No Guarantees

This poem was shared with me many years after Jacob’s diagnosis. From time to time I think about it and how wonderful it captures the feelings of my naive first-time mother frame of mind. Life rarely turns out like we pictured. Right? Right! There are no guarantees. But I do believe that changing our mindset can have a powerful impact. We all have a choice, whether we choose to take the road to negativity or determine to strive for the power of positive thinking. While I’m not always successful, it is my goal to choose the latter.

WELCOME TO HOLLAND

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Frankly, there was a time when I mourned that my life, my family, hadn’t turned out at all like I imagined it would. And part of that grieving was wishing all families had a child with a disability. It is embarrassing to admit that I let my mind go there. Maybe that was part of the bargaining or anger stage of grief. How awful to think I would ever want another family to experience pain. It shows that I felt so terribly isolated and thought if we were all in the same boat, there would be more understanding. Slowly and thankfully, as I focused on the blessings, the beautiful things, my mourning turned to gladness realizing God did not make a mistake.

I’ve never been to Italy or Holland and probably never will. But this I know, God meant for me to be right here, right where I am, right now, all along. Even if it is a different place. Because when He sets the detour sign, embracing it makes the trip worthwhile.

Always on My Mind

Our thoughts can become focused on so many different things. New restaurant in town? Check out the menu and head there soon. School? Classes, friends, exams, the future. The job? Tasks, schedules, guidelines, expectations. Newborn baby? Long nights. Short years. Favorite book? Can’t put it down. New home? It’s the dream one!

True love? Always on my mind! As it should be.

One of the aspects of having a child that cannot take care of themselves is making sure their needs are being met. I think it is safe to say that universally, moms and dads approach parenting differently. In one family, the mom may be the disciplinarian and in another, it may be the dad. In one family the dad orders the pizza and in another, it may be the mom. Family dynamics vary and there isn’t one that is solely correct.

However, it seems when it comes to emotional connections, most of us Mama Bears are just wired with a heightened sense of responsibility. Caution. A sixth sense. An internal clock. A duty that won’t go away. Dear dads, this does not in any form or fashion suggest you are not connected to your child emotionally. Or in any other way. I watch men in both of our families and am in awe of the example they set. All I am saying is this, in my personal experience, I cannot let go or ignore some things as well as my Mr. Man. Maybe it is just me. Part of being a parent is becoming selfless. Responsible for what God has entrusted to your care. And, whether you have toddlers or your children are grown with children of their own, a parent is always a parent. Our families are of utmost importance no matter the age. Agreed? Thought so.

Here’s the thing I’ve come to realize. Jacob is always on my mind. Not every second of every day. But a large portion. Every day there is a mental checklist. Responsibilities to be carried out for his well being and sometimes for ours. I am making sure he is being taken care of, he is where he is supposed to be, he is safe, he is fed, he is comfortable, he has taken his medicine, he has a sitter scheduled when needed, he goes to bed, he is well, he is…, he is…, he is…. Get my drift? It is hard to be fully present when the checklist consumes our minds. Thankfully, we have a plan in place where there are others who step in for me from time to time. I can be away and return home realizing I didn’t worry about him while I was gone. Yes, I thought about him and may have called to check in. On my mind but not consuming my thoughts.

The main lesson in Marriage 101 is put your spouse first. Before your job, before your favorite team, and even before your children. As a spouse, we hope our partner is always thinking of us. Right? We’ve seen families where the children are the center of the universe and often it isn’t pretty. What happens though when demands of that child or children require more than the usual attention? Beyond the 20 years when they hopefully set out on their own? When they are not capable of following the path of self-sufficiency? How do you find that balance of investing in your mate or yourself?

I remember early on coming to the realization that often a child with special needs is being raised by one parent. Sometimes the all-consuming nature of raising that child, sadly, can destroy a marriage. Every marriage takes work. Every marriage is hard. I’ll go out on a limb and say that every marriage that produces a disabled child has to work extra hard. If your husband or wife got to the point that they couldn’t help carry the load, share in the decisions, decided to throw in the towel, I am truly sorry. My heart hurts for you. Let others help bear the weight when you feel it heavy on your shoulders. There are also those that are single and made the conscious choice to adopt a special needs child. And, what about families where the mom or dad of the child has passed away? Hard scenarios that seem impossible. In any case, we have what it takes to ‘just do it’ when it comes to raising our child(ren). Use every resource available to help you navigate your situation.

I like what the Bible says in Philippians:

Rejoice in the Lord always; again I will say, Rejoice. Let your reasonableness to known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there any excellence, if there is anything worthy of praise, thing about these things. Philippians 4:4-9

It isn’t normal or healthy to constantly fix your mind on your child. The mental space dedicated to them can completely take over snuffing out potential for relationships with family and friends. The emotional toll will drain and exhaust you. Yes, I’m telling you, it will. I have learned to be intentional with respite care. Plan date nights. Call girlfriends. Sign up for a class. Take up running. (Not happening.) Reach out to others. Develop a hobby. Memorize scripture. Throw a tea party. Escape in a book. Meet friends out for dinner. Schedule a game night. Take care of yourself!

Always on My Mind is a love song we’ve heard for decades. The story of ‘well I did something stupid but you were always on my mind’. Meeting family needs is a balancing act. Give your loved ones the attention they deserve but remember to be your best, you can’t obsess. Think about these things.

Do Try This at Home

So many of the things that bring Jacob pleasure require batteries. Through the years we have spent a small fortune on batteries. We use rechargeable ones as much as possible. I am not exaggerating when I say Jacob is a battery expert. Not as far as what type of battery performs the best or the longest. But he can detect WAAAAYYYYYY before we can when a battery is weakening. If he were able to keep data, he could have a job as a toy tester!

At least 15 years ago there was a V-Tech toy that he loved. It had this one button that when pushed, would say, ‘ya wanna be a V-tech star?’. It was his favorite and he played it all the time. It is the first toy I distinctly remember him wanting batteries replaced before we thought necessary. And in his determination, would not leave us alone until his mission was accomplished.

There are numerous toys and musical books that he’ll bring us, or a sitter, and pretty much demand that we replenish batteries. One thing he loves, that falls in the toys category, are musical books. You know those books with a strip on the side that has various pictures that can be pushed to play sounds that coordinate with the story? Yes, those. They are powered by tiny button cell batteries. Often the books will wear out (or pages get torn up) way before the musical strip. Jacob expects the strip to perform a certain way and when it doesn’t, he wants the batteries replaced. Like, NOW! I cannot count the number of times that we (or his sitters, at our suggestion), have had to hide the book and/or musical strip to distract him because it obviously still worked and replacing those button batteries isn’t a quick fix. And, when we have changed the batteries, it sounds exactly the same. To us.

Jacob has loved a keyboard for as long as I can remember and has had a nice size one, on a stand in his room, for many years. Obviously he cannot bring it to us when the batteries need replacing. At times, we have used an adapter to plug it up but found that rechargeable batteries worked better than an adapter that he can easily unplug or dislodge. So, when his discerning ear told him new batteries were needed, he’d come get us taking us back to his room pointing at the keyboard. Easy to understand and remedy.

Recently though, instead of taking us to his room, he would appear with a battery in his hands. One (of six) he would have removed from the charging station. His way of saying, ‘please, put fresh batteries in my keyboard’. Again, easy to understand and comply. The only time it’s frustrating is when you’ve just replaced batteries a few hours before. Seems battery performance is not always the problem!

Left On/Off button missing.

Bringing us a battery means, ‘I need you to come fix this’. Sometimes, it clearly wasn’t the keyboard batteries but him having removed a button rendering him unable to play a certain tune or sound. Whether the removal was on purpose or not wasn’t clear but replacing it becomes urgent. Numerous times I have crawled around on the floor, looking under furniture and every other place searching for a really small silicon button. Surprisingly, I could pop the button in and he’d be satisfied.

By now you know that Jacob is gifted with an extra portion of tenacity. He gets something on his mind and his focus is sharp, steady, and unrelenting. That is a such a wonderful trait to have. But, can certainly be an unwelcome interruption when we have something else going on. He does a couple of funny things to get your attention. First, he will lean in and kiss you. Bless his sweet heart. Well, of course I’m going to stop what I’m doing. Who can say no to a, ‘I’ll be your best friend if you help me’ kind of kiss? Not me, and he knows it! Second, if I’m reclined in the recliner, he is going to reach down to release the lever to lower the foot rest. Of course, I cannot be of any use to him in a reclining position. Now it’s his turn to help me so he’ll do what it takes to get me up and moving faster!

Such was the case recently. Mike and I were watching TV in the den. We had both already been to his room, at his request, to fix something. More than once. Often we’ll take turns coming to his rescue. We heard Jacob heading back to the den, I looked around and Mike had thrown a blanket over his head. I died out laughing!! It was quite a good camouflage in his attempt to hide from Jacob. Now go ahead and admit it—you’ve probably hidden from your child for various reasons. Won’t mention names, but I’ve heard stories from J & A about them hiding in their laundry room to eat sweets they didn’t want their kiddos to know they had! So next time you need to hide, you might want to try this at home. Maybe throw a blanket over your head. It didn’t fool Jacob (or Gracie) but it’s worth a shot!!

This week, Jacob removed a button from his keyboard again. In the past, I have been able to locate and replace it. Not so lucky this time as it was no where to be found. And replacing batteries was not the answer. He got so frustrated, that I had to remove the keyboard from his room to redirect his attention. The next day while he was away, I fashioned a button out of putty. I knew it wasn’t going to make a connection but also was quite certain the other times I put the original button back in place, it wasn’t doing anything either.

Left On/Off putty replacement button.

Keep in mind, neither Mike or myself can operate the keyboard. Yes we can turn it on and off but that is the extent. Jacob can push buttons to find the built in songs he wants but we have yet to be able to repeat his actions. So, we’ve never been positive how a ‘missing button’ would affect his concerts. Either way, the button was a decent match and I couldn’t wait to see his reaction. When he came home, I complied with his new battery request. Didn’t point out the new button but he seemed pleased as I watched him turn on the keyboard. For a solid two hours he played it with great enjoyment. At this point I’m feeling pretty good about the fake button and thinking I’ll paint it later to be an even better match. That evening, Jacob’s sitter came over and we left for a date night. Arriving home, she told us he had removed the button and she wasn’t able to find it. Neither could I. Here we go again …

Seems I need to be prepared to hide under a blanket or dash to the laundry room. Which would you recommend?

I Don’t Like You

But I love you.

Ever felt that way? There are days that Jacob just puts me to the test. I’ll do something that obviously he doesn’t like, doesn’t agree with, or just makes him mad and he reacts. Negatively. Can’t make everyone happy all the time. I am bound to get a reaction out of him. And it is usually physical. He may bite his hands or stomp around fussing. Or, direct his frustrations toward me and may grab me, pull on my clothing, dig fingers into my arm, slap (not with open hand force)/swipe at me, etc. All annoying things that I could do without!

If you had siblings, cousins, or neighbors that you played with as a child, you probably played some sort of chase or game to antagonize the other. If I remember right, there was something we did chasing each other—getting a good tap in and saying, “touched you last”. Jacob has a thing about having to touch us last. He has to get the last lick in. Not that we are punching each other but seems his nature is, ‘I have to touch you last’. Sometimes it is funny.

But not always. There are days he absolutely brings out the WORST in me. That’s the brutal, honest truth. Seriously, I take all I can and then I don’t like who I become. Please tell me I’m not the only one who can become a dreadful being no one wants to be around. And especially not claim as their mom! Shameful when I realize my behavior has set a really crummy example. I let him get the best of me and it is maddening. He knows which buttons to push. Don’t your children know those buttons?

Last night he got me good as we were getting him ready for bed and I walked out of his bedroom MAD. (Brutally honest.) I may or may not have slammed his door on my way out. This morning I felt like his mood matched the one I was in last night. It was a painful reminder and I deserved his attitude. He proceeded to show out. It didn’t take long though and he calmed down and seemed to be in a better mood. But as I was trying to get him moving toward the garage, he had to get in one more swipe at me. ‘Touched you last!’ This time, I was able to laugh it off. He deserved some grace.

“I don’t like you, but I love you.”

Could be Jacob singing to me or me singing to him. You pick. I have a feeling he thinks it as often as I do. Thankfully love runs deep and we don’t have to always like each other.

Updated with photo added March 9th. We went out to eat last night and this was from my fortune cookie. I literally laughed out loud. Some would say Confucius is trying to tell me something. I think God has a sense of humor. Mike assured me Jacob will let me back in.