Homeschooling with a Chronic Illness - A "Guest" Post - Me! - Tricia J.

Somebody asked me the other day why I didn't introduce myself in a post and explain how I came to be a homeschooling mother with a chronic illness, so here I am.
My name is Tricia J., and this is my day-in-the-life, not-looking-for-a-book-deal, diary-of-a chronically-ill-home-schooling mother, blog. My husband and I have been married almost eleven years and we have four bright and remarkable children who I love more with each passing year. I'm not someone who ever really pined away for children, so the fact that I love them so much is a surprise even to me on most days. I have a ten year old daughter, and then three sons, aged nine, seven, and two. We also have a Mastiff named Riley, a rabbit named Stuart, and three soon-to-be-laying chickens.

What chronic illness do you deal with? I was diagnosed with ulcerative colitis right before we got married, which was also about six months before I realized I was pregnant with our first. (I also have PCOS so each pregnancy is a bit of a surprise.) Shortly after giving birth, I got pregnant again, and had my second child, and second c-section, just eleven months later. Between my second and third child, a colonoscopy revealed that my IBD {inflammatory bowel disease} was actually worse than they had originally thought and I was diagnosed with Crohn's Disease which is supposed to be the worse of the two. {Though they both pretty much suck, so it's a very small matter of degree.}

After those two pretty horrible pregnancies during which I had really bad flare-ups, my third pregnancy was relatively uneventful with no flare-up, though it ended with a third c-section. About seven months later though, I started having really bad flares that I could no longer get under control with my regular medications and I was tired of all the side effects of the prednisone {moon face, insomnia, raving lunacy}. At that time I started on Remicade infusions and it has made my quality of life much better. I have more energy and much longer gaps between flares, and when I do have flares, they are less intense.

Two years ago I had my fourth baby via c-section. I remained on Remicade throughout that pregnancy. I was pretty sick during the last pregnancy as well. It didn't help that I was also 43 at the time I got pregnant. During two of my pregnancies I was part of OTIS studies that studied the effect of drugs for asthma and Crohn's used during pregnancy on pregnancy outcomes and newborn health because I was on that many drugs. So yes, you can have Crohn's Disease and have babies. It's not easy, but it can be done. 

How did you decide to begin homeschooling? We started homeschooling when our oldest turned five and she was having some medical issues that would have had her missing two mornings a week of the private and expensive kindergarden we had just signed up and paid for. A week before school was to start, we decided to pull her out and I was going to homeschool just her, for just one year. {I had the younger two in preschool two mornings a week}. We enjoyed it so much that we decided to go for another year, and the next in line kept whining wanting to know when he would get to stay home and do kindergarden with Mommy. So he stayed home and the third one went to preschool three mornings a week. 

By the time the third in line was five, we decided to just admit that we were going to be homeschooling for a while and kept all three at home.  After the fourth one was born, I was getting very tired and feeling very close to permanent burn out, so I decided to put the older two in public school for the spring semester of school. They did amazingly well with the transition and really thrived for those four months. They came home for the summer, and then started again in the fall. After two months in public school that fall, we moved to a new city and that's when we came back to homeschooling. So we will soon be starting our 6th year of homeschooling. No one is more surprised than me.

How do I manage homeschooling with a chronic illness? I have to be honest, I have always had household help since three months after my first baby was born. Even before we were married I told my soon-to-be-husband that I would always have to have at least part-time help with any future children because otherwise I was going to end up on the news and not in the good way. 

We have no family nearby to offer any help and I had moved three hours away from all my friends to marry my husband and move to his town, and he traveled often on business for weeks at a time, and was rarely home before the children went to sleep, so I had to have help. Two of our children also had myriad health problems during the first four to six years of their lives that required lots of specialists, surgeries, weird procedures, and many emergency room visits. (Usually when my husband would be in India for three weeks and unavailable by phone.) And we also moved three times in less than four years and managed a huge house renovation over the course of a year that finally resulted in us getting the house on the Historical Registry. [I HATE that I feel I have to make excuses and justify this to you or anyone else. And I don't have to, you're right, we have the money and I need the help, so there it is.] My husband does not like to spend the money, he often complains about it {though less often now}, but I have always budgeted household help under mental health insurance. Even when our budget was leaner, I always had some sort of help that I could rely on. Since being diagnosed with Crohn's Disease and then having back-to-back, difficult pregnancies and four c-sections, there has never been a time I felt physically stable enough to not have help in the home. I also had un-diagnosed post-partum depression after my first baby who was colicky to boot, and I did not realize it until I had my second baby and in comparison felt so much better. I remember looking at him one day when he was just a few weeks old and thinking, oh, so this is why women like to have babies. I had "during- pregnancy" depression with my fourth pregnancy, but luckily, it went away shortly after he was born and my hormones balanced back out, just like my gestational diabetes went away on its own very quickly.

How has our homeschooling evolved over the years? I started off wanting to do a pure, unadulterated Charlotte Mason approach but it was difficult for me to keep up with all the reading aloud due to my illness. I also felt like that with so many subjects we were just skimming and I found it impossible to do with more than two children at a time. I read some more homeschooling books and loosened up a bit and sprinkled in a little Waldorfy-ness. Then I wanted to be a Classical homeschooler and read a slew of those books. I never bought a boxed curriculum and was always trying to keep up with all the cool homeschooling blogs I saw on-line. And boy did I read too many!

Then it started to dawn on me that the women I was trying to emulate had started having kids ten to twelve years before I had, did not have chronic illnesses, and usually had teenagers who could help them by the time they got to be as old and tired as I am. I could not keep up with that. I still often read those blogs, but now I read them like I used to read Martha Stewart Living magazine, like visiting a parallel universe where everyone has their crap sorted in pastel color-coded, labeled bins; just as an anthropological observer.  Once in a great while, I will adapt their ideas to make them chronically-ill homeschooling-Mom-friendly.

I also started to be more discerning about which blogs and homeschooling books I read, period. I started to notice that a lot of homeschooling blogs written by Moms who look like "experts" are actually written by Moms who have been homeschooling for less years than I have, with less children than I have, usually did not have age and a chronic illness working against them, and if they had published books they were self-published by their husbands or friends or as e-books. {I understand this is the new wave in publishing, but it does make a difference to me to know that someone's book has been vetted by a publisher and/or agent rather than self-published.} Screening those out has cut down on my blog and homeschool book reading considerably. 

I finally admitted we were Catholic unschoolers this year and it's been a very relaxed school year. I joined a Catholic unschooling yahoo group and have been able to hear from Moms who have been doing this for a long time, and bit-by-bit they are stripping me of my need for written results and verifiable progress. Math is the only subject my kids still do traditional work in, and it's once a week during the school year with a tutor. I had to take myself out of the equation because math was becoming a sore point between my children and me. Thanks to our tutor, they all love math again and are progressing at grade appropriate levels with 1/5 the time commitment and a lot less screaming and crying.

It has been challenging to "let go" since I come from such a school and book and education-oriented background. Unschooling is the style of homeschooling that allows me to be most at ease about my children's learning, our family life routines, and my health's up and downs. Unschooling could easily make a different Mom very anxious and so obviously wouldn't be a good fit for her and her family.

What has been the biggest blessing of homeschooling with a chronic illness? For me, it has been learning to say "No" much sooner than the average Mom and not over-extending myself and volunteering or agreeing to serve on every committee I am asked to help with. It has taken many of my healthy friends years to figure this out (some still haven't figured it out.) Yes, it's flattering, and yes, it's nice to feel needed by someone outside your family. But there's only so much of "Mom" to go around, and I have to safeguard her. Being ill has forced me to make choices about where I will spend my energy and made me plan for when I will have rest days. I cannot physically do what other Moms can do, so I have had a lot more practice at saying No than the average Mom. Going even a step further, homeschooling while being chronically ill has also taught me to train my children to learn how to say No. Sometimes I have to do it for them, and maybe even disappoint them. Other times they get to choose which activity they want to participate in, and which one they will have to decline. Because if I can't do it all, then obviously neither can they, since realistically I am the one who is doing the driving, buying the uniform, making sure the dance shoes fit, remembering the team snack, etc. etc. It doesn't do any good to cut back on Mom busyness just to fill the void with kid busyness. 

This is one area where I don't think children will learn just from my example, that is, if I had started to cut back on my commitments away from the family without pointing out to them the choices I was making. I think they learned the lesson of balancing work and play with rest by having to cut back on their own extra-curriculars and making choices about what they will do each season and sometimes on a given day when somehow three activities/recitals/birthday parties all land on the same day. My children know by now that we are not going to drag the family through so many events in one day - they have to pick the most important thing. {And believe me, it is ego-boosting when your eight year old son decides to choose to go to his god sister's First Communion over his own Little League play-off game.} My hope is that by training them to say "No" and choosing their activities wisely as children, they will not over-extend themselves when they are adults and/or new parents. It shouldn't take years to learn to say No.


Tips for homeschooling with a chronic illness: 

1. Have a plan in place for flare-ups
Child care - who can step in on a moment's notice when you can't get off the couch? Your husband? Mother? Nanny? 
Homeschooling - decide on a homeschooling method that allows for weeks of little to no "school" with no warning at all, because worrying about slips in the schedule will only cause stress which won't get you better any faster
Food - have a high energy and low energy menu plan - for me that means knowing what protein I am cooking each night of the week. If I have energy, and it's a Tuesday, I make chicken. If I am low-energy on a Tuesday, my husband brings home a rotisserie chicken.
Laundry - Make sure you have enough underwear and socks for two weeks. You can wear pajamas all day, but you'll need the essentials.

2. Read spiritual/religious materials at every opportunity to strengthen yourself
I never read as much as I do when I'm not feeling well and then I read every spiritual book I can get my hands on. 
I read the Catholic Catechism and the daily Mass Bible readings on my phone just about daily
I am also reading more fun books and more intellectually challenging books and less child-rearing books.

3. Keep your marriage strong by communicating what you are going through to your husband
It took me many years to figure out that my husband could be much more compassionate and helpful if he knew what was going on with my body. I had to get over my embarrassment and I now communicate what is going on matter-of-factly and tell him what would be most helpful to me. Men like to help but I think they worry so much about doing the wrong thing that sometimes they don't do anything at all. 

Well, God Bless you for reading all the way through. I hope to bring you a guest post from another chronically ill homeschooling mother very soon.