Parenting: My Personal Struggle with Fear

October 19, 2017October 19, 2017Leave a comment

When my daughter, my oldest child, was in preschool through elementary school, she was so spunky and smart with just enough stubbornness to call it determination mixed in. I truly felt she would conquer the world, a neatly packaged redheaded blue-eyed force to be reckoned with. When the middle school years hit, she changed. The bullying started and she became fearful and worried more and more.

Many nights I’ve knelt by their bed and prayed over both my son and my daughter, but I’ve spent a lot of time worried for my sweet sensitive girl. Her dad and I divorced when she was three. I remarried when she was five and he left me two years later. When she was sixteen, my youngest son at age ten was diagnosed with an incurable brain abnormality and underwent brain surgery to help restore flow between his brain and spine. To say our whole world flipped upside down that year would be an understatement.

I have been remarried now for nearly ten years to a good Christian man and stepfather. I’m a stepmom to a very determined handsome high school freshman. My son, now thirteen is doing very well and surgery, although scary, has been an answered prayer. We have worked very hard to blend our family and move forward.

My daughter is a sophomore in college now. She is still spunky and very smart but her struggle is real. She wrestles with who she is versus who she thinks she should be. She worries that she is not good enough to succeed.

I have been reading a book by Rebecca Gregoire Lindenbach called Why I Didn’t Rebel. In it Rebecca shares her own personal encouraging story of how she made it through the difficult teen years while staying true to her values, faith, and family.

The other day I was reading her chapter on Expectations where she wrote: “Looking at all these stories, I saw a pattern emerging: families who expected their kids to rebel were scared, and families who didn’t expect their kids to rebel had a lot of faith in their children.” It was like gaining admittance into a secret room where parents are typically not allowed and God used her words to illuminate some shadowed corners of my soul.

It revealed to me that unconsciously I’ve been parenting from a place of fear rooted in guilt. The more she struggles the more fearful I become because in the innermost part of my heart, I worry that my failures will cause her to rebel and ultimately fail. I know this is not what God wants for my family or my daughter.

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. 2 Timothy 2:7

Parenting is hard and divorce and remarriage is messy. Blending a family only makes it more complicated. Why I Didn’t Rebel is like a breath of fresh air. Drawing me out, helping to replace my pessimism with perspective straight from the proverbial green grass on the other side. It tackles issues parents face today while giving candid insight on balancing them with healthy boundaries and expectations that actually work.

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Thank you Rebecca for allowing God to use you to write this book to rekindle hope in parents who may be struggling with discouragement. My girl may just conquer the world after all.

Guest Post: A Golden Rule for Divorced Parents

June 15, 2017Leave a comment

I first heard about Tim Lemire and his efforts a few months ago when he contacted me about an article about divorced dads I had published on The Huffington Post. You can read that here.

For the past year, Tim has been working to push legislators and the General Assembly in his home state of Rhode Island to adopt an initiative to require divorce and coparenting education for divorcing parents in the family court system. This, no doubt, is a steep uphill battle and I applaud his brave efforts to bring about precious positive change for the sake of the children.

He has written a very thoughtful piece about coparenting and I wanted to share it!

Here is what Tim has to say….

We grown-ups are aware that from time to time, we imitate our parents — and not always voluntarily.

If we are also parents, we want our own children to imitate us … but only in good ways. We do our best, therefore, to model good behavior for them.

If we are divorced parents, we can do this by repeating to ourselves the following: The way I treat my former spouse is how I want my children to treat me.

That doesn’t mean that on your ex’s next birthday, you need to send flowers or a candygram. It doesn’t mean you need to erase your mind’s every negative thought about your ex because that’s what you want your kids to do with you.

Here’s what it does mean:

When you badmouth your ex, you teach your children, “It’s OK to call a parent names and to talk about them critically and negatively.”
When your children hear you assigning bad motives to your ex, you teach your children to be cynical and suspicious of a parent.
When you use Family Court not to resolve disagreements constructively but rather to bully, intimidate, and bankrupt your ex, you are teaching your children that lawsuits are how to resolve disagreements with a parent.
When you shut your ex out of your children’s lives — not because your ex poses any threat to your children’s safety, but because you wish to punish your ex — you are teaching your kids, “It’s perfectly OK to cut a parent out of your life.
If you do any or all of the above, don’t be surprised one day at how critical, cold of heart, or distant your children have become toward you.”

You are the one who taught them.

Children learn from both parents, which is why it’s important for both members of a divorced couple to be civil, respectful, fair, and cooperative.

This golden rule may be the one thing you and your ex can agree on.

It may not be easy. It may, in fact, be quite hard. But how you handle challenging situations is also something your children are to looking to you, to your example, to learn from.

If your children become adults who are compassionate and kind, cooperative and collaborative, patient and understanding, would you like them to say they learned all that from you — or from anyone but you?

“Children have never been very good at listening to their elders, but they have never failed to imitate them.” — James Baldwin, Nobody Knows My Name: More Notes from a Native Son (1961)

TIM LEMIRE is a writer and visual artist based in Providence, Rhode Island. He is currently working to reform family law in his home state. You can hear more from him on This I Believe.

A Special Place-Teen Room Makeovers For Our Kids

September 26, 2016Leave a comment

When my husband and I got married back in 2008, we were living in the house I had been in since 1998. It was a small 1000 sq ft home with one bathroom and when we combined our families, the five of us were a bit crowded. We both wanted to move and start fresh and after a lot of hard work and nearly a year of searching and trying to sell my house, we moved into what we hope will be our forever home in July of 2010.

I love our house! Growing up as a preacher’s kid, we moved a lot to plant or rebuild churches. I never got to put down roots, so it was my dream to give my children what I didn’t have, raising them in a nice suburban country neighborhood where they could ride their bikes and have other kids to play with and we have been so blessed. In fact, our yard has typically become the gathering place for the neighborhood boys.

We have slowly made our house a home. Over the summer, we decided to surprise and redo all of our children’s bedrooms while they were gone on summer vacation with their other parent! Keep in mind, I am not one of those brilliant decorating bloggers whose home looks like the completed project at the end of a HGTV episode. However, I wanted to share what we did.

Our daughter, Meredith, was the first to go on vacation with her dad and his family. She is starting her senior year and is also duel enrolled in college. She spends a lot of time doing homework and studying in her room. Her walls were already a pale aqua and comforter set was yellow and gray.

I got my inspiration and ideas for the canopy from Cottage Instincts. We took the bed that I had since childhood and painted it black to match her tall dresser. I found a black TV stand on Craigslist for $10 and made a cushion for it. We turned her desk in to a dressing table (she never used it, preferring to study on her bed), added a little wall art and a lamp and we were done (at least for now).

Our youngest son was next to go on summer vacation with his dad. I have written about Luke often and his brain condition, Chiari Malformation. Because of his condition as well as the fact that I homeschool him, he spends a lot of time in his room. He is really into college basketball and his favorite team is NC State, so we decided to give him a red, black and white Wolfpack room.

I want to give a BIG shout out to my amazing husband. He made the trophy case, painted Luke’s old desk, and the stripes on the walls. The inspiration for the trophy case came from Shanty 2 Chic. We changed out the antique brass handles for modern ones on his long dresser and framed his posters and certificates/awards.

Our oldest son was the last to go on vacation with his mom. He will be turning 14 soon and loves duck camo. The boys once shared a room and we hung their beds from the ceiling to give them more floor space and he wanted to keep his bed that way. We painted three of his walls a camo khaki color and the 4th wall, a deep burnt orange.

We took my old dresser that went with the bed frame from Meredith’s room, gave it a fresh coat of black paint and added new drawer pulls. We covered his bed and corner shelf with duck blind netting. We framed some awards and photos that were special to him. I found this poem, tweaked it and took one of his favorite photos from our trip to the mountains, had it printed and framed.

However, the biggest highlight of his room was totally inspired by this awesome blog post on Make Them Wonder. Our wonderful neighbors, Brande and Lee, have a fantastic vinyl decal business L & B Graphic and can make anything! (In fact they made this scripture Joshua 24:15 that has been on the wall in our family room since 2010.) I sent her a picture of the shadow duck hunter and they turned out perfectly. We added reed fencing and LED lights.

I have read so much about making room in your heart and life for your blended family but I believe it is equally important to make a special place for them in the home. A place, inspired by who they are, where they can relax and be themselves. My husband and I felt that there have been some major changes going on in each of their lives for the past couple of years. We wanted to make a space for them that was stable, comfortable no matter what was going on outside of our home in their lives, a true haven.

It doesn’t have to be a complete makeover like we did. Not everyone has enough space to give each of their kids their own room but you can make a special area for them with pillows, special bedding, pictures, etc… The most special, most wonderful part was the look on their precious faces when they got back and walked into their new rooms for the first time. PRICELESS!!

What Huffington Post Left Out

April 25, 2016April 25, 2016Leave a comment

Weeks ago, I was pleasantly surprised when the editor of Huffington Post Divorce contacted me and asked if they could feature our family for their blended family Friday feature story. I had recently had two pieces published on the Huff Post blog, but this was truly an honor. It was a rare chance to share who we really are with so many. I know that it is not a Christian news outlet. However, I am who I am and in the interview I did not hide how much our faith has been the center of our family.

When the email finally landed in my inbox to let me know they were running our feature this past Friday, I could barely sit still for days. All morning on the big day, I kept checking the site, waiting for it to go live. When it did, mouth dry, I nervously clicked on the link. (You can read the feature here.)

As I began to read, confusion began to swirl and then disappointment settled in my spirit. Although it had several elements of what I had said, sadly, every part about our faith, the essence of who we really are as a family and how we deal with stress and difficulties was edited out completely. (Particularly question #5). Also in vowing to spread awareness, the things I shared about my son’s Chiari had been cut as well. But I want others to know us, see God in us, so I am posting my original interview.

Our family journey has been filled with change, disappointments, victories, worry and joy. Our faith has been there through it all. Divorce and re-marriage is still an issue where we are looked down on and judged by some within the Christian community. I have a passion to reach out and spiritually encourage other moms like me who may feel judged or shamed so I started my blog www.familiesunbroken.com and it’s kind of evolved from there. As a writer, it only takes one moment, one thought, one written idea to change someone’s life. I don’t have all the answers but I share my heart and hope that it resonates with other families like ours.

1. How many family members do you have? Ages?

My daughter is 17 years old, my son is 12 this month and Daniel’s son is 13 years old. And we have a furbaby named Brady that just turned 5 years old that is the most spoiled in the house.

2. How long have you and your spouse been together?
Daniel and I have been together nearly 9 years and will be celebrating our 8th wedding anniversary in a few weeks.

3. What are some of the biggest challenges of blended family life?
I think it is the same as in many blended families. It is trying to find balance between home and work while coordinating schedules, parenting time, school and other events.
What’s one specific problem you’ve faced time and time again and how have you sought to address it?
Daniel is the “every other weekend and one night a week” parent so we have to cram family time as well as one on one parenting time into a very limited space. Because of this, he feels he never sees his son enough. What we have found that works is we deliberately set aside one on one quality time with him and we plan it before his parenting weekend. Sometimes it’s going to breakfast on Saturday mornings or mountain biking on Sunday afternoons, etc… As a family, we try to simply do activities to make memories. We do a lot of day trips. I think I have a talent for finding activities to do or places to visit that are out of the ordinary (lol). Daniel tells me all the time how much he loves me for that. His son appreciates that we respect the short time he has with his dad and it has helped us to appreciate the family time we do have together and the memories we are able to make.

4. What’s the best thing about being part of a blended family?
I feel that it’s learning to love each other coming in from the outside. More of an effort goes into learning our children’s individual uniqueness and as we have grown more as a family, the effect is that we love and appreciate each other all the more for that effort.5. How do you deal with stress in your household?
We have a very strong faith that is rooted in grace, acceptance and forgiveness. During times of stress in our home we have tried to teach and practice extending grace to each other. We try to accept each other, that we are not the same and each of us has our own thoughts and feelings, as well as reactions. We are not robots. We then try to forgive each other, learn from it and move forward.
As far as handling the internal and emotional stress that comes with being blended, prayer helps us a lot. Daniel works out at the gym several times a week. He calls it his therapy, and I love to write.

6. What makes you proudest of your family?
What makes me most proud of our family are delicious ordinary moments. It’s those moments when we are not a blended family, we are just family. Moments where we are at the dinner table eating together, laughing hysterically at inside jokes and sharing about our day. Those moments where we are riding together in the car singing and dancing to the radio, playing at the park, or camped out on the living room floor watching a movie. It is those moments where we are not a blended family around the dinner table, we are just a family around the dinner table. We are not a blended family having fun, we are just a family having fun. I really am proud to say over the years we have shared countless moments like that.

7. What advice do you have for other blended families who feel like a peaceful family dynamic is out of reach? The best advice I can give is only what has seemed to work for us with a lot of time and patience. First, throw your preconceived ideas out the window. It will never be what you expect. Accept that there will be tears, yelling, confusion, and adjustment. Second, make your marriage a priority. That doesn’t mean your children are less, but because your children deserve more, and don’t need to go through another divorce. The kids will learn to appreciate the stability of a healthy family home. Finally, learn to be selfless not selfish. Focus on making memories instead of what you can’t control.

I also want to share just over a year ago, my son was diagnosed with Chiari Malformation and underwent brain decompression surgery. It was an emotional eye-opening experience for both his father and me, but from that came better communication, patience and appreciation for each other as his parents. It affected every one in both families. It helped to solidify in our hearts that at the end of the day, what truly is important, is each other.

I would like to sincerely thank Huffington Post for everything, especially the wonderful opportunity to share with so many that otherwise would not be possible to reach. I want to say thank you for including a link to my blog so that I could write this post and share what was left out. Allow me to share more of a part of who I am, who we are.

But most of all, I want to thank God for opportunities to allow me to share Him and how he truly has helped make something new out of our brokenness.

Hebrews 11:6 ^“But without faith it is impossible to please Him, for he who comes to God must believe that He is, and that He is a rewarder of those who diligently seek Him.”

You may have started out broken but God heals and restores to unbroken.

Dear Hurting Stepmom: Today is a Good Day

February 25, 2016February 25, 20162 Comments

I know that feeling and that look. The excitement and hope that once lit up your face has slowly, overtime, been replaced with disappointment mixed with frustration and possibly a side of confusion. Oh you try to hide it behind a “Every Thing is Awesome” smile and though most people who have absolutely no clue what it’s like to be married into a blended family won’t notice, I do because I too have been there.

I know the things you say to yourself repeatedly. “This is so much harder than I thought!” “Why am I viewed as the bad guy?” Why can’t they see me for who I truly am?” “I have always been good with children so why can’t I connect with my stepkids?” “Why does the man I love so much get so defensive when I try to talk to him?” And the vicious thought spiral goes on and on.

However, today is a good day.

Today is a good day to extend grace to yourself. You put so much effort at making this family work and extending grace to everyone else. Do you not think that you deserve to extend that same grace to yourself? Stop beating yourself up for how you handled the latest fiasco or the issues that have gone before that. Embrace your value and contribution in your stepfamily and give yourself a break.

Today is a good day to forgive. After learning to extend grace to yourself then take it to the next level and forgive. I’m not talking about forgiving your spouse, the kids, or the ex. That is a topic for another day. Forgive yourself.I’m sure you have heard the expression that forgiveness is not for the other person, it’s for you and it is, especially when you forgive yourself. It frees you from the “if” trap. If I had just said this or if I had just done that then things would be so much better. Truly forgiving yourself frees you from the “what ifs” and “what has been” and embraces the beauty of “what can be”.
Today is a good day to be you. I tell my teenage daughter all the time that all you can do is what you can do. You cannot change others. You cannot make the ex like you. You cannot make your husband or kids fit into the family box you think they should be in.You still have the power, however, to leave your mark on your blended family.

Instead of focusing on the issues or all the wrongs, make a memory instead. Go to the park and swing with them. Find a new trail and hike with them. Teach them how to play the old school games you played as a child like “Duck duck goose” and “Yahtzee”. Look up fun science experiments to do with them. Make oobleck or flubber. Pray with them. Read to them. Make their favorite food for dinner.

The possibilities are literally endless. By extending grace, forgiving yourself, and embracing who you are you can truly be a positive powerful force in your stepfamily. You have the power to build a legacy, a stepmom legacy one memory at a time.

Today is a good day to start.

Sincerely,
A mom who is working on her own family legacy

Hey Stepmom, You Are Not Alone!

February 23, 2016Leave a comment

We all need people. That need for fellowship with another has been placed there by the Creator since our beginning. For me, that has always been true. In fact, after my second divorce (yes you read that right), I remember praying in earnest and begging God to please take that desire away from me.

It wasn’t that I just wanted to be IN a relationship, I craved relationship. I felt so lonely. I wanted companionship and friendship, and to be able to connect and talk with others who understood. And satan was there to remind me constantly of how unworthy I was, of how I had failed miserably in not one but two marriages, and how I had dragged two children through the whole gauntlet of my messed up life. One day I confided in a church leader and he reminded me that “It’s not good for man to be alone.” He told me to stop asking for something that God Himself had placed in my heart.

It helped me realize that it was okay for me to long for relationship and companionship but to seek only those that would bring me closer to Him, not farther away. And I have been blessed to have a husband who does just that. But I have continued to long for friendship and connection with other moms like me that are trying to navigate the difficulties of a blended family.

The SOS retreat I attended was held at the beautiful Winshape Retreat center.

Recently, God gave me the opportunity to connect and begin lasting friendships with many wonderful ladies who all share a common bond. We are all stepmoms. I did so by attending a Sisterhood of Stepmoms weekend retreat. I honestly was worried at first that I would not find others who were in the same situation but I could not have been more wrong. There were moms of all situations such as blendermoms, childless stepmoms, stepmoms because they had married a widower, etc… We spent the weekend being ministered to, prayed over, and listening to messages of hope, encouragement and wisdom.

If loneliness and yearning for fellowship is something that you have struggled with or are currently struggling with, you are not alone! There is a sisterhood out there. Sisters that know what stepfamily daily life is like. Sisters who are riding the roller coaster of hills and valleys. Sisters who understand the sheer joy from a stepchild’s smile and the deep hurt of being unappreciated or misunderstood.

^“Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble.” Ecclesiastes 4:9-10

I encourage you to check out the links to the Sisterhood of Stepmoms and sign up for their upcoming SOS retreat this fall!

Hands Are For Holding

February 4, 2016Leave a comment

Our hands are never empty if we are holding on to each other.

One year ago yesterday my son’s life changed after having decompression brain surgery for Chiari malformation. Well that is not exactly true. My life changed as well with so many blessings sprinkled with set backs and difficulties. One year ago hardly seems real. It feels like it really was just yesterday.

Just yesterday that I sat by his bed, holding his boyish hand in mine, while a heaviness of

Holding my son’s hand after brain surgery a year ago.

worry and the faith that God the Father would take care of him wrestled for first place in my heart. Thinking over how God had given me the honor of being his mom and the privilege of being there for so many moments in his life from the very first time he wrapped his tiny hand around my finger.

Then there really was yesterday. Yesterday I was actually sitting next to a hospital bed with the heaviness of worry once again wrestling with my faith. This time, it was my sweet dad. And I found myself holding his hand in mine thinking over how God blessed me with the privilege of being his daughter and how he has been there for me since

Holding my dad’s yesterday before surgery.

the very first time I wrapped my tiny hand around his finger.

And it made me realize that in my family our hands are never empty because we hold onto each other. And in them I have learned how to encourage, support, and walk beside those that I love so much. Most importantly of all, I learned to place my whole life in the hand of the Lord Jesus.

It doesn’t matter what your family looks like or whether it’s considered normal, whether it’s blended or not, whether you have the word “step” in front of mom or not. What matters is holding onto each other. Making memories every chance you get and deciding that no matter what you’ll never let go.

Thank you daddy for teaching me how to hold on to the gift of family with one hand and our Heavenly Father with the other.

A Mom’s Prayer For The New Year

January 1, 2016January 1, 2016Leave a comment

2 Kings 25:29-30

^{29 “}So Jehoiachin put off his prison garments. And every day of his life he dined regularly at the king’s table, ³⁰and for his allowance, a regular allowance was given him by the king, according to his daily needs, as long as he lived.”

Last year we celebrated the rolling in of a new year with our children. We laughed. We drank sparkling grape juice (both red and white). We did sparklers and fireworks in our back yard. And when midnight came, we knelt in our family room and prayed together. And God blessed us so much this past year. It was not without many difficult times. It was not without many happy overflowing moments either. new blog pic Our celebration was much the same and completely different! It was just my husband and I together. We got delicious take out from Outback. Snuggled and watched a movie. Made a few fireworks of our own. But when midnight came, we knelt in our family room and prayed together. We prayed for each other. We prayed for our three wonderful children, calling each by name. And we prayed and claimed the verses that I shared, for God to give us just what we need each and every day. Simple. Powerful. Believing.

This is my prayer for you and me in this new year. May it be Simple. May it be Powerful. May it be filled with Believing. Believing that the Lord Jesus gives us just what we need for each new day!

Are You Having A Moment?

December 29, 2015December 30, 2015Leave a comment

This Christmas was filled with lots of moments for our blended family, wonderful boring moments and I couldn’t be happier with that. Yes you read that right. I did say boring and I did say happy. This Christmas was very mellow. We carried out our yearly traditions. Made memories and visited a few new places together to make new ones. We even managed to sneak in a “pajama day” at the request of my sweet stepson just a few days before Christmas. We celebrated with family and shared lots of laughter. The darkness, the worry cloud that sat on my shoulder last year was gone. So like I said, boring, and grateful for it.

Luke Christmas Last year, as many know, just before Christmas, we learned that our youngest son was going to have brain surgery for Chiari Malformation at the first of the year. So the holidays were consumed with big moments, such as staying strong and not letting him see how utterly scared I was. Moments like hiding how worried I was that this might, just might, be our last Christmas with Luke. Lost in thought of how there is no cure and what if something goes wrong during the surgery and he isn’t the same. Moments while among all the holiday gift shopping, I was searching for pajamas to fit a ten year old that buttoned down the front. And when finally finding some complete with a star wars theme, a moment when I could barely see my way to the cashier for the tears as I imagined when he would have to wear them while having to deal with doctors, nurses, medications, pain, and anxiety. However, in those moments surrounded by all three kids, wonderful family, our amazing church and supportive friends and community God chose last Christmas to be one of the best we have ever had!

And from last Christmas to this Christmas God has felt so close. His perfect peace was truly a key to surviving all the moments we faced. Life has been rapid, busy for me this year. Writing, homeschooling, volunteering and Bible study classes have consumed me. In fact I’ve realized that the only thing I haven’t done much of is take a moment for me. blog post 3

It got me to thinking how moms like me give so much to every one else. A few months ago I had the privilege of writing a book endorsement for a fellow “blendermom”, Kristie Carpenter, and it was published in her latest devotional book Blended Mom Moments.

It is filled with weekly scriptural devotions interspersed with stories and nuggets of wisdom. I am really looking forward to diving into this book and spending some time with God. He really wants to spend time with you, minister to you, shepherd you and speak to your heart. I’m reminded of the words of the song What Do I Know Of Holy, by Addison Road, “I tried to hear from Heaven but I talked the whole time…” Sometimes we just need to stop talking in order to hear God speak to us.

Psalm 46:10a, “Be still, and know that I am God.”

This new year I encourage you to stop. Put your feet up, savor a nice cup of coffee and have a moment. Have a moment of quiet, a moment of prayer, a moment of renewal. It will strengthen you during life’s big moments!

Isaiah 26:3, “You will keep in perfect peace all who trust in You, all whose thoughts are fixed on You!”

*You can purchase a copy of “Blended Mom Moments” Signed Copy Here and Amazon here. I have also had the privilege of getting to know Tara Furman, founder of Knowing God Ministries. I purchased her “Intimacy with God” which truly changed my prayer time years ago. Click the link and go to resources to learn more.

Why Purple Sometimes Makes Me Cry

September 15, 2015September 15, 20156 Comments

September is Chiari Malformation awareness month. To be honest, I didn’t know there was such a month until my social media began to fill up with purple. So I began to look up quotes and things that I could post on my sites in order to bring awareness and as I was pondering this issue a flood of emotion began to squeeze my throat as I really reflected on just what Chiari has taught me.

Chiari Malformation is what my then ten year old son, Luke was diagnosed with just one year ago. Chiari turned our world upside down. Chiari was a game changer. Chiari taught me just how strong a mother I really am. Chiari taught me about the warrior heart my little boy has inside of him. Chiari has shown me just how much the Lord Jesus loves not only my son but how much He loves me.

The color purple typically stands for invisible illnesses and conditions that can be debilitating or even fatal with no cure. Invisible illness meaning a person painfully hears the words often uttered “he/she/you don’t look sick” or show outward signs of the battle raging inside their body.

Purple. Invisible illness. What no one sees. Like when my son was diagnosed and suddenly reality got very real. Invisible illness. Purple. As my spirit began to fill with fear as I read all the possible neurological problems that can come with this monster. Night time was the worst for me. Purple. Invisible illness as in no one knowing how I would tuck Luke in, hug him tight and every time I turned out the light and walked out of his room I felt I was leaving a dark presence hovering over him named Chiari. Invisible illness and purple as in no one seeing from the time he was diagnosed until his surgery, night after night I would set my alarm every few hours to get up to check on him because Chiari can block the CSF flow and not send the signal to tell my sweet little boy to breath or not tell his heart to beat. Words can’t describe how my feet, so burdened with fear, would walk me up to his bed heart pounding for what I might find.

But here is the twist…Luke, after the initial fearful reaction to learning of his diagnosis and impending brain surgery slept with a peace that I had never seen before. (You can read my post here: How to tell your son he’s going to have brain surgery without exploding into a million pieces.)

Because for him what I saw as purple, invisible illness, a monster named Chiari; he saw God. God turned our world upside down. God was a game changer. God showed him just how strong a mother he has. God showed him the warrior heart he has inside of him. God has shown him just how much He loves him and how much He loves me and has done it all through Chiari.

Now the color purple has taken on a whole new meaning to me and yes it causes me to cry. Not because he has Chiari but because it reminds me of the warrior spirit of faith and the power of prayer that has grown from Chiari; grown in my family, in my son, in me. Purple reminds me of the absolute power, the incomprehensible grace and God’s perfect plan that although is not always understandable but will always make us all the better for it.

Psalm 138:3 and 138:8 “In the day when I cried out, You answered me, And made me bold with strength in my soul.” “The Lord will perfect that which concerns me; Your mercy, O Lord, endures forever; Do not forsake the works of Your hands.”

My son Luke feels better than he has ever felt since his surgery. It breaks my heart how he must have suffered before being diagnosed, when we were told he was just dehydrated. Please help share and spread awareness about Arnold Chiari Malformation. Someone you may know and love could be suffering with this and not know. For more information on Chiari and how to help: