An antiseptic smell I couldn’t quite place permeated the air. Perhaps it was a combination of Pine Sol and Clorox. Industrial carpet woven in blues and reds needed a vacuum. A lone ant traveled by my foot. I took the damp tissue in my hand and squashed it. A few fluorescents created shadows which revealed the starkness of the room. The barren environment mimicked the fact that I was the only occupant waiting.

It was the middle of the night, and I lay curled on my side wondering if my husband was going to live through surgery.

I also–possibly selfishly, yet realistically–wondered if my body would allow me to make it through the ordeal. Having postural intolerance, chronic fatigue syndrome, and fibromyalgia severely limit how much time I can be out of bed each day. Normal, everyday activities for most people, like driving to a hospital and sitting for any length of time, are a challenge for me. Doing it for hours is virtually impossible.

My life had taken on a surreal quality since the midnight phone call. A stranger had informed me that Mike was being life flighted back home from Boy Scout Camp. Was I really lying on a hospital floor hoping my body would hold out until I could get information on Mike? Maybe I should call my sister to come sit with me, but we were arguing. What about, I couldn’t remember.

All I knew was I was alone—too alone. For moments I’d seem okay, like I was holding it together; then, the realness of the situation would come over me like the feeling you get when you jump into a pool on your first day of summer vacation. You know the water will be cold, but it’s still a shock. You can’t believe you’ve gone from dripping sweat to shivering violently in the space of seconds. I tried to make sense of the frigid water, but I couldn’t. I wanted back on dry land.

My bible lay open to Psalm 23, yet all I could do was scan the words as my mind flitted about. A bottle of Gatorade with salt packets I’d asked the E.R. nurse for sat beside it. I must have left my baggie of salt at home. My cell phone, a wad of tissues and purse surrounded me. The shawl I wore for writing was draped over my chest. It reminded me of home which helped to alleviate the uneasiness of my surroundings. How much longer would I have to wait? I was trying to keep from panicking; trying to keep it together. It was a battle I was beginning to lose.

I started flipping pages in my Bible. Okay, Lord, I need some help here. I’m scared. My eyes settled on Psalm 63:8 “My soul clings to You; Your right hand upholds me.”

I am clinging to you, God. Since I am doing that, I am going to trust Your Word that says You will uphold me. You know how I struggle with trusting You. I am weak, but You are strong. I need You, Lord. I can’t do this alone. I know that all power in heaven and earth is Yours. I’m asking You to allow Mike to stay with me. I need him. The kids need him. I’m begging You. I also know that Mike is Yours, not mine. So, for me to have peace, I surrender the love of my life into Your hands. If You take him home, I will be angry and grief stricken. But, if that is Your plan, help me to accept it. I can’t do any of this alone. I’m afraid, Jesus. Amen.

As I opened my eyes, I noticed that nothing around me had changed. The waiting room was still bathed in glowing light. Disinfectant hung heavy in the air. There was not another person in sight. And, yet, I felt different.

A tinge of peace subdued my fearful thoughts. The burden I’d been carrying on my own had eased. I felt a little freer, a little lighter. Talking with God had transferred the enormity of the situation from my limited, human hands to His powerful ones.

Honestly, I was still scared, still anxious. But, I didn’t feel alone anymore. I didn’t feel so overwhelmed. I knew God was in this with me, and that He would help me face whatever was to come. So, I did the next thing I could. I took a deep breath, gathered my soggy tissues, and went to find someone who could give me an update about Mike.

By the way, my story has a happy ending. I was able to stay at the hospital until Mike was admitted to a private room following surgery. Since that time, he has made a full recovery.

Dana Kennedy is a survivor, encourager, wife and mother. She writes a devotional column for Glory and Strength e-magazine. It has taken Dana the better part of 17 years to begin to understand the gifts God has hidden for her in chronic illness, especially Himself. Dana welcomes your contact at dtearosee@earthlink.net

Has your “healthy” spouse had a medical issue, such as a stroke, cancer, an accident, that left you reeling, wondering how things would “work out”? How did you handle the uncertainty?

with Lisa Copen

I am so excited today to share with you about two books that are written by a mom who has both the professional credentials as well as the education of experience, Jolene Philo. Jolene joined us here at Rest Ministries in 2009 for National Invisible Chronic Illness Awareness Week to discuss the topic that many parents, including those with chronic illness, face on a daily basis– “When Your Child is Chronically Ill”. (This podcast is still available and an encouragement to many, so stop by and listen.)

Jolene, thank you again for joining us here at Rest Ministries! Most people are not familiar with your story. Can you tell us a little about your own family?

[Jolene:] When our beautiful newborn boy was transferred to a regional hospital, my husband and I felt lost at sea. A few hours later, we learned that our baby required immediate surgery at a university hospital 750 miles away. Without it, he would die.

That news threw us overboard. We longed for someone who could come alongside and pull us out of the water. A book to chart a map through unfamiliar waters and assure us of God’s presence.

I cannot imagine what you must have gone through. Where did you turn for encouragement?

Well, our son was born in 1982, when pediatric medicine was a relatively new field. Families like ours were hard to find. Parenting books hadn’t been written. The internet didn’t exist. Over the next twenty years, even after the surgeries and medical procedures that corrected our son’s condition were over, my search for parenting resources yielded scant results.

Eventually, I sensed God nudging me to come alongside young parents lost at sea like we had been, to create a map they could follow.

I understand that your dad had multiple sclerosis and that he was in a wheelchair by the time you were four years old. So you certainly understand the additional stresses on a family who copes with a chronic illness

My dad was diagnosed in 1958 when he was 29. I was two, my sister was five, and my brother wasn’t on the scene yet. Within two years, Dad couldn’t walk, read, write, or control his bladder. My parents decided they would do everything possible to keep Dad at home while we were growing up. They did, but the stress on Mom especially was incredible. She was teaching full time, going to school to complete her four year degree and then her masters, raising three kids, and caring for Dad. Mom did so many things right for our family, but the one thing she did that was very wrong was not seeking help outside the family.

We were expected to pitch in and help with Dad’s care. That was fine, but outside support and services would have made a huge difference. The lesson was well-learned. Once Allen was born, I sought support–spiritual, emotional, practical–and didn’t wait for people to realize we needed them. Some stories about growing up with Dad are included in my new book, Different Dream Parenting, too.

So tell us about your books. I know they are similar and yet also have distinct differences too. First, tell me about your newest book that just came out in November, Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs

Yes. Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs is that map that I had wished I had had. It’s a map for parents of kids living with medical special needs as well as conditions like Down Syndrome, juvenile diabetes, developmental delays, and autism, and those facing a terminal diagnosis. It guides parents by providing tools and resources they need to become effective advocates for their kids.

The book features interviews, advice, and resources from more than fifty families and two dozen professionals. With their help, the book addresses the situations parents face every day. Things I wish someone had told me.

What are some of these things you wish you had known how to do that you address in your book?

• Asking questions after diagnosis
• Dealing with insurance companies
• Preparing a child for a hospital stay
• Accessing financial resources and government monies
• Accessing special education services
• Determining optimum level of care
• Mobilizing volunteers at home
• Supporting the sibs
• Preparing a child for death
• Planning a funeral
• Participating in community and church events
• Creating a special needs trust for adult children with special needs

Wow! That is quite the list. I am thinking that some of these things we, who live with chronic illness ourselves, may be familiar with for ourselves, but navigating that medical maze for our child is a whole new world, plus we may have a different kind of emotional response to it. There are a lot of spiritual emotions to it all too!

You are right. In addition to practical advice, Different Dream Parenting tackles spiritual questions families are often afraid to ask. Questions about:

• God’s sovereignty
• Parental guilt
• Setting and maintaining spiritual priorities
• Grieving for children living with special needs
• Grieving the death of a child
• Passing faith on to children with special needs

And one of the things I loved in this book is the 30-day prayer guides that are in the appendices. They are perfect for parents who are just feeling to overwhelmed and exhausted to even form their own prayers.

Our local pastor is a strong proponent of prayer. Several years ago, when our kids were in elementary and high school, he gave me a thirty day prayer guide, ways to pray Scripture for a child’s character. I have used it for years. When writing Different Dream Parenting, I realized how beneficial a similar prayer guide would be for parents. As you said, they are sometimes too exhausted to put words to the longings of their hearts. These guides are an attempt to give them the words and the scripture references so they can voice their prayers in a variety of situations. Six of the guides are related to the topics of the six sections of the book and the seventh, as was mentioned earlier, are ways to pray for a child’s character.

Your other book, A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children also fills a real need. I remember when I first received a copy of it, I was so thrilled to finally have such a resource to be able to confidently refer people to.

I think it is so important that books like this exist, not just for the informational value, but so that parents feel they are not alone. One woman on Amazon shared quite a touching review about how the book brought about “healing tears.”

Yes, she gave the book as a gift and then wrote. . .

“I read most all of yesterday morning,” she wrote, “and I cried and cried and cried. I need to re-read the material to absorb it better. You see, much of what I read actually helped to give a name to feelings I had experienced but had not consciously been able to process in all the whirlwind of this last spring and summer.”

What would you like moms and dads who have children who are dealing with medical issues to be able to get out of your books?

I remember what it’s like to be lost at sea, thrown overboard by an unexpected diagnosis, and drowning under a flood of caregiving demands.

My goal is to put Different Dream Parenting into the hands of floundering parents so they have a map and know they’re not alone.

Thank you so very much, Jolene, for putting your heart and soul into these books. I know it is a very personal matter to you which you have truly been called to. Can you tell us a little bit about what our readers can find at your web site in addition to being able to order the books directly from you?

I have a variety of articles, guest bloggers and more at www.DifferentDream.com. There are some practical articles such as What to Do When Kids Say No, to dealing with haircuts with sensitive kids as well as spiritual support

Thanks again for joining us today, Jolene.

Jolene as donated books for YOU! We have 1 copy of A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children and 2 copies of Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs! THANK YOU, to Jolene and her publisher, Discovery House Publishers. Would you like to WIN A COPY? Just comment below, telling us in a few sentences about the time you were dealing with a difficult situation with your special needs child and you thought “HELP!” We will choose a winner in two weeks and notify you by email if you have won. You have one week to reply with your postal address and if we don’t hear from you we will choose another winner.

I understand it is not an easy decision to make. There are benefits to getting out and meeting new people, even when we don’t feel all that great. But that doesn’t mean we should sit around at the party and explain to people how hard it is to have some fun. Would we want to make the effort to have a night without worries and then hear ourselves talk on and on about our aches? Be honest. Not necessarily, right? Even I get tired of hearing about my own aches and pains sometimes!

Here is an example of what a conversation could sound like.

As the holiday parties start to happen for Thanksgiving, Christmas, and New Year’s Eve, so does the dilemma of deciding if you are going to be honest with other people, or just let go and do your best to have a good time. There is no right or wrong answer and it’s different for each person and situation. But let’s look at it from the perspective that your intent is to have fun.

Do you want to go to this party?
Illness is not any fun, right? The whole idea of having a good time is to put on some shoes that do not include fleece inside of them and get out of the house for a couple of hours. If your intent is to have a good time, make a conscious decision to make choices that reflect this. You are not attending a counseling session, a support group meeting, or a place to have all your fears validated. Keep perspective and avoid having expectations of other people.

Faking it is not betraying yourself
Someone asks, “So, how are you doing? You look so nice tonight.”
How do you reply? “Pretty good, thanks so much!” or. . . “Well, I am obviously pulling it off, because I feel absolutely terrible, but I did my best to hide it.”

Too many people with chronic illness feel a huge quandary that if they do not explain all about how badly they feel they are two-faced. Just because you get to the party and look decent does not mean that you are in not pain. You may actually experience pain twenty-four hours a day, seven days a week. I personally know that choosing to have fun when you are hurting is a choice, and not an easy one! By choosing to not discuss this with everyone at the party, however, does not mean you are not lying, betraying, deceiving, or being invalidated. You are putting the pain aside as much as possible and having conversation with people.

Are you looking for a thrill or a therapist?
When we have a chronic illness it can be a natural tendency to want to talk to someone about what we are experiencing. But your friend’s holiday party it not the place to do it. Everyone there has their own challenges in life too, yet they are attending to have a light-hearted night, not hear about your aches and pains. It is not that they don’t care–they just don’t know you! And if they did know you and care, a real conversation, one-on-one, in a quieter place would be much more ideal than trying to tell your story over the loud music.

Don’t explain yourself
You may need a chair to sit down in. You may avoid food filled with gluten. You may not be able to drink alcohol. The medications before you came may be making you drowsy. You may only be able to stay an hour so you can function tomorrow. That is all okay. So, just do it! Find a chair, grab a non-alcoholic drink, excuse yourself by 10 PM. You don’t have to explain why you do what you do. If you are afraid of offending your host, explain a few days before the party that you may slip out early since you are trying to pace yourself, but don’t worry about what others think. Honestly, most of them won’t even notice.

If you open that can of worms. . .
So you did it, you mentioned your illness. Maybe it just slipped out or perhaps you were trying to explain to someone why you aren’t training for the Ironman triathlon like everyone else seems to be. Before you know it someone is telling you she sells this special water that would make all your pain go away, or that his mother’s neighbor’s daughter tried this special extract and now she has been able to stop taking all of her medication. It’s painful to listen to. It hurts. It makes you want to throw a drink at someone and run screaming from the room. But you opened up this can of worms by revealing you have an illness. Be polite and walk away as soon as possible. Go hide in the bathroom and take a few deep breaths. There is little you can do to change someone’s opinion so don’t waste your energy.

Be real friends with . . . real friends
“But all of this is so fake!” you may say. “I feel like such a fraud! I can barely walk through the room without limping, my back is killing me, I don’t even know why I came if know one here knows the real me!” That’s understandable. The “real you” likely is someone who deals with a great deal of chronic pain, doctors appointments, and side effects of medications. It is a juggling act to keep up with friends, career, family, an illness, and still have a social life. No one there knows about the rash that is under your clothes or that you can’t eat most of the food presented. That is okay. Real friends know the real you. This is an outing where you can get to know people and see if there is anyone you “click” with who you may like to become better friends with in the future.

What now?
Illness is a very intimate thing. To those of us who live with it, it can be the underlying foundation of our choices, attitude, and moment-by-moment moods. As much as we try to not have it define us, the disease fights to control us. For those who do not live with illness, however, it is a very personal topic. It is a problem to be solved–and maybe solved within a few minutes if they give you the right advice. They do not see illness as a lifestyle or as a filter for your priorities, but rather as a weakness, a surrendering you are making to something that has power over you.

Parties are meant to be casual, fun, and light-hearted. They are meant to be places you discuss the weather, sports, current events, and the Kardashians–even if it’s about how you refuse to talk about the Kardashians any longer. They are not a place where chronic illnesses can be discussed in a way that will make you feel better. People do not come to parties to be informed about health issues. If you bring it up, you likely will only be frustrated, not validated, nor shown the understanding or compassion you crave.

So, do you want to just skip the party? You may! These kind of get togethers can be seen as superficial gatherings where no one talks about anything important. If you feel that way, you may find more comfort in just staying home and inviting a friend over to watch a DVD. But if you decide to go, remember to do your best to put aside your personal needs and just choose to mingle and get to know other people. Who knows what they may be going through that they aren’t sharing! And if you can smile and have a conversation with people, you may find out who you have something in common with and form that real friendship in time.

Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.

In this scenario Mr. Robertson has shown the world that one’s personal comfort, especially in the case of having a spouse with a chronic illness, is more important than the marriage vows of “for better or for worse, until death do us part.”

The religious broadcaster Pat Robertson and chairman of the Christian Broadcasting Network (CBN) told his “700 Club” viewers that divorcing a spouse with Alzheimer’s is justifiable because the disease is “a kind of death.”

During the segment of the show where he answers questions from viewers, Robertson was asked what advice a man should give to a friend who began seeing another woman after his wife started suffering from the Alzheimer’s Disease.

He responds, “I know it sounds cruel, but if he’s going to do something, he should divorce her and start all over again, but make sure she has custodial care and somebody looking after her,” Robertson said.

When Terry Meeuwsen, Robertson’s co-host, asked him about couples’ marriage vows to take care of each other “for better or for worse” and “in sickness and in health” I thought he may be able to redeem himself, if he wasn’t sure what hole he had just dug for himself. . .but he didn’t.

“If you respect that vow, you say `til death do us part,’ This is a kind of death.”

It was perhaps this clarification that made me most annoyed me. Besides the statement on divorce, I was also frustrated to hear Robertson emphasize that, in the case of Alzheimer’s the person is “gone.”

He says, “I hate Alzheimer’s. It is one of the most awful things because here is a loved one—this is the woman or man that you have loved for 20, 30, 40 years. And suddenly that person is gone. They’re gone. They are gone.” (emphasis added). Robertson said that the viewer’s friend could obey the vow of “death till you part” because the disease was a “kind of death.”

Joel Hunter, senior pastor of the 15,000 member Northland Church in Orlando, FL is quoted as saying, “Obviously, you could do this for anything. … ‘My husband watches and plays video games, and so he has left the marriage and it’s kind of like a death,’” he said. “It’s not death, and so we can’t start describing things as death that are really not death, and we have to stop trying to mischaracterize what Scripture says for our own convenience.”

Though loved ones of a person who lives with Alzheimer’s Disease may feel the person they once knew has faded away, if that person is still alive on this earth–God still has a purpose and a plan of his or her life–regardless of how “meaningless” their life may seem to others.

My grandfather had Alzheimer’s and lived in assisted living at the end of his years. Even though in his 90s when he died, his memorial service was packed full of people who wanted to celebrate his life–many who didn’t even know him before the Alzheimer’s set in. He impacted many, many lives, even when he had little memory.

We never know what nurse may be living a life of abuse at home, what physical therapist has asked God for a sign of His faithfulness today, what doctor has just lost his wife to cancer. . . and that a patient with Alzheimer’s may be the one who encourages him or her that day.

Joni Eareckson Tada also made a public statement on her website Joni and Friends:

“I was dismayed when this week Pat Robertson said to a nationwide audience that Alzheimer’s disease is a kind of death that makes divorce justifiable. When a Christian leader views marriage on a sliding scale, what does this say to the millions of couples who must deal daily with catastrophic injuries and illnesses?”

Marriage is designed to be a picture of God’s sacrificial love for us. Alzheimer’s disease is never an ‘accident’ in a marriage; it falls under the purview of God’s sovereignty. In the case of someone with Alzheimer’s, this means God’s unconditional and sacrificial love has an opportunity to be even more gloriously displayed in a life together!”

To put a “value” on any life based on what one can remember or what one can do, is to make us all replaceable to our loved ones. What if my coping skills crack under the stress of chronic pain? What if my husband didn’t want to deal with me when I had the flesh eating bacteria? What if we all gave up on our spouse every time life got tough and we said, “S/he just isn’t the same person anymore. . . “?

Is every marriage like Noah and Allie in The Notebook? No, we don’t live in Hollywood. But could we learn something about their faithfulness to one another despite life’s difficulties, including Alzheimer’s? Yes.

May God open the eyes of Mr. Robertson, and may we cover the many in prayer who heard is message and now believe their acts of leaving a spouse who is suffering is justifiable because “they just aren’t the same person I married.”

It is a sad thing to see our Christian leaders conforming to the world’s views so that people can live a life of comfort, while sometimes the world, such as in the movie The Notebook gets it right, showing true compassion.

Video of the 700 Club broadcast

Video of touching scenes from The Notebook

Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.

I give him a hug. It’s been nearly 3 years since I’ve seen this man, my cousin, who is like a brother to me. He used to give me rides on his motorcycle, back when we were young and carefree. Nothing in the world could hurt us.

We were in our twenties. Long conversations. Time. Before spouses, kids, illness.

We were poor. Philosophical conversations were cheap. . . yet rich.

Now I stop by his family’s new clothing store while I am in Oregon.

I’ve not even arrived, and I am disappointed.

I have few expectations.

His life is busy now. He’s distracted. He is rushed. Always stressed.

No time for talk.

Oh, how I’d like to just go for a walk. Ask, “How are you really?” and have you answer honestly.

Regardless of your circumstances, you now just say, “I’m fine.” You aren’t fine. I know you too well for that. But confiding in me would reveal too much.

It’s no one’s fault. It just is. It won’t always be this way.

. . . Right?

It’s a season. I just don’t like seasons that have eggshells to step around. We never had an eggshell relationship.

Once I was diagnosed with rheumatoid arthritis at the age of 24, he seemed to not really know how to talk to me. He looked at my blog once. He said, “Nothing I say is going to be right, so I can’t win. Why bother trying?”

It’s true. I don’t always know what I want to hear.

More often than listening though–I just want to speak.

When you have the rare someone who loves you unconditionally, well, you want to be able to share without conditions.

He doesn’t know how to respond to my illness, so it’s usually ignored. That should make me feel good–he treats me “normal.” But he’s one of the few people I can be the real me with–the un-normal one.

Small talk while children run through clothing racks.

My son resembles his son. His son resembles him at 13 years old. His son is the age he was when he became one of my best friends.

Were we ever that young?

He offers me a tortilla chip. A chair behind the desk.

“No thanks.” I don’t want to be wimpy. I don’t want to sit and miss out on the little bit of conversation there is.

The visit is over. It’s time to go. He gives me a hug.

Pictures snapped record our time together. But it wasn’t time. . . just a missed opportunity.

And this is weird, but there is an odd sense of frustration that my scars didn’t even get a chance to show themselves.

Why? Because they have changed me.

I want to show my hand scar and say, “Here are my new silicone fingers.” I want to point to my ankle scars and say, “Here are the scars from the flesh eating bacteria. So much has changed since I saw you last.”

I want him to know I am lucky (or blessed?) to still be here. He could have been standing at my funeral.

Am I selfish to need to be needed. . . just a little bit?

If he doesn’t see my physical scars, how can he understand how those scars impacted my soul?

He’s the kind of man I could call at 2 AM and he’d make sure I was okay. He’s said, “Call any time. . .” and I know he would answer the phone.

But I don’t have 2 AM crises-call-him-right-now kind of moments. I just want to reconnect.

I miss him. My brother. My friend.

“There is a time for everything, and a season for every activity under heaven: A right time to embrace and another to part.” (Ecclesiastes 3:1,5b, NIV, The Message)

I look forward to the season when we can talk again.

Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.