It Takes a Village

June27

 

I thank my God every time I remember you.

Philippians 1:3

As I sit and think upon the number of supporters our family has, I am both humbled and amazed! I never would have thought that I would have to rely upon such a village of people to help me provide for my daughter. I am so grateful for each person who has sacrificed time, finances, and energy to invest in our family – more specifically our little girl, Emmalee!

Our family has been able to give Emmalee so many blessings because of your generosity. We have been able to help her attend a camp that is specific for children with cerebral palsy. Because of the speciality of the camp, the cost is astronomical! With the help of so many being willing to give, we have made it possible for her to attend two years in a row!!!

Last year, her progress was ignited through attending this camp. We have seen incredible strengthening of her neck, using and reaching with her arms, her trunk control improve, and her ability to walk in a gait trainer have been some of the successes of this last year. Some of her newer goals are for her to learn to sit up on her own, standing up from a lying position, and standing herself up while holding a ladder or chair for support. The progression of these goals could only be made possible by her attending this five hours a day, for five day camp. Can’t wait to see what she achieves this next year as she is working hard currently in her second year of camp.

Another opportunity that our ‘village’ has helped us with is the purchase of a mobility van! An incredible opportunity came our way, when we weren’t even looking! Right before we were leaving for camp, I noticed a posted 3×5 card with the information of a mobility van for sale at one of Emmalee’s therapy offices. I didn’t think anything of it, till I told Wayne about it and he wanted to know more information. The sale information, seemed too good to be true! So he called and touched base with the owner and learned more about the van, went to take a look and saw that is was a great fit for us.

Unfortunately, it was at a cost that we just couldn’t afford, due to our one salary budget. Especially, since we were headed to camp at the same time. So, we shared with a friend and they suggested we try to raise the funds as well. We were hesitant at first because many of the same people we asked for help with camp funds are the same who would see this van fundraiser too. We asked others outside of our regular family and friends about helping us, and to our surprise many did! We were doing well to knock down some of that price, but we still had a long way to go to get the price down to an affordable loan for us to manage. We felt compelled to share with our usual group of people, at least for them to share with their friends, if they couldn’t afford to give. It was difficult for us to put it out there, but if God is calling anyone to help, then who are we to interfere?!? So, we trusted that we would not create any offense, but only be open to God’s provision!

In our obedience, we were able to raise almost $11,000 of the $17,000 that we needed! God is GOOD!!!!! We only had to borrow $4,000 from our bank for the remainder of the cost! This was such an incredible blessing, and can’t say enough about how incredibly humbled and blessed we are to have such a tremendous village of people corral around us to help provide for our daughter!

Today, Tuesday, June 27, 2017, we will receive our new van and be able to transport Emmalee to therapies, school and anywhere else with ease. This gift will alleviate the stress and strain of lifting and loading Emmalee and her chair in and out of the current van we have. Our little girl will be able to ride with style and comfort! We are excited and completely in awe of God and His provision in our lives! We couldn’t do all that we do without Him, and you – our village! Thank you from the bottom of our hearts for your giving, sacrifice andobedience to God! We are incredibly blessed beyond measure!

Being Held

June15

There is a time everyday, when I reach out to hold my daughter: Not because I love her and want to be close to her, but because she is going through something I can’t control or help her through. All I can do is hold her and comfort her during the times when her body is shaking, her eyes are rolling, her breath becomes labored, and her face is turning red. As I reach for her to provide comfort, my heart sinks each time and yet my gut fills with rage. I hate when these things happen. I hate them for her. I hate that I can’t predict when they are coming or stop them from happening. I hate how they ruin her day, ruin our day together, ruin those sweet smiles and giggles that we were sharing just moments before. Sadness fills my spirit, so I cry and lose a little bit of hope each time. Defeat sets in and my whole demeanor changes as she emerges out of it, and all I can do is hold her. Hold her to comfort her and remind her that she is loved. I love her through each and every one of these times, and watch her emerge with confusion, exhaustion, and weakness. All I can do is hold her.

Emmalee has been diagnosed with LGS (Lennox Gestaut Syndrome) which is a complicated and rare form of epilepsy, that is not easily controlled with medications. We received this diagnosis about two years ago, after we have tried over 5 different medications to control her seizures. We learned that as she has grown, her seizure types have changed and they affect her whole brain. They call them generalized seizures, which occur in addition to the focal seizures that she was diagnosed with at two months of age.

Epilepsy is an unpredictable enemy that you feel in a constant battle with. You exert yourself each day holding onto hope that today will be different, be calm, seizure free. Only to be reminded that it’s not something that can be defeated or overcome by fighting against it.  We can however be prepared for it, be ready for whatever the ‘enemy’ throws at us. We can face each battle with hope, love, wisdom, and strength that doesn’t come from us, but from the one who is greater than we.

I share this from my heart and experiences, and hope that it can bring comfort and a renewed vision of the battle before us:

Each day I gear up with HOPE – Putting away the thoughts of unlikely circumstances, for example:  “Will today be the day we have a seizure free day?”

I pray – “Lord, I put my hope and trust in you that today will be a good day! I ask that today you will bring healing and peace to Emmalee’s body.”

“Now faith is the confidence in what we hope for and assurance about what we do not see.”-Hebrews 11:1

Putting our hope in the Lord, guarantees a day that we will be taken care of. A day that we put our faith and trust in Him, is a day that He also puts His faith in trust in us. Meaning He will give us what we need when we need it most. He will not leave us in those dark times, but will help see us through each seizure.

Each day I gear up with LOVE – Will I be able to provide what she needs when she needs it? Love – Can I be the mom she needs in her times of pain, discomfort, and confusion? Love – Am I enough Lord, to face one more day with what ever it holds? “Lord, fill me with your abundant love; help me to love in her times of need. Lord, help me to react with love and compassion and be the mother you have called me to be.”

Each day I gear up with WISDOM – How do I need to respond to this seizure? Wisdom –  Should I use the emergency meds or let her ride it out? Wisdom – Do I need to call the doctor? Wisdom – Was that a similar seizure to the rest or different? “Lord, help me to be the caregiver I need to be. Lord, give me your wisdom to know what to do in the midst of a seizure. Give me the wisdom to know what she can and cannot do for the continuation of the day. Give me your wisdom to learn her patterns, triggers, and needs.”

Each day I gear up with STRENGTH – Can I do this today? Strength – Am I strong enough to watch her go through it again? Strength – Do I have enough in me to give her what she needs? “Lord, today I need your strength. Strength to get through today, my daily bread or dose of strength to make it. I need your endurance, motivation, and drive to continue providing, caring for, and teaching her the things she needs to know about you, about life, and about her own strength. Lord, I can’t but you can!”

On a day that we were battling seizure after seizure, I felt so emotionally drained and defeated. I felt that I am not good enough, or strong enough to face this kind of life. I was at an all time low, and didn’t know what to do or even how to pray. I was at a loss and really just wanted to hide or run away from it all. My shirt was stained with tears, snot, and drool, because my brokenness was evident and real. I was uncontrollably sad, depressed even and didn’t know how to move forward with my day. I looked down at my daughter’s face and saw her leaning so deep into my chest, resting against me, and being held by her mother. My arms embraced her and brought her comfort, peace, and love as I held her.

The picture of this moment resonates in my mind, and reminds me of how God wants to do the same for us.  He wants us to lean deep into Him, to find comfort, peace, and love and just be held.

 

 

You Are Not Alone!

October15

As I awake in the morning, before my feet hit the floor, I take a moment to listen…the silence, the calm, and the peace that I hear at the moment is comforting. It helps me to know that all is well, at least for that moment in time. I take time to breathe in deep and let it sink in, I have been given a new day. Today…what will today be like?

As I begin to face the day, I imagine what it would be like to wake up to a little face looking at me, I imagine a voice saying, “Wake up! Mommy, I’m hungry.” or just the idea of my princess finding her way into my bed to snuggle up to me just cause she missed me throughout the night or had a bad dream and needed comfort.

The peace first thing in the morning and the thoughts of ‘what if’ bring joy to my mind and heart. Then, as I rise to get up, a hard reality hits me! I don’t have peace and quiet, my husband just turned off the monitor. I won’t have those sweet thoughts become a reality. My daughter is in her bed waiting for me to be her strength, to be her arms and legs to move her and help her face the day. She needs every ounce of my being to help her today, and my heart breaks all over again. I grieve each day the loss of those thoughts, the loss of that kind of joy, the loss of hope for complete healing. I grieve…

Grief is a natural response to loss. It’s the emotional suffering you feel when something or someone you love is taken away. (www.helpguide.org)

Emotional suffering is a daily obstacle of a parent who has a child with special needs. Suffering comes from a deep pain. Deep pain caused from watching your child suffer from doctor’s poking and prodding; test after test revealing no answers; therapy sessions ending in defeat;  seeking help and not getting what you feel is best; and wanting SO much more for you child, but they just can’t. It hurts, it cuts deep within your soul, it stings, it burns, it slowly kills your spirit.

The loss you experience each day, weighs heavy on your heart. It bombards your thoughts and creates a person within you that you don’t recognize. You become sad, tired, and worn. Your joy is zapped, and your hope is stripped away. You lose sight of what could be, or even what is. You begin to focus on the loss which squelches all of the positive, the things you need to be grateful for. Your reality just sucks!

The guilt follow the loss, and it beats you up from the inside out. You feel the pangs from guilt, which makes you question, “Did I do something to cause this?” “Am I doing enough?” “What if I do more, will she be healed?” “Why didn’t I eat better or exercise more?” On and on the questions and guilt ring in your ears and head,  constantly beating and pounding down on you, making you feel that much more pain.

Then blame sets in, you begin to take blame or blame others. For instance, you blame your spouse. When blame sets in, you put up a boundary between you and him that pulls you apart. You begin to fight and argue over things that don’t even matter, or things that do matter but don’t help the current situation. Blame creates division between you and your relationships. You become alone, because ‘no one understands what it could be like, so I don’t need them’. ‘I’m strong enough to do this on my own!’

Again, your reality sucks, your in pain, grieving the loss of the ‘what if’…now what? Where do I go from here…cause I can’t keep living like this.

I share all of this not to get sympathy, but to share with those who don’t understand what it’s like to be a parent of a child with special needs, but also to let those who are parents that they are not alone on this journey. I know what it is like to have thoughts of depression, grief, pain, and loneliness.  YOU ARE NOT ALONE!!!

The first thing I had to accept and understand is that YOU ARE NOT ALONE! I have a God, a Savior, who was not surprised by Emmalee’s diagnosis. He knew that she would face her challenges, and medical complications the moment He weaved her in my womb.

Jeremiah 1:5 “Before I formed you in the womb I knew you, before you were born I set you apart;”

He also knew me before I was conceived, He knew what I was going to be capable of. He knew I would be a mother to a special child that will be set apart from the norm. He knows me and He knows her. She is not a surprise to Him, nor should she be a surprise to me. I have to press on being reminded of that each day.

YOU ARE NOT ALONE in your grief, Jesus knows your heart and knows your pain. He suffered for you and your child. He suffers with you, when you are sad and heart broken. His arms are stretched wide for you to embrace and take refuge in Him, when you need Him most. We can not know what each day brings, but we can be prepared to face it with Him.

Deuteronomy 31:6 “Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”

He is with us, and will never leave us on this journey. He is walking beside us, and He will provide others to walk with us too. Be open to allow others to help and support you when they can. We can not do it alone, we must take refuge in Him, and in others He places in our lives.

YOU ARE NOT TO BLAME! You did nothing wrong, and there is nothing you can do to change your child’s circumstance. No matter how hard you work, plan, clean, or organize your schedule; only He has knows the outcome.

Jeremiah 29:11 “‘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  future.'”

Rest in that, and allow your spirit to rest in Him. That relieves the burden from me, that He is in control and it doesn’t rest upon me to make her better. Rather, I need to trust in His plans to make me better, because of what He has taught me through my daughter. There IS a reason for all that we suffer through.

YOU CAN FIND JOY! Be grateful…even in the little things. When our focus turns from the loss, grief, blame, and pain; we can begin to focus on the positive. Don’t let the pain consume you! Wake up each morning making the conscious choice to focus on the victories – even starting with, “Thank you Jesus for the new day!” Then move on from there, allowing your mind to be consumed by gratitude! It takes effort and it isn’t easy all the time, but when we allow the ‘scales’ of pain, loss, and blame to fall away from our eyes, we can then find joy and enjoy our journey each day.

Psalm 107:1 “Give thanks to the Lord, for he is good; his love endures forever.”

2 Corinthians 9:15 “Thanks be to God for his indescribable gift.”

A gift is what our children are, they are given to us to love, care for and enjoy. If we are consumed by the negative, we will lose out on the good.

One day my husband came home to me at my wits end, I was crying and overwhelmed – almost crippled by the pain, loss, and grief of what I could not change. The lack of control or ability to make it better had consumed me and I was literally drowning in my emotions. He pulled me aside and told me to breathe, and to stop trying to change what I have no control over. He also stated, “If you keep trying to change what is, you’ll miss out on the here and now. You need to stop pushing yourself, because of your guilt, blame, and grief and begin enjoying our daughter for who she is.” I pondered on this and realized that I was focused on the ‘what if’ rather than the ‘what is’. I began to change my way of thinking, planning, and doing. Rather than filling every moment with therapy play, learning, and activity that aggravated her and made me frustrated in the process: I focused on being with her, learning her moods and what she was up for, taking cues from her on what she felt like doing. This helped me learn to enjoy her and enjoy being with her each day. I wasn’t frustrated over a half-completed schedule, or undone activity sheets; I was being in the moment with her. Learning to be grateful for who she is and the little things she would accomplish each day. Her smile became the light of my day, her laughter became my joy, and her wiggles became my highlight!

Philippians 4:13 “I can do all things through Christ who strengthens me.”

I can, YOU can, WE can do this! We can continue to walk this journey…knowing that we are not alone. We are walking a journey that is difficult, painful, and full of loss; however we are not alone. We have a God that is with us, every moment, and provides what we need when we need it. He helps us to change our perspective, to accept ‘what is’ and still hope for ‘what could be’. Don’t give up on your dreams, but be grateful for the moments you receive today.

Cherish the gift of today, for tomorrow is not promised. Love, laugh, and ENJOY your child today, as I am loving, laughing, and enjoying my Emmalee each and every day.

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Leaving a Legacy

August23

Recently a friend of my passed away. She battled a long, hard war against ovarian cancer and in the end I would not say that she lost, but rather she conquered and won. She won the greatest gift anyone could receive…life! 

It is written in James 1: 12 – Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.

It is evident that she loved her Lord.  She trusted Him with her life, but not only her life, also the life of her three year old son. Her walk and love for God reflected in her beautiful smile, her warm heart toward others, and how her gentleness impressed upon your heart the feeling of “friend”. The evidence of her passion and faith in God, exuded from her and is what drew me to her and her family’s side in the tragic loss of her life as we knew her. Her loss broke my heart, but also made me celebrate her victory in Jesus at the same time. It was conflicting feelings, yet I felt a peace over her homecoming because I knew that she left a legacy that made an impact in the lives she encountered every day.

She impacted me.  We were not close friend, but we knew each other in elementary school through high school. Thanks to Facebook, we caught up with each other a couple of years ago and I followed her journey. I prayed for her through the tough times, and was greatly impacted by how she continued to face life with the same smile, warmth, and passion.

As I attended her funeral and saw the many who gathered to support the family, share loving stories, or pay their respects – my mind began to evaluate my life and question: “Am I living a life that will leave a legacy? Am I impacting those that I encounter every day with the love, warmth, and a passion that exudes Christ’s love?”

These thoughts have haunted my mind for a few weeks, and I knew there was something that God wanted to teach me through this circumstance. I began to pray and search. I began to ask, and seek what God would want me to change, add, or leave alone. I pondered how I could live this life ‘better’, what could I do that would impact others, and leave a lasting impression upon the hearts of those I encounter.

All I kept hearing was, “write”. I told God, “I am not a writer! I don’t know what to write about! How do I even start? Is this really going to leave an impact? I don’t have time to do this!” Of course there was more and more arguing back and forth about this. I truly feel that my writing isn’t what most would want to read…on and on I bantered with God.

Out of the blue,  God (my heavenly Father) used my dad (earthly father) to question me. He decided to read some of my blog entries and then asked me, ” Have you ever considered writing a book?” I was speechless, blubbering and not knowing how to respond to his question. All I could say was, “Yeah, I’ve thought of it, but I don’t even know where to start.”

Many times God impresses upon our hearts to dream and do. We get in the way of what He is calling us to do, by arguing or doubting ourselves and abilities. God would not call us to do, if He is not going to help us to achieve!

I may not write and publish a book, but I am being obedient by beginning what He has called me to do. I am writing, and I hope to continue. Not in hopes that I may impact others and leave a legacy, but that I may share about who God is and what He has done in and through me. I want to impress upon your hearts the love that He has for you and share the impact that He has made in my life.

However, I consider my life worth nothing to me; my only aim is to finish the race and complete the task the Lord Jesus has given me – the task of testifying to the good news of God’s grace. – Acts 20:24

I challenge you that if God is pressing upon your heart to step out in faith to do something that is scary, different, or out of your comfort zone to join me and obey! Let’s live a life that will leave a legacy for Christ!

Leave a comment below and share what you are called to do. I would love to pray with you as you begin your journey. Take the first step by sharing with us!

 

 

**Dedicated to the the family and friends of Natalie D. Hernandez.

 

 

#Irunforthosewhocan’t!

June14

“But as for you, be strong and do not give up, for your work will be rewarded.”

2 Chronicles 15:7

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It all began with one, and then another who inspired me to do what I thought was impossible…RUN! Thanks to Brad for taking the time in the month of March – which is Children with Medical/Special Needs Awareness Month taking on the challenge of running and praying in a child’s name each week. He chose Emmalee the first week out and truly touched my heart: First that he thought of this brilliant idea and secondly that he thought of my little girl! The thought and prayers that he poured out and the time that he spent running for her was priceless! I was truly humbled and touched beyond words, but I was also inspired! God began planting a seed in my heart.

The same month, maybe a week after Brad announced that he was doing this for Emmalee, we joined in a Family Fun Run to benefit our county’s children with special needs. It was a great time of connecting with other families! There were options for participants – a 5K or the Family Fun (1 mile) Run. We chose the 1 mile ‘stroll’ with a little running! Then a good friend and big time Emmalee fan, Marion, ran the 5K for Emmalee! Again, the seed was planted. My heart began to yearn for the same ability to run, but not just run for fun, but to run for those who can not!

Emmalee has cerebral palsy among her many diagnosis and can not walk, never mind run! But I know that in my heart, if she could she would be running just like any other three year old. The more I thought of this, I questioned myself saying,  “Why can’t I run for her”? I had no excuse good enough to say no!

So, I recruited the best running partner and friend, Diana, who is also Emmalee’s “buddy” for church and we began our long process of training the very next week. We began our training on March 11, beginning with 6 – 1 minute runs with 1.5 minute walks in between. We thought we would never make it, but we kept at it! I have to tell you the goal each time was to run the length of time without stopping and passing out. Our goals began to grow – 5 minutes, 8 minutes, 10 minutes, etc. Each time got a little easier and there were times when it wasn’t so easy!

In the beginning, for about a month and a half, we didn’t even have a race selected! We were running without the end goal in mind, but we kept at it and knew the right race would appear at the right time! Sure enough, as we felt we were ready to begin searching for 5Ks we came across the Bay Kids 5K to benefit Everyday Blessings. In our hearts we run for those who can’t, so we committed to running races that benefit children and/or organizations that benefit children and their care/needs! Reading about Everyday Blessings (check out their website: http://www.everydayblessingsinc.org ) and what they do to help foster children in transition, we were committed to run this very race. So, we stepped up our game and trained even harder making sure we got at least three runs in each week and even trained while we were on vacations, and weekends away! We were committed!!!

I have never felt so challenged to put faith into action! I am not a runner, never liked it, and never desired to do it, until this moment in my life. I faced a completely a new realization of fully relying on God! As the time approached and my mind began to doubt, I received the verse stated at the top of the post – 2 Chronicles 15:7 from another good friend, Amy! She was sweet and kind enough to have bracelets made for us with this verse imprinted on them and the statement, “I Run 4 Emmalee” on them! It was the perfect gift for the perfect moment! God knew what He was doing! 😉

This morning we geared up at 4:45 a.m. (yes, that was A.M.!!!) and headed down to St. Petersburg for our first 5K! We were excited and nervous all at the same time. We both wore our Wonder Woman t-shirts and felt confident and ready…until we got locked out of the car! Yes, oh yes! I closed the door with the keys inside and we were locked out!!! Can you believe it! However, we had our phones and our racing  numbers, and then we began to stress out and become frustrated!!! Why? Why did this have to happen to us at this moment? Then the verse that we both were wearing around our wrists to remind us of all that we have done to get to this moment came to my mind. I read it out loud and then began to pray! It was the most peaceful prayer I think I have ever felt! It completely changed our outlook and mood, because in about 30 minutes we were going to be racing and what just happened with the car does not matter for that moment! (Just so you know, we did call Roadside Assistance and they showed up just as we were starting off) We are committed and have prepared for this race: NOTHING was going to stand in our way!

During the race we faced many obstacles, from walkers, to strollers, to children, but we managed to get through the crowd and make our way down the path to begin a steady run. It was hot and humid and that caught up to us about 2 miles in and we both were slowed to a walking pace for only about 1 minute and then we pressed on! I remember during the race singing the songs my husband selected and put together for me, praying for strength, and thinking of the verse on my wrist and Emmalee! These were the thoughts that pulled me through! I had faith, I had strength, I had endurance, and I had perseverance! These blessings only came from God, through the committed time and effort we put forth in our training! I saw faith in action in every step I took and as I crossed the finish line, I threw my hands up, praising my God for being right there with me! Thank you for the reward of accomplishing my first race, but most importantly for giving Emmalee some milage behind her – for today Emmalee ran 3.1 miles!!!

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Made to Crave – Day 3

January22

Give ear to my words, O Lord, consider my sighing. Listen to my cry for help, my King and my God, for to you I pray. I lay my requests before you and wait in expectation.” – Psalm 5:1-3

Today, is the third day of Made to Crave (written by Lysa TerKeurst) and we were assigned to read chapter 2, “Replacing My Cravings”.  This was tough to read and reflect upon, and raised some really good questions/thoughts to ponder over. For example:

Is it possible we love and rely on food more than we love and rely upon God?

Uhg!!! That’s the sound of me being punched in the gut! I have NEVER thought of this, but I make sure that I get at least my three meals in a day, sometimes a snack, too! BUT do I remember to get my time in with God? Not always. That is really not putting my priorities in the right order. My spiritual nourishment is just as, if not more, important than my physical nourishment. Therefore, I must change my way of thinking and prioritize my time appropriately! On top of that…the book mentions this:

I relied on food more than I relied on God. I craved food more than I craved God. Food was my comfort. Food was my reward. Food was my joy. Food was what I turned to in times of stress, sadness, and even in times of happiness.

Uh- huh! I’m nodding in agreement! Wow, this is me spot on! As I am sure most women feel this way. Food is our immediate fix to the problems we are facing. BUT it doesn’t change anything, but our weight, moods, and the way we feel. Only God can change or help us in our times of need. How many times have you celebrated an achievement with food? I love celebrating with food, especially ice cream! Yum… Now this has opened my eyes and my mind to think about why I want that ice cream, or pizza. Am I trying to fulfill something that only God can fulfill or am I making a choice that is good for me?

God never intended for us to want anything more than we want Him. 

Therefore, I am challenged by Made to Crave to turn my every craving or desire for food, as a reminder to pray. Pray over the choices that you have for your meals, pray for wisdom to select what is beneficial for your body, and pray for strength to avoid what is not.

Instead of wallowing in what I can’t have, I’m making the choice to celebrate what I can have.

God has blessed us richly (over abundantly) with choices of foods, that unfortunately we have fallen into the trap of convenience – quick and easy. We don’t realize that there are so many other foods and choices that are better and more beneficial to our bodies by providing more energy, strength, and satisfaction.

Remember from chapter 1, we consume what we think about? I don’t know about you, but I want to strive to consume more of God and what he intended for me, rather than the quick and easy way of living. I want what will truly satisfy and fulfill my truest desires.

Join me in my journey! http://proverbs31.org/online-bible-studies/

Made to Crave – Day 1

January20

“How lovely is your dwelling place, O Lord Almighty! My soul yearns, even faints, for the courts of The Lord; my heart and my flesh cry out for the living God” (Psalm. 84:1-2)

Today is the start to a new Bible study! I have joined the group Proverbs 31 for an online Bible study called “Made to Crave: Satisfying your deepest desire with God, not food.” (Written by Lysa TerKeurst) Sounds intriguing? I know, that’s why I joined!

Our first assignment is to read chapter 1 – “What’s Really Going on Here?” and write about three things that stood out for us. Here is what I chose to write about:

Reading Chapter 1 today was a wake up call for me! Three things that stood out and impacted me greatly was 1) We Crave what we eat! SO true and I struggle with this a lot! I tend to put the healthy choices aside and grab what is convenient. Therefore I crave it even more! 2) We consume what we think about. And what we think about can consume us if we’re not careful. How many times do I think negative thoughts about myself, appearance, and performance. They can consume me and I become my own worst enemy! 3) LOVE this!!!! The more saturated we are with truth, the more powerful we’ll be in resisting our temptations. It is my desire to consume more of God and be saturated in His truth to help steer my choices, thoughts and desires in the right direction!

In order to become more saturated in God’s truth, it is my goal to memorize scripture, so that I may be equipped to condemn my temptations when they are presented to me with the power of Christ! (I never even thought of doing this! I feel like I have discovered a new magic trick! I’ll keep you posted on whether it works or not! 😉 The scripture at the top (Psalm 84:1-2) is the selected Scripture for this week to memorize, but another one I am challenging myself with is

I Corinthians 10:23 “Everything is permissible – but not everything is beneficial.”  

I might add a line: like the ice cream in the freezer, or the chips in the pantry, or the chocolate on the counter! 

We are “made to crave”, but we can only crave what we put into our bodies, minds, and souls. Join me in choosing to saturate myself in truth, and consuming nourishment that truly satisfies my deepest desires.

Here is a link to be a part of this Bible study, if you are interested: http://proverbs31.org/online-bible-studies

 

 

Called to Share

January16

I Kings 18-19

“Lord, help me to remember the story of Elijah and his worry about being the only one left, or lack of nourishment, or that God doesn’t care for him, because I can deeply relate to how he felt.

Many days I am overcome with worry, doubt, and self-pity that my vision gets cloudy and I can’t see past my circumstance to His plan. I have to remember that my circumstances are not punishments, but parts of the journey that God has planned for my life. As each day is given, He is with me to help, guide, and encourage me along the way.

God, help me to remember NOT to run or hide from you but rather turn to you in my times of need and discouragement. Help me to seek your counsel first and then receive from others. Help me to be forgiving of myself as you freely give forgiveness.

Thank you for loving me that you won’t ever leave me to be me, but rather you are with me to push and challenge me to be who I am called to be!”

 

Not sure why, but felt led to share this journal entry from by devotions today. Hope this helps encourage or bring light to someone’s life today! Following God’s lead on this one! 😉

Miserable Hope vs. Peaceful Hope

September20

A month has passed since my last blog entry. I can't believe how time flies, but it has really been a trying month and I don't think I was quite ready to post. You see God has been at work in my heart and my mind lately. I have had A LOT of growing pains this past month due to some hard lessons and much needed “kicks in the head”!

In order for you to understand some of my recent trials, I must take you back to my childhood and how I was raised. You see I was an only child, which to many of you may mean I was a spoiled rotten brat (in some aspects Yes, that was true! BUT I turned out okay in the end!). Being an only child means that all the attention was upon me. I did not have an older or younger sibling to divert any of the attention to, especially when it came to decisions, academics, or parental expecations. My parents counted on me to make them proud, like most parents do. When I was not performing to my full potential; my parents pushed me even harder to achieve greater. Nothing wrong with that, right? I agree, except that in my mind this applies to everything I do, including being a mother.

Stay with me, I'll return to that thought in just a moment, but first I have to give you another tidbit of information about me. I was given the awesome privelege of attending a private Christian school, Summit Christian School. I began attending in the third grade, which is when I began understanding what it means to have a relationship with God and learning about His promises and teachings. I am so grateful for this time in my life to have had the opportunities to learn about God's word and be educated in my faith, but having a knowledge of the Bible can sometimes get in the way of your faith in what the Bible says.

The title of this post is exactly where my heart has been and how it has been divided in two different types of hope: One found in the name of Jesus- Peaceful Hope, and one found in the “head knowledge” of Jesus – Miserable Hope. I have hope, but where does the foundation of my hope come from?

Okay, I'm about to get real with you and lay out all of my imperfections when it comes to being a follower of Christ. I have had this twisted belief that the more I do to help Emmalee, the more God will bless me and heal her through all of the efforts put forth. In that frame of mind, I have grown frustrated, angry, and miserable. Wayne would come home or receive phone calls of me in tears, and so mad at the idea of having a daughter with special needs. This is NOT easy to accept, even two and half years later! I have never been able to get over the idea of this being a punishment of some sort and having to do all that I can to make it right. Being raised to do better and do my best in everything, actually came into play as a mother, because I would fill my every minute and Emmalee's every minute with therapy regimen, learning, and information on how to help her or make things better for her. This crippled my soul and heart over time. I grew weary, exhausted, frustrated, and angry. I thought that if I do more with her, God would see my efforts and bless me through it. Just as my parents would be proud of me for working harder and acheiving my goals.

Many times I would be reminded of the many stories of Jesus' healing of those in need. I would think about how those who desired healing worked so hard to receive it. How the woman found in the book of Mark chapter 5, who was bleeding for 12 years pushed her way through the crowd just to touch the hem of Jesus' cloak. She believed that if she could just get through the crowd, get close enough to touch Him, that He would surely heal her. I know this was not an easy feat for her, she was ill, weak, and had to muster up all of her strength to push her way through the healthy, strong crowd that was surrounding Jesus just for one touch! This was hard work!

Then again in Luke 5, Jesus healed the paralytic man. His friends carried him from their village to the place where they were to find Jesus preaching to the crowd. Imagine carrying someone hundreds, maybe thousands of miles and when you arrive their is no room for you to enter. So instead of giving up, they went the extra distance and climbed the roof to lay their friend before the feet of Christ to ask for healing. Climbing a building while carrying a grown man is not an easy feat either, and then having to lower him into the home to lay him before Christ. Now that is hard work and a definition of not giving up or only doing so much!

Hard work is rewarded, right? Yes, it is.

One thing that these stories have, that I did not was the peace of knowing that coming before Christ and doing all that they can for themselves or others was simply a hope. They did not know that Jesus would heal them, but rather wanted/chose to believe whole heartedly that just being in the presence of the Christ was enough. They went and did these things joyfully, unexpectantly, and humbly. Little did they know that their stories would be told for thousands of years because of their efforts of faith and hope.

I was working expectantly, frustratedly, and angrily. I knew of His promises and believed them to be true, but I did not trust in them. Jesus chose to remember these few and make their stories known, because of who they were and became in Him. My story is one of being a mother of a child who is a tremendous blessing, but comes with having to do some extra work. This is not a punishment, but a promise that He has not left me alone in this journey. He can and will show Himself in my efforts, if I allow Him to. I was not becoming who He wanted me to be, but working my way to be a miserable person who had the “head knowledge” of Christ and His promises.

It was at a breaking point that I was faced with the truth, when Wayne came home on one of those days that I was broken and crying. He just came out and stated that, “You are miserable. Emmalee knows you are miserable, too. How will that ever help you or her to make this work?” WHOA! That was a blow, if ever I felt one. I knew I needed that “kick in the head” to choose to change what I knew into what I truly believe. I still work very hard to do all that I can to help Emmalee, but I do it as unto Him – joyfully, unexpectantly, and humbly. (I have to remind myself to do this daily, but I have chosen to face each day with a new perspective.) I choose to have a peaceful hope in knowing and trusting that He will bring healing and blessings in His timing, not mine.

In 2 Corinthians 12: 9-10 “But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am made strong.”

Hoping you find strength in this message. Thank you for allowing me to be “real and raw” and loving me anyway!


 

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Blessed in the Mess

August22

“People were bringing little children to Jesus to have him touch them, but the disciples rebuked them. When Jesus saw this, has was indignant. He said to them,’Let the children come to me, and do not hinder them, for the kingdom of God belongs to such as these. I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it.’ And he took the children in his arms, put his hands on them and blessed them.” – Mark 10:13-16

This passage of scripture has been on my mind lately. I wasn’t really sure why, until I started thinking about my new role as a stay at home mom and all the “mess” I have endured in making sure my daughter has what she needs. As thoughts were pouring in I was reminded of the blessings that have rained down in the midst of it all.

The “mess” that I refer to is:

The jargon – hypotonia, cerebral palsy, ventriculomegaly , hydrocephalus, dysphasia, epilepsy, developmental delay, etc. I could probably earn my doctors’ degree just by the diagnoses my daughter has received over the last 2 years.

The doctors visits – neurologist, neurosurgeon, opthamologist, cardiologist, genetics specialist, metabolic/genetic specialist, nephrologist, and more that I can’t remember right now.

The scheduling and communicating with therapists – Physical, Occupational, and Speech (PT, OT, and ST) – different therapist with different needs and routines which have to be implemented at home, too.

Understanding insurance info. – This one had really been a “bear” this month, because we have dropped our private insurance and are now pursuing state coverage for Emmalee. So a number of questions have arose this week: who and what are covering her needs? Is the equipment, medicines, therapies covered or do we pay out of pocket? Is she eligible for all services? What other programs or assistance is out there to help us ensure that she receives the best care and quality assistance?

This is just a portion of the “mess” we deal with, but I wanted you to have an understanding of what I face and how I have learned to be like Jesus in the fact that I advocate for my child. As Jesus told the disciples to “let the children come to me”, I believe that as a mother I have to make sure that I advocate for Emmalee to ensure that she gets what is best, right, and good for her.

Jesus did not push the children aside, but rather “rebuked” or scolded the disciples for getting in the way of the children. He wanted the children to be able to receive the same blessing as everyone else – “the kingdom of God”. Jesus wanted to give the very best to all, just as I do for my daughter. This role of mom, advocate, and coordinator is not always easy though and many times I have felt that I was alone. I wasn’t even sure that my own husband understood what I have felt like in the battles that I have faced. Like most moms, when it comes to our children our hearts are on our sleeves, but when our child is a victim of circumstance that heart get protected by the “momma bear”, who visits from time to time. You will do whatever is necessary to make sure your child gets what they need; within reason of course. When all is said and done we are spent, feeling like we have given our all, and may have not gotten anywhere. You feel like the world is against you and you alone (I’m just being real here, and maybe a little dramatic, too!).

I know many times I have felt alone in all of this, but then I read this passage again and find the first part of this passage. It draws me in as it states that “People were bringing little children to Jesus”. Those people were parents, grandparents, other family members, teachers, friends, neighbors, and in our world – doctors, therapists, social workers, nurses, and specialists, too. Even though our world may seem daunting, it has been a blessing. I can not tell you how many times our family has been blessed with people wanting to help us along the way. I have learned that I am not alone, no matter how I feel. God has blessed me, my husband, and especially Emmalee!

The people that God has placed in our lives to help Emmalee many times have stuck their necks out for us, going above and beyond what they were supposed to do. I can not tell you how many times we have been prayed over by our medical professionals, given equipment to help Emmalee at home, given personal phone numbers and direct contact if help is ever needed, home visits, and so much more. I can not thank those of you who have helped my little girl and my family enough. You know who you are and I just wanted you to know that you are a true blessing to us!

Even though I do not realize it on a daily basis, due to the “mess” I deal with each day. I do know that when times have been tough that I have received Jesus’ blessing and He has put his hands on me through many of our medical professionals, friends, and supporters. I am truly “Blessed in this Mess” and so grateful for the paths that I have crossed on this journey. Thank you again to those of you who have helped us along the way and will continue to trek down this journey with us. I’m looking forward to the ‘real prize’ at the end, where I will see Emmalee be healed and complete in the kingdom of God!

 

 

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