Author Archives: Darla Johnson

About Darla Johnson

I'm a 40-something wife and mother of 3. My husband and I have been in youth ministry for 20+ years. I'm an RN by trade but have a varied work experience background. I'm in love with my God, my family, my "framily" and coffee (with cream & sugar, thank you).

Are “Special Needs” Hard on your Marriage?

Have you ever received a live plant as a gift? Maybe it was a tree or bush and intended to be planted outside. Perhaps it was too delicate for the outside elements and therefore intended to be a houseplant. Either way, the plant needed a specific amount of sunlight, water and other nutrients. Once in a while it might have needed extra care such as removing the dead leaves. What would happen to that plant if it didn’t receive sunlight? Or it never received any water? Or it became ill with some type of disease and you just left it alone? The answer is obvious – it would wither and eventually die.

We can draw the same analogy with relationships. If you never communicated with someone you consider significant in your life, that relationship would likely cease to exist.

In my series of articles about navigating life when you care for someone with some type of disability, I’m sharing with you some of the jewels I’ve uncovered along the way. Whether the person in your life with the disability is a child, parent, other relative or a friend, I believe many of these principles are applicable to you. This one, however, is a little more specific. I want to talk about your relationship with your spouse.

Just like a green plant, your relationship with your spouse is very much a living thing. Your spouse needs sunlight (your warmth, love and affection). Your spouse needs water (your acceptance, honesty, praise and admiration). Your spouse needs nutrients (your undivided attention, and actual meals together wouldn’t hurt a thing). Sometimes your spouse even needs a gentle pruning (the healthy “checks and balances” that thriving marriages have). Do these things with each other consistently and I can almost guarantee beautiful results.

However, the reverse is usually also just as true. Ignore and avoid your spouse, withdraw affection, and keep secrets from him or her, and I can just about guarantee disastrous results. Even if these negative actions are unintended or subconscious, they can still have such a damaging impact on your marriage.

If you care for someone with a disability, or in some way another source puts a strain on your relationship with your spouse, you’re going to need to be very intentional in working to keep your love alive. Historically, statistics have shown that having a child with special needs places an extra strain on a marriage to the point that it commonly was part of the reason a marriage ended. The good news is, you can choose to not become part of those statistics! My husband and I vowed over 20 years ago to love each other “for better or for worse, in sickness and in health, ‘til death do us part.” We of course had no idea what the future held for us when we made those promises. And it hasn’t always been easy, but I can attest that having children with disabilities has brought us closer together rather than driving us apart.

I’d like to offer up some ideas on nurturing your marriage. You can begin these right now and most of them cost nothing but some time, forethought and possibly swallowing some pride (if necessary). None of these are earth-shattering, but they could be a big game-changer for you and your spouse.
Tell each other, “I love you,” every morning first thing and every evening as the last thing you say to each other. While you’re at it, may as well share a smooch then too.

Praise your spouse in public and in front of the kids. If you’ve been making negative comments about him/her in public and in front of the kids, now is the time to stop that – it’s very damaging to a person’s ego and gives the idea to the other listeners that you don’t value your partner much.

Leave a love note for him/her to find. This doesn’t have to be an eloquent or lengthy poem. You can just draw a heart, write, “I love you” in it and leave it where it will be found. The note might be an especially great idea if you don’t see your spouse at the beginning or end of your day due to work schedules.

Send an affirming text message or email during the day.

Make his/her favorite meal or treat. Or make plans for a sitter and go out for a meal together; again, work schedules may dictate which meal this is. Breakfast can be just as romantic as dinner if you approach it that way.

Figure out a time each week the two of you can steal away and be together and talk about things that don’t revolve around the ones you provide care for. Dreams, plans and even things that may never happen are fun to consider together, like a little mental escape from the day. You don’t even have to leave your home to do this, go to your room and shut the door to be unavailable for 15-20 minutes.

Choose a book to read together and talk about it. If you’re not a reader, then choose an album (old or new) to listen to and discuss.

Hold hands.

Take up a hobby together: hiking, biking, woodworking, photography – the sky is the limit. Be creative! You may just discover a family business here!

As important as it is to say, “I love you,” it’s at least as important to learn to say, “I’m sorry.” We’re human, so we’re prone to making mistakes. We usually are the most genuine with our family, which lends itself to occasionally being not-so-nice to our spouse and kids. Especially when under any kind of stress. So learning to admit fault and seeking forgiveness goes a long way to happiness and healing in a marriage.

These are just a few ideas. And they’re kind of generic, so I’m sure you can make your ideas even more personalized and special by putting a little thought into it. Isn’t your marriage worth the effort? Of course it is! Going this road together is so much better than doing it apart from each other, because we were never meant to walk alone.

***This originally appeared as an article on the Good Men Project website****

It’s no Fantasy to be an Island

If you’re reading this, you’re probably not a hermit. And if you’re not a hermit, then you probably have somewhat of a support system of friends, family members, co-workers, neighbors, and other circles you may be included in. I certainly hope so, because everybody needs somebody. None of us were meant to be an isolated island. Have you ever thought about why solitary confinement in a correctional facility is such a powerful punishment for inmates? It’s because isolation is something we humans tend to view as a negative situation. If you have a burden of some kind, feeling isolated or alone can be especially difficult.

If you have a child, parent, or someone else for whom you provide care, then you’re in need of a good support system. This is very true if you care for someone with a disability. It takes a lot out of a person to care for another, but I dare say it might be a tad bit more depleting to care for an individual who has a disability of some variety. My husband and I have one child without any disability and two children with them (and one of those two children has multiple diagnoses). I can attest that I spend more time caring for the two children who have the greater needs.

They have multiple specialists that they visit every year, so we make several trips a year (it’s a 2.5 hour trip one way to the building where all their specialists are). Their diagnoses create the situation in which they need to have an IEP (Individual Education Plan) at school, so that means multiple meetings each school year with their team of educators and therapists. Lately we’ve had a lot of lab work, ultrasounds and even an MRI, so more appointments. This short list doesn’t account for the extra time at home focusing on our youngest one’s needs for personalized interventions.

Any time you start a new job, look into pursuing a new hobby, want to begin any unfamiliar endeavor, you want to find some experts to learn from. You may need some training, some expertise. Ideally, you’d connect with someone who has walked the path before you. The traveler further down the road can warn you of the bumps and potholes, the dangerous curves and the steep inclines. He can warn you of the scary things that lurk in the darkness, so that you’ll be ready for them. The traveler further down the road can also look back with a confident, even if weary, smile and tell you the scenery from the top of the mountain is worth the climb.

Obviously, I’m saying you would benefit from drawing from someone else’s experience in whatever issue you may be dealing with, whether it’s a new diagnosis of diabetes, autism, muscular dystrophy, Parkinson’s syndrome, or a cancer of some kind. It definitely helps to connect with others in order to not feel you’re going it alone. Facing your struggle is a bit easier when you lock arms with another, especially an experienced voyager, and forge onward together.

So who should your cheerleaders include? Well, family if possible and if advisable (not all family members can help handle your load, especially at first; it just depends on how they respond to difficult situations). Close friends can be some of your greatest supports. If you have a church family, they can help prop you up – I know we’d be completely lost without ours. Then if you still don’t readily know someone who has been where you’re about to go, ask around to people you trust. Ask the doctor who delivered the diagnosis. Check your community resources for supports that fit your situation. Maybe your pastor/minister/priest can point you in the right direction.

It will take some work at first, and it may feel more overwhelming than you think you can bear some days. I get that – I truly do. But approach it a little at a time; it’s less difficult that way. Read the papers any doctor may have given you. Do some research on the topic (be very careful what you read on the Internet, of course, because obviously not everything you read is true). Look for an agency, foundation, association, group, etc. related to your need. Just do one task a day so you don’t feel like you’re drowning. As the saying goes, Rome wasn’t built in a day. But whatever direction you choose for your journey, take someone with you. You might even let someone with experience guide you. After all, we were never meant to walk alone.

***this was originally published as an article on the Good Men Project website

You Need a Guide

Imagine this with me if you will: you’re traveling into an area you’ve never been before. The street signs are encrypted in abbreviations and symbols you’re unfamiliar with. You don’t have a GPS or a map. You have no idea where you are or where to go. What are you going to do? Well, okay, after you pull off the road and have a breakdown and cry, then what are you going to do? You’re probably going to ask one of the locals for directions or help.

If I happen to be one of those locals, I’d be honored if you asked me for help. That’s what I want to try to do in a series of articles entitled Every Family Has a Story. I want to share a little help, a little hope. Whether you’re part of a nuclear family, a single parent, a grandparent, an aunt or uncle, a teacher, a therapist or have no children in your life at all, you can benefit from the principles I’ll present in this series because they can apply to a variety of situations.

Our little family of five has seen a lot of ups and downs. We are tight-knit and interdependent. We also have a lot of other people we depend on. Probably sounds a lot like your family, right? Good! Because when we can connect with one another, we can help each other.

There is something about our family, however, that might be a little different than yours. Two of our three children have disabilities. Our oldest daughter is visually impaired and our youngest (our only son) has the same visual impairment as his oldest sister, as well as autism. We’ve traveled the road of specialists, tests, disappointments and triumphs for over 18 years now. On this journey we’ve been taught quite a bit – some of it fact, some observations, some opinion and some wisdom. We’ve learned the alphabet soup of medical acronyms, among other things. We’ve learned who our friends really are. We’ve learned so very much. I believe we are not on this path to just take it all in, however, but to share our experience with others who may benefit from hearing about it. In fact, I feel it’s my responsibility to share.

What do you typically do when you’re looking for a new phone service company, satellite or cable provider, an electrician, a mechanic, a dentist? You ask around for advice, for some help making decisions from others who have been in your shoes before, right? You seek out information you want to know. You look for a guide.

That’s also what you might be inclined to do if your child has just been given a diagnosis. You may feel you need a Guide.

This whole series won’t be faith-based, I promise, but this first one is. Since I’ve been a Christian for nearly 30 years and I’m married to a youth pastor, that’s the lens through which I see the world. But I’m aware that the entire world does not, so I will certainly keep that in mind. This particular portion, though, does shine a spotlight on faith.

Sometimes, especially in challenging times, we need some extra guidance, some direction. If your family includes someone with special needs or challenges of some kind, this guidance can be significant. You may need some peace. Assurance that whatever the outcome of your situation, you’re going to make it through. And be better for it. This is when people of faith call on God for all of those things – direction, resources, experts, and that “peace that passes all understanding.” You might pray on your own. You might ask others to intercede with or for you. Either way He hears. You might not get the answer you want right away – after all, His answers are, “yes,” “no,” and “wait.” But having a sense of relief after putting the matter into God’s all-knowing and loving hands can make a world of difference with how you deal with life’s issues.

Even if that has never before been your practice, I’ll bet you have a relative, friend, co-worker or neighbor who you might consider “religious.” If you do, I would also be willing to bet that the person you’re thinking of would be more than happy to lift your matter up in prayer. Most of us, when asked to pray for someone else’s burden, are humbled and honored to do so, because you’ve entrusted us with your fear and weakness. You’ve been vulnerable enough to be human with us, so we must whole-heartedly approach the Divine with/for you.

Once you feel you’ve made contact with your Guide, and have a more firm footing, you’ll be more ready to forge onward with confidence.

Please continue this journey with me, because we were never meant to walk alone.

*disclaimer: this first appeared as an article on the Good Men Project website in my series of 14 articles total.

What now?

We had just been informed that our precious little one had a rare eye disorder. How did that even happen? Was it something I did (or didn’t do) when I was pregnant? How do these things happen?

Our ophthalmologist said it was a genetic fluke, since no one in the family, on either side of our families, had ever been diagnosed with coloboma.

So now what? Worry and cry? Well, yes a little. Okay, a lot. But we realized that wasn’t very productive and just made us feel worse. We knew as her parents, it was our responsibility to be proactive. So we did two things.

First we shared what was going on. With family, with friends, with our home church. We knew that our young family would need strength to draw from. We sought that from those who loved us and would intercede to God for us and with us as well. We shared our news, we shared in tears and hugs.

Next we got busy. We were helped by friends who knew of resources to check into for assistance for our little girl. In 1997 there wasn’t as much available then as there is now, and with some of the resources, it depended upon where one resided in order to qualify for assistance. But what agencies we could garner assistance with visual tools, we did.

We vowed to do everything possible for our little girl to give her the best chance possible.

Yet Another Autumn Change

My last post spoke of the baby we learned in the fall of 1996 that we would be welcoming into our tiny family. She was joyfully greeted in August of 1997!

We enjoyed getting to know each other and learning on the fly how to be parents (we’d never done anything like this before!). I’m a “learn on my own” kind of person so I read a lot. I was reading the baby books, and happy that our daughter was meeting her milestones on time. Except one. She should have around 6 weeks of age, or so, be tracking objects with her eyes when the objects were moved in a linear path within her eyesight. She didn’t do this consistently. So I brought this up to her pediatrician at her 2 month well-baby visit.

At this visit, her doctor also couldn’t get her to track objects. So he proceeded to investigate a little with an exam of her eyes. He was unsure of what he was encountering, and wanted us to take our daughter to a specialist. This well-baby visit was on a Friday; our appointment with the pediatric ophthalmologist wasn’t until Monday. Which is logical and reasonable. But that was two whole days to worry and wonder what was going on!

When Monday finally came, my husband and I took our daughter to the appointment with the specialist. There are details I may expound on another day, but what I’ll share now changed our lives forever. After a gut-wrenching, thorough eye exam on a two month old (it wasn’t pretty, I’m here to tell ya), the ophthalmologist informed us that our daughter had an eye condition called coloboma. He explained that when they eyes are being formed in utero, at about 6 weeks gestation, hers didn’t fully form. The retina didn’t grow the way it should have, and she had big holes in her retina. He further explained that where there’s no retina, there’s no vision. He gave us a pretty bleak prognosis. The doctor didn’t give us much room to get our hopes up for her to have much vision, if any at all.

That felt like a swift kick to the midriff. Gasping for air.

Way more questions than answers. We’d have to wait and see how it would all play out for her.

And so, we had a lot to learn about how to care for a vision impaired child. We had just barely figured out how to care for an infant, period. Now we had one with special needs.

But God wasn’t done yet. No. In fact, He had just begun.

As promised

In my previous post, I hinted toward the fall being a time of change in our family. The first time this was true for our family was when our family consisted of just two – my husband and me. We married in August of 1995 (had to be THE hottest day of the year and the air-conditioner units at the church in which we wed had waved the white flags and gave up – not fun). We began our young lives together in a St. Louis metro area Illinois city, where he was a part-time youth minister and I worked as a pharmacy tech. Our experience there was ….. well……. we only spent one year there; I’ll not dwell on it. From there we moved east to the opposite side of the state, and landed there for five years. We settled in the little-town-farm-community rather easily, and with the same occupations (youth minister and pharmacy tech) in different places of employment. We were right at home. Apparently enough so at home that in the fall of 1996 we learned that we were expecting our first baby!

Talk about changes! Changes to our home – painting and baby-proofing. Changes to our relationship – we would never again just be husband and wife. Changes to our vehicles – that two door car was NOT going to work out with an infant seat in the not-easily-accessible back seat, so that car got traded for a four door. Changes to my body – what was this crazy super-human anatomical experiment my body was conducting?!?

Yes, this was the first significant autumnal turn of events for our family. This, of course, was a beautiful one and made us glow like an autumn maple tree when it’s illuminated by the sunlight.

Autumn = change

A great number of people like autumn. For fantastic reasons like: leaves that morph into a brilliant array of colors, the cool mornings and warm afternoons, the natural beauty expressed in decorations like pumpkins, corn stalks, Indian corn and grapevines, even the air takes on a different fragrance. Probably most parents look forward to the kids returning to school in autumn. These are good changes. Natural ones.

Autumn has also oftentimes marked of some significant events in our family’s life. Stay tuned to find out more.

Greetings!

Please be patient with my rookie attempt at this whole website/blogging thing.  I’m very excited (and maybe a little nervous) about this whole experience.  Even though when I dreamed about sharing my words in printed form, blogging, websites and, yes, even the internet didn’t exist, but I knew somewhere deep inside I was destined to write.  Even if it was only notes to the people most significant to me, it would be heartfelt and genuine.  But perhaps it will become more over time; that remains to be seen. No matter what, though, I can guarantee that whether or not you and I see eye-to-eye, my words will be heartfelt and genuine.

 

So as this grows, please grab a cup of coffee, find a comfy seat, and let’s chat about life.