems he bounced around on the bus and fell at some point. (It was the last time he rode the school bus.) It was one of the most maddening experiences we’ve had with Jacob.

I recall being on the phone with the head of public school transportation wanting an explanation as to why and how. Trying to wrap my mind around a picture that would not form. And crying until there were no more tears, in utter agony, that I’d not find answers.

The doctor devised a odd, tube-like wrap to stabilize Jacob’s arm. It was a really hard, sad time. A memory from then popped in my mind just now: a couple of weeks later, I was talking about it in a group and a fella spoke up and said something like, “it’s a broken collarbone, that’s not a big deal”. Let me tell you, I wanted to choke him! (In his ignorance, he truly had no idea the magnitude of the difficulty we had faced.) It was a HUGE deal coping with a broken bone in a child that had no intention of following doctor’s orders. But seriously, Jacob actually handled it like a trooper. Much, much better than I coped, mentally.

There was another time that I woke him one morning to find significant redness/bruising and scrapes on his arm. It looked like he had gotten his arm hung, maybe under the headboard. Who knows? He didn’t seem bothered, but I was. Just the not knowing and him not being able to explain. I was consumed with the how. Did he have a seizure during the night and fall?

He’ll have bruises that have no explanation. Of course, we all have that happen. But each bruise makes me wonder the cause and how much it hurt. So thankful he’s a tough cookie.

A few years ago the program director met me at our car one afternoon and said she thought something was going on in Jacob’s mouth. That he kept pushing food to one side and drooling some. I wondered if he had a bad mouth ulcer or terrible sore throat. NO. When we got home I got a good look in his mouth and he had ground a hole in a crown. YES. Thankfully his dentist got us in first thing the next morning and we walked out good as new. But, oh how it made me sick that he’d been dealing with that. And, I never saw it when brushing his teeth!

Recently, Jacob was twirling in the kitchen and his feet tangled up. I was standing near him and could see him going down but wasn’t quick enough to completely break his fall. Once upright, I could tell he was hurt. He rushed off to his room, obviously rattled. I slowly undressed him looking for a red mark or any sign of injury. Nothing obvious and within a few minutes, he seemed fine. The next day he was in the kitchen eating a peanut butter and jelly sandwich and I noticed his finger was purple. I truly thought it was a smudge of jelly. NO! His whole finger was bruised and swollen. What an awful feeling. The night before, I knew he was hurting but couldn’t find where. It was swollen enough I wondered if it was broken, but he would hold my hand and bend it without a grimace. I do believe it was jammed. He never made a sound. By the next day, it looked so much better. Never acted like it bothered him. No joke, he is tough.

In the past, Jacob would bite his hands for multiple reasons. Frustration. Doesn’t feel well. Anger. Upset. Pain. Both hands are scarred from him repeatedly breaking the skin. He hasn’t done that lately but when he does, I know something is really wrong and to pay close attention. Biting his hands, causing himself pain, is one way he communicates. My heart sinks when I see he’s been that upset. Knowing as tough as he is, it’s taken a lot to push him to that point.

If you’re a mom, you know, keenly, the desire to take any pain your children are experiencing and carry it yourself. Dads might do that, too. From my experience, Jacob is much, much tougher than me. I’ll fret and worry and figure and question anything and everything, wishing I could shoulder hurt, in any form, so he doesn’t have to.

The good news is, I don’t have to bear any burden alone. God is there to help me, rescue me, carry me. For my God is greater and stronger and higher above any other. And, He will carry your pain, too.

Praise be to the Lord, to God our Savior, who daily bears our burdens.

Psalm 68:19



I was a young first-time mom. Not teenage young, but young. None of my friends already had little ones. No nieces and nephews to ‘learn’ from. I did some babysitting, but not a lot.

And then we are told Jacob is special needs. Only it wasn’t called that. The report said, ‘severe, profound mental retardation’. And the questioning began. Did I do something? Did we do something? Could anything have been done differently to make sure this didn’t happen again? Question after question after question and then more questions!

I’m going back decades to tell a story about one incident. Mike and I were invited to spend the weekend with friends out of town. Mamaw and Papaw were on board with keeping both boys for three days/two nights. It was a welcomed get-away. We had a great time. Except the part where I spent hours that Saturday in the Six Flags Theme Park infirmary.

I missed them terribly and could not wait to get back. There were no cell phones for FaceTiming or even just a quick midday call.

Upon our return, Josh was happy to see us. Jacob was indifferent. Mamaw proceeded to tell us all the things they had done. And, that Jacob didn’t miss us at all. Or, even seem to realize we were gone.

That. That should have pleased me. Did it? NO. See. I was an insecure mom. It bothered me so much. Crazy, huh? I should have been thrilled that they made it fine, without incident. That Jacob slept well and ate well. Played happily.

Instead. It hit me hard. One of those gut punches that comes out of nowhere. Was I important to him? Why wasn’t he behaving as a typical child? I knew the answer to that but didn’t like it. Did he love his grandparents more than me?

Well over 30 years later, I still remember how crummy that felt. It wasn’t until many years afterwards that I realized I was very insecure. I didn’t know how to be a mom. I know, none of us really do. Just learn as you go! I hadn’t ‘half’ raised a much younger sibling. If anyone questioned why I was doing anything a certain way, I would feel I wasn’t measuring up. Disability does that to you. Makes you wonder if you’ll ever get it right.

I’m an oldest child and have many of those characteristics: motivated, responsible, controlling, perfectionist, confident. You can imagine how feeling like I wasn’t being the perfect mom shattered my psyche. Quickly some of the traits that were natural for me, weren’t possible. Pretty much flew out the window. Everything was out of my control. I often felt like whatever I did wasn’t good enough. Self-imposed pressure.

Fast forward to today. I lost or let go of those insecurities years ago. And not because I felt I had mastered being a super mom. Quite the opposite. I learned that I don’t have to be. A first born raising her first born all the while learning I had everything it takes to be what he needs. Only because I’m equipped by my creator. My heavenly Father who made me who and what I am.

How warped to be sad because Jacob didn’t miss me. He was in a familiar environment. He was being well taken care of by attentive grandparents. They were fantastic. This was never about anything they said but about everything I hoped to hear.

Jacob didn’t cry when we left or smile when we got back. It was such a hard reminder that he was in his own world. A world where he is loved immensely. A world where he has had immeasurable influence on me. Every single day of his life. A world where he can brighten my day, 100 fold, just by straining to see me and making eye contact as I wait to pick him up in the afternoons.

I’m thankful that my insecurities made me stronger and helped provide security for my boy.

Happy Birthday Granddaddy!

Jacob’s granddaddy turned 85 years young a week ago. Jacob was his first grandchild. From experience, I learned that a mom or a dad cannot really know what it’s going to be like to become a grandparent. Holding that grandbaby in your arms, your world changes in ways you never imagined. For the better.

My dad was so pleased and excited to be a granddaddy, and was equally grieved learning Jacob was going to be labeled disabled. The helpless grief that washes over a parent, knowing their own child and grandchild would be faced with life-long challenges.

I think about some of the many things he and Jacob’s granny have done to help us in unexpected ways. A few that stand out are, offering their car when we went to Ochsner Clinic to see a neurologist. Years later, taking the whole family in their RV to the east coast for a communication conference. Another one was that they made sure Jacob had his own bedroom in their country cabin. Those were special to us and gave them great pleasure.

Some other fond memories that come to mind when I think of Jacob and his Granddaddy – .

  • Jacob loves music. And, Granddaddy loves music, but he doesn’t like to sing. Except to Jacob. Isn’t that sweet how that works?!?
  • They both share a LOVE of hot dogs. Cooked on the grill are the best.
  • They are both big fans of Granny’s homemade sour dough bread. Probably tie for the #1 fan spot!
  • Jacob still has and uses the toy box that Granddaddy built when he was little.
  • Granddaddy liked to take the grandchildren riding on his tractor. One of my all-time favorite photos is below. Although you can’t see the tractor, you can see the big smile he had holding his oldest grand on his lap.
  • There was a time Granddaddy had a golf cart and Jacob would go riding with him all around their property and pond. At some point, he upgraded to a fancier one, referred to as the ‘mule’, and sometimes Jacob was up for a spin in it as well.

Such fun things to remember and celebrate.

Unfortunately, celebrating a birthday during the covid-19 pandemic meant we were not going to be together as a family. Though honestly, depending on what everyone has going on, we don’t always get together every birthday.

But, this one was different. As senior adults, they were doing everything they could to stay home and to stay well. They had been isolated for weeks. As much as they’d love company, they (nor we) wanted them to take any chances of being, unknowingly, exposed to the virus.

We decided to surprise him by driving over to wish him Happy Birthday from a distance. We weren’t sure how that would play out for Jacob. We hoped he’d be content to ride over, see his Granny and Granddaddy from a distance, while remaining in the van, and leave for the hour-long return drive home. While Mike and I were visiting with my parents, observing social distance guidelines, Jacob decided to get out of the van. He really wanted to see them better, go in their house, and get all nosy to see what treats he could find (maybe homemade bread or chocolate). Instead, we corralled him back into the van and knew we needed to end our visit. We said our good-byes and waved, while heading out their long winding drive with Jacob twisting to look back.

Jacob’s granddaddy had a good day in spite of the isolation. Each of his grown children made a surprise visit to their home. He saw five of his grandchildren (and their spouses) plus a great granddaughter in the same way. And, got to FaceTime with the others. It was a good birthday leaving both of them with happy smiles and one he’ll remember for a long time. All, without a single hug.

Happy Birthday, again, Granddaddy! Love you so very much! From your favorite, firstborn grandson and his parents.


Today marks four weeks since Jacob has not attended his day program. The first two were our choice. Social distancing was to be observed along with consistent hand washing. Two things that seem next to impossible for him. The second two weeks were because his center officially closed. Until further notice.

In the post, I suggested that he’d been doing really well. He is such a homebody. I wish he were more social, but his anti-social temperament has been working to his (and our) advantage. Some of my friends, with sons and daughters enrolled in the same program, have been telling me they are having a much harder time. Needing to see their pals. Requesting PEOPLE for a birthday present.

Jacob probably misses some of the folks more than I give him credit for. I know he is fond of staff members and goes looking for them to hang out in their offices. But overall, bouncing on his bed just has more appeal!

We were rocking along fine until this past week. For several days he was just off. Unsettled. Dissatisfied. Restless. Demanding. Relentless. Seemed whatever I offered, wasn’t ‘it’. He’d pick a DVD only to decide seconds later he didn’t want that one. Same thing with a meal or snack. Nothing I could do or suggest was acceptable.

I mentioned going outside with me to swing. He immediately headed out the door but before I could even clear the leaves off, he was back inside. More than once, we’d suggest going for a ride. It’s something he usually likes to do. Quickly and adamantly, he’d let us know he wasn’t interested.

Ordinarily, I am long on patience but it was shrinking by the day. I had to ask myself if he was bored. Maybe he didn’t feel good. Perhaps he was missing his routine. Needed a change in scenery. Probably tired of his parents! What clues were out there?

I found myself being frustrated and quick to be negative. I was short with him. I was thinking this is harder than I thought it was going to be. I was, I was, I was……. becoming a person I didn’t like.

One day as I sat mindlessly scrolling through Facebook, I saw where a friend had posted this:
Get up!!
If you are home today, put on your clothes! No PJs!
Wash your sheets!
Turn up the music and dance!!!

And then, I was reading in Psalms and came across these verses: Psalm 30:11-12 (The Message)
You did it: you changed wild lament (moaning)
into whirling dance;
You ripped off my black mourning band
and decked me with wildflowers.
I’m about to burst with song;
I can’t keep quiet about you.
God, my God,
I can’t thank you enough.

Between my friend and God’s word, I knew what I needed to do to get in a better place mentally! Get up. Listen for the music. Spend more time in scripture. Whirl and twirl. Burst into song!

Go ahead. It makes a world of difference. I highly recommend. And, have a feeling you will be smiling!

I made this chalkboard sign a few years ago. Nothing fancy but speaks to a positive attitude each day.

Our middle granddaughter asked me its meaning. Today is a Good Day for a Good Day! Choose to look for the good. The positive. It is there but honestly, sometimes I’m too busy moaning and miss it.

Yesterday, rather than ask Jacob if he wanted to go for a ride, I took a different approach. “Jacob, hop up. Let’s go get in the van. We are going to deliver some happiness.” Without any hesitation he went straight to the garage. We went on a three-hour tour (reminds me of the Gilligan’s Island’s theme song) dropping off goodies to family and friends. And, he thoroughly enjoyed it. Not once did he seem antsy. Not once did he want to watch a DVD. Not once did he try to unbuckle his seat belt. He was content from beginning to end.

When we took the interstate rather than back roads, there were two times that I noticed the jumbo electronic signs said, ESSENTIAL TRAVEL ONLY. Not to make light of those that are on the front lines. With everything we have, we thank you. So many others are essential to their jobs and are required to be out. We are able to work from home. But, I do believe our excursion was essential to our mental health. We came home with more happiness than we delivered!

This is the day the Lord has made, let us rejoice and be glad in it.

Psalm 118:24

Not Being Able to Speak

Not that I don’t dream of being able speak,
A day with no words can be so very bleak.

Actions can communicate for me, if they’ll follow my cue.
*Reading my mind, it seems, they have learned to do.

There are other ways. I know I’m not the only one.
Sign language for those that won’t be outdone.

I learned the signs for ‘music’ and ‘more’.
But it was hard and I didn’t understand, what for.

Technology has created some new tools to use,
I like lights and sounds as you might deduce.

There are other ways to let my thoughts be known,
Some are a lot of trouble, as I have shown.

If I could just tell them I’m hungry for banana bread.
That’s the snack I’m thinking about before I go to bed.

Or, applesauce muffins, I wish Mom would make those.
That would make me happy from my head to my toes.

This Covid-19 #shelterinplace is working well for me,
I’m quite happy at home. Really happy as can be.

The world out there is scary not being able to talk,
Home is my safe place, I sure won’t balk.

While I’m here I’ve had time to think,
Count yourself blessed if you can speak.

There are so many things I’d like to talk about,
So many questions I’d ask, without a doubt.

Sometimes I cannot turn off my mind,
But, my thoughts, they are locked inside.

I’ll give a good hug when I’m in the mood.
I can actually be a fairly affectionate dude.

But, how do I say it, when the words can’t come?
Three simple ones that make a great sum.

They know it already, it’s not a surprise.
The way I say, I Love You, is with my eyes.

*written by Jacob’s mom, by reading his mind.

“Not being able to speak is not the same as not having anything to say.”

Rosemary Crossley