Hope is the thing with feathers...

     

Hope is the thing with feathers 

That perches in the soul, 

And sings the tune--without the words, 

And never stops at all,

And sweetest in the gale is heard; 

And sore must be the storm 

That could abash the little bird 

That kept so many warm.

I've heard it in the chillest land, 

And on the strangest sea; 

Yet, never, in extremity, 

It asked a crumb of me.

Emily Dickinson

We are pressing onward. In the midst of chronic illness and other related trials, I am gifted with hope for the future and hope that we will see the end of this particular run of challenges soon. I keep thinking to myself, that the only way through is forward. Surely on the other side of this week, this month, this year, there will be a lessening of pressing stresses and life can return to a more "normal" pace.

Whit has started weekly injections, weekly blood work, more daily medications, and is still getting his infusions and supplements. He feels good today. It is hard to predict what each day will be like. We are living with the constant up and down of good days followed by bad days followed by awful days followed by a great day. This is the kind of schedule that really teaches you to enjoy the small things in life - quiet moments of cuddling on the couch, reading books out loud together, laughter, beauty, love...

People are so kind. Lots of people ask about Whit. The neighborhood where we live has nice places to walk. The shop owners ask about him when they see me out and about. My wonderful, encouraging co-workers are always checking in with me to see how the week is going. My family is incredibly helpful and supportive. I have friends that are always checking up on me. I am grateful.

I have hesitated to write much about Whit's health issues. There is his privacy to consider. I also feel unsure about how much to share of my personal feelings about his illness for many reasons. But, recently, I began to search for blogs and information about children with severe ulcerative colitis and related auto immune disease issues. I did not find much. What I did find was incredibly encouraging to me. It was so affirming to read about other's experiences with their children and how they have coped. This made me feel that maybe it would help someone else to put myself out there. Whit's combination of diseases does not get that much press. He has celiac disease, severe food allergies, ulcerative colitis, and asthma. Right now, it is the ulcerative colitis that is causing him so many problems. His colon is ulcerated and will bleed out if he is not treated. The struggle since his disease went active again in September, has been to control his bleeding, pain, and other symptoms. He has to be on steroids that cause swelling, weight gain, emotional swings, and sleeplessness. His medications can affect his liver and he has to have weekly blood work to check his liver numbers. They also destroy his immune system.

Maybe I will take this post down at some point, but for now, I feel it is okay to post about our family and our struggle with ulcerative colitis. Whit is running out of time to be on the steroids. You cannot take them long term. He is stepping down now. Over the next few weeks, he will be tapered off of them completely and the infusions and injections will need to sustain his progress. If not, we will be facing some big decisions about how to continue his treatment. We are hoping for the best. As I listened to the birds singing outside my window, as spring creeps in, I was reminded that hope is the thing with feathers. I do hope this spring brings a new season of health to my Whit.

Homeschooling in a time of Colitis

It has been a long time since my last entry. Sometimes life is interrupted by unforeseen circumstances - in this case, ulcerative colitis.

We have lived with ulcerative colitis for a long time. My son was diagnosed with it at three years old, for seven years he has had times of remission and times when the disease was active again. When times are good, he has enjoyed long periods of feeling energetic and healthy. When the disease flares up, times are difficult.

He has been on daily medications since he was three years. He also takes probiotics, vitamins, and eats a careful, colitis-friendly diet. Despite our best efforts, there are still flare ups.

This fall has been a long, hard battle with ulcerative colitis. It first started up again in September. We have tried many things and searched out possible reasons for why things can't seem to calm down... but we are still fighting the good fight and my son is still in the midst of pain, stomach issues, and the uncertainty of what each day will be like. It is hard for anyone to suffer from an illness with chronic pain, but for children, it can be especially challenging. It has been awhile since I have posted an entry here. Life with colitis has taken up most of our time this school year. We are now trying an infusion treatment to see if it can bring him some relief. I hope to get back to posting more soon. I hope I will have more to say about parenting and homeschooling during times of illness. At this moment, I am still pretty tired and too much in the midst of the struggle to write much.

Stories and Art Therapy for Healing

Children experience many bumps on their road, just as we do. Chronic illness or just a stomach flu can leave a child out of sorts and struggling to find their footing again. Too tired to run and play, and sick of the media machine, here is my son experimenting with wet on wet watercolors as a method of therapy.

We struggle with chronic illness at our house. My son has ulcerative colities, severe food allergies, asthma, celiac disease, and other issues to complete the mix of challenges. My husband also struggles with gut issues and recurring kidney stones. All of this can leave the sick and the well in our home feeling overwhelmed.

Sometimes, even when all is well physically, troubled feelings or general angst can also leave its mark. Here are two resources that I have found helpful when you need a creative outlet, a healing story, and some time to put things to right.

Healing Stories for Challenging Behaviour by Susan Perrow
This book is an excellent resource on storytelling and a wealth of information on putting together a plan of action for helping children iron out the rough spots of life.

Painting with Children by Brunhild Muller
Although this is a small book, it is my favorite resource on painting with children. The method laid out is simple and very easy to follow. I have experienced success with all ages of children (even teens) when using this wet on wet watercolor method.

Taken together, this is my prescription for restoring health to the spirit.

In Which I Return to My Homeschool Roots

When we first started homeschooling, seven years ago, I was convinced that my children would learn naturally. I read John Holt and John Taylor Gatto, we joined an unschooling support group and we were off. Those were the days...

Six years ago, my husband started having health problems, our son was diagnosed with celiac disease, food allergies, and colitis, and life as we knew it started to unravel. Looking back, I realize that we went into crisis mode out of necessity. I had to take a full time job and I continued to homeschool. My husband, home often from work with illness, took the daytime routine with the children. Our lives changed drastically. As time went on and time and money were tight, our days took on more stucture. We used more "curriculum" options and assigned more work to make sure the children were exposed to a wide range of things. We read books in Doctor's office waiting rooms, we did Math in workbooks, and we SCHOOLED. The children were learning things. We were surviving.

Fast forward to today - alot of things have changed for us in the past two years. My husband is doing much better health-wise. My son has had his best year yet, and life is better for all of us. I was able to go part time at work with the return of my husband's health. More time for homeschooling, more time for everything...and then, the middle school panic set in.

I think this must be a well traveled trail in the homeschool world. As the 6th grade year starts, parents panic and the "what-if's" set in. What if I haven't done enough? What if they can't get into the college they want to? What if...? This year, the middle school panic caused me to do some pretty crazy things, like sign my children up for two homeschool co-ops/class days. We have always been relaxed homeschoolers with plenty of time at home for reading, crafts, and hanging out together. Since we have never really done the class thing, I thought this would be a good year to try it out. It all sounded so reasonable and organized when I did it. The children could try out the class thing and I would have a guideline to follow for the year.

In reality, things have turned out differently than I expected. We have learned so much - just not what I thought we would learn. For one thing, all the classes, co-ops and clubs got out of hand quickly. Suddenly we were running around too much, too much hurrying, too much gas in the car, too much of too much! When we had a ripple in our home life (a few rough weeks with various things breaking down and causing repairs to cars and home), things really got out of hand. My stress level was high, the children weren't getting enough sleep, and our cozy homeschool world was seriously out of balance. The children talked about the "things we used to do", like take morning walks together and light the "morning circle candle" before singing together at breakfast. Now we didn't have time for these things, we were packing in cereal before running to the car. We were too busy chanting latin verbs to sing and too busy getting ready for weekly presentations to take walks.

Somewhere in all of this madness, the thought came to me that the children had never even asked for a class or co-op. They were quite happy with our old homeschooling ways. It is certainly true that they were being exposed to new things and learning things that we hadn't covered yet at home, but I had to wonder if the trade off was worth it.

In the end, I came to my senses and did what I should have done from the start. I actually asked my children what they thought. I asked them what was working for them and what they liked or enjoyed about their new schedule and what they didn't. I also decided to re-read the books that I had enjoyed and that had originally shaped my homeschooling philosophy. I decided to return to my homeschool roots. Instead of cramming facts into my children, I gave them a few weeks off and tried homeschooling myself instead. I also decided to let them decide for themselves what they wanted to keep, change, or do away with.

I started by reading one of my favorite John Holt books, "What Do I Do Monday?". I was struck again by the wisdom and common sense of listening and trusting the children. Radical trust used to be the name of the game at our house, how had things gotten off track? I followed this book up with David Albert's, "Homeschooling and the Voyage of Self-Discovery: A Journey of Original Seeking". Both of these books are beautiful, insightful and lovely to read and ponder.

Returning to my roots infused our homeschool with a freshness and vitality that put us back on the right track. Now the children are, once again, in charge of their own educational journey. After several weeks of pondering and decision making, we dropped a few clubs and support group activities, had one child who dropped one morning of classes but kept the other, and one child who, for the moment, chooses to keep attending both days of classes and co-ops. So, our experiment this year with co-ops and classes was educational for all of us. While we may have learned new facts in history and science, Latin and Spanish, the most important lesson was to trust the children and to do what is right for your family as well as for each child. Now we light the "morning circle candle" once again, and we have taken back up those family walks as well.