Let's Make a Deal

I chatted with a friend tonight about the articles posted below and about daily life in the Coleman home. Before she got on the line, her husband answered and asked how we were doing. I simply laughed and told him that I frequently chose to not answer that question anymore. :) As I've said before, and I quote from Thumper's dad, "If you can't say something nice, don't say nothin' at all."

So, let's make a deal. I'll simply post here how things are sorta going, and when you want to know, you can sorta read between the lines and get a brief synopsis of our daily life...and then you will not leave befuddled when I refuse to verbalize what is happening in our life. Does that work? I don't mean to ignore your question. I know that, for the most part, you really want to know. But I often can't answer without crying. When you ask me, it means I have to look at the big picture in order to answer honestly and if I look at the big picture, I'm totally overwhelmed.. and so I cry. Perfectly normal response, right? (Ok. I know it's not, but we are making a deal here, right? So this response is your concession to me!) :)

Yes, our family is struggling. Billy is working very long hours, is exhausted, and is not available by phone the majority of the time. Andrew got his license and is now working more than full time at Kings Dominion as a lifeguard. Chris is working a few hours a week at a local day lily farm and learning how to become a photographer. Will is struggling. Camden is mostly coping (and facing a birthday where he wants a Golden Retriever puppy...anyone know of one for really cheap???). Benjamin and Caroline are the dangerous duo. Me? Well, I plead the fifth. Let's just say that single parenting, home schooling, managing Will's illness, feeling crummy thanks to the new meds and not being able to run for the last three months, and trying to work miracles in a budget to allow for another long distance doctor's appt has left me a bit...weary. The children's hearts are struggling in very real ways and that has zapped the last bit of emotional energy that I might have had. That's simple honesty. God has given me more than I can handle and I really don't know what to do with it anymore. And, in general, I don't wanna talk about it. :)

HEAV article #2

I received this email yesterday afternoon from my editor who asked me HOW to home school a chronically ill child. Hmmm....How do I answer that one? Well, she requested a second article for the magazine based on that question. I am copying and pasting it below so you can read (and comment!!!) and tell me what ya think. Remember, you CAN comment on the blog...there's this little button below each entry with the word, "comment" on it. :)

Here goes...

Homeschooling is already overwhelming, so adding in a chronic illness can make you feel like the needs are greater than your ability to meet them. The statement that “God only gives you what you can handle” is totally false. He gives us more than we can handle so that we have to lean on Him. Lean on Him and trust that you aren’t failing.

• The first thing to do is to realign your expectations. Then make realistic goals for yourself and your sick child. When necessary, repeat number one.

• Don’t compare your daily accomplishments with your best friend’s. She probably went to the doctor once last month. You’ve already seen two this week. Your day is totally different, so don’t pretend they are the same. They aren’t.

• Determine exactly how much time you can devote to formal “schooling.” Be realistic. If you can’t accomplish school this week, there’s always next week. Yes, it can become an issue when it’s always going to be “next week,” but you can’t function without rest and you will dig yourself into a physical and emotional hole that will overwhelm you if you try to live your life with unrealistic standards. Remember that homeschooling is about more than school.

• Consider creative scheduling. If you can’t manage to squeeze in four language lessons and four math lessons every day, consider teaching your younger children on Monday, Wednesday, and Friday, and your older children on Tuesday and Thursday. The school year may be longer this way, but everyone is still moving forward. If you have to miss a day, you miss it. Just go back to the plan as soon as you can.

• Write out your lesson plans in advance. I take a month during the summer and lay out the entire program for the year, especially the books that my children will read. When I am unexpectedly away from home, they just have to look at what’s next in order to continue forward.

• Find a curriculum that makes your life easier. I understand the concept of learning styles, but on a practical level you have to be able to manage. If your program is cumbersome, look for something that will allow your child to move forward but takes less of your time.

• Outsource. Find creative ways to home educate your children so the full responsibility is not on your shoulders. There are fabulous online programs that allow your children to move forward without you being present. Find a piano teacher who will come to your home. Use a co-op. Find a college student willing to teach a class to your children. One or two video courses might help for an older child.


• If you rely on library books, put them on hold two weeks before you need them and have your husband pick the books up on his way home. Our library allows my husband to check out books on my card so that, should a crisis occur, the library late fees are all on one card. (Our library has a maximum fine of $10 which, I hate to admit, we pay regularly, but we only pay it on one card!)

• Train your other children as soon as possible in household management. Someone has to keep the ship on course and you can’t always do it. If you have to miss school in order to teach your children how to mop the floor or bake bread, consider it a home-economics class. These are skills the children need on a practical level, and you need help. The family is in this together, so do not feel guilty asking your children to pitch in. The Proverbs 31 woman had lots of servants; you have children. 

• Focus on today. Tomorrow has its own issues.

• Trust your instincts. You spend inordinate amounts of time with this child. You will know which days he is able to perform schoolwork and which days he can’t. Every child and their illnesses are different. You may have to simply write off a full school year. Or, a school “year” might take you two years to complete. Again, trust your instincts.

• Get emotional support, either from a friend or from a professional. You need someone to talk to honestly without fear of rejection. Your emotions are real and need to be dealt with. Don’t ignore them.

• Find some way to manage the stress. I started running three years ago and it truly has saved my sanity. I lost weight, I gained energy, and the endorphins can’t be beat. Exercise is amazingly helpful.

• Nurture yourself. You have to put something into the emotional tank to be able to effectively parent/nurture your children, much less maintain a relationship with your husband. Remember. 70% of the marriages with a chronically ill child end in divorce. The threat is very real. Protect yourself and your family by also protecting (nurturing) you.

Writing...

So, I'm probably as verbose in writing as I am in speaking...which is not necessarily a lovely trait. But it is a known trait. :) But I love writing so much more than I love speaking, especially with the lovely Plavix drug on board. I may lose my train of thought writing, but I don't have someone standing there staring at me wondering what in the world I was saying and where was I headed with that? With writing, I can just sit still and patiently wait (or not so patiently wait) for my brain to catch up with my fingers...and my fingers can move so much more quickly than my mouth...but the devastation they wreak is so much less offensive when I can simply backspace instead of having to say, "Oh, that isn't what I meant to say!" :)

And yes, I'm babbling. It's that kind of a night...that followed that kind of a day.

Actually, the reason it all came to mind is that today, I received an email from my editor requesting another short article regarding home education and chronically ill children. I am happy to write the article, but I'm happier that I didn't tell her my initial thoughts. :) My first inclination is to laugh...home education and chronic illness are just so...incompatible. You feel like a failure no matter what you do. The needs are so great that you feel like you can't possibly meet even a fraction of them. Um...how do I teach math and not be at home? Hmmm... Does math come before calling the doctor...or after? Do I hug my 7 year old who didn't see me yesterday or do I insist that she say her math facts?

I pray that whomever reads what I have written will indeed find it beneficial and encouraging...because I know from personal experience that encouragement is so doggone hard to come by most days...

Atlanta, Toledo, and a Garden ;)

So the news is seeping in from Atlanta and I have never in my life felt more...ignorant. I have always been able to research and grasp the information regarding Will and felt fairly competent when talking to his numerous doctors. But mitochondria (mito for short) issues? Oh my heavens. When you start talking about oxidative phosphorylation...well...you lost me at hello. Let's just say that the rusty old brain is getting a workout these days relearning about cellular respiration (remember that 9th grade biology course that you knew you would never really need? Ha!) and anabolic and catabolic processes in relation to glycolysis. Yep. A little light reading going on over here at the Coleman home...

On a lighter note...the garden is beginning to thrive (thank you, Lord, for the rain so it could thrive on total neglect!) and beans should be in next week. Anyone interested in some? And for the record, squash bugs really do NOT like nasturtiums! SO far, it's working! No spray and very few bugs. Woohoo!

We have an appointment in Toledo. Will is becoming symptomatic again, and the news from Atlanta is filtering in, leaning towards a Complex III and Complex V mito disorder, so his neurologist recommended we go asap. Well, asap isn't exactly in the budget or on the calendar, so we're heading up the last week in July...Billy and kids will remain at home (Billy is still working insane hours) while Will and I trek north. Will's requesting a very long Jeep ride, but I'm not sure if it will get to make the trip with us or not. That decision is still out. An '88 Jeep on a 1200 mile drive might not be the wisest...but then again, it only has 168K miles on it...

Please remember to pray for us. The ropes over here are getting a bit frayed...

HEAV article...Homeschooling with Chronically Ill Children

You can simply avoid this post if you don't want to read a really long one. :) I submitted this tonight...If you guys have any thoughts on it, I'd welcome them. It should appear in the fall issue of the HEAV Educator Magazine...The magazine will have a nice little box of how to's, but this is the accompanying article. Comments welcome! :)

Homeschooling with a Chronically Ill Child
Nancy Coleman

Most people don’t realize that when a child is diagnosed with a chronic illness, the family is diagnosed with the chronic illness. No one escapes. When our son was diagnosed, the doctor informed us that 70% of the marriages in his practice end in divorce, and the teen pregnancy rate is significantly higher than the national average. I was shocked and pridefully believed that this illness would not affect my family that way.

Homeschooling is challenging. Homeschooling with a chronically ill child defies description. The time, energy, and financial resources dedicated to the management of the illness can be staggering. We have not only the normal, every day challenges of cleaning, laundry, grocery shopping, and child training, but we also have the added challenge of doctor appointments and medical crisis. In the first four months of this year, I drove 5,600 miles to 52 doctor appointments in Richmond (49 miles one way) as well as out of state. The constant physical, financial, and emotional strain takes a toll.

When people ask how they can help, I generally have this “deer in the headlights” look because I just don’t know how to answer. The list is huge; the needs are great. But I‘m not sure I want to burden someone else with my load. Before my son was ill, I would read through those “how to help” articles and think, “Got it: make dinner, pray, occasionally help with a daily chore.” My goal here is to help you understand why that list exists, and then give you some real, practical ideas on how to come alongside these families.

Encourage us
Every “how to help” list suggests sending a card. Now I understand why. I can put a card on my desk and simply see it sitting there to remember that someone out there is praying for my family and loving me even when I have no time to return a phone call or an e-mail. It is a tangible reminder that I am not alone. E-mail is great, but I don’t see that e-mail when I walk past my desk.

Job lost his entire family and all of his material possessions. His friends came by and sat with him for a week and said nothing at all. They just sat with him. You have no idea how much it means to someone grieving (and we do grieve over the health of our children), to let them know that they are not alone. Pray for the family, and then drop them a note that tells them you prayed for them. It is a huge encouragement to be able to gaze at the card on the shelf. It is a reminder that we are loved not only by our friends, but by our Heavenly Father.

Remind us
Remind the family of what is true. We often hear, “God won’t give you more than you can handle” or “God doesn’t make mistakes.” We know that God is sovereign and that He has a plan that we just don’t understand. We need to be reminded that God loves us and our children and that even in this God is showing Himself to be faithful. He has not abandoned us. Send a scripture verse with a note that explains why that Scripture is important to you.

Come alongside us
Help us avoid our isolation. Doctor’s offices and hospitals are lonely places, especially when we are out of town. At home, the needs are so great that we just keep plodding forward. There is no time to do anything else. We would love to go out for coffee or visit for an afternoon, but school and housework are already incomplete. How do we afford the time?

If you would like to visit, suggest working on a job together. That bathroom that is half painted can be finished in an afternoon with a friend. Not only do we get to see a friend, but we get to complete a task that never leaves the list. We need human contact and friends, but sometimes we just don’t see how it fits. There are always jobs that two can do… weed a flower bed or bring your ironing over and work together while you chat. If you simply want to visit, offer to come over for an hour and bring a snack to share. It is a manageable amount of time for both, and removes the panic of “how to be hospitable.”

Include our children
Homeschooling brings monumental pressure. Older children are better able to manage because they can work independently. My younger children are a whole different ballgame. We have a family friend who volunteered a couple of days a week to keep my younger children moving forward academically. We would have lost almost this entire school year if not for Erlene.

Another family invited my older children to their home for a science and world geography class. We were able to keep that one afternoon a week available for that class, and my older children were able to see their friends and complete two classes that I did not have to manage at all. Not only would my children not have seen their friends, but those classes would never have happened this year if not for this family.

The child that is ill gets the vast majority of attention. He also gets to escape household chores because he is either ill or at a doctor’s office. The other children therefore, carry not only a heavier load, but they do so with less supervision and attention. They are just as isolated as I am. Consider including them when your family does something fun like going for ice cream or visiting a museum. If your child is playing a team sport, consider asking if you can transport a child. My children would love to play team sports or take ballet, but I simply don’t know how to make it happen.

Pray for us
70% of the marriages with chronically ill children end in divorce. I really thought Dr. Grubb was exaggerating. The marriage is the foundation of the family. But when the family is assaulted by a chronic illness, the strain on the marriage is truly unbelievable.

I am utterly swamped trying to keep up with daily life as well as understanding all of my son’s diagnoses, medications, and how he feels each day―because any change in the morning could have consequences for the afternoon. He has multiple issues and two of them are rare and little understood.

My husband is utterly swamped at work and feeling the pressure of excelling at his own job performance while still maintaining a relationship with me and the children. Changing jobs takes on a whole new perspective when you have to consider the health insurance issue and whether or not our son would be insured by a different company.

Add in financial pressures from medical expenses and just the driving (36,000 miles per year and traveling to out of state physicians), and the marriage struggles. Time is what we don’t have but what we need to nurture the relationship. How marriages survive without Christ is truly an enigma to me. Please pray for us.