Beauty From Ash
UPDATE: The album "Beauty From Ash" is complete and can be purchased on Apple music here, and Amazon music here.
I would imagine that most of you have wondered what your purpose is in life at one time or another, and you may still be searching for that revelation. If you are a follower of Jesus, you understand that above all your purpose is to make Jesus known among the nations, to proclaim the gospel to the ends of the earth (Matthew 28:19-20). But when it comes to the details of that command, the hows and wheres, the callings and passions, I would guess that many of us don't know (or we may be unwilling to acknowledge and submit to) the details of our calling and the direction the Lord is leading us in this life.
Four weeks after Noah passed away, I wrote down some of my thoughts which had been consistently focused on my purpose without my only child. As Noah's full-time caregiver, nurse, teacher, etc., I made him my purpose; everything else took a back seat to his needs. He was the center of my world. We spent the majority of our time together, whether in the hospital, doctor's office, at home, or traveling. We played together, laughed together, were shopping buddies...you get the idea. The days after he was taken from me were in a word, torturous. I not only lost the most pure love I'd ever known, but I lost my little companion, my round-the-clock "job," my fulfillment...and my purpose. I felt so empty and devoid of spirit at times. I knew the Spirit of God would never leave me, but I honestly could not feel Him in my darkest days. Praying to find my purpose again felt so wrong, as if I was forgetting my sweet little boy. So when I was inspired to write the words of that June 2012 blog, it was a breath of fresh air, like my eyes were being opened to the fact that God wasn't finished with me yet, and Noah could still be part of my purpose in life, even though he wasn't physically with me. Read below to see what I mean:
"I know that I obviously still have purpose, or I wouldn’t still be breathing. God has given me a desire to serve Him, and now that will just be through a different avenue. I would give anything to still be able to take care of Noah, but because he isn’t in need of me anymore, I have to move on, no matter how wrong it feels. The beautiful part of this story is that Noah’s memory can be a part of my new purpose, and though he is not with me physically, his spirit will always live in my heart and my life will always be changed by his journey. Each day that I am able, I will share with someone new his story and the motto I have coined for his life - “Never Forget - Live 100%.” I do find joy in passing his memory on to a person who never had the privilege of knowing him, by giving them a “Pray for Noah” bracelet/directing them to his website/showing them a picture of his precious face. Noah remembered so much; he never forgot a face or an act of kindness. If you played chase with him once, you were sure to be reminded of that and asked to play it again and again. If you weren’t doing something to his standards, you were sure to be scolded to try harder, i.e. singing - “Sing louder, Dad!!!” In these days of raw grief and heartache, it’s hard to do anything at 100% except miss him, and love him. But with that motto always in the back of my mind, and his memory in my heart, I will realize exactly the purpose God has planned for me, with John David, and I will run after that with all I that I have."
It's been around two years since the Lord placed that realization in my heart. With each day that passes John and I try to grow closer to Jesus and have more clarity about our purpose in Him. We cannot see the final result, but we have a generalized vision of what God is calling us to, and as we daily surrender to God's will and seek His direction, we hear a still, small voice speaking, "This is the way; walk in it" (Isaiah 30:21). Sometimes those whispers of direction insight fear and doubt in my heart. Having left behind jobs with consistent paychecks, being seven weeks from delivering a precious new life to provide for, facing potential rejection as we plead for financial backers for the new ministry...all of these events can foster fear and anxiety. But this is our detailed calling, and I believe that with all of my being. If you follow us on any type of social media or have visited this website in July, you are probably aware that John David and I have a desire to compile all of the songs that were written surrounding Noah's illness and death (with all the grief and questions resulting from those experiences). We have rough "poor man studio" recordings of the songs, but desire to produce a professionally recorded, quality product to distribute to anyone who would benefit from these songs and we are trusting the Holy Spirit to minister through the lyrics and the message. Producing an album comes with a price tag, so we have created a Kickstarter campaign to help generate the money to see this vision to completion. We have 10 days left in the campaign to raise 60% of our financial goal! (Kickstarter allots 30 days to raise 100% of a project's funding; it's an all or nothing situation. If we don't raise the full amount needed to fund our ministry project, then no money will be taken from anyone who has pledged.) There have been 62 amazingly generous individuals/families that have already committed to invest in this ministry, and we are so humbled and grateful for their gifts. I know over the years hundreds of people have donated to our family for medical expenses, vacations for Noah, gifts of bereavement to organizations we have supported, among other causes. There have been fundraisers organized by dear friends, and pleas from the churches in which we have served for community support as we walked the road of childhood cancer and suffered the aftermath or Noah's loss. John and I would not be standing up today if it wasn't for the family of God that surrounds us, and the inspiration of the Holy Spirit in the hearts of those who offered prayers and gave financially to our needs. Noah had as much of an amazing, blessed existence on earth as he could because of that generosity. There are really no words that can express the gratitude in my heart for those that have provided such gifts for my beloved son.
John and I don't enjoy asking for financial help. All of the past gifts, fundraisers, etc. for Noah and our family were not organized/solicited by us. We were blessed to be in a church family and community (both Athens and Birmingham areas) that loved us and did not want to see us fail or suffer. (Granted, we have asked for donations for Noah Crowe Foundation and other organizations that benefit families dealing with childhood cancer.) Today I make a personal plea for financial backing of this ministry that I have seen first hand bring encouragement and comfort to broken people. As a broken person on the mend and having traveled to several different congregations already with this ministry, I have seen the Lord use my family's testimony and the songs written through our journey as a catalyst to healing for the people of God who have turned from Him in their time of need and loss. The honesty of grief and emotion through tragedy, the struggle of faith and belief, the words of encouragement given by the Holy Spirit...all of these can and do minister to hurting and brokenhearted people. Life is a struggle, and everyone has their "something" that has proved to be a disappointment in their experience with God. We all have been broken in some way, and this life journey is about allowing the Lord to glue us back together, one piece at a time. If I could sum up why we feel called to this in one scripture it would be this: "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ" (2 Corinthians 1:3-5).
Please follow this link to our Kickstarter page, Beauty from Ash, watch the video description of the project (along with a recording of the first song, Beauty from Ash) and prayerfully consider giving to our ministry project. We are answering the call to leave what we've known and have been comfortable with and begin this new adventure with the Lord, and although it is exciting to anticipate how Jesus will work through our obedience, it is still a painful and emotional experience to share our story and pain over and over with congregations and individuals. Through the pain, Noah's memory remains and his life is introduced to those who will never meet him this side of heaven. This brings me so much joy and comfort, knowing that through this ministry the Lord is being served and Noah is being honored as John and I do our best to "Live 100%."
If you would like to hear more of our songs or discover more details about the ministry visit www.johndavidcrowe.com; for the detailed stories behind some of the songs click here and read the first update.
If you would like to contact me personally for more information about our ministry or dates we are available to share with your congregation, click the mail link at the top right of this page or visit the contact page and fill out the email form.
Thank you in advance for supporting this ministry with your prayers and gifts as we see His Kingdom come and will be done!
Kickstarter - John David
We are making an album and we need your help!
I've been writing songs about our struggle with faith, our questions, the encouragement we've received and how God has comforted us and allowed us to remain faithful and move forward in His strength after losing Noah. During the years that we fought with childhood cancer and after Noah's passing God has brought me comfort with these songs and we want to share them with the world.
We want these songs to be an encouragement to anyone who is struggling with disappointment or the pain of loss.
Please join us and help grow this ministry.
Click the link here to visit our Kickstarter page to find out more information.
You can also copy and paste this link on your social media and emails if you want to help us spread the word.
Watch the video below to learn more about the album "Beauty From Ash" and please visit www.Johndavidcrowe.com to listen to some of the songs we will be recording.
Thank you so much for your support!
A defense of my faith
I have today received the most critical, (even demonic), email to date, and I was led to respond to the author. I am posting it here in hopes that it may encourage at least one who needs to read my defense of my faith. Join with me in praying for the author of the email that he would experience the love and grace of Jesus Christ. Thanks.
I’m not sure if you anticipated a response to the email you sent me yesterday, but I couldn’t ignore the condescending tone oozing from your fingers as you typed and I want you to know that I care enough to spend time and energy on formulating a “rebuttal,“ if you will. Here is my response; I hope you will read it through to the end.
John 14:14 “If ye shall ask any thing in my name, I will do [it].”
Greek translation (from the Greek-Interlinear Bible): (If ever) (any) (ye-should-be-requesting) (in) (the) (name) (of-me) (I) (shall-be-doing).
Now, when you read the passage from John 14 that you referenced (actually incorrectly referenced as chapter 12) you read that Jesus/God promised to answer any request we have of Him. So, say a person asks for a specific kind of car. Bam, in Jesus name it should be his. Or, another person asks God for a spouse that treats them well. Bam, in Jesus name he should have a good spouse. Right?
That’s not what I see here. When we make a request of the Lord, in prayer, IN HIS [JESUS] NAME, that request comes under the sovereign authority and will of God. The name of Jesus isn’t a magic spell that will grant us all whatever we desire, because God knows not all of us desire righteousness. That is why when I pray, I make my requests of God, in Jesus’ name, and I end that prayer with, “but not my will but Your will be done, Lord.” Jesus modeled this prayer in the Garden of Gethsemane when His humanity wanted to live and not die, He didn‘t want to be separated from His Father in death (Luke 22:42). Though Jesus knew God’s will (that Christ would be the atonement for all sin of mankind), He desired in the end for “this cup to pass from me.” Can you blame him? But Jesus still submitted to the authority and sovereign will of God the Father, because His sovereign will glorifies Himself…and much to the dismay of many Christians today, that’s all this life on earth is about. God desires to glorify Himself through His people, whatever that may look like.
“But that’s not a good God! A good God wouldn’t kill innocent people or let His people be plagued with disease and starvation! How can God be good if such horrible things happen in this world??” I have heard similar statements and questions many times, and since I‘m being honest, I’ve thought them myself. Here is my best answer to those statements: I know God is good from experience, and I know this world has evil from experience. There is something of God’s nature that I don’t understand called His “permissive will.” God in all of His sovereignty permits really bad stuff to occur, not just in human history but today as well. I get that…totally. My son is no longer with me. I watched him suffer from a disease that took his childhood, his life, and my joy. I prayed, a lot. A lot of people prayed with me for Noah to be healed. I prayed for medical science to develop a cure that would take away Noah’s cancer. I prayed for a miracle, to see Noah spontaneously made well with no medical explanation. I had faith that God in all of His sovereignty and omniscience could do that. But He didn’t, and I don’t understand why. But I do understand that I only see a minute glimpse into the character of God through the Bible (you have referenced that as the “buybull”), and through my personal experiences in life. What I do understand is that I am like a child in my knowledge of who God is, and I trust in His will and purpose for my life just as my son trusted in me to care for him when he was here.
Do I feel as if God has failed me? Honestly, I am tempted to sometimes. One of my main purposes in life was to care for my child. Do you have children? Maybe not, but it’s a big deal, caring for a child. When you feel you have failed your child because they suffered and died, you want to blame someone else. It’s a natural human tendency, to deflect…but I soon realized that God allowed all these horrible things to happen to my family by His permissive will. Though He could have stopped it I am choosing not to blame God, but to trust God, that in the end (whenever that is) He will be glorified through my life, through Noah’s life, etc. If you think that I am naïve for this belief, or if you think that I am ignorant to the ways of this world, if you think that I don’t live in reality, that’s ok because your opinion doesn’t shape who I am in Christ.
I discern your anger and pain in the letter you’ve sent me, and I’m so sorry for the reason behind your aggression. I don’t know what you have experienced in your life that has caused you to react in such a way to my writings about my son’s life with cancer and his death. (Side note: Yes, my son did die, in my husband’s arms and by my side. His body died. He quit breathing and his heart stopped beating. It was horrific, agonizing, and something that torments me to this day. I will with grace choose overlook the irreverent and accusatory statements you’ve made about his death because you have made it clear in your email that you don’t believe in God the Father or Jesus Christ His Son, or His promise for eternal life beyond this earth. I know in my heart that though his body died, Noah’s spirit lives on in eternity. You can tell me that’s not true, but I will not be so easily swayed in my faith.) Back to your pain: we all have it in some form or another. If we are going to compare, some will have it worse than others. But we all have pain that has hardened our hearts, or threatened to steal the joy that we are meant to have in life. Once again, I’m sorry for yours and the people/person who caused it. Or maybe you are just tired of hearing about people who have faith in God, despite what circumstance they have been through. Maybe you have read scripture and you find error and contradiction within those 66 books that were written by man, and you can’t see how it could be inspired by God. Whatever your anger originates from, I’m sorry for it. I realize nothing I could say (or write) can convince you that my faith is real and alive, and inspires me every day. Until you allow the Holy Spirit to speak life into your own spirit, you won’t be able to see what I experience, and I’m sorry for that as well.
I will not share the email you sent me or your name with my readers because I respect your privacy, but I am posting my response in hopes that maybe someone else would find encouragement in my words. That is after all the reason I lay out my thoughts and beliefs for the world to see and potentially criticize, so that at least one may read and remember that, “in this world you will have trouble, but take heart. I have overcome the world!” - Jesus.
Praying you experience His grace and mercy, and doing my best to live my life for His glory,
2 Year Anniversary
It's been quite a while since I've visited this page, inspired to share my experiences. The truth is, since the last post in December 2012 I haven't felt inspired to write or had any desire to share about my life without Noah, and it has been incredibly difficult to even visit this website. Several months ago I attempted to begin compiling all the posts and finally start my book, but the pain of it all was too much to bear. Whoever coined the phrase "time heals all wounds" must have never lost a child. I will submit that time does nothing to alleviate the pain of child loss, no matter the age of the child at the time of his/her death.
Today marks two years since Noah's death...as I'm typing this sentence almost to the minute. I have been planning for days to publish a blog on this anniversary, trying desperately to determine what it should say, reveal, expose. I still don't know exactly why I'm here writing...these words may not be inspired but I pray at least they will be real, felt deeply, and have purpose.
I suppose I should begin by explaining what John and I have been up to since my last post. Last May we decided it was a good time to purchase a home. We loved serving the youth in our church and felt secure in our job/calling there, so we started looking around Calera, a small town about 30 miles south of the city of Birmingham, AL. We found a home with a beautiful backyard view which happened to overlook the neighborhood where we lived when Noah passed away. It felt right to be back in the town where we were last with him. We purposefully planned our move during the first anniversary of his death, hoping it would provide some distraction from the painful reminders of one year without him. (I don't recall how effective that strategy was, but I do remember that I absolutely hated the physical act moving and hope we never do it again for a while!) Shortly after our move we became very busy as senior high youth leaders with summer youth trips/events and saw the Lord work in wonderful ways in our own lives and the lives of several of our students and adult leaders. After our summer experiences, serving at the church became increasingly difficult as the direction we felt God was leading us in ministry was not approved of or blessed by some of the church leadership and congregation. John and I prayed, sought wise counsel, and finally pleaded with the Lord to provide an answer. We did not want to leave the students we loved and ministered to for over two years, but we had peace to leave the congregation and did so in January of this year. The are some battles the Lord asks us to fight, and some that He allows us to walk away from. It was hard, and very sad, but we could not serve with integrity in that capacity any longer. We were hurt, and struggled with being bitter, but we have seen that God will provide us with a way out of every temptation when we look to Him for strength (1 Corinthians 10:13). We love the people of that congregation, appreciate all they have done for us during our time with them, and pray God's blessing on the ministries there.
Since leaving our position at the church, God has been faithful to provide for our needs and give us direction and vision. We have a media company, Innovative Media Pros. John David is excellent at producing commercials, instructional videos, webcasts, motion graphics, real estate HD video tours, testimony videos for churches as well as consulting for churches in need of audio/video upgrades. I'm so proud of him for stepping out in faith to provide for our family in a way that is honoring to God and satisfies his desire to create...and he does it well! If you would like to see some of his work you can visit the business website here. The beauty of this new business is not just paying our bills, but it frees us up to travel and share our testimony to any church that would have us! John has written many songs through Noah's illness and after his death, and they have provided us with an opportunity to share our pain and struggle with several welcoming congregations already. Our true desire is to bring encouragement to those who have lost a loved one and are questioning or doubting their faith in God, those who are angry because God said "no" to their prayer, those that are hurting and don't see how the Lord could make something beautiful from the ashes in their lives. When John has a platform to share our story, it isn't easy. The raw emotion of Noah's loss will often bubble up and it is a painful thing to experience...but it is beautiful to see the Lord come and encourage His people through scripture and song, and soften the hearts that may have been hardened by death and loss. This is our purpose, and we would love to come share with your congregation. You can contact John David through his website www.johndavidcrowe.com, and listen to some of his songs there.
So, apparently starting a business and a traveling ministry aren't enough, so we have added another exciting endeavor to our plate: The Noah Crowe Foundation! Our goal through this foundation is to enable families of children with a terminal or life-threatening diagnosis to capture digital memories through photography and videography, by providing them with quality cameras and computers, as well as offering our video services to create slide-shows and graphics, etc. for their family events/memorial service. We were so blessed with the ability to purchase a good camera and laptop after Noah's diagnosis and John was intentional to capture as many moments as possible on video and in pictures. While caring for Noah, thoughts of taking pictures were the farthest thing from my mind. But now those videos and pictures are the most precious things that we have in this world because they preserve the memory of our amazing son. We want families to know how important it is to make time for taking pictures and capturing intimate family moments in-between (and even during) hospital visits and taking medication. We can become so enveloped with the disease that we forget to live in the midst of it, and we want all families to be encouraged live 100%, no matter what. (If you would like to contribute a tax-deductible donation to this foundation on this second anniversary of Noah's death, or any day for that matter, visit this link:
Live 100%...it's a hard thing to accomplish when you are suffering from emotional or physical pain. When circumstances are bleak, not fulfilling, when life is tough, it's difficult to push forward and put one foot in front of the other. Since Noah's death John and I have been met with much grief and the trauma of helplessly watching your child die threatens to steal your sanity. I've written above about the logistical parts of life, what we are doing to keep living. But there is an inner struggle that we don't often speak about publicly in detail. Shortly after Noah's passing my grief began manifesting itself through anxiety, which overwhelmed my body and resulted in fainting. Fortunately that has now resolved. My biggest struggle since then are my thoughts. We watch videos and look at pictures and try to fill our minds with positive images and memories, but the torturous ones sometimes will invade the good. At the most random moments, I will experience a flashback so realistic that it sends a chill through my body and brings a lump into my throat. The hard memories of his sickness, treatments, watching him die, they are ones I don't want to forget because they are a part of his life. But I consistently ask for strength from the Lord to take them captive and control when and how I want to remember.
I have dreamed about Noah several times since his death, and every time I see him in my dreams (except the first when he was healed and running around playing) he has still been sick. Recently the dreams have revealed that I had lost my mind, for example I would try to get to Noah, thinking he was at the hospital or with a relative and I had forgotten about him and was franticly searching for him; the people around me were calmly trying to talk me out of it, reminding me he was dead. Waking up from a dream where you are insane is frightening, and realizing it was just a dream is quite a relief. I'm praying that my dreams will become good and encouraging instead of threatening and fearful. Last night I saw him again, this time it was peaceful. We were sitting at a table together, he looked at me and said simply, "I can't come back, Mom." That's all I remember.
I know we all have our struggles, those things in life that threaten to steal joy and sanity. I know we all give in to those struggles sometimes, we medicate ourselves with whatever takes the pain away for a few moments. I'm not alone in my grief. We all feel it for something we've lost...or never received. How do we live 100% while it feels like the world around us is falling apart? Trust in the Lord. How can I trust in the Lord when He has denied my request to my deepest desire? He said no to His own Son, for the good of creation...for you and me. Jesus prayed in the garden for "this cup to pass from Me. But not My will, but Yours, God," (Matthew 26:39). I don't know why or how, and I don't have all the answers or great understanding, but I trust the Lord to work all things for His good and glory. I wrote this four weeks after Noah's death:
"Even when none of this life makes sense, even when I feel so much emotional pain and torment…trust Him. In this world we will have trouble, but be of good cheer, Christ has overcome the world. I find my hope in Him, because He promises I will see Him, and Noah, in heaven. No matter what this life brings, Jesus will overcome it for us. Whether here or in eternity, only He knows, and why….but nevertheless we do overcome when we choose to trust and follow Him. It’s not easy, especially in the worst moments of my life, but I will do my best."
I'm going to stick with that. Jesus is our overcomer. Some of you reading this may not believe that, but I do. He is my hope, and death can't take that from me.
Lastly, I would like to share something very good. John and I have kept this mostly to ourselves until a few weeks ago, but we are expecting our little girl to make her entrance into the world in late September. Her name is Jovie Alexandra, and I'm sure Noah is doing a happy dance anticipating her arrival. Her name comes from "jovial," meaning joyful. Alexandra, the feminine form of Alexander (my dad's and Noah's middle name), means helper of man. We have named our children with names we want to reflect their character. Jovie will be a joyful helper of man. :) This has been a bittersweet experience, though. We are overjoyed at this gift of life and look forward to growing our family, but this precious new life does in no way replace nor does it cover up the pain of losing Noah. I am tempted to worry about Jovie, her health and development (as are all expectant mothers, I'm sure). It has stretched me to pray for well-being, but in the end submit her life to the Lord and ask His will to be done. Sometimes His permissive will is not what we desire. God, give me the strength to accept Your will and trust in Your sovereignty. This little girl will bring glory and honor to Your name. (View our announcement video here.)
Life is an adventure! As I'm climbing up that hill I talked about in my 12/10/12 blog, there are bumps and falls and even crashes, but I keep getting back up and pushing higher towards the top, where my victory is seen. I'm going to get my book finished, and I'll let you know how it goes. Thank you for still reading, even though I've been silent for so long. I trust that I will have more and more to write about in the coming days, and I may start another blog for those updates. Keep seeking the Lord, and living 100%!
This Christmas morning I did not wake up to an excited smile, Santa did not bring toys, no pictures were taken, and I did not open gifts. This morning it was just me and Jesus, and a handful of sausage balls. And this Christmas, in all of my pain and grief over the loss of Noah, I have seen the true foundation of the Christmas season: a tiny baby boy filled with the Spirit of God, two parents who are filled with joy at the arrival of their firstborn, but also feel a looming cloud of sadness at the prophecy that their son must be sacrificed for mankind. What grief and sadness they must have felt, even more than I do today, knowing one day their child would certainly be taken from them.
So this Christmas has been stripped down from the commercial, happy, joy-filled Christmas I'm accustomed to, and I'm left with only Jesus, His excited yet confused and scared parents, and a promise of salvation and healing. And to be quite honest - that's all I need to keep moving forward and to live 100%. I am not living for anyone else but Jesus Christ, because He died for me. And somewhere in another dimension of time and space, wherever heaven is, my little boy is smiling because I am slowly starting to get it. This Christmas I am thanking God for the gift of eternal life through His Son, the light of the world, the baby in the manger, the boy that was "about His Father's business," the young man teaching His elders, the God-man that took my sin and shame on a cross, forever offering forgiveness and peace to my broken and hurting heart. Jesus is all we need - see that with me today, and all days.
God bless you, and I hope you have a Jesus-filled Christmas. Live 100% for Him!
"And as Moses lifted up the serpent in the wilderness, even so must the Son of Man be lifted up, that whoever believes in Him should not perish but have eternal life. For God so loved the world that He gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life. For God did not send His Son into the world to condemn the world, but that the world through Him might be saved. “He who believes in Him is not condemned; but he who does not believe is condemned already, because he has not believed in the name of the only begotten Son of God. And this is the condemnation, that the light has come into the world, and men loved darkness rather than light, because their deeds were evil. For everyone practicing evil hates the light and does not come to the light, lest his deeds should be exposed. But he who does the truth comes to the light, that his deeds may be clearly seen, that they have been done in God.” (John 3:14-21 NKJV)
I have wanted to write an update for some time now, but the words just wouldn't flow like usual. It has been very difficult to describe what I have been feeling over the past several months. Today I am supposed to be packing, getting ready for the move that will place us closer to work, cutting out our commute and saving both time and money. This move is an opportunity God has given us that actually makes sense, but emotionally it is so hard to follow through. With every room I step into, I am overwhelmed with memories of life with Noah. This home where he lived, albeit a span of only five months, is the LAST placed he lived. Taking pictures off of the walls, packing his towels and washcloths, and cleaning out cabinets housing his plastic Star Wars cups are all such emotionally draining tasks. Wherever we land from this time forward will have no memory of his bouncing, happy feet darting from room to room. There will be no scuff marks on the walls from his spastic light saber fights. It feels like too much "moving forward" for me. But nevertheless, it has to be done.
Yesterday morning during my husband's sermon, I continued to think on the word "opportunity." Throughout the bible, stories are told about people who were presented with God-ordained opportunity. Some accepted their opportunity as a chance to prove their trust in God and reveal His glory in their lives; others rejected the opportunities given that were to prove themselves faithful to the Lord, and they suffered without a feeling of purpose. As I thought about John's challenge to the congregation to accept God's will, whatever that looks like, without doubt or concern for the future, I reflected on the events that our family has experienced. I am beginning to see how much opportunity John and I have been given, opportunity to point to Jesus and His love, His mercy and grace, His eternity. I began day-dreaming about the future and how we can use our experiences to continue to remind people of and introduce people to the faithfulness of God. I began to realize that in the middle of my suffering, God is purposing and planning my pain for His good and glory. Not a tear I have shed will go unnoticed or unused for Him. As I am waiting to be reunited with Noah and meet the Lord, I am always walking in opportunity to serve Him and to show His love. If only I could look at every situation with that viewpoint...
Back in August I was invited to a retreat with a sweet friend. The Lord introduced me to a picture of my life that I hadn't realized before. Here is what I journaled that weekend:
"I find it interesting that for my journal time I thought it necessary to sneak away to the lake, which is in a little valley between a few small hills up
here in north Georgia. The house up the hill behind me has balconies that overlook the lake, but I felt I needed to be closer and follow the path down to the bottom, (which leaves a good climb back to the house). At the bottom, near the waters edge, the lake is muddy, with cloudy water and dead limbs floating around, and just pretty gross by my standards, as lakes tend to be. But from the balcony outside of my room, it looks pristine, glowing, and beautiful as the sun reflects upon the still water. "For the past 2 ½ years of my life I have lived in the valley of sorrow and
suffering, watching my only child fight to live, doing everything I could to help him survive. Being in the valley has become my safety and comfort. If I attempted to make the climb to the top of the hill, something would knock me down to the valley once again: tumor growth/recurrence, miscarriage, loss of a home, surgeries, my son’s decline….and eventually death. Suffering doesn’t surprise me anymore; in fact, I expect it. I have determined that life is a constant struggle, an inherent wrestling of flesh and spirit, with sorrow and joy intertwined and indistinguishable at times. I have felt that my purpose has been to just crawl down to the valley and sit, waiting for sorrow to find me. This place in my life looks gross to me, just like the lake. It feels dirty and dark, like this muddy water I see, but I’m not viewing my life in the valley from the 'balcony.' From the balcony of my room the water is beautiful; there are boats enjoying the calm waters and cool breezes. The sun causes the water to shimmer and sparkle. From where I am sitting on the bank, I’m not seeing things from the balcony perspective. This valley perspective I have of my life is
comfortable to me, even though it is painful - feeling alone, feeling defeated, just doing God’s work in order to find a purpose for each day. I feel guilty for wanting to seek out happiness, because my son is gone from me. It seems like I feel the need to be defeated and struggling so I can show how much I miss him and how unfair it is that he is not here. Noah was where I found purpose for our years and three months of my life. Almost everything I did was based on what he needed, and how he needed to be cared for. Every decision John and I made together affected Noah, and he had to be considered through it all, with his best interest in our hearts. Things are so different now and in the natural, it
feels so wrong. "So, I have to be redefined. I need to be remolded and reshaped, with the Lord being my definition and joy. Just like walking back up the hill on the path to the house will bring my body physical discomfort (my lungs will need to work a
little harder and my heart will pump a little faster, my muscles will be stretched and pulled), so will climbing up the figurative hill to the high place
(where victory is seen), with sorrow and suffering at my side, be incredibly uncomfortable. But if I want to reach Jesus in all of His glory and see His purpose for me I must begin the climb. If I sit and wait on Him in the valley, I won’t get to see the amazing view He has of my life from the balcony perspective.
"Jesus give me strength and endurance for the climb, while I dust off my joy, covered by the ashes of pain and death. Restore to me the joy of my salvation, and uphold me by Your generous Spirit (Ps 51:12).
"…Yet (despite my circumstance) I will rejoice in the Lord, I will joy in the God of my salvation (victory). The Lord God is my strength; He will make my feet like deer’s feet, and He will make me walk on my high hills (my “balcony view“). - Habbakuk 3:18-19 (italics are my own interpretation)."
So, if you've ever read the book "Hinds Feet in High Places," you'll know I was making a lot of reference to that. There is so much about this life that we will never understand, and if we are constantly focused on the struggle and the pain, we will never see what Jesus sees. I am desperate to see my life from God's perspective, up on top of that mountain, where He sees the big picture. I trust that He works all things in my life for HIS good and for HIS glory. Every step that I am taking up each steep hill bring discomfort and even pain, but the end result of meeting the Lord in all His glory is worth every heartache and trial.
The preparations John and I are making for the move are difficult, and we would appreciate any prayers you could give on our behalf for some grace to get through it. I am looking forward to the ways God is going to use Noah's life for His glory and I can't wait to see how he will utilize John David and myself to facilitate that.
I have a few more prayer requests, for those of you still reading and praying: Three little guys I have grown to love dearly, though only having physically met one, have each been given a grave diagnosis from their doctors. I live in reality of those diagnoses, but I also walk in faith and hope of God's healing power. Please pray for Ehrrhen, Ryan, and Joel, all precious boys battling brain/spinal cancer. It is so hard to watch children suffering and feel helpless to change their circumstance. The organization "The Truth 365" created this 50 minute video to inform of, through all types of social media, the dangers and realities of childhood cancer. Please watch this video and forward it as much as you can. If you would like to know how and where to donate, visit www.thetruth365.org.
Once again, John and I, along with our extended family, appreciate your prayers. God is still good, no matter our circumstance. Never forget Noah, and live your life 100%, making the most of every opportunity. God bless.
Friday was 12 weeks since Noah’s death and this Saturday will be three months. I am trying to stay as busy as I can, but there are some days I recognize that I shouldn’t be in public, and adjust accordingly. I can speak with certainty for John David and myself when I say that missing Noah and the grief that piggybacks on that emptiness grows stronger each day. Our grief response is unpredictable, and often surfaces at the most awkward and inopportune times. What is so difficult about the pain we feel is that we don’t want it to disappear because that would mean we don’t think of him - it hurts to think of Noah and the hole that is left in our hearts because of his death, and yet it hurts when we realize we haven’t thought of him in a few hours, and could go through such a span of time without acknowledging his absence.
Growing up, I would often pray to God to communicate certain things to my dad, who died when I was six, and who I knew was in heaven. I’ve never believed that those who pass into eternity could see what was taking place in the earthly realm, so I would ask God to tell my dad about my accomplishments, my feelings about missing him, and remind him of my love for him. At my wedding, the day of Noah’s birth, and during so many other special life events I would ask Jesus to pass along the message that I miss Dad and wish he could be a part of my life. Now, I ask Jesus everyday to find Noah and give him a hug from me, tell him I love him so much and miss him terribly, and that I can’t wait to be with him again. I think about eternity all the time...ALL the time. I wonder anything and everything about heaven. I am more
concerned about getting there than I ever have been (and I’ve thought a lot about it in the past, believe me). I have such a greater sense of gratitude for Jesus Christ and His sacrifice to make a way for us to come to Him in eternity. I find myself thanking God for Jesus so much more, because I know that Noah is with Him. This is not just a
belief or a speculation – I would give my life standing on the fact that Jesus welcomed Noah into eternity because He said yes to God’s plan for our
reconciliation to Himself.
I’d like to share with you the experience we had when Noah began his last few hours on earth. I’ve wanted to explain his death in detail for almost three months, and now seems like the right time for me to do so. I posted a blog the day before Noah passed, describing his struggles and how his health was quickly declining. I had no idea how soon he would fade. That Thursday night (5/17) Noah struggled to breathe the entire night due to the fluid buildup in his lungs. (His body was slowly shutting down, he wasn’t strong enough to cough anything up, and he had been aspirating liquids). I
asked his hospice nurse to come Friday morning, and when he saw Noah’s condition
he determined the end was near and stayed with us for the duration of Noah’s
struggle. Not being able to breathe is terrifying – I could see the fear on Noah’s face. He was blind, the tumor had already taken his sight. He could barely speak. We prayed over him, begged God to keep Noah from suffering. John and I told Noah that it was ok to go to Jesus, we encouraged Noah that Jesus was the only one who could make him all better. He understood us, and was still able to comprehend what we were saying to him. His eyes were closed, and he pointed his right hand straight ahead, and said with much difficulty, “I see Him.” I knew immediately that He was seeing Jesus, and that Noah was beginning his passage into eternity. He began to make the sign “help,” (I taught him some basic sign language after we learned of his recurrence, because of the certainty that he would lose his speech). This ripped out my heart because I could do nothing for him. John and I had previously decided against any medical intervention at this point, aside from palliative care, because we knew that we would prolong the inevitable. Looking back, I recognize that at this point his spirit had left his body; he was unconscious and breathed very little. We (John David, our moms, the nurse, and I) cried and prayed to God to take Noah quickly and give him eternal healing. It took two long, grueling hours. The sounds of
his body struggling to breathe still haunt us all. John and I took turns holding him, crying and praying over him during this time his body was dying. I was impressed to listen to a song about heaven and all its glory. As the song ended, John was impressed to tell Noah how much Mom and Dad love him, and we knew that he loved us both very much. He told Noah it was ok for him to let go and live with Jesus; he could leave us here. If he would just look at where he was going, he wouldn’t want to
stay with us anymore. As soon as John David spoke those words, Noah’s body took its last breath and he was gone. We stayed in the room for several minutes and sobbed, made our peace, and covered his body. Noah was gone, he didn’t need that shell anymore, so we had no problem with the funeral home coming quickly for the body. We watched the hearse drive away as some of our neighbors looked on in wonder. I wanted to run up and down the streets screaming, “He is gone!! Don’t you all know or care! Stop what you are doing and grieve with me!”
And so that began our journey without Noah. Looking back at his death, I can see how God spared him even more torment than what he experienced. Noah had lost his sight, his body was slowing down quickly, he couldn’t eat or drink, and he was still in pain despite the morphine. If we had taken him to the hospital his lungs would have been suctioned (a painful experience) and he would have been kept alive until the tumor began to shut them down. At the moment he was dying, I was so angry that God was allowing him to suffer and not answering our prayers. I can see now that God DID answer our prayers. Noah would have hated to be trapped in his dying body. He hated to be restrained, he despised being still; watching him deteriorate I could tell he had almost given up. He couldn’t play, sing, dance, give hugs…he couldn’t live 100% anymore. God spared Noah any more suffering in his body by taking him in the manner that Noah died. I can look back on that experience now, as traumatic as it was, and push through all the doubts and pain and say, “God
is good and He answered our prayers. I did not want his body to die, but Noah has a new and perfect body like that of the angels and he is complete.” Looking back I know that the Holy Spirit was with us all during Noah’s last moments on earth, and I know that Jesus took Noah’s soul and gave him a glimpse into his new home.
Now back to that statement, “I think about eternity all the time.” Every day I ask that God would be glorified through me, and that I would see that happen, so each day I will have a reason to get up and get out of the house. Thinking about eternity keeps me moving forward. Each day that I follow Jesus Christ is a day I am closer to seeing Him in eternity, and seeing Noah once again. It is true that when you have very little left to tie you to this world, your longing for eternity becomes very strong. John David and I have such a different relationship now that we are a couple once again, after being a family. We love each other so much more, but we both realize how this world has nothing to offer us compared to the glory and riches that are found in Jesus Christ our Lord. So much of what happens in this world is meaningless. If we are not serving God, serving others, and growing in our relationship with Him, we are wasting our time here. My senior year of high school I had a great Sunday school teacher who would ask us, “Where do you spend your time? Where do you spend your money? When you day dream, what do you day dream about?” Losing Noah has changed my perspective on life. Where I spend my time, money, and what my dreams are have changed so drastically. It makes me sad to know that I should have longed for heaven this much from the time I became a follower of Christ. I had to lose the person I loved the most on earth to see that my
treasure has always been in heaven. Nothing on earth can satisfy me – not a job, not a degree, not a house. Not even really good things, like serving others, loving and being loved, giving away possessions and money, not even sharing my story of God’s forgiveness in my life can bring me peace and satisfaction. Being face to face with the One who created me, and being accepted into an eternity with Jesus Christ, and hearing him say, “this is my child who I made a way for…this one is Mine,” …only then will I be satisfied.
Please don’t wait until something is taken away from you, and leaves you with an
open, painful, bleeding wound, before you decide to follow Jesus Christ. You need Him in your life before the pain comes, so He can pick you up and give you a reason to keep living, and a reason to long for eternity. If you find yourself in a position where you are left with nothing, and you feel alone without a purpose, even then He will pick you up from the valley you are in, and give you a desire to live, if you will only ask and open your heart to Him. With every minute that passes, we are one minute closer to eternity. This brings me great joy, and if it brings you great fear, get to know God and His goodness, and what His Word tells us is the way to eternal life with Him.
Never forget…what is important, what is true, what is essential, what is your
Live 100%...for God, following Jesus Christ’s example, longing for eternity.
Thank you for your continued prayers for our family. We love and
It is very hard for me to comprehend that today marks exactly four weeks
since Noah left this earth, and left mine and John David’s arms. It’s been four
weeks since I touched his sweet, soft face, and that seems like an eternity.
This new way of life for us is so bizarre, and completely unnatural. Nothing
seems right without Noah. Every small sense of happiness we feel is quickly
overridden by the thought of, “Noah would enjoy this. I wish he was here to
enjoy this with me.” Everyday tasks are embedded with his memory, which is
simultaneously wonderful AND painful. Most every place we go, we have previously
been with Noah, and the adjustment of being in those places without him is so
incredibly difficult. Trying to find new restaurants in which to eat or new
places to shop where he has not been seems so wrong…trying to create
new memories without him hurts deeply.
Habits are hard to break; I often find myself mindlessly trying to
accommodate Noah in my daily coming and going. Using the back burners on the
stove instead of the front ones, making sure the laundry room light is on before
bedtime (just in case he sneaks into our room at night and needs light to guide
him), reaching for his favorite juice at the grocery store, watching for him
running around the gym after church so he doesn’t escape the room…catching
myself in these moments is heartbreaking. My life has been turned upside down,
and I feel like every bit of purpose and happiness I once had is continually
dripping out of my body; initially it came as an immediate gush, a release of
pressure and emotion, and now it’s just a slow and constant drip. I can
confidently say that John and I will never be the same. Life has given us a new
perspective, and it just isn’t nearly as sweet without our Noah.
I know that I obviously still have purpose, or I wouldn’t still be breathing.
God has given me a desire to serve Him, and now that will just be through a different avenue. I would give anything to still be able to take care of Noah, but because he isn’t in need of me anymore, I have to move on, no matter how wrong it feels.
The beautiful part of this story is that Noah’s memory can be a part of my new
purpose, and though he is not with me physically, his spirit will always live in
my heart and my life will always be changed by his journey. Each day that I am
able, I will share with someone new his story and the motto I have coined for
his life - “Never Forget - Live 100%.” I do find joy in passing his memory on to a person who never had the privilege of knowing him, by giving them a “Pray for Noah” bracelet/directing them to his website/showing them a picture of his precious face. Noah remembered so much; he never forgot a face or an act of kindness. If you played chase with him once, you were sure to be reminded of
that and asked to play it again and again. If you weren’t doing something to his
standards, you were sure to be scolded to try harder, i.e. singing - “Sing louder, Dad!!!” In these days of raw grief and heartache, it’s hard to do anything at 100% except miss him, and love him. But with that motto always in the back of my mind, and his memory in my heart, I will realize exactly the purpose God has planned for me, with John David, and I will run after that with all I that I have.
As for this moment, John and I are planning to place Noah’s memorial stone
tomorrow morning. I suppose this will be symbolic by bringing a finality to his
earthly journey; whenever we think of his death we will remember the place we
rested him, and remember this stone, which reads: The bravest boy who ever
lived, Noah Alexander Crowe, 2/28/08-5/18/12, Proverbs 3:5. This scripture
was one of his favorites, and he would recite it from memory. “Trust in the
Lord, with all your heart. Proverbs 3:5,” spoken with quite a cute speech impairment. It makes me smile to remember Noah saying that, and how God would remind me through those sweet words to trust Him. Even when none of this life makes sense, even when I feel so much emotional pain and torment…trust Him. In this world we will have trouble, but be of good cheer, Christ has overcome the world. I find my hope in Him, because He promises I will see Him, and Noah, in heaven. No matter what this life brings, Jesus will overcome it for us. Whether here or in eternity, only He knows, and why….but nevertheless we do overcome when we choose to trust and follow Him. It’s not easy, especially in the worst moments of my life, but I will do my best.
If you are still inclined to pray for us, please do so, but not for healing as one may pray for healing from a disease. Grief is not a disease, but rather an emotional response to our loss, and this response needs to run it’s course. Pray the our family would be “allowed,” or given permission to grieve as our bodies and emotions see fit. In my experience, I’ve noticed that our culture is not comfortable with those who are grieving because we haven’t, as a whole, been instructed in how to allow or help a person to grieve. I feel like the first
place to start is to really pay attention to the individual and attempt to
discern what they need based on their cues/actions, or when they are having an
ok moment, just ask what they need, and remind that person you want to help. The
most helpful person I have experienced since Noah’s passing is the counselor I
spoke with a few days ago. She was so helpful because she gave me the freedom to
just talk (without interruption) about the ENTIRE experience. She didn’t try to fix anything. She validated my feelings. She wasn’t uncomfortable. She let me cry. And I realize she has been trained to handle people like myself. I just wish our society was a little better at accommodating those who have experienced a tremendous loss.
Maybe we should bring back a few of those Victorian grieving practices, and wear
a black armband or some sort of outward sign that a person is mourning a loss.
That would explain to confused passers by that are wondering why I am crying in
the middle of the cereal isle, that I am not in fact crazy. When I catch myself
longingly watching other moms with their children, maybe they wouldn’t think I’m
creepy if they knew I was just missing mine. It’s hard not to want to scream at
the world, why are you still spinning when my life has stopped! Maybe it’s best that the general public doesn’t know…maybe that will ultimately help me to move forward when I just want to stand still. I said all that to say, please don’t pray for our healing, but pray we can feel and mourn as we should. There will come a day, slowly over time, that we become numb to the pain of missing Noah so desperately, and we will appear as though we are being healed, but know that a person just learns to live with a loss like this. The pain doesn’t diminish, just the ability to feel it.
I wrote some thoughts on emotions and heartache in September of 2011 that I
was glad I came across again the other day:
“I don't think that the healing of God means that He heals us from all the
emotions of pain, suffering, loss, hardship and heartache, etc. because He feels
those emotions Himself, because we were in fact created in His image.
I believe He heals us by giving us a deep sense of pride
and contentment in His plan and purpose, a deep rooted joy that pushes beyond
all emotional states, and just - IS. He is the great I Am. And when we allow Him
to comfort us in our pain and hurt, that basic sense of His being with us and
His purpose for us will overwhelm all the other stuff. The other stuff
doesn’t go away, and I'm sure it will come and go as long as we live, but
neither does He go away, and He will come to comfort once again when the
grief and pain emote themselves over and over. These emotions can almost be
considered healthy, for they give us an opportunity to lean on God’s comfort and
strength, and make us stretch to find the joy (state of being - not an
emotion!) that is so deeply rooted in Christ.”
Now that I’ve rambled from one thing to another, I will close and go about my
day. I just needed to check in, let those who are still reading and praying know
that John and I are still living and moving forward through time, while learning
to live without Noah, no matter how much we hate it, and we are praying for our
new purpose without him to be revealed. Thank you for loving us, we feel that
love every minute, and we pray that God will lead and guide you all as well. I
will keep posting as long as I feel led, and hopefully in the months to come I
will have good news about new projects and endeavors, in Noah’s memory, and in Jesus’ name.
But may the God of all grace, who called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect,
establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever. Amen (I Peter 5:10-11).
He is gone.
My calendar is empty. There is nothing planned for me. I ache and groan at the thought of this day without him. My eyes burn from the tears that speak the reality of his passing. I can't see beyond this moment, and I can't feel anything but sorrow. This desperate need I have to hold his little hand and touch his perfectly sweet, soft face will never, ever again be met in this lifetime. So I cling to his "sleep sock," once his comfort which has now become mine. With it he touched his chubby cheeks and rubbed his sleepy eyes, and I feel like it's the only tangible thing I have left of him that grew with him from infancy.
It feels so wrong to have time to dry my hair, paint my toenails, all those things I seldom could do when I was caring for him. Our home is too clean; the silence here is painful and deafening, and the pain I am feeling is crippling.
Morning is the hardest, because for a fraction of a millisecond after I wake I expect to be surprised that he has stealthily slipped into our bed while I was sleeping. I expect him to ask me for his morning snuggle. Then I remember, my stomach turns while my heart races. There is nothing I can do for him. I am still his mother but my arms are empty; this seems like the cruelest fate of any. But my love for him outweighs any anger and sorrow I could entertain, and his life song will never leave my heart. I miss you terribly, Noah. From my hair to my heels. One can never anticipate the depth of pain that comes with the death of a child. God be with me, Holy Spirit don't leave me. This is too much to bear.
I am angry.
I am angry. Angry may be an understatement. I am angry with a heaping
spoonful of frustrated, mixed with a dash of hopeful. Fold in a bit of desperate
and that is where I have been the past few days. . . hence the reason I haven't
posted a blog. I've been trying to work out my emotions with God's grace without
much success, it seems.
I've watched Noah slowly deteriorate over the past week as the tumors grow; day to day he looses some function that at one time gave him independence and confidence. He has always been a proud little guy, not wanting to cry over spilled milk or even a port access. He didn't want me to help him use the bathroom the other day, so I stood close to the toilet holding his backpack (that houses his morphine pump). He lost his balance and fell off the potty. As I helped him up he forced a smile through embarrassment, saying "I am going to laugh at that, Mom. Yep. That was funny." I know he is not only hurting physically, but his pride has been crushed and he fusses at me if I call him my big boy. He retorts that he is a little boy now. Wearing pull-ups again, he needs a lot of assistance to walk on his frail legs and also is loosing his vision so he runs into things without someone directing him where to turn. His train of thought wanders and he forgets the phrases he is speaking before he finishes them. Last night as he was lying in our bed during one of the few moments he was awake, he told me we needed to take him inside, he needs to be in his house. While John played some of Noah's favorite songs on the guitar he did his best to sing along with a very faint, raspy voice. He hasn't had any fluids through his iv because of congestion/fluid buildup and very little food for several days. His breathing pattern has slowly been changing from day to day; last night I timed 12 seconds between breaths. His pain is what I would describe as borderline severe at times, based on his past expression of pain. Yesterday and today he hasn’t interacted with anyone except during his few periods of alertness in the late evening. Our family just keeps sitting with him, talking with him, reading his favorite books and looking for some kind of communication.
I know it's better for him to be medicated than in severe pain, but seeing him almost lifeless but a deep breath here and there is horrible. It's like hell on earth watching my child suffer and slip slowly away from me, and I don't use that cliche lightly. We have had some sweet moments the last week, as I've noted in the last few blogs and he decided he wanted to go to Toys-R-Us on Saturday for a shopping spree. He did well and sat up in a buggy in order to better see his treasures. Monday evening he had a burst of energy and wanted a prize from Target. He did such a great job that one prize became four and he was able to lay down and "play" with his toys at home. These moments stir up some hope in my heart, but the anger is still there as well. Noah hasn't moved from our bed since Tuesday evening. Last night, he struggled to breathe and gasped for air several times during the night. He doesn't have the strength to cough up the mucous from his chest. These all are indicators that the end of his earthly life is near, whether it be a week or days we cannot know.
Even though I have cried and screamed to God in my heart, and I do not approve of the path He is allowing my family to walk, I am choosing to love God and trust Him through this situation and in my anger. In the same manner I choose to love and trust my husband when I am furious at him (yes, we definitely have our moments) but on a completely different level. I made a commitment to John in December of 2005 to stick with him through the good, bad, and the ugly, and to choose to love him every day of my life. (Marriage is definitely not always fairy tales and pixie dust, and true love is deciding to love my spouse when it’s not convenient for me to do so, i.e. things aren’t going my way, my needs aren‘t being met, life just plain sucks.) That commitment I made should not be broken. In a similar comparison, but on a completely different plane is my commitment to my God and my faith. When I decided that Jesus was the man I wanted to attempt to emulate, God was the Father I needed and couldn’t find on earth, and the Holy Spirit was real, and my Comfort, I was all-in with no turning back. Sure I've regressed in my walk with God, and I've wrestled and worked out my salvation like any other Christian. But there is one thing that I’ve always clung to - His love never fails. After becoming a mother I can see a tiny glimpse of how much He loves me, and the truth of His promise to ALWAYS love me, no matter what. When Noah has acted his worst, called me stupid, told me he didn't love me or want me around, I became hurt ("you hurt my heart!" as he would say). But my love for Noah is never once based on his ability to love me back or his choices to ignore my commands or even his respect for my decisions for his life. My love for Noah grows so deep that neither death nor life, angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing can separate Noah from the love I have for him. Now I am quite imperfect and ignorant, and therefore cannot love perfectly as does my Father God. So if in my imperfect love for my child I can without question love him beyond his own imperfection and ignorance, into eternity, how much more then is my Father God loving me through this anger and frustration, pain and desperation I am feeling right now? NO, I don't understand this suffering my child has been forced to endure, but neither do I understand or claim to even begin to comprehend the way God willingly sent His Son to die as a sacrifice for a sinful world, aka you and me.
In October 2011 after my life was uprooted and moved to Birmingham, I completed a miscarriage and found out about Noah's third recurrence on the same day. In my frustration and despair, God gave me the faith to claim this truth in my journal:
"He may allow everything I have to be taken from me - my son, my husband, my home - and yet He has still given me the greatest gift in the world in salvation through Jesus Christ, despite my unworthiness. This is the ultimate act of kindness and compassion - this is not at all 'fair.' How could I, knowing and receiving this, ever turn my back on Him?"
Right now, my life is not fair. My son’s life is definitely not fair. It is not fair to my family and friends that Noah is suffering…dying. It is not fair to his sweet little friends whose parents are forced to help them understand what is happening to their buddy Noah. It’s just not fair…but such is life. So that’s where I am today, wrestling with God, once again working out my salvation and emotions, begging for answers to questions that I said I wouldn’t ask in the first place. If you see me or write to me and ask, ‘how are you doing; how’s Noah?” please don’t expect a sugar-coated answer. This is real and raw, and statements such as, “Noah is going to a better place,” or “God‘s plan for Noah is fulfilled” are not going to help. I need my son here with me on earth, and unless the Lord reaches down very soon and heals Noah, my time with him is extremely limited. God’s love never fails, and my love for Him will not either…but we have some wrestling to do. Noah needs peace and comfort - it seems like when we reach a good spot for him, his health changes somehow, causing pain/discomfort somewhere and it’s a continuous balancing act with his medications to keep pain under control. John and I need wisdom, as well as peace; there are always decisions to make with end-of-life care, and we still have lots more to talk about. At risk of sounding like a broken record…this is hard. We appreciate your faithfulness to journey with us and pray for us when we feel at our lowest. I will continue to let you all know when things change for us. Much love to you all!
A trip outside
As I posted below, yesterday was a difficult day. Noah was in a lot of pain and slept the entire day away. Just before the sun went down, he woke up and had a boost of energy for a brief time and decided he wanted to go out back to see what all the commotion was about (John and a few helpful friends were putting together a shed to solve some of our storage issues at the moment). He stayed outside for about 5 minutes, but quickly tired and we headed back to the bed. (This is the first time he has wanted to be outside since we brought him home from the hospital on Tuesday.) One of the hospice nurses came by to administer his nightly medications, and after she left I spent some time with Noah just talking with him about the things we do together. I reminded him how much I love having him with me all the time, and basically described our weekly routine step by step as we would live it. Going to school, grocery shopping, library and park time, visiting the church staff and playing with toys at home, etc. In the beginning he would acknowledge me with his eyes closed, with a sleepy uh-huh, or slow head nod, or a "yep." When I verbally walked him through the church, "ran" him into the large room with the drums where the "big kids" meet at night and play with him, his eyes opened wide and he said, "I like to play those drums!" So we continued to talk about what he likes to do and all the youth who chase him and play with him, Kit-Kats and M&M's from Ms. Susan and Ms. Ruth, Mr. Seth's tickle finger, playground time, and all the things that are comforting to him in his daily routine. By this time he had asked me to take him out of the bedroom and to the couch, where he rested for a while longer. When bedtime came John and I moved him back into our bed and just as my head hit the pillow something happened in him and he exclaimed "Hey Mom!! I love you!!" as enthusiastic as he could be. His eyes were wide open, very little problem tracking, and he talked a mile a minute..about anything he could think of...for about two hours. It was a wonderful gift to us. It was really him, with his sweet comments and he even laughed about a silly memory we have, saying, "that was so funny!" This was the first time I've seen him laugh in a week. While giving him his midnight nausea medicine, he looked at me and said, "Hey Mom, you know what Jesus says to you? He says, you are taking good care of me, and He loves you!" He said something similar to John as well. During this time he was free of pain, and periodically during the night he would wake and continue his happy conversations.
This morning his head is hurting again, and he has been sleeping most of the time. I am praying for another gift today like we received last night. God is good and faithful to supply all of our needs, and my love tank is full for this day. Thank you for your continued prayers for peace and healing, and John David or I will keep updating as we can.
With love and a grateful heart,
It's just not right...
Today Noah is in a lot of pain. The morphine drip rate was increased, and he has been sleeping all day. We knew that his body may begin to tolerate the drug, and it would have to gradually be increased. We are not sure if that is the case here, or if tumor growth is causing the pain. It's difficult to watch without being able to help. John and I have done a lot of praying today, asking God to heal him and take his pain away. He isn't able to walk without stumbling or keeping his balance, so he needs assistance getting to the bathroom and getting around. We see a new change in his body and mind everyday, and I feel that he is depressed about the changes in his body. He doesn't have much drive to get up and move unless someone is here to see him or he gets a new prize. John and I had to "sponge bathe" him this morning; it reminded me of when he was an infant, and was so helpless and small. This is not the general order of life. He should be growing and I should be dying. He should be taking care of me and John down the road, watching us regress as our bodies wither. Not this way...this is just not right. I am hurting today, so I looked back on a few posts from the past to try to strengthen my spirit. Here is what I found:
From a post I wrote about one year ago: "God is so good, and this battle is not only ours but His…and in that we find comfort. The Lord can heal Noah through a number of means, but whether that is in this life or eternity we cannot say for sure. We are not promised tomorrow and we don’t know what a day will bring forth (for ANYONE), so we live each day to the fullest and spend as much time together as we can." This is an uncomfortably real and present truth that we are facing tonight, but despite the fragility of life we have a peace that passes all understanding, because we know WHO is in control, WHO we follow and trust, and WHO allows each and every breath that fills our lungs. Not one of us is promised that we will make it home from work, school, or that quick trip to the grocery store.
From March 2011: "While reading today, the story of Lazarus jumped out at me and as I read I was encouraged. Jesus said to His disciples about Lazarus,'this sickness will not end in death. No, it is for God's glory so that God's son may be glorified through it' (John 11:4). Jesus loved Lazarus, and yet He tarried, and essentially allowed Lazarus to die only to raise Him from the dead, 'so that you may believe' (John 11:15). I don't doubt His power and ability to heal, but I also know that He may tarry and He is often 'slow to act' according to my watch. As I wait on the Lord to completely heal my son, I am encouraged by the letters and comments I receive from so many of you who are praying and believing with my family for a miracle. And I see how even now God is glorified through the work He is doing in Noah. Thank you for all you are doing and have done to show us the love of Jesus."
From December 2011: We need a miracle healing from the Lord. Noah will do such great things for this world, and for You, if You would only give him that chance. He will be a man of integrity and leadership, like his dad. Noah will speak such a great witness because of what You will do in his life. He will be a man who follows You at any cost. I have prayed these things over him for almost 4 years and now is Your chance to show so many that You have heard their prayer, and Your answer is "YES." This answer of "YES" would be such a small thing for You, You who can just think a thought and it will come to pass. You who know every hair on every head, God You can just whisper the word and cancer will be gone. This would be such a small "YES" for You, but such a life-changing "YES" for me, for John, for Noah....and so many who love him and pray for him. We cry to You Father with everything we have for You to do this for us. We cast out anything that is not from You that is attacking Noah's body, we tell it that Jesus is Lord of Noah and nothing else. We say to this cancer to flee, and torment this child and his family NO MORE. Jesus You are his healer, and God You are his Father, and Spirit You are his comforter. We pray for healing, in whatever form it may come in. We pray for You will, Father. And we know that Your peace passes all understanding, and we ask for that as well. You are always good, no matter what circumstance we may be in. We may not understand Your ways, or Your love, but we know neither one of those fail. So to You be the glory in Noah's life, and may Your will be done. In Jesus' name. Amen, so be it.
"Again I say to you that if two of you agree on earth concerning anything that they ask, it will be done for them by My Father in heaven. For where two or three are gathered together in My name, I am there in the midst of them” (Matthew 18:19-20).
Last trip home
Last night we were discharged from the hospital to the care of a hospice group in our area. After we arrived home it took a while to set up equipment, sign paper work, and receive instruction from Noah's nurse. Once Noah was given all his nightly medications the nurse left John David and I with the night shift. We have never experienced infusions outside of a hospital setting, and Noah's new backpack (plus an additional pack of fluids after 8pm) have almost become a new member of the family that cannot be left behind! Noah hasn't realized that the bag has to go anywhere he does, the bathroom, the bed, the floor to look at toys...I'm praying he will accept this new discomfort and see it as his helper and not a hindrance. Our night was long and somewhat sleepless due to the pump malfunctioning and Noah vomiting, but if today is any indication of the future we are on an uphill climb for now. He slept late this morning, but woke up in time to welcome his aunt and uncle, and he spent about 3 hours sitting up on our sofa visiting with them and showing off all his new Star Wars toys that were waiting for him on our front step last night. Since being home Noah has done more walking and had longer periods of alertness. The hospice nurse will come each morning and evening to give him IV medications and set up his nightly fluids, and also will also be on call for anything we may need in-between. This is such a stressful experience, and I had to ask God this morning for strength only for the day. I cannot try to imagine the days ahead because I overwhelm myself. I had a few minutes to myself this morning while Noah was sleeping, and I thought about all of the mothers who care for children who require the special care similar to what Noah now needs, mothers who do it day in and out because their child has a life-long illness, and I just cried for them, and for myself. This is hard, and my body is weary after only one day. But I know I can do this, I have seen others do it, survive it, and continue to give God praise, even though the situation is devastating. God, just give us strength. Lord keep sending your precious servants to help us, whether it be family or stranger; we are so humbled by and thankful for the acts of kindness we have experienced and the love You have shown us through so many. It is good to be in this family of God, where we are not divided by denomination or theology, but united in love for the Lord and love for a little boy named Noah. Thank you for walking this road with us!
Sweet moments in the pain
In order to understand the sweet significance of this picture you will need a synopsis of the past several days. Since about Saturday afternoon, Noah has been having these waves of irrationality and emotional distress that are very difficult for me and John to handle. He gets really emotionally involved in the shows he enjoys watching and cries if characters are in trouble. He can't make a decision about what he wants or needs, and he says things that don't make very much sense. He has often told me and John that he doesn't love us anymore. We have come to understand that these changes in his personality are most likely from the medication and the changes taking place in his brain, affecting his frontal lobe. We have also learned that the best way to handle this change is to stay patient, remain calm, and try to appease him and comfort him to the best of our ability, according to what we think he needs at the time. We know that Noah isn't telling us he doesn't love us...that's not him at all. But it is a difficult and stressful encounter, and thank goodness when they come they will also eventually go away. So when he begins to wake up from a long sleep we don't know really what to expect from him: our sweet Noah and his funny, playful personality or the "Morphine Man" who is quite unpredictable. In the moment I took the picture, Noah had just woke up and said he needed to snuggle Dad. Neither John nor myself have had a true snuggle from him in days, because since Noah has been sick he has needed his space. It was a very sweet moment.
Last night started what seems to be a slight upward climb. Noah's pre-school teacher "Ms. Ehwishabet" (Elizabeth) recorded the class singing one of Noah's favorite songs and then had each classmate say hi, with a final wish that he feels better and an affirmation that he is loved. Noah was sleeping when I watched it, but his eyes quickly opened and he said, "I wanna see." Keep in mind he had been asleep for the majority of the previous 48 hours. He watched the entire video twice, sitting up, and then said, "I wanna go with you, Dad" and agreed to ride in a wagon while John and I walked around downstairs. Seeing his classmates, teachers, and knowing that they miss him and love him gave Noah the hope he needed to push through some pain and lethargy and get moving. It was awesome. He has still had pain and vomiting last night and this morning, but his morphine drip was dialed down a bit, and with an increased steroid dose he feels better now than he has in almost a week. He has been awake much more today, interacting with the doctors, nurses, and us in such a sweet way. Dr. Reddy called him "kiddo" today and he replied, "No, that's not my name! My name is Noah Crowe." We caught a video of him saying, "Hey Daddy, I..love...you. So....much." (His speech is slower as he stutters and sometimes struggles to find the right word.) My heart just wants to explode in these moments, and I am etching them in my memory. Our hospice nurse and the doctors on call are working to get Noah a small pump that he can carry with him, and hopefully get him set up with that so we can be on our way home later this afternoon. Noah is afraid to go home today, he told us, because his head is still hurting. We are doing our best to reassure him that the special nurse that will come to our house is going to take care of him, along with Mom and Dad, just like he's being cared for here...and with a much more comfortable bed and lots of toys! Please pray that the transition from hospital to home is an easy one for us all, and that we are all comfortable with the care that Noah will receive there. We've seen what prayers can do, so please don't stop! Lots of love to you all.
"This child can face uncertain days because He lives!" - Hymn "Because He Lives"
In the hospital
Today has been hard. The doctors have decided to stick with morphine and increase his dose in hopes this level will keep his pain under control. He is ready to get home, and so am I. Noah was up and about, feeling a little better yesterday morning and mid-day, then the evening time brought more pain and sleep. Today he has been sleeping all day, with some vomiting, and just now he is sitting up and trying to eat lunch. He's lost over 4 pounds because he hasn't been able to eat much or keep it down. This morning was a struggle for me; I have seen Noah suffer with side effects from chemotherapy and radiation and surgery as we were trying to save his life. But to see him suffering from the pain caused by tumor growth and pressure, resulting in nausea and vomiting, knowing what the end result will be save a miracle from God is just too much for me to handle. Please keep praying that he will find relief soon.
There is a young lady named Taylor fighting for her life in Texas right now; she is from the Florence, AL area. She just had one of her lungs removed because of a long fight with childhood cancer, and the lung she has left isn't functioning like it should. She may have to be placed on an echmo machine, and is being transferred to another hospital there in TX. Please also pray for God's mercy on her life, that she would heal and recover quickly. You can read about her fight here.
Thanks for your prayers, gifts and encouragement. We appreciate them all!
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.