National Invisible Chronic Illness Awareness Week

Parenting When You Have a Chronic illness

Zona King

Twenty seven years ago while pregnant with her fourth child "Zona" (Linda) was exposed to a pesticide by aerial spraying of nearby orchard. That event turned her life up on end. Her baby boy was born with birth defects and lived only six days. Her own health deteriorated until she was no longer able to function normally. She was eventually diagnosed with Multiple Chemical Sensitivity (MCS), Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) and pre-existing RA. Becoming homebound she could no longer pursue her career as a TV director nor do many things with her children. These illnesses changed the lifestyle of her entire family. Several years later when her middle son was a teenager he also came down with CFS and FM. A few months later at 40 years old she was surprised, and blessed, with another daughter. A few years later she found herself dealing with illness and small child alone, divorced.

Thinking her life wasn't complicated enough she married a man who also has CFS, FM and MCS. Never without humor she says "Life is interesting in the s-l-o-w lane!" Her children are now 37, 34, 30 & 16. She is the grandmother of seven granddaughters and soon to have her first grandson.

Zona is the founder of several Christian e-lists on a variety of topics relating to chronic illness including CMCS-ei, 2 of Us Ill, CMCS with kidz, CCFS and Homebounder's XChange about working from home. She runs a computer business, is a graphic and fine artist and a writer with a blog, several books and scripts "in the works". Her website, Zona's Zone has a section for those who know someone with a chronic illness with suggestions of what they and churches can do to help. It also links to Zona's Shop, downloadable greeting cards, t-shirts etc. and a link to the Art Gallery. Zona has two blogs, Zona's Blog which is about living with chronic invisible illnesses and Sunnydale Funnyfarm written by her alter ego, Dr Wolfgang Wisenheimer.

Zona believes that nothing can make you smile faster than the sound of a toddler giggling and that the key to survival is a deep and abiding faith in the Lord and a good sense of humor, "A bit of nutzoid doesn't hurt!".

Visit her websites
Zona's Zone | Zona's Blog

Parenting When You Have a Chronic illness

Host_Laura_LRae: Welcome to the National Invisible Chronic Illness Awareness Week seminar. My name is Laura (a.k.a. "LRae" to many of you), and I'll be your host for this hour. We will open in prayer; then our guest will present the topic, after which there will be a question and answer period, then I will close in prayer.

Becoming homebound she could no longer pursue her career as a TV director nor do many things with her children. These illnesses changed the lifestyle of her entire family. Several years later when her middle son was a teenager he also came down with CFS and FM. A few months later at 40 years old she was surprised, and blessed, with another daughter. A few years later she found herself dealing with illness and small child alone, divorced.

Thinking her life wasn't complicated enough she married a man who also has CFS, FM and MCS. Never without humor, she says, "Life is interesting in the s-l-o-w lane!" Her children are now 37, 34, 30 & 16. She is the grandmother of seven granddaughters and soon to have her first grandson.

Let's pray....

Lord, thank You for bringing us here tonight. Thank You for the grace You've poured out into Zona's life and for what You've placed on her heart to share with us tonight. Please speak through her and give us hearts and minds open to everything You want to say to us. Please abundantly minister to those here who are hurting and are in need of a special word from You. Come, Lord Jesus. We are here to listen to what you have to say to us through Your servant, Zona. In Jesus' name, Amen!

Zona, take it away...

zona: Thank you, Laura. Good evening! When I was asked to speak at this conference on this topic my first thought was "who me? What do I know about raising kids?" I confess, inwardly I was so hoping for a juicier topic. Something like: "How to live with a sick husband and maintain your sanity!" or "101 polite ways to tell your doctor that you are not crazy!" I found myself groaning to a friend and saying all I knew about raising kids while sick was blah blah blah. Later I wished I had listen to myself closer and remembered what those blah blah blahs were because afterwards they sounded quite good! LOL

Then I tried for days to put on my Dr. Wolfgang Wisenheimer hat and think of some terrifically humorous ways to share some of my profound wisdom with you. And all I got for the effort was a headache and many still blank sheets of paper. Oh I was praying I tell you! Starting to sweat actually---- And it wasn't from menopause.

Somehow all I kept getting was one simple message. And it was serious. It seems the Lord wasn't going to let me get away from sharing this message. I had planned to have an interactive session. But after reviewing my notes realized that it would be better to save questions until afterwards, though comments during are welcome!

I read a book many years ago called something like "God's Upside-Down Kingdom". When you enter the chronic invisible illness zone you will indeed find yourself in that kingdom. For other healthy people, "norms", entering that kingdom may be a choice. Those of us who are ill often find ourselves thrust through the front gates. So many things that you have assumed to be "the right way" will now seem impossible to do and if you are blessed, you might begin to question why we thought it was the right way to begin with.

The Mainstream measures by distance driven, amount spent, and how much time spent 'doing things', usually away from home. In this kingdom, we come to value home spaces, time spent and doing something at home. If you haven't already you will at some point begin that long journey of re-judging the merit of just about everything.

There is so much I can't tell you. I don't have a clue. It seems each person has a path that has been custom fit. But there is one thing I can tell you. You have not been set aside! You have been set apart for a purpose. Let me repeat that again - There is one thing I can tell you. You have not been set aside! You have been set apart for a purpose. And if you have kids, somehow that purpose involves them too.

So now I will invite you to suspend all those notions of parenting you have heard daily, from television commercials and sitcoms, books and conversations, PTA and the friendly mother next door and most certainly from Dr. Spock, Dr. Phil and Dr. Doolittle. Consider for this next hour, if you will, that maybe, just possibly, there is another way -YOUR WAY - and this other way is ok.

Let me share a bit about me. I'm sure you're wondering just "Who is this wacky woman who's about to tell us that just about everything we've come to believe is all wet!? Has her illnesses caused her to go plumb loco?" My reply to that is, "Yes!" I guess I may be a bit nuts by most people's standards. LOL. I want to make it plain right now that I am no expert, but I'm a bit past novice, perhaps. I currently have no framed paper on my wall and I don't even have a pedigree. I'm just me

What I do have is 27 years living with these illness (I have CFS, FM and MCS) and four kids, three of them full grown, who have given me seven, soon to be eight, grandkids and a lot of scrapes and dents on my head and heart from banging into walls trying to figure out where the paths were. Hopefully by sharing with you a bit of the conglomeration in my head now (gleaned from wise friends, listening to the regrets of old ladies, hours of pondering, Bible studies, re-reading and re-reading scripture, and many hours of whining on the Lord's shoulder), you will be able to locate your own road a bit easier and learn it is the right one for you.

What do children really need? Feeding, watering, changing, shelter from weather, and a whole lot of love. These are the things that typically come to mind. These are also the things that we most worry we can't give adequately when we are ill. Truth is that we are not the only one who can feed, water, and change them. Even a toddler can finger feed himself if there is food in the house. They will survive. Same with watering. As for changing, well, diapered kids do need changing and one way or another we find a way to manage that task even when there isn't help from others around.

Older kids' changing amounts to doing laundry, but even young kids can learn to turn on the washing machine and the bonus is that they are learning something and growing towards that self supervised human being they will need to be one day sooner than you think.

Some mommies who are ill may need to have the little tykes set out in front of them with a pile of toys and containers of food handy. We all have our own level of function. It's not easy but it is do-able.

When thinking about raising kids I look at it this way. I have approximately 18 years to grow this child from being totally dependent on me to being able to stand on her own two feet. This is a step by step process watching them take charge over their own lives as they are able to. You shouldn't wait until they are eighteen and then drop them from the nest and hope they can fly.

The biggest and hardest part is reconditioning our own thinking. That thinking usually goes something like - "somehow I am a rotten mother if I'm not behaving like Donna Reed "(if you don't know who she was substitute the current TV supermom or any other supermom you may know.)

You could read to your kids, or have them read to you. They can sing, play, dance--- there's a lot that can be done even if they're too young to be a very far away from you. I'm not going to say any more about things you can do. There are many groups and books and other mommies out there who have tons of novel tips and tricks for entertaining little ones when you're ill.

A bit earlier I said, "if you are blessed--- you may begin questioning why you believed all the things you have about raising children, what is important". I also told you that you've been SET APART. And you probably thought I must not be very ill or I must be one of those forever-blowing-bubbles optimists. Ha! Everything I know about raising children, whether flat in bed constantly ill or healthy as a horse, can be stated in just about one sentence. Here is that sentence: Raise up a child in the way he should go: and when he is old, he will not depart from it. (Proverbs 22:6)

What does that mean?

And, ye fathers, provoke not your children to wrath: but bring them up in the nurture and admonition of the Lord. (Eph 6:4)

Or to put it another way…

Proverbs 31:1, "The words that his mother taught him…" (note it doesn't say by the laundry you did for them, the games you drove them to, the walks you went on with him...)

Deut. 6:7 "And thou shalt teach Them diligently unto thy children, and shalt talk of Them when thou sittest in thine house, and when thou walkest by the way, and when thou liest down, and when thou risest up."

We may not be able to do much walking but we do sit, and we do lie down and get up again at some point. This is something we can do. And this is something we must do. AND, this is the most important thing for us to do for our children - teach our children about the Lord.

I have a dear friend, Sandy. We've talked often about raising children, including about raising children when you're sick. When asked what she thinks is the key thing to raising children she will tell you exactly what I just did. "If you bring them up in the training and instruction of the Lord, you can't go wrong. He will take care of the rest." She also believes in being strict when they are young, but giving them the space to find and test their own feet to stand on when they are teens.

Note they are bound to make some mistakes, but they will learn from these mistakes too while they still have the safety of home underneath them. She was rather strict about what TV shows, music lyrics, movies etc the kids were exposed to when they were young. Nothing she felt was ungodly was in her home. When her children were teens they were probably allowed to do many things their peers weren't. They didn't need curfews and they made most of their own decisions. She prayed.

From my observation the world often has this exactly backwards! Again our upside down kingdom! Children are spoiled rotten when they're young, pampered and sometimes overly coddled and allowed to get away with all sorts of things that would make our great-grandparents shudder. Then when they hit the teen years we try reeling them in thinking we need to lead them in making every decision. Some parents are totally controlling.

Those of us who are sick have been set outside the mainstream. Some of us are homebound so we are really outside the fast lane. I have come to believe that God has allowed this for a purpose. We have been SET APART for some purpose. Please notice I said set apart NOT set aside! This position that we are in is like sitting up on top of a hill looking out over the busy city, watching the cars speeding down the interstate bumper to bumper. From this vantage point we begin to see things a bit differently than others who are caught in that traffic snarl.

At first when we find we can't chase around to little league games and dance lessons we feel that somehow we must be depriving our little kiddies of something major. But after a while, we come to observe that they have indeed survived without all that hustle and bustling. If it isn't some symptom that prevents us from taking them it's the lack of finances, now that we've found ourselves in a one-income household (or less). We watch out over the city and see moms constantly dashing about, harried, exhausted, and always feeling they somehow aren't doing enough. And they tell us so too! And we sit here and think that if they think they aren't doing enough what must they think we are doing?

Others may judge us for not following the game plan. But are all those things really necessary?

Raise up a child in the way he should go….

There is one thing that we have that many mom's out in the world can't give their kids--- time and presence. We are always around. We are there when they are tiny. We are there when they come home from school. We are there when they want to share a problem or share a thrilling report. We're there when they get up and we are still there when they go to bed. Believe it or not, this is just as important when they are teens than when they are small. Maybe more so.

When my older kids were young and I found our lifestyle to be so different from other families I wondered how it would affect them in the long run. Would they resent having a mom who couldn't go see their concert? Or meet with their teachers? Would they be damaged eternally, like we hear "TV psychologists" comment today because they were taunted by peers, usually for something like being the only one who didn't have a video game at home? Sometimes they sure sounded deprived! (whine whine moan groan grumble mumble)

Imagine the joy in my heart when they started having families of their own and I found that their real desire was to have the moms staying at home with their children. Apparently being one of the few kids whose mom was always there for them meant something. They saw it as something of merit.

I can't tell you how to deal with your peers when you find they are falsely judging you. I can tell you that most likely you will know at least one of these people. There has been more than one parent or adult leader who has informed my daughter that she is neglected or deprived by me. What I can tell you is to think about what it is you are giving your children. You. So how can they be neglected?

Raise up a child in the way HE/SHE should go…. Who is this child? What is he like? What are her talents? What are his interests? You have a special purpose. It is to help your child discover what his purpose is. You talk to him. You are available to her. You encourage them and watch over them. You let them know that they too have a purpose.

How much better can you do this than by first teaching them about the Lord and just being there with them observing? You may not be able to go to parent teacher meetings. You might not be able to skip rope with them or take them to the zoo. You might not be able to do many things, but they will have your time, your presence and lots and lots of conversations and your ears. And that, dear mom (and dads), is THE best gift you can give them.

Each of you mothers have been called and set apart for a purpose. And having an invisible chronic illness, as bizarre as it may seem may in fact be the thing that makes you a better mother. One who changes society, makes your community a better place because of the time you spend with your children. And whether you are aware of it or not these children who will be observing how you endure your troubles and see what you draw your strength from will go out there into the world and influence others.

It is indeed one of the greatest ministries one could be given. I pray that by the time they are grown they will have learned about this upside down kingdom of ours. I pray that all those things that you have discovered while sitting up there apart on your hill, sorting out the priorities from the frivolous, learning to appreciate those things that really matter… all those things that perhaps you had not thought about while trucking down that interstate highway at 70 miles an hour in the old days… I pray you have conveyed that knowledge to them too.

Then my world and my children and grandchildren's world will be a whole lot better because of you. And so will be your children's'!

"And now, just as you trusted Christ to save you, trust Him, too, for each day's problems; live in vital union with Him. Let your roots grow down into Him and draw up nourishment from Him." (Col. 2:6-7 TLB)

You will make it! And they will rise up and call you blessed (even if they're not doing that right now).

And now I'd like to invite your comments and questions. Please feel free to ask any question you wish. I may not have an answer ---but with all my kids and grandkids I've probably experienced just about every crisis and problem you could think of and I can sympathize.

Perhaps I should also let you know that my son came down with cfs/fm when he was 15 - he's 34 now. I've been through a divorce and second marriage to a man who also has CFS, FM and MCS?. Yup, I understand chaos from a house full of sick people well! LOL

Carol: When you said "You have not been set aside, you have been set apart" it really touched my heart. So often I know I feel that I am set aside, as USED to do this and that as people brag how they are STILL or just beginning to do those things, and I no longer can, and yet am young, too (well middle aged but not old), young in spirit, anyway. I think God has truly said we need now, to find NEW ways to live, do you agree?

zona: I'm so happy to hear this.

Host_Laura_LRae: We're wanting to adopt, and yet somehow I feel I have to be less than honest in order to "sell" myself to a prospective birth mother. Any ideas? Suggestions? I don't want to be untruthful, but don't want to sell myself short either, especially since I'm set apart!

zona: I'm not quite sure what you mean. Could you elaborate a bit for me? Sell yourself how?

Host_Laura_LRae: Sorry. When you present yourself to birth mothers, you're always putting your best foot forward. In some ways I feel like I'm having to share about all the wonderful sides of my husband and I down play the illness side. I mean, what birth mother would choose me, someone with a chronic illness?

zona: Sounds to me like you are a normal mom! We all do that and when we are ill I think we also tend to over worry about that, more than we would if we were healthy. I would hope that the adoption agencies would appreciate that you are normal that way.

Donna: I home schooled my two younger children; but when my daughter reached 8th grade, my FMS, etc., were so bad I had to do most of the teaching from my bed. A couple of years before that, I added to the Christian curriculum we were using, a course I created: TIPS (Training in Practical Skills) -- how to plan and prepare a simple meal, how to do their own laundry, sew on a button, etc. -- things they would need to know in order to be independent. Had it not been for my illnesses, I wouldn't have thought to do that. So you're right -- there's a lot we can do even when we're flat on our backs! We also had quality time together, and to this day, our close relationships reflect that.

zona: First let me say that I'm having a bit of problem reading the questions so forgive me if I'm slow here. I have home schooled my kids while ill, and it's . . . interesting. LOL But you use the same principle I have laid out here; put priorities first. I'm using the "unschooling method" and find that works best for us.

Shep: Yes! It strikes me when you state the we are "one who changes society, makes your community a better place because of the time you spend with your children.' My 'job' wasn't ever to 'make them like me' but rather to 'teach them who Jesus is' and they know that answer. Whether or not they choose to follow him isn't my job. That is the work of the Holy Spirit and the Word says 'and when they are old, they will not depart from it!' This is so true! Thank you for pointing it out so clearly again!

zona: Excellent point! We're not doing this alone.

BevinUSA: We not only affect our children but other children. We have a 6 yr old boy that has become extended family to my hubby and I and he is a blessing. He loves to help get my walker and walk along side of me. He is a child of the Lord and he brings such sunshine and happiness. At that age he really knows a lot. Thanks to his mom and dad for sharing him with us

zona: That sounds wonderful. I was just telling someone today that if they leave children out they are missing a real big blessing

BevinUSA: What is unschooling?

zona: You can find lots of information on the net about unschooling. Basically it is teaching the child by doing things (i.e. cooking is about math and science). Not that you exclude all books but that you look at learning in a different way. In this context we never stop learning.

I hope you all come away from this feeling encouraged about your parenting and knowing that the Lord is there with you. And realize how important you are. A parent with a purpose!

Host_Laura_LRae: OK....We're about to close in prayer. Thank you to all of you who have submitted questions and comments.

Donna: I just wanted to comment on a couple of things you really brought out: (1) that God is our partner is raising our children, and will guide us in meeting their needs; and (2) it is important to spend time with them, especially listening to them and making talking about the Lord a natural part of our discussions with them. Do you think that sometimes it's too easy to leave that up to the Sunday School teacher or Christian School teacher?

zona: No. Sunday school is great and the kids need that fellowshipping too. But they need to hear it from you.

Host_Laura_LRae: Thank you so much Zona for sharing with us. It was such an encouragement to me and I'm sure to the rest of us!

Let's close in prayer...

Lord, thank You so much for the way You've worked in Zona's life. May we take what You have shared with us through her to heart and not be only hearers, but doers and believers of that word. Please continue to keep Zona and the rest of us encouraged in Your goodness and faithfulness and belief that You have set us apart for Your purposes and those purposes are incredible.

In Jesus' name we pray, Amen!