Showing posts with label books. Show all posts
Showing posts with label books. Show all posts

Thursday, October 8, 2015

Times of Transition

To me, the cooler months of fall seem more like a season of newness than do the cold winter months of January. Maybe it's because that's when school, Bible studies, and small groups all start up again and we have to transition from our lax summer schedules to busier days that are filled with a flurry of activities. (I also realize that part of the busyness is that we have so much to get in before the snow flies).

Another reason fall is a great time to get a fresh start is because according to God's calendar, the New Year actually takes place in either September or October during the Jewish holiday of Rosh Hashanah. Whether it's on purpose or not, it seems as though our family always experiences major transitions in the fall with this year being no exception.

Spending a perfect fall day at the park
Burning documents - it's much faster than shredding plus this way we get S'mores!
Hanging out in our crowded apartment/office
We kicked off September by moving our office into our apartment. (And yes, it is a little crowded in here). We did this for a few different reasons all which seemed like a good idea at the time. Now, however, my husband is really missing having an office. He's discovered he is not a work-from-home kind of guy. While I can work from home, I have discovered that not having an office is a really good excuse to go to a coffee shop. The library works well too, which by the way, has a coffee shop inside so it is a win-win.

Another transition we have made is that my husband has decided to join my brother's tree crew. This means when my husband is out all day doing tree work, I am the sole caretaker for Faith, not to mention her homeschooling teacher. Thankfully, we get respite care three or four afternoons a week which is when I try to get my work done and run errands. (Or get some rest if we've had a particularly rough night).

Faith's first day of school at home (she seems happy about it!)
Last week, Faith and I began a new adventure called Inspired Collective where we meet with other homeschooling families once a week at a local church. Together, we learn Spanish, science, history, and practice for an upcoming Christmas program.

This group is a huge blessing as homeschooling an only child can get a little lonely for both of us. While she gets to interact with other kids, I get to socialize with other moms. One of the best parts is that all the parents are there with their kids and I get to wheel Faith from room to room and help her with writing, eating, etc. As Rob says, "Faith has the best aide ever this year!"

Our impromptu field trip to Papa's Pumpkin Patch
She certainly is getting taller!
Fall fun with Grandma and Grandpa
Just being silly!
I am still doing some freelance writing but I have also become a published author! My book, Having Faith is finally available for purchase. So far, most of the feedback has been very positive. This is definitely a new season for me and I hope and pray that my book can be a source of encouragement to others.

Because of so much going on, I made the tough decision to step down from serving as JOY International's Java JOY coordinator. I still enjoy getting together every month with my fellow JOY bloggers all of whom have been such a blessing to me. These ladies are true prayer warriors and are always ready to offer advice, friendship, and the love of Christ. 

As you can tell from the pictures, Faith is blossoming into a beautiful young lady. She is definitely a preteen and has the emotions to prove it! We've certainly had some challenges with some of these changes but God gives us the grace and the strength to get through them.

Through it all, I am thankful to God for new opportunities and family and friends who have encouraged me along the way. I look forward to all that He has in store during this New Season!

Sunday, September 28, 2014

A Season of Change

It seems the only time I've been updating my blog lately is when the seasons change! This time, though besides the season changing from summer to fall, there are some changes happening with us as well.
Faith in her new chair - another recent change for us!
Many of you know I quit my full time job in the spring. My last day of work as a customer service representative for a health insurance company coincided with Faith's last day of school. I have been focusing on freelance writing full time. It has certainly been a time of depending on God to continue to supply for our every need!

As a new school year approached, we decided not to send Faith back to school. After praying about it all summer, we made the decision to home school her instead. As I dropped off our paperwork to inform the school district of our intention, I felt an incredible amount of peace. To me, this is a sure sign that we made the right decision.

Faith and friends at a library event
Faith with Clifford the Big Red Dog! She asked where Emily Elizabeth was!
We have gotten so much support as there is a Bismarck Mandan Area Home Educators group, which is a Christian organization. There is also the North Dakota Home School Association. We have taken advantage of being a part of both and have found people who knew all the answers to our many questions.

It has also helped to have many good friends who home school and also members of our church. I have a very good friend who is a special education teacher who we have gotten input from as well.

Faith and her new teacher!
Currently, Rob is doing most of the teaching. We are really trying to focus on teaching her to read. We truly believe she'll be able to do it, it's just a matter of finding what works. A few people recommended the book. Teach Your Child to Read in 100 Easy Lessons . So far, it is going well and I am happy to say Faith is making progress.

What about you? Have you ever prayed about making a major change in your life? How did God help you know you were making the right decision? I would love to hear about it!

Changing leaves - a sure sign of Fall and a new season

Friday, August 1, 2014

Five of Faith's All Time Favorite Books

We've been reading books to Faith ever since she was a baby.When she was little, she had to wear an eye patch for 30 minutes a day in the hopes it would help strengthen her eye muscles so they would no longer turn inward. Reading a book to her while she was wearing the patch was a great way to keep her distracted from having to wear it. Even after she no longer had to wear the patch, she continued to love being read to.
Reading to Faith when she was little
As Faith got older, we had hopes she would learn to read on her own. She is ten and that still hasn't happened. We continue to pray and try to find ways to help her be able to read. Her music therapist is trying to do all she can to help us with this endeavor. We know her vision is fine but we think her eye muscles might not be working properly to enable her to focus on seeing a word long enough to read it.

Instead of reading, she spends a lot of time memorizing. For this reason, she likes shorter books and even though I've tried to read chapter books to her, she quickly loses interest. She even memorizes the name of the author and the illustrator which is handy when we go to the library to look for books!

Daddy reading one of Faith's favorite books to her
Through the years, she has especially liked these five books:

Amelia Bedelia by Peggy Parish - Even though there is a younger and more modern Amelia Bedelia, Faith still likes the old-fashioned funny housekeeper who works for Mr. and Mrs. Rogers and has a habit of taking things way too literally. There are a lot of times I roll my eyes at Amelia Bedelia's silly antics but I must admit, she is pretty hilarious.

The Monster at the End of This Book by Jon Stone - I was amazed to see that this Sesame Street book featuring Grover was first published in 1973. That means the story is older than me! One of Faith's former respite care workers loved this book as a child and I'm glad she recommended it to us. Ever since Kimberly came for a visit last month, Faith has been wanting to read this book again almost every night.

We're Going on a Bear Hunt by Michael Rosen - This modern classic is not only a book but a video as well. There are a ton of videos on YouTube where kids do their own rendition of this popular book. (Check out one of our favorites below). I must admit when I first read it to Faith I wasn't overly impressed but she absolutely loved it. It started to grow on me though and for as many times as we've read it, I'm still not tired of it.


Curious George's First Day of School by H.A. Rey - Curious George is a cute little monkey "who's also very curious." Faith loves the most of the Curious George books but the one where he goes to school to be a helper is one of her favorites. She also likes to watch Curious George on DVD and Netflix. It's also on PBS at 7:00 a.m. but that's a little too early for us!

Franklin Makes a Deal by Paulette Bourgeois - Franklin is a cute little turtle who has lots of animal friends. There are lots of Franklin books but this one is Faith's favorite. I think it's because we're always saying to her, "OK Faith, here's the deal..." She also likes to watch Franklin on DVD.

I'm curious to know what some of your child's favorite books are. Also if your child has special needs, what are some things you are doing to help them learn to read? 

Sunday, April 27, 2014

Book Review: In Sickness and In Health by Mandy B. Anderson

The book, In Sickness and in Health: Lessons Learned on the Journey from Cystic Fibrosis to Total Health by Mandy B. Anderson, is the author's personal story of what life is like living with what doctors call an incurable disease. In reading her story, I felt like I could completely relate to her. Although my diagnosis of a congenital heart defect is much different than hers, all the ways in which being a sick kid can take an emotional toll, is very much alike.

For instance, most kids don't ever have to think about dying an early death or having doctors put an expiration date on your life. This cannot only be emotionally devastating but spiritually devastating as well as "words of death" are constantly being spoken over you. As a kid, you can feel the fear and anxiety in those around you so you take it upon yourself to be the "brave" one. You learn how to mask and hide your true feelings and inadvertently start pretending to be someone you are not.

While Mandy talks about these struggles growing up with cystic fibrosis and with doctors telling her she would never see her high school graduation, she offers much hope despite her dire circumstances. She does believe she has experienced God's healing in her life - to the point that she can run miles without gasping for air. But she also recognizes that just because she was diagnosed with cystic fibrosis, she knows she still has a choice to choose sickness or to choose health and wholeness. She says, "When it comes to our health and quality of life, we always have a choice." Some of the positive choices she has made to help her live as healthy of a lifestyle as possible include eating well, exercising, chiropractic care, massage therapy and using essential oils.
Mandy B Anderson shares her story at Java JOY in Bismarck
Throughout her book, Mandy talks about overcoming her fears of dying young and how having a new perspective, speaking words of life and forgiveness have all been paramount in living life as an overcomer. She says many people throughout her life have said hurtful things to her regarding her disease and she had to learn to forgive each and every one of them.

She recalls a time at a wedding reception when one of her classmates that she had not seen for several years and who had too much to drink came up to her and said very loudly, "Wow! You're still alive! I thought you would've been dead by now from that thing you live with." Not only had she learned to forgive people who said insensitive things to her but she also had to learn to forgive herself for thinking she wasn't good enough, for not believing in herself and for judgments she held towards herself.
Mandy and her team at a speaking event in Bismarck
One chapter I could really relate to Mandy is the one titled, "Walk by Faith, Not by Sight." Having had a medical condition my whole life and then having a daughter with a disability, I have struggled with how to balance science and medicine with faith and healing. Mandy says that faith is something that must be exercised every day, whether we see proof of it or not. She says when it comes to sickness and disease, we can still believe we're healed even if we don't see it from a medical standpoint. I love that Mandy says, "I will put my faith in God's word long before I put my faith in medicine." She goes on to explain that while medicine does have a place, we tend to have more faith in medicine than God's healing power.

Mandy does a great job throughout her book of telling her story to those themselves who struggle with chronic illness but also to parents who have children with a congenital or incurable disease. I think any parent of a child with any type of special needs will also get a lot out of this book and might enable you to better relate to your child by understanding what your child may be feeling or thinking. Even if you are not one who is dealing with sickness but are trying to make positive changes in your life, this book will be helpful and encouraging.

Click HERE to learn more about Mandy B. Anderson. Buy Mandy's book: In Sickness and In Health: Lessons Learned on the Journey from Cystic Fibrosis to Total Health
Mandy selling a copy of her book 

Monday, March 11, 2013

Brain Awareness Week and the Anat Baniel Method

Did you know that this week is Brain Awareness Week? I find it interesting that this is the week Faith will be introduced to an Anat Baniel practitioner and taking her first Anat Baniel Method (ABM) lessons during this week in particular.

The ABM practitioner we are seeing is coming here from Milwaukee, Wisconsin. Rob met her in January during a workshop about ABM. Through another mom of a little boy with cerebral palsy, we learned the practitioner is coming back to Bismarck so we decided to schedule Faith for some lessons (they call them lessons, not therapy sessions). The mom I talked to recommended getting the book, "Kids Beyond Limits" by Anat Baniel before the lessons started and I am glad I did!

Through working with Moshe Feldenkrais, Anat Baniel has developed her own method of working with kids with special needs. For the past thirty years, she has worked with kids who have cerebral palsy, autism, ADHD, undiagnosed developmental delays and any other type of special need caused by a dysfunction of the brain. She is originally from Israel but currently works out of her center in San Rafael, California.

The book is helping me to learn more about the Anat Baniel Method, and I must say I am really excited to see how this can help Faith. We seem to be at a standstill with her traditional therapy and it is a little disappointing because I feel Faith is capable of so much more! I also know though, that I can't put all of my hope in this alternative therapy but we know we can't not try it either, especially since we have a practitioner coming here to Bismarck! (Most of the ABM practitioners work in large cities throughout the country).

The whole basis of ABM makes so much sense. While traditional therapy tends to focus on doing repetitive movements, exercises and botox injections to help relax the muscles, ABM gets to the root of the issue - the damaged parts of the brain that cause the muscles to have high tone. The focus is all on the brain and the goal is to find ways to help the brain reorganize itself by forming new neural connections. Anat Baniel writes "today we know that the brain can change itself. It is the part of us that is, in fact, most capable of change." How exactly do you get the brain to change and to form new neural connections? Well, I still have a lot to learn but between meeting and working with an ABM practitioner and reading the book, Kids Beyond Limits, I hope we can gain insight that will help Faith.

I can't wait to share with you how are lessons went - we have four scheduled this week. I'll try to take some photos too and share those as well. What about you - are you a special needs parent who has tried ABM with your child? What were your experiences, good or bad? I would love to hear from you! Happy Brain Awareness Week!

Saturday, February 16, 2013

A Very Long Pacemaker Appointment

Earlier this week I had my annual appointment with my pacemaker doctor who comes to Bismarck from the Mayo Clinic in Rochester, Minnesota. It is a huge blessing that I don't have to travel to Rochester, which is about 600 miles from Bismarck.

I really truly thought I would be in and out - a quick ekg, a quick pacemaker check, a quick chat with the doctor and I would be done. I scheduled the appointment at 8:00 a.m. thinking I would make it to work just in time for my 9:00 shift. Boy was I wrong!

I got up to the pediatric floor at about 7:50 a.m. Yes, the pediatric floor because the doctors who come from Mayo specialize in pediatric cardiology so they are mainly there to see the kids. But since more and more kids have been surviving heart defects and growing into adults, some of these pediatric cardiologists specialize in adults with congenital heart conditions.  Anyway, so there I was on the same floor with all the kids - the same floor I take Faith to when we see her pediatrician - and I hear my name being called.

pic of a pacemaker
I first meet with a cardiologist who is doing his residency at the Mayo Clinic and has come along to Bismarck with my pacemaker doctor. He has a lot of questions about my meds, about my health, about past surgeries and about me being able to have a baby.

I patiently answer all of his questions, confirming several times that I have not had any major issues or hospitalizations since having Faith. I then hop obediently up onto the exam table where he starts checking my pulse - not just in my wrist, but my feet and my inner thigh. He tries a few times to get a pulse in my left wrist which, by the way, is nonexistent. He finally gives up and gets out his stethoscope and I began obediently breathing in and out as he listens to my heart.

Finally, I go in to the next room for them to check my pacemaker. Admittedly, I was a little disappointed I didn't get to sit in the big, soft, cushy chair like I usually did. They hook me up with electrodes then place the magnet on my chest over my pacemaker and turn on the computer. It was only moments later that the report came back - my pacemaker was pacing 100% and had two years of battery life left.

I was disappointed to hear this because I had just gotten my last battery in November 2011 and it was already on its way to expiring which meant I would have to get a new one sooner rather than later. I was also bummed to hear I was pacing 100% of the time because to me that meant my heart depended on my pacemaker all day every day which negated the hope that God was healing my heart.

It was around 8:45 at this time and I was supposed to begetting to work. Instead, I was going upstairs to the cardiology floor to have an electrocardiogram. It was the complete opposite from being on the pediatric floor, as on this floor were the older folks who had typical heart disease. I waited about ten minutes before getting in for my ekg, which only took about two minutes, I was then sent back downstairs where I was told they had to do my pacemaker check again.

My doctor explained they needed to know what was going to happen to me if my single atrial lead stopped functioning or my battery died. In other words, they needed to stop my pacemaker from pacing. This is when they explained the real reason for soft, cushy chairs - in case someone passed out when they slowed down or stopped someone's pacemaker. But I didn't have the nice chair to sit in, just a normal exam table with a pillow behind my head.

I could tell when they began to slow down the pacemaker -  I could feel my heart beating very slowly. I could really feel it when they turned the pacemaker completely off. And guess what - I didn't pass out! My doctor explained to me this meant my heart was not pacemaker dependent.

"But what about my pacemaker pacing 100% of the time", I asked him.

He said because my atrial lead was not placed as well as they would have liked (it took three hours for them to get my pacemaker implanted as opposed to the one hour it normally takes) it is safer for my pacemaker to be running 100% of the time instead of relying on my single atrial lead to tell my pacemaker to pick up my heart rate. (This is why my battery life is much shorter than other people who have pacemakers). 

Still, I wasn't done with my appointment. I had to go back upstairs to get hooked up to a 24-hour holter monitor which meant I was going to have to wear it to work. I was not prepared for this at all and I was kicking myself for not having grabbed my zip-up sweatshirt to hide my clumpy-looking chest. After getting hooked up, I was finally out the door and didn't get to work until 10:15
This is what a holter monitor looks like. Thank goodness they are much more compact than they used to be and I was able tuck it into my bra for safe-keeping. No one at work seemed to notice I was even wearing it.
I will be seeing my pacemaker doctor again in a year and in the interim, will be hooking my pacemaker up at home to test my battery function via telephone wire to the clinic each quarter. In another year I might be at the Mayo clinic for a battery, possibly even a lead change. Though I don't look forward to this, I am happy and at peace right now because my heart is not pacemaker dependent! Upon hearing this news, a friend of mine said, "Not pacemaker dependent? Wow! That must mean that your heart is dependent on our Healer!" I LOVE That!

I am so thankful to God that I am doing so well despite what I have gone through with all of my heart issues. He is truly the Healer and no matter how many world-renown cardiologists I have seen or surgeons who have operated on my heart, He always has been and always will be my Great Physician - the One in whom I can truly put my trust.

I am currently working on a book called, Having Faith, that discusses being born with a congenital heart defect then going on to having a baby with special needs of her own. Feel free to check out my website at www.carijean.com and also my blog, Having Faith.

Saturday, January 21, 2012

What About the Boy - A Father's Pledge to His Disabled Son

What About the Boy? is written by Stephen Gallup, the father who made a pledge to his disabled son to help him find wellness no matter what it took.

Joseph's parents were convinced that something was wrong him. He spent much of his time crying and while lying on the floor he would shake his head from side to side. Doctors and specialists told them that Joseph had a brain injury but that nothing could be done for him. 

Believing that it was Joseph's birthright to be well, Joseph's parents took matters into their own hands, rising to the challenge of enabling Joseph to live a life of wholeness.

For my complete review of What About the Boy click here. Read Stephen Gallup's guest post on my blog, Who Needs Sympathy?

Friday, June 10, 2011

Who Needs Sympathy?

Guest Post by Stephen Gallup

Last week, a columnist for the local newspaper interviewed me in connection with a memoir I wrote that’s being published this year. It was a comfortable, low-key discussion in which he asked about the basic facts regarding my disabled son Joseph and what I’ve learned that might be of value to other families.

It was the sort of dialog that required no special preparation in advance. I just sat down with him and talked about the subject closest to my heart. But looking back on it now, one thing bothers me. In concluding the interview, the reporter expressed heartfelt sympathy for everything I’ve endured. He was being more than polite. I mean, he laid the compassion on with a spatula. Startled, and already thinking ahead to what I had to do next that day, I just thanked him and said goodbye. But now that final note troubles me.

I don’t want sympathy!

First of all, from the point of view of a new author hoping to promote his book, sympathy is not a good thing to be inspiring. Some readers say they dislike memoirs because so many examples of the genre are tales of woe, abuse, deprivation, and general unfairness, presumably written by people who somehow expected life to be all sweetness and light. I understand that view of memoirs, although it’s inaccurate. Stories, whether true or fictional, by definition have to revolve around a challenge or problem. So, if you like stories, it makes little sense to object when the characters have issues. It’s what they do with those issues that matters, in literature as well as in life.

Our family took certain stands with regard to Joseph’s condition. You may not agree that they were wise or appropriate, but from the perspective we had at the time, no other course of action seemed right.

We accomplished something, too. For example, our son, who was completely immobile at 18 months of age, when we took matters into our hands, was walking independently at 39 months. Also, because we had a plan, we were able to maintain a generally upbeat and optimistic frame of mind, while other parents known to us, who had similarly disabled kids, were living from one doctor appointment to the next and going through a box of Kleenex each time.

Yes, that glorious early momentum came at last to a grinding halt. Joseph is now 26 years old and still disabled. But at least he isn’t disabled because we never tried. There’s comfort in that.

But this is just the beginning of my reservations about being on the receiving end of pity. Although I can’t avoid being Joseph’s spokesman (whether he approves of what I say or not), this is his story, far more than it is mine. I seriously doubt that he wants anybody’s pity.

And what does pity mean, anyway? Robert Rummel-Hudson, author of Schuyler’s Monster, speculates on his blog that it’s one of two responses the world has for disabled kids: They’re either judged for failing to meet expectations, or they’re viewed as being inferior. Of course, neither response is constructive or helpful. It’s true that disabled people and their representatives are carrying a burden—but the same can be said for most folks. This is the main thing. It’s a rare soul who gets through life without encountering disaster or some extra difficulty.

If we can make life a little better for such a person, we are only doing what we hope someone else can do for us, if not today, then soon. If we cannot help, then the simple respect due to a fellow-citizen is appreciated far more than sympathy.

I wish I'd had the presence of mind to say some of this to the interviewer.



Stephen Gallup is the author of WHAT ABOUT THE BOY? A Father’s Pledge to His Disabled Son. For more information, visit fatherspledge.com.

Tuesday, May 18, 2010

Stinky Face


This morning, I had the privilege of going to school with Faith and reading a few stories to her class. One book I chose to read is called, "I Love You Stinky Face." (written by Lisa McCourt) This book is really a story about a mother's unconditional love for her child. The title of the book comes from the child asking the mother that if he was a smelly skunk and his name was Stinky Face would his mother still love him. She tells him she would put him in the bathtub but if he still smelled she would tell him, "I love you Stinky Face."

It's a cute story, but there is a story behind the story that I wanted to share with Faith's classroom.

After reading the book to them, I explained that a few years ago, one of Faith's friends and caretakers (Kimberly) took her to a place where they could make things out of clay. Faith decided she wanted to make a cup or a mug of some sort. She wanted it to be really big because she knew how much her mom and dad (especially her dad) loved coffee.

After Kimberly helped her mold the big mug, Faith decided she wanted to paint it pink and purple. So they painted it pink and they decided to write a message on the mug in purple. Kimberly asked Faith, "if you could tell your mom and dad anything you wanted to, what would you say?"

Faith responded, "I love you stinky face."

Kimberly wasn't too sure about writing this on the mug because essentially Faith was calling her parents stinky face.

Kimberly asked, "Are you sure you don't just want to write 'I love you?'"

Faith was very adamant and said it had to say, "I love you stinky face."

After I told this stoyr, Faith's teacher said, "That sounds just like Faith!"

Her class really seemed to like this story and laughed and laughed. They all especially enjoyed passing the mug around to look at it more closely. I told the children that this mug is one of the most precious gifts Faith has ever given us.

It was so much fun to share this book and this story with Faith's classroom. Later, I also read "Amelia Bedelia" which is Faith's favorite book. It was cute because Faith even filled in some of the lines. The kids in her class are so sweet and I am going to miss Faith being in kindergarten with these wonderful kids, wonderful teacher and wonderful teacher's aide.