Monday, August 17, 2020

10+ Books for Kids of Chronically Ill Moms

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

Having a parent with a chronic illness can be tough for kids. It can make them more resilient, empathetic, and independent, but it can also make them feel guilty, frustrated, and alone. Some ways to help kids deal with these feelings is to talk with them, answer their questions, and make sure they understand as much as is developmentally appropriate. For older kids, giving them a journal to write in can help. Reading books together about what they're dealing with can help as well.    

With that in mind, I've put together a list of children's books that you can read with your child to help them better understand your chronic illness and limitations.  

by Melissa Swanson
"All the kids in class made paper dolls to show someone they love who is hurt or sick. When it's Ravyn's turn to share, she shows a paper doll of her mom — and it looks like there is nothing wrong!
Ravyn teaches the class that even though her mom looks healthy, she’s not! Ravyn’s mom suffers from fibromyalgia and its evil sidekicks. Ravyn's Doll is a simple and effective way to explain fibromyalgia to your child. In a way that is understandable to children. it shows that not all illnesses are visible and explains how living with an invisible illness affects families' daily lives."


by Ferne Sherkin-Langer
"A distressed little girl expresses her feelings when her mother goes to the hospital. Time drags and the child thinks of her constantly. Her understanding father helps her to cross off the days until she can visit and takes her to the hospital. When her mother comes home, normal life happily resumes. The nature of the woman's illness is not specified, but she is hospitalized periodically, which would make the book appropriate for children whose parents require chemotherapy, for example, as well as being generally useful for any parental hospital stay."


by Nathalie Slosse
"This beautifully illustrated storybook describes the anger and emotion that many children encounter when a close relative or friend is diagnosed with a long-term illness, such as cancer. The story of Big Tree depicts how things are often out of your control and sets out effective strategies for dealing with these emotions."


by Josie Leon
"When Mommy is having health issues, finding a way to discuss it with a young toddler can be challenging. Mommy’s Going to the Hospital offers parents a way to start a discussion using clear language and illustrations that can help you and your family make a plan for the situations and emotions that may arise as Mommy journeys from diagnosis, through the healing process, and back to full health."


by Annette Rivlin-Gutman
"Mommy Has to Stay in Bed is for young children who are faced with the trauma of having a parent on bed rest. In this rhythmic and sensitive story, mother and daughter find ways to cope with feelings of frustration and boredom. Whether the parent is pregnant, has the flu, or is on long-term bed rest, Mommy Has to Stay in Bed brings the brighter side of spending time together in spite of a challenging situation."


by Risa Kirschner
"Abby's mom has a boo boo, so her Nana takes her to the hospital to visit. Follow Abby's adventures as she finds a magical bed that moves, takes her teddy on a wheelchair ride, and learns that spending time with her mom can make a hospital feel like home. Based on the real experiences of the author's then two-year-old daughter, this sweet story teaches that hospitals are safe places for healing and that parents always love their children, even if they have to spend time away from home."


by Katie Carone
"Mommy used to do a lot of fun things with me, but now she can't. Now it's my turn to help mommy! It can be sad and confusing for both kids and moms when a mother is hurt or sick and can't do all the things she used to. This simple and sweet book helps children understand limitations. It shares ideas on how kids can help, as well as activities a mom and child can can still do together. It reminds children that they are loved, and the best thing they can do is show love in return."

by Elizabeth M. Christy
"This is a delightful story told by a young boy learning to understand and cope with his mother's illness. The story creates natural opportunities for families to talk about both the symptoms of chronic illness, and how they affect family life. Even more importantly, the story puts power into the hands of the children. It also offers a helpful "Tips and Resources" section for parents!"


by Melinda Malott
"A mom uses a brilliant jar-and-marble analogy to teach her son about her limitations related to chronic fatigue syndrome (CFS) and fibromyalgia. The book uses marbles, a toy all children are familiar with, as a measure of the mothers limited energy. Using a jar and some marbles, the author conveys difficult concepts in terms that children can understand."


by Simone Colwill
"How do you support a child with a sick relative? How do you empower them (and their family) to help too? You’ll find the answer to these questions and more in “What Does Super Jonny Do When Mom Gets Sick?" Jonny is a little superhero with a BIG problem! His Mom is sick. How can he help? JOIN Jonny and Bear, as they go to the hospital to investigate."
Also see the versions of this book written for Crohn's Disease and Heart Disease.


by Angie McPherson
"Morgan's mom has multiple sclerosis or MS, for short. Sometimes she worries about her mom's illness. But she's found out over time, it might not be as scary as she thought. Join Morgan as she talks about what her family life is like living with a chronically ill parent. There is a resource guide at the back of the book if more information is needed on MS and family life."


by Rachel Smith
"An interactive journal for kids with chronically ill moms. The spoon theory explained, coloring pages, random silly facts, pages for mom and child to do together, and more!"


by Kathleen Long Bostrom
"A beautiful book telling the story of Pete, a boy whose dad used to run and swing him around, but now can hardly walk, much less play. Pete is hurt and angry and doesn't understand why this has happened. Pete's dad tells him that even though he can no longer run, he can still be Pete's father. The book includes two pages of suggestions for parents and others helping a child through loss of this kind."

10+ Books for kids of Chronically Ill Moms:

If you know of any other books, I'd love for you to share them in the comments!

Thursday, August 13, 2020

What Not to Say to a Parent with a Chronic Illness (and What to Say Instead)

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

Being a parent is hard, especially in today's world where an innocent picture of your kid eating a graham cracker on Instagram can be bombarded with criticism or "helpful" suggestions. 

"Isn't your kid too young to be eating graham crackers by himself? He doesn't look any older than six."

"Why are you taking pictures instead of watching your kid so he doesn't choke to death?!? You're a horrible parent."

"Is that a toy on the ground behind him? Don't you know that a messy house stunts your child's growth?"

I may be exaggerating a little, but you get the picture. It doesn't just happen on social media either. Sometimes people mean well, but their comments can be insensitive to say the least.

Now, take all of those up-in-your-business, critical, hurtful comments and multiple them by at least 10 and you have an idea of what it's like to be a parent who lives with a chronic illness. I've encountered so many people who think they can "fix" me or tell me how I've messed up my kids and my health. From the lab technician who asked why in the world I would ever have children knowing that I could pass Ehlers Danlos Syndrome on to them, to the “friend” who informed me that I caused my whole family to have EDS by vaccinating my children (um, that’s not how a genetic disorder works…), to the other "friend" who told me that I only had my health conditions because I "wanted" them, I've heard some doozies that have ranged from mildly insensitive to downright hurtful and I can tell you...the mom guilt is real.

What Not to Say to a Parent with a Chronic Illness (and What to Say Instead)

People think they’re helping but sometimes all they’re doing is hurting. With that in mind, I put together a helpful list of things never to say to a parent with a chronic illness. Some of them are a little tongue in cheek because I think we could all use a chuckle now and then. Also, every single thing on the list has either been said to me or another chronically ill mom I know. I wish I were kidding about that, but I’m not. 

"You don’t look sick!" 
This is usually meant as a compliment, but it sure doesn’t feel like it. Many of us have spent our whole lives trying to prove to our friends, families, and even doctors that we’re not just faking it and that there truly is something wrong. Telling us that we don’t look sick makes us feel like you think we’re just faking the whole thing. And believe me, we wish we were! 
Instead, try saying: ​You’re looking good today, but how are you feeling? 
"I know how you feel."
Um, no. Unless you also have a debilitating chronic illness, you really don’t. 
Instead, try saying: I don’t know how you feel, but I’d like to understand better.

"Well, I’m tired too." 
Yeah, I thought I knew what tired felt like too before my chronic fatigue increased in intensity. Believe me, nothing can compare to this level of “tired.” It’s so intense that at times, I can’t even lift my fingers to type on my computer. 
Instead, try saying: ​I can’t imagine how you feel, but help me try to understand.

I’ve found the people who ask these kinds of questions are often trying to get me to buy a product that they sell. Sometimes, they’re genuinely trying to help though, and while I appreciate the thought, it’s not helpful. I spend a lot of my time researching new treatments and possibilities as well as discussing things with my doctors. If there’s something out there that I haven’t ​tried, it’s for a reason. 
Instead, try saying: ​I can tell that you’re working hard to research the best options for your illness.

"You need to get out and do more activities with your kids."
Mom guilt on its own is bad enough (am I doing too little for my kids? Am I a good enough mom?), but when you throw in a chronic illness, it intensifies significantly. Why would you want to add to that? Do you really think that I wouldn’t ​love​ to be able to do more with my kids? Having to tell my kids no because of my chronic illness absolutely tears me up inside. 
Instead, try saying:​ You’re doing a good job as a mom. Can I take the kids with me on our next trip to the park? 

"You did it last week, why can’t you do it today?" 
Honey, I did something ​an hour ago​ that I can’t do right now. Every day with a chronic illness is different and sometimes, it narrows down to being different every hour. My body is very unpredictable, and I hate that more than anyone else. 
Instead, try saying: ​Are you up to getting coffee with me today? If not, I understand and in that case, can I bring you a coffee? 

"At least it’s not cancer!" 
Oh. my. word. Comparing illnesses doesn’t help anyone. Ever. We all have trials to work through and each one is huge to the person dealing with it. For example, when I was still relatively healthy and had one relatively healthy baby, I thought that was incredibly hard (Example: my baby has an ear infection...this is the worst thing ever!). Now I’m basically disabled and have four kids with varying special needs who will experience more pain and medical issues as they get older. ​This is hard.​ But that doesn’t negate how hard it was with just one child. Your perspective changes as your situation does. 
Instead, try saying:​ I know it’s hard right now, but I’m here for you.

"You look and sound happy on social media so how bad can it be?" 
Just because I’m in almost constant pain doesn’t mean that I’m never happy. If I waited until I felt good before I was happy, I would be miserable all the time and that’s not a good way to deal with this. Also, I only share things that I want to share on social media which means that you’re probably just seeing my best moments. Would you really want to be friends with me if I did nothing but complain and exude negativity? 
Instead, try saying: ​I’m glad to see that you were able to enjoy your day yesterday!

"You only have your illness because you think you do." 
Are you insinuating that I’m faking it and it’s all in my head or are you telling me to be more positive so my chronic illness will just go away? Either way, ​don’t say this​. Seriously. I know people think I’m faking it. I’m going to let you in on a little secret. I ​am​ faking it. However, I’m actually faking being as well as I am. I work hard and push through a lot of pain so I can lead as normal a life as possible. I’ve had so many people tell me that I’m faking it that I even doubt myself sometimes. Do you have any idea how crushing that is? Thinking positively can definitely have a good effect on mental and physical well-being, but no matter how positively I think, it won’t heal my Ehlers Danlos Syndrome. I will still have pain, and I will still have defective genes. 
Instead, try saying: ​I believe you. Tell me more about your chronic illness. 

"I could never do what you do." 
I didn’t think I could ever do this either. I used to read stories about people in situations similar to my current one and thank God that I didn’t have to deal with that because I ​knew ​I didn’t have it in me. However, that shows a lack of faith in God, and it turns out that you do what you have to do to survive when you literally don’t have any other choice, and you do it with God’s help. Also, please stop painting me to be this amazing brave person who can power through something that most people couldn’t. Sometimes, I’m barely hanging on and hearing something like this can make me feel like even more of a failure. If you only knew what goes on inside my head and behind the scenes, you would know that I struggle just like everyone else. 
Instead, try saying: ​How can I pray for you today?

"If you pray and believe, God will heal you." 
Please don’t turn God into a vending machine. That’s not how He works. I can pray and believe all I want, but if God says no or wait, I am not going to be able to change His answer. Instead, I need to focus on what He is trying to teach me through my chronic illness. Do you remember Paul in the Bible? Remember how he had a “thorn in the flesh” (II Corinthians 12:7) and prayed for God to remove it from him? God didn’t. Instead, He allowed Paul to continue to go through his trial, knowing that it would strengthen his relationship with Christ. 
Instead, try saying: ​How can I pray for you today? 

"I wish I could stay home with my kids and not have to work." 
When I was 17, I had to quit my first job thanks to my health. I cried for days because I was so crushed that I had to give up a job I loved and because quitting made the reality of my health hit me like a load of bricks. Right now, I’m a substitute at the local library and have to turn down a lot of hours because, after about an hour or two on a job that isn’t even that physically taxing, I’m stumbling around like I’m drunk because my legs aren’t working right anymore and practically gasping in pain. I love, love, love working at the library and had originally hoped to be able to go up to full-time when my kids get older, but now, I’m facing the realization that I will not be able to do that. Not being able to work makes me feel worthless at times. 
Instead, try saying: ​Tell me about your hobbies.

"It must be nice to be able to park in the handicapped spots." 
You can have my handicapped placard if you take my disability to go along with it. I’m actually too scared most of the time to use my placard when I need it because people can be mean, judgmental, and forget that not all disabilities are visible. 
Instead, try saying: ​Can I help you carry your bag to your car? 

"You go to the doctor too much." 
Yeah, I agree. I actually hate going to the doctor, but unfortunately, it’s necessary for my health. If I stop going, bad things will happen.
Instead, try saying:​ Would you like me to come along with you to the doctor sometime so we can have coffee afterward?

"God will never give you more than you can handle."  
You will go through more than you can handle, but God can handle it if you let Him. I can’t​ handle this, and you saying something like that to me makes me feel like I must be a terrible Christian. 
Instead, try saying:​ How can I pray for you?

What not to say to a parent with a chronic illness (and what to say instead) :

The absolute best thing you can say to someone with a chronic illness is “I believe you.” Seriously. What do ​you ​do when someone just isn’t getting the hint about their insensitive words? Well, you actually have several options to choose from and you can use one or all of them, sometimes on the same person. Oftentimes, I go with a combination of the following.

Ignore them. 
When someone says something hurtful to me about my chronic illness, sometimes, I will just smile and then change the subject. Unfortunately, some people just don’t get the hint so you may have to move on to another strategy if this one doesn’t work.

Realize when it’s not worth your energy to argue. 
We all know a few people like this. They just won’t let it go and there’s pretty much no chance of them ever changing their mind on anything. When you run across someone like that, acknowledge to yourself that arguing with them is not going to help and it will more than likely end up using some of your precious energy. Answer their comment or question with something along the lines of, “I know that we don’t agree on this, so I think it would be best if we talked about something else.” Then change the subject and if they bring it up again, use one of the other strategies to deal with them.

Set clear boundaries. 
It’s okay to tell someone that you do not want to talk about your chronic illness with them and that it’s off-limits. Once you’ve let them know that, stick to it because just like a toddler, if you give in once, they’ll think it’s okay to do it forever. Alternatively, you could also send them a link to a website that you know had reputable information about your specific chronic illness and tell them that you would love to discuss their suggestions and thoughts about your condition after ​ they’ve read about it. 

Know when it’s time to cut ties.
If someone is intentionally hurtful or just won’t let up with the insensitive comments and questions, it may be time to cut ties or at least limit interactions. You can unfollow them on social media (sometimes you can do this without deleting them from your friends list/followers so they won’t even know), cut down on social interactions, “miss” their phone calls (caller ID really does come in handy sometimes!), etc.

Look for the intention behind the words. 
This one is hard, but sometimes it’s the best way to avoid hard feelings on either side. Maybe your friend makes insensitive comments about your chronic illness but does it with good intentions. Maybe they truly care and want to help. If that’s the case, gently explain to them that while you appreciate the sentiment, saying and asking things like that is actually hurtful and doesn’t help. Be open and honest with them about ways that they can help encourage you. 

What tips do you have for dealing with insensitive or rude comments?

Thursday, August 6, 2020

Look What I Found on Etsy!

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

I was browsing Etsy the other day, looking for a mask for Hubby to wear to church now that it's a statewide mandate for us when I ran across a mask that looked familiar. It took me a second before I realized that it was made with one of the fabrics I designed for my Spoonflower shop. How cool is that?!? 
That led me to search Etsy for other masks made with my fabric designs and I came up with quite a few. Here are some of my favorites.
This reversible mask actually features TWO of my designs, this one and this one. You can find it at Sew Crazy Vermont.

This mask features my Aqua I Love You ASL fabric and has a pocket for a filter. You can find it at Masks by Momma Ounn.

This mask has a pocket for a filter and a flexible nose piece and is made from my Tossed I Love You's fabric. You can find it at KraftieAF.

This kids' mask is made in a pleated style and uses my Tossed I Love You's fabric. It's also available in a women's size. You can find it at Mlholm2009

This fitted mask has super soft elastic earloops and is made with my I Love You Sign Language fabric. You can find it at BrightlyK.

This pleated mask comes in kids' or adult sizes and is made with my Autism Awareness fabric. You can find it at Little Dutch Acres

This mask comes with filters, a nose wire, adjustable head tie and more and is made with my Jesus Loves Me fabric. You can find it at Premium Cotton Masks.

These pleated masks have a filter and a nose wire and are made with my Jesus Loves Me fabric. You can find them at Mask Me Over

This mask has a unique 3D pattern to give you more breathing room and is made with my Psalm 23 fabric. You can find it at It's So Easy Inc

Which mask is your favorite? If you stop by my fabric shop, I'd love to hear what you think of my designs!

Saturday, August 1, 2020

20+ Must-Have Apps for Christians

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

I used to scoff at people who pulled their smartphones out in church to use a digital Bible instead of using a physical Bible. I mean, what they were using wasn't a real Bible, right?

20+ Must Have Apps for Christians

But then, I got a smartphone, downloaded the Tecarta Bible app and I was hooked. I fell in love with the way I can quickly and easily check cross-references, see maps and notes on a specific passage, compare translations, and take long notes instead of trying to cram them into the margins of my burgundy leather bound Bible.

Now, I have four Bible apps on my phone, a prayer app, a Bible search app, and 14 sermon/biblical study apps from various preachers and churches. They're all free although some of them do have in-app purchase options. I'm going to share them with you along with what I like about each one and how I use it.

Tecarta Bible-Available on Android and IOS
My favorite features:
   >Easily move between commentaries and versions.
   >Highlight specific words or phrases.
   >Has a notes section for sermon or general notes.
   >View lists of all highlights, margin notes, and bookmarks.
Youversion-Available on Android and IOS
My favorite features:
   >Connect with friends in the app
   >Share prayer requests with your friends and pray for theirs
   >Has thousands of Bible studies available that you can do on your own or with friends
Blue Letter Bible-Available on Android and IOS
My favorite features:
   >See a side by side view of two Bible versions at once
   >Has a variety of translations and languages
   >View the original text of any verse and what specific words mean.

Spurgeon Bible Commentary-Available on Android
My favorite features:
   >The commentary is built into the Bible so you can easily read it with the appropriate verses
Prayer Mate-Available on Android and IOS
My favorite features:
   >Make lists of your prayer requests (family, church, school, friends, etc.) and the app will automatically select several items from each of your lists for you to pray each day
   >Add details and update prayer requests on "index cards"
   >Makes it easy to keep track of prayers and remember to pray for them

Bible Search! from Tecarta-Available on Android and IOS
My favorite features:
   >Easy to find a Bible verse based on key words or a phrase
   >Searches within different translations all at once to find what you're looking for

Unshackled-Available on Android and IOS
My favorite features:
   >Listen to a wide variety of Unshackled dramatic radio programs that have aired over the last 20 years

Ligonier-Available on Android and IOS
My favorite features:
   >Listen to sermons, read blog posts and watch videos
   >Read the Bible in the app or follow the reading plan
   >The Live Answers page is available for questions 24 hours a day Monday through Saturday

OnePlace-Available on Android and IOS
My favorite features:
   >Listen to sermons from a variety of preachers and programs
   >Save your favorite ministers or programs to your favorites list so you can easily find them again

Genesis Apologetics-Available on Android and IOS
My favorite features:
   >Has lots of biblically based answers for common questions about evolution vs. creation
   >Great for kids and adults

Tony Evans Sermons-Available on Android and IOS
My favorite features:
   >A new sermon is listed each day
   >Choose from a variety of sermons to listen to and videos to watch

Tony Evans Motivation Moments-Available on Android and IOS
My favorite features:
   >Browse among tons of quick one-minute audio clips organized by topic

Tony Evans Training Center-Available on Android and IOS
My favorite features:
   >Take a variety of courses on Christian living (many are free)
   >Connect with others and track your progress in the courses
Cross Examined-Available on Android and IOS
My favorite features:
   >Has a daily podcast to listen to
   >Quick Answers section is categorized by topic so you can easily find what you're looking for

Sermon Audio-Available on Android and IOS
My favorite features:
   >Has thousands of sermons from various ministers available to listen to

The Village-Available on Android and IOS
My favorite features:
   >Listen to a variety of sermons and podcasts from Pastor Matt Chandler
   >Take notes within the app

Paul Washer Sermons-Available on Android
My favorite features:
   >Listen to a variety of sermons organized by category from Pastor Paul Washer

Moody Radio-Available on Android and IOS
My favorite features:
   >Listen to live radio or play previous podcasts and radio programs

Revive Our Hearts-Available on Android and IOS
My favorite features:
   >Listen to a variety of podcasts and read blog posts
   >Take notes within the app

Focus on the Family-Available on Android and IOS
My favorite features:
   >Listen to some of the most recent Adventures in Odyssey broadcasts for free
   >Listen to a variety of podcasts

Twelve-Available on Android and IOS
My Favorite features:
   >Connect with your friends and form small groups of up to 12 for Bible study accountability
   >Discuss your Bible study with your friends
   >Helps you stay consistent and in the Bible

Drybar Comedy-Available on Android and IOS
My favorite features: 
   >Watch clean comedy videos from a variety of stand-up comedians 

20+ must-have apps for Christians:


I hope you find some of these useful for growing your relationship with God like I have. I'd love to hear what apps you use as well!