Guest Post: Chiari’s Plan God’s Plan

To end Chiari awareness month, I have a few devotional thoughts on Chiari from some of my fellow moms. This was written by Jani. Not very long after Luke’s surgery, I was introduced to her at our church. Her daughter had just got the diagnosis. This is how she explains:

September is Chiari Malformation awareness month. Last September I would have not been able to tell you what that meant or why it was important. I saw no Facebook friends lit up with purple, no posts, no ribbons. This year, the word awareness takes on a whole new meaning for myself and my family. My 7 year old daughter Willow has been suffering from horrible headaches for years, headaches we were told were migraines. She has suffered from horrible insomnia, trouble swallowing, and random dizzy spells. When the constant calls from school got to be overwhelming, we finally demanded more answers about her headaches.
IMG_2905What followed was a whirlwind of experiences we never thought we’d have. Earlier this year we were told that she has Chiari Malformation. Huh? What in the world is that? Probably not anything to worry about we were told, but we need to have another MRI. That MRI turned into a consult with a surgeon, which turned into an appointment for my baby girl to have brain surgery. What you should know about me is that I am a planner. I like things to be predictable, orderly, and solution-focused. Suddenly I was tossed into the realm of the unknown; fearful, scared, and wondering how in the world we had gotten here. I would like to tell you that my first instinct was to rely on God, but it wasn’t. I went to the dark side pretty quickly, focused on the fear and worried for my girl. I am blessed to belong to a church where I serve with wonderful people, one of whom happened to have a son going through this very thing. We were put in contact with each other, and to say I probably annoyed the heck out of her with my questions was probably an understatement. It was that first point of connection, one of the more clear moments where I heard God say, “I’ve got you.”
I have learned that God made Willow a fighter, a fighter who had absolute trust that God would make her better. What I have learned is that all my planning means nothing compared to His plans. His points of connection are miraculous. The way He put me in touch with the people I needed, the way my daughter was a zombie in the hospital until her big brother showed up and she lit up with the biggest smile, the only smile, I’d seen in days. The way that He orchestrated us to live here, with the best medical attention we could get. I was slow in getting there, but this journey has shown me that I have to rely fully on God, because it really is all in His hands. In Jeremiah 29:11 it says, “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.” When facing a silent disorder with no cure, plans for a hope and a future are the most comforting thing to have. I cannot wait to live out the way He has worked in our family, because I see the seeds of it sprouting even now.
Today she is 9 weeks post-surgery, with only one headache to speak of since then, no numbness in her limbs, and a Willow chiari 3happiness I wish I could put adequately to words. How blessed we are to see her discover life without the pain she had been dealing with for so long. What does purple mean for me? Sure it means Chiari and this thing we will always be aware of. But it also means hope and a future, and connections that only God can make. It means power and renewed faith. Purple is the color of royalty, so I suppose it’s a good thing I have a direct line to the King.

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What Are You Doing With Your Little?

Photo taken at Chatlos Memorial Chapel.

Photo taken at Chatlos Memorial Chapel.

We have all gone through seasons of change; seasons of fear; seasons of testing; seasons of forgiveness; seasons of miracles. My emotions have been all over the place since going through so much with my son as well as other things that have popped up in my life. I have had to take a step back from writing and other things, pray, and regroup. I have been feeling God pulling me to venture out of my comfort zone and serve Him in different ways than I have in the past, particularly speaking publicly about some amazing truths and scriptures He has revealed to me.

My husband and I heard Pastor Jimmy Evans speak a few months ago about obedience and serving God. He explained that we go through certain trials in our lives so God can see if He can trust us; to see if we are ready for bigger things. He explained it this way, “God will not give you more than you can rule over. God lets you make big mistakes in a little room before He opens the door to a bigger room.” I have always heard sermons and teachings on placing my trust in God but never really asked myself, “can God trust me?”

Matthew 25:21 “The master was full of praise. ‘Well done, my good and faithful servant. You have been faithful in handling this small amount, so now I will give you many more responsibilities. Let’s celebrate together!’ “

Luke 16:10 “If you are faithful in little things, you will be faithful in large ones. But if you are dishonest in little things, you won’t be honest with greater responsibilities.

So lately I have been asking myself what kind of a servant am I and how am I growing and learning to better be the woman He created me to be? God has given me a message but am I willing to take that step of faith to share it? After giving it some thought, I called my dad. He pastors a local church and talked with him about speaking on Sunday morning. He was reluctant to do that but offered me Wednesday night. It took me back at first. Thoughts like “Lord, you’ve given me an amazing message and I am bursting to share it! Why not let me share it to a larger audience like Sunday morning? Why not open that door?”

Then I remembered the sermon and the scriptures about God giving you rule over little before He allows you to rule over big. My heart was convicted. I called my dad back and told him how honored I would be to share and speak at the Wednesday night service. So tomorrow night, I am taking that step of faith into what may seem like to some as the little room. I am going to trust Him and if only one person shows up, I will pour out my heart to that one person in obedience to the Father. Praying with each small act of my obedience to go in the direction He is guiding my heart, he will open another door. The more I am faithful;  the more I lean into God, the more He will trust me and give me more opportunities to serve Him.

So my question is what are you doing with your little as you are waiting for your big?Blog little

Dear Discouraged Stepmom

Dear Stepmom BlogI was thinking today how I have been a stepmom for nearly seven years. In some ways it has seemed that time has flown by and in other ways, it has been a slow meticulous process of blending our family. I have received so many blessings and moments filled with happy memories, sweet unexpected hugs, deep intimate connection with my husband, and wonderfully precious family time with our children.

However, I must admit that their have been times when I have also felt discouraged in this process. In one of my previous post for Family Fusion Community, I wrote “Stepmoms do not have an easy job. They are caught somewhere in the middle of all the emotion and tend to receive the brunt of negativity and spitefulness because they are not a biological parent. Often, they are a dumping ground for all the hurt, frustration, anger, confusion, and sadness that comes with divorce from all involved including the biological parents, children, and even extended families.”  (You can read the entire post here: http://familyfusioncommunity.com/2014/01/30/the-other-mothers/)

Stepmoms can also feel invisible, as if no one sees them for who they really are. They feel unseen for their choice to love anyway, for their good intentions, and for their kind hearts. Or, their love and kindness is twisted and turned into negativity through bad mouthing or false accusations. Does any of this sound familiar to you?

During my prayer time several months ago, I came across a very important prominent family in the bible that was not only blended, but dysfunctional as well. I am talking about Abraham. A little background of this story, found in Genesis 16 and Genesis 21, is Sarah, because she had not become pregnant, gave her servant Hagar to her husband Abraham so that he might have children. Hagar became pregnant and gave birth to a son named Ishmael. Thirteen years later, Sarah became pregnant and gave birth to Isaac. So now if you haven’t caught on, this is a blended family (maybe not traditional) but blended just the same. I look at Hagar as like a stepmom because she has no legal rights and is completely at the mercy of Abraham and Sarah. And feeling so overwhelmed, Hagar runs away.

There are some verses that create a picture of this blended family, especially in chapter 21 where I found 3 very interesting facts. First, the two sons had conflict between each other. Second, there was conflict between the two moms, and third, the father was caught in the middle. And I will be writing on each of these. However, I am only focusing on Hagar’s story to say this directly to you, discouraged Stepmom. God hears you, He hears the deep cries of your heart and most importantly God sees you. You are not invisible.

Genesis 16:9-11; Genesis 16:13-14

Then the angel of the Lord told her, “Go back to your mistress and submit to her.” 10 The angel added, “I will increase your descendants so much that they will be too numerous to count.”

11 The angel of the Lord also said to her: “You are now pregnant and you will give birth to a son. You shall name him Ishmael,  for the Lord has HEARD of your misery.

13 She gave this name to the Lord who spoke to her: “You are the God who sees me,” for she said, “I have now seen the One who sees me.” 14 That is why the well was called Beer Lahai Roi; it is still there, between Kadesh and Bered.”

What a beautiful picture of a God whose love is so compassionate that He would seek out a servant girl and let her know He hears her; He sees her and is going to bless her. She is so deeply moved that she gives God the name, “El Roi” which translates “The God Who sees me.” I encourage you dear Stepmom;  the next time you are feeling discouraged, disheartened, and overlooked to call out the name of God. Because those verses have been such a comfort to me and during those times of discouragement I have prayed and called the name of God “El Roi” because I am not discounted. I am not invisible. I am loved. I am blessed. God hears. God lovingly and graciously sees me!

Dear Stepmom Blog

An Open Letter To My 16 Year Old Daughter

DSC_2000My daughter is very active in youth leadership at our church. I am proud of her for serving and getting involved. I see her growing and cultivating her talent of compassion; learning to place others before herself. This past weekend, she attended a conference and the parents were asked to write a letter of encouragement or prayer to be given to them during one of their devotional sessions. She gave me permission to publish the letter I wrote to her in hopes that it will help others.

       To My Sweet Girl,

There is a poem in one of those books I love to read by Grace Livingston Hill that I want to share with you:

“Charge not yourself with the weight of a year, child of the Master, faithful and dear.

Choose not the cross for the coming week, for that is more than He bids you seek.

Bend not your arms for tomorrow’s load, just leave that to your gracious God.

Daily ONLY, He says to thee, ‘Take up thy cross and follow me’.”

It means to focus on serving Him today and no more. We all have our own cross to bear; have our own personal struggles. God gives you daily what you need. “Charge not yourself with the weight of a year” means don’t take on a year’s worth of burdens, don’t take on the hard times, the “what ifs” and the “what might happens” that are later on down the road. Live for Him for today. Live in this moment. Serve Him with all your heart today. Don’t pick up the cross of the coming months. Today is hard enough, so live and be just for today.

2 Kings 25:30 (ESV) “and for his allowance, a regular allowance was given him by the king, according to his daily needs, as long as he lived.” See, you are a child of the King. But, you are so much like me, beautiful girl, that you tend to either focus on looking back at the mistakes you’ve made in the past or the mistakes or bad things that may come in the future.

So that’s why I am telling you this with all the love I have in my heart:  Let go of the past and do not try and take up your cross (your burdens) of tomorrow. Just live, love, serve, and embrace right now, today.

                                                                                                I love you beyond words,

                                                                                                                Mom

How Do You Tell Your Son He’s Going to Have Brain Surgery Without Exploding Into a Million Pieces?

Luke meeting his baby cousin last year.

Luke meeting his baby cousin last year.

The house is quiet, really quiet. Every one is sleeping in on this rainy Saturday morning….everyone except me. I don’t feel like I’ve really slept since October. Since my son, Luke (I affectionately call him buddy) was diagnosed with chiari malformation. Words like “incurable”, “brain surgery”, and “severe pain” seem to be bouncing around as soon as my head hits the pillow, along with slight shock and disbelief. Wow! How did we get here?

I keep thinking back to the day when we learned Luke was going to have brain surgery….I got the call while Luke and I were riding home from another appointment. I remember we were singing and laughing when the neurosurgeon’s office called and told me that his test showed a significant flow reduction and we needed to come in and get him scheduled for decompression surgery.
My mind began to reel. My breath caught in my throat. I guess the shock of it all kept me from bursting into tears. I robotically went through the motions of scheduling the appointment but my knuckles were white from gripping the steering wheel so tightly. I turned to my handsome little man next to me. How do you tell your child that they need brain surgery without exploding into a million pieces? I sent a prayer for words of wisdom and began to calmly explain to him what was happening.

“Luke, do you remember how we have prayed and prayed that the surgeon would have God’s wisdom in knowing what is best for you? Well, God has answered our prayers Buddy.” He looked at me briefly as I saw understanding creep into his blue eyes. “He thinks I need surgery, right?” “Yes buddy.” He immediately burst into tears as that understanding was replaced by fear. “Luke, it’s ok to be scared and worried and cry. You might see mommy cry too, but we are also going to thank God for answering our prayers. It may not be the answer we want but I know He is going to take care of you and guide that surgeon’s hand. We are going to get you through it one step at a time and then we are going to praise and thank God and give Him the glory for answering our prayers and being with you through it all.” He slowly nodded as I watched him brush the back of his hand over his eyes trying to fight back the fear and the tears.

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When we got home, instead of turning on the TV, he ran straight for his room. Trailing behind him, I walked in to see him drop to his knees by his bed, clasping his hands in prayer crying. He was saying something over and over but I couldn’t understand so I went closer and sat next to him. “Thank you. Thank you.” He was whispering between gasps and tears. He then reached around to the back of his head with his small hands and began to pray and beg God to give him strength to make it through. It was one of the most precious and heartbreaking moments I have ever known. I let the tears fall quietly down my face as I prayed beside him and let him pour out his heart to his Heavenly Father. Oh!! The strength and faith in that little boy was astounding! I briefly thought of the verse in Matthew 18:4, “So anyone who becomes as humble as this little child is the greatest in the Kingdom of Heaven.

I gently pulled him up and into my arms. Drawing all my strength I said, “Luke, like I said before it’s ok to be scared and cry, but let’s wait until it’s time. You are not having surgery today or next week. We are going to enjoy the holidays and spending time together with family and we are going to pray until then. He has been with us so far and He will continue with us every step of the way. Let’s worry when the time comes.”

Well that time is now fast approaching and in a week my little guy will be going in for surgery. I am having a hard time with it. As a Christian mother I know that God is honestly truly with us. I have never felt His presence more than I have since all of this started; felt a peace in my spirit that I can’t explain. (Philippians 4:7 “Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.”)

But as Luke’s mommy, I am heartsick and terrified. My worries and fear seem to sit on my shoulder and threaten to drown me. I honestly do not know what I would do if I didn’t have the Lord giving me strength. My emotions are all over the place. And my sweet little Luke;  I can’t hug him enough. I can’t kiss his head enough. I can’t thank God enough for giving me the unspeakable honor of being that little guy’s mom. Of having the honor of comforting him, holding him and guiding him through this life.

There is that peace again, stirring up in soul, creeping up into my spirit and touching every corner of my heart. I will allow God to continue to guide me because He is allowing me to guide Luke. And I whisper just like he did between gasps and tears, “Thank you! Thank you!”

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When You are So Overwhelmed, There are No Words

rock blog photo 2I haven’t posted in a while. My emotions have been so overwhelming that I literally have had no words to describe them. Which I’m pretty sure is bad for a writer. Words, for me, have always been an emotional outlet; expressing and processing my feelings; a way to scream while remaining silent. Lately I’ve been drowning in fear, worry, shock, determination, and focus with no way to get an extra breath except…….One.

Romans 8:26 “And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words.” (NLT)

It is so much comfort to me that as a child of God, I don’t have to find the words. I don’t have to articulate the storm inside my heart, the raging in my mind. My Heavenly Father knows.

He is my comforter. 2 Corinthians 1:3 “All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort.”

He is my strength and my help. Psalms 28:7 “The LORD is my strength and shield. I trust him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving.”

He is my hope. Psalms 71:5 “O Lord, you alone are my hope. I’ve trusted you, O LORD, from childhood.”

He is my rock. 1 Samuel 2:2 “No one is holy like the Lord! There is no one besides you; there is no Rock like our God.”

My previous post was about my son. The tests results have come in and we met with the neurosurgeon last week and my little guy will be having decompression brain surgery at the end of January for his chiari malformation. As I have said before, I am so grateful that this has been found while he is young and has not had to suffer, but I have also, as a mom grieved for my son. My heart has ached for what he is facing. I have cried out of fear of the horrible spiral of “what ifs” that could happen.

I don’t want him to go through this. I am scared about so many things but it has been during this time that I have felt God’s closeness more than ever before; His presence touching every aspect of our life; our Comforter, our Strength, our Help, our Hope, our Rock.

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