The great paradox of my soul

My soul is in such a paradox these days. It is so hard to describe. Its like we’re living two lives. One of them has to do with living and the other has to do with dying.

I mean, here we are at Disney, a place that is filled with magic, wonder, and awe…a place where dreams do come true if you just believe. And yet, here I am pushing my daughter around in a stroller because she can’t walk because of the tumors in her leg that seem to be slowly taking over. Here I am watching my daughter get pixie dust poured on her head and being told that all she needs is some faith, hope, dreams, and this pixie dust and her wish will come true. And I hear her make her wish that she would feel better. And we walk away as another little princess is in line to be told the same thing.

Please don’t get me wrong…I am thankful, very thankful for the Make -A Wish foundation to have sent us down here for the week. And with the little energy that Susana does have, she is really enjoying it. But like I said, she only has a little energy. Her zeal and excitement just isn’t there any longer. And yet we are thrust into one of the places where zeal and excitement are the only thing we see all around us.

And then we want to be excited simply for Isabela. That big sister is AMAZING! And we know that this trip is very much for her as well. And so, on one hand, we’re trying to cater softly to Susana and just make her as comfortable as possible throughout the day, and on the other hand we’re trying to be super excited so that Isabela has a wonderful time. And what a paradox of emotions that is.

I look around at all the other children there with their families. We look exactly like so many of them, except for this white pin that each one of us brandishes. A little pin that separates us from the thousands upond thousands that surround us. A pin that says “Make A Wish.” A pin that gets us to the front of every line so that we don’t have to wait for anything. A pin that gets us VIP treatment when it comes to meeting all the characters. A pin that gets us free parking at any one of the parks. A pin that gets us free admission. And yet it is a pin that I despise having to wear. Because those three words speak volumes upon volumes of the pain and anguish that sit beneath our smiles and forced actions of excitement. Yes friends, even Disney seems to lose a lot of the magic and wonder when brandishing a “Make-A-Wish” pin. So, its just kind of hard being in the midst of all of it.

We wake up in the morning and rather than jump up joyfully with excitement and anticipation, we cry. Our hearts are just burdened too much. We cry out to the Lord and ask Him to show mercy and kindness to our little girl. We cry and ask Him to give us the strength to go out and have a good time.

Regarding this trip, many people told us, as we also told ourselves, “Just have fun.” But the truth is that we can’t. We can’t “just” have fun as we really would so love to do. Yes, we are having fun, but not “just” fun, as in nothing else but fun. No, there are too many other things that are harsh realities that “just” will not go away even while staying a week at one of the “most magical places on earth.” We can’t “just” have fun when we see Susana falling asleep in her stroller all the time, not because she is tired from all the fun and excitement that she is having, but rather she is tired because the tumors are invading her tiny little body. We can’t “just” have fun when we try to get her all excited to meet her favorite Disney princess, Cinderella, and she just whines and says that she doesn’t want to meet the princesses. We can’t “just” have fun when we finally do meet the princesses and take lots of pictures, yet we see Susana just rather subdued in many of the pictures. Oh how I wish we could “just” have fun, but it simply is not possible. This is our life, whether in our own home or on a Disney vacation, and we have to deal with the reality

Again, we are thankful for Make-A-Wish and for “Give Kids the World”, the village where we are staying. The place is wonderful. They roll out the red carpet for every child and family that stays here. Its just the paradox that kills me. “Make a wish”…well, I have but one wish right now…and it seems like it is not being granted. “Give kids the world”…yet possibly in months the world as she knows it will be far removed from her. “Make memories that will last a lifetime”…yet her lifetime looks as if it is drawing to a close before it even really began. So, its just the paradox of it all that is so difficult. The people, the organization, and the support has been wonderful for our family. We are thankful, but its just that. Who wants to have to be thankful for something that indicates the greatest pain and suffering ever?

And what a paradox this has been spiritually. I have heard so many stories and read so many comments about how people, through hearing about our trials and seeing God being glorified in our lives, have been coming to the Lord, returning to the Lord, restoring relationships that have been broken for so long. And my heart floods with an incredible joy when I hear of such reports. I give such great praise to God because that is what we want for our lives – to see the name of Jesus praised above all. So, on one side, my soul is in the greatest anguish that it has ever known as we walk this road of suffering with Susana, yet on the other side, it resounds with incredible joy that the Lord receives when His name is being glorified. It is so hard, and rather weird, to experience such emotions simultaneously.

What a paradox it is for me to think that my daughter’s dying is the tool that God is using to bring life to many people. As her life is slowly ebbing away, life through Jesus is being given to people whose lives themselves were ebbing away. I would never have thought in a million years that this is the way in which God would use our family to bring Him much glory. And yet, it seems to be so. And to that, we can only continue to say, as Mary did when being told of God’s plan, “Lord, may it be done as You declare.” Though He slay me, yet will I trust in Him. No matter what.

And then I think of the life of the Christian and realize that our lives are supposed to be a great paradox. Jesus prepared us for it. He reminds us that those who are last here on earth will be first in God’s kingdom. He tells me that if I want to save my life, then I must lose it. He tells me that to follow Him into eternal life, I have to pick up my cross and die to myself every day. And of course, Jesus modeled that to those that would follow Him. God’s plan for Jesus being born to life was simply to die. You can’t get much more of a paradox than that. And what a paradox it is for the Christ follower to walk by faith and not by sight. That in and of itslef causes our lives to be such a paradox. For we are called to walk (think, believe, act) upon what we don’t see rather than what we do see.

I “see” my daughter suffering and in great pain. It doesn’t “seem” fair. I “see” her life here on this earth that “seems” to have just begun. I “see” her dying. It “seems” totally tragic. Yet, Jesus gives me eyes of faith to believe something that I don’t “see.” And in faith, I believe that God’s plan is absolutely perfect. He does not make mistakes. This does not catch God by surprise. He already knew the number of days that she would have here on this earth to fulfill His purpose for her life. She will be welcomed into the arms of Jesus, a most loving and precious Savior, and she will be with Him forever in perfect health and perfect life. We will finish our race of faith here on this earth, and then one day, we too will be welcomed into those arms of Jesus and we will also see our daughter again. Suffering is what God chooses to use often to bring glory to His name because only in a real and true faith in a real and true Christ can we truly give real and true praise and adoration to God in the midst of such great pain and anguish of soul.

And so, possibly soon, Susana’s faith will indeed become her sight and she will see perfectly. She will not wrestle through the paradox that the Christian life is here on earth. But for me, what I “see” must not get in the way of what I believe and how I walk. And this is where lies my daily battle, to walk by faith and not by sight. O the great paradox of my soul.

Oh, and one more paradox in our life now. Just as it seems apparent that the Lord is calling one of our children home to Him, at the same time He seems to be giving us another. Maria is pregnant. We found out 4 days before we received the news about Susana. I was scared at the time that I found out because I said, “Lord, are you giving us the gift of a child because You are about to take one of ours? And I saw that it would be an act of God’s mercy if that were the case, but I didn’t want to focus on that because I knew what that would mean. And sure enough. 4 days later, we found out that Susana’s tumors are back and overtaking her tiny little body. And so, as He calls one away from us temporarily, He is blessing us with another temporarily. We are very excited, especially Isabela. We were not planning for it even though I have said moreso in the last few months that I really would love to have another child. So, it seems like the Lord is unfolding His perfect plan. And in the midst of what will be a mosty painful season of grieving, He will give us the joy and anticipation of a beautiful gift. Yes friends, my God is merciful! So, pop on over to Facebook and make sure to say a BIG congratulations to my beautiful bride.

P.S. – Disney pics coming soon.  No wi-fi at our place.

32 thoughts on “The great paradox of my soul

  1. Very very well said…I have nothing but tears and such thankfulness in my heart that as you and your precious family walk through the land of disney you have eternity stamped on your hearts.

    Rom 8:18 For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.

    The Lilleys….

  2. Cody & Maria,

    My heart is still breaking — I saw & felt that paradox before you got there — my mother’s heart just knows.

    My friend Wendy, who went to Heaven 3 years ago, went to DW with her family in a similar circumstance, except she was the mom who was leaving. A lot of bitter with the sweet, a lot of the paradox …. except it wasn’t for seeing her child suffer, but the knowing of the suffering of her children through her illness and departure.

    All I can do is pray, because to Whom else can we go? He has words of eternal life. Aching and weeping with you all. A bit of rejoicing at the coming gift, tinged with the pain.

    marji, mom of Naomi

  3. Because of the LORD’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.

  4. I continue to hold you close in thought and prayer. I ache thinking about Susana’s pain and for all of you who love her so much. At the same time, I thank God for the new life and must also keep reminding myself that God knew us before we were ever thought of and He loves us more than we could ever love ourselves. Our earthly understanding cannot comprehend God’s plan but perhaps on that day when we finally see Him face to face, we will finally see.

  5. Cody and Maria… my heart aches for your family as you describe your visit to Disney.
    I know from your postings how much faith and strength you are taking from the Lord and it just makes me feel like such a weak Christian. My family will continue to lift you up in prayer!

  6. Cody, Maria, I am so thrilled that God is delivering to you a new life, but I am sorry it is so bittersweet. I know that Disney is hard, but I am excited that one of your kids has been able to enjoy it. It gives her a desperately needed minor break from all the tragedy that has been happening. Cannot wait to see pictures. God bless each of you.

  7. Cody,

    Though your words are painful to hear about Susana, I rejoice with you and your family about the news of a new baby. I know you and Maria and Isabela are going through waves of emotions and grief; I just can’t imagine… Your words are such an encouragement to those that are struggling with various trials; and it reminds us to fix our eyes on the one who feels and knows our pain and suffering, our Holy, Heavenly Father. Your words reflect what deep abiding faith and trust is, in the midst of undescribable pain and grief. I continue to cry out to God for healing of precious Susana. I will continue to pray for you all and I weep with you. Rest in Him.
    I will pray that you, Maria, and Isabela will be fixed on what is unseen rather than what is seen, and have a faith that is rock solid and unshakable. (“what I “see” must not get in the way of what I believe and how I walk. And this is where lies my daily battle, to walk by faith and not by sight.”) I pray that Susana will have joy and unbelievable strength this week. As you know, God is more than able, He is in control, and His will is perfect. May He sustain you all in the upcoming weeks, and give you the peace that surpasses ALL understanding. God Bless you all abundantly. Many are around with open arms happy to help you when you need it. We all are lifting you up to our Abba Father Who will supply all of your needs according to His purposes. PRAYING and TRUSTING!!!!

    “He will have no fear of bad news; his heart is steadfast, trusting in the LORD.” Psalm 112:7

    The King of Love My Savior Is

    Words By Henry W. Baker (1868), Music by Greg and Nan Wright (2007), Public Domain

    Verse 1
    The King of love my Shepherd is,
    Whose goodness faileth never;
    I nothing lack if I am His,
    And He is mine forever.

    Thru all my days, thru every joy and trial
    Thy Goodness faileth never.
    Good Shepherd, may I sing Thy praise
    Within Thy house forever.

    Verse 2
    Where streams of living water flow
    My ransomed soul He leadeth,
    And where the verdant pastures grow
    With food celestial feedeth.

    Verse 3
    Perverse and foolish oft I strayed,
    But yet in love He sought me,
    And on His shoulder gently laid,
    And home rejoicing brought me.

    Verse 4
    In death’s darkvale I fear no ill
    With Thee, dear Lord, beside me;
    Thy rod and staff my comfort still,
    Thy cross before to guide me.

    For Susana: “HE KNOWS MY NAME”

    I have a maker
    He formed my heart
    Before even time began
    My life was in his hand
    He knows my name
    He knows my every thought
    He sees each tear that falls
    And hears me when I call
    I have a Father
    He calls me his own

    He’ll never leave me
    No matter where I go

    He knows my name
    He knows my every thought
    He sees each tear that falls
    And hears me when I call

  8. You and your family have such a beautiful heart for the Lord. It is so encouraging to me as a Christ-follower, wife and mother. Reading these posts have caused me to live each day with my family to the fullest and to be sold out for Christ. I am so saddened by the news of Susana and I will continue to pray for God to heal her this side of Heaven. You will never know all of the people that Susana has touched and how incredible it is that in such few years of her life she has reached so many for Christ through her story. Congratulations to you and your family on the baby growing in Maria’s womb. How gracious our God is.

    The book of James speaks of counting it all joy when we encounter various trials and I see that in you and your family. Thank you for showing the world what it means to put complete faith in Christ. I pray that I will be able to do the same thing in my life.


  9. Words fail me my brother in Christ. What a challenge you face as you walk this road with Susana. My heart breaks for you. Know that a sister in Christ is praying for you and your family in California…..Elisabeth

  10. Bittersweet. All of it, everything, just seems bittersweet right now. Joy and sorrow, happiness and pain, all of it together for you at the same time. I will continue to pray for all of you. Wish I could hug you in person, make a meal, do something. I tend to the Martha side of things rather than the Mary. But I will sit, and be still, to lift your names to Daddy.

  11. We have stayed at Give Kids the World and wore that same pin, and yes, it is a paradox. Your only “just” is to just breathe, just be loved and love, and just be as honest and raw as you are. There is no magic to make you feel better. When we returned from our trip, I stayed up all night making a scrapbook of every memory and now I cherish that scrapbook and the memories that it shares. It is even a paradox that after reading your blog, I too remember feeling those twisted emotions – being there for the rest of the children, forcing smiles, seeing the pained faces on the other parents….but yet my memories are sweet. My mind forgets the struggles as I look at that scrapbook and only remembers the laughs. Yes, I wish that Meryl had been able to do more, but I am so thankful for the memories of that trip. You are an amazing testimony. Thank you in the midst of your pain, that you are witnessing to others.

  12. I am so thankful for you and your testimony! You are changing my life, though I have never met you! I am hoping you enjoy your time with your family! Enjoy it.
    Congrats to the family for a little one on the way! 🙂

  13. Cody and Maria,

    Amen. Amen. A thousand amens. Jesus is our Great Paradox, isn’t He?

    As sure as He was in anguish and agony in the garden before His pending death, as sure as He knew the freedom to be real with His Father and cry out in pain and grief….

    He also knew the truth expressed in 2 Cor 4:15-18.

    Praying continually,
    The Copples

  14. The way you lay your heart open for all of us to see your pain and your vulnerability reminds me of just how tightly the rest of us hold on to our hearts and don’t let anyone in. Thank you for letting us in and for showing us how to be open and honest – in pain and in joy. I pray for you and Maria and Isabella and the new baby. And, I especially pray for Susanna. She is such a gift to you…and to us! Katy

  15. I too went to DW at a sorrowful time. My husband had just died of cancer. We were given the trip as a gift. My two children, 9 and 12 yrs old, and I did our best to have fun, but it was truly a paradox. The ‘magic’ wasn’t working for me. But like Vivien and Tom (see above comment) I too scrapbooked the journey…and I am NOT a scrapbooker! But I felt that through the pictures we might remember the trip with joy. And we did. I wish that for you. And congratulations on your new little life.

  16. Oh, how my heart breaks for you all.

    Lord…be merciful…be the great comforter to Susana, Isabella, Cody and Maria.

    I’ve never had the joy of meeting your little girls, but I think of them so very often throughout each and every day. And I pray for them, and for both of you, each and every time God brings your family to mind – and He does so constantly!

    I don’t like this, and I don’t like what’s happening to Susanna, and to your family. And I believe that God is faithful, and knows what He is doing – what He is allowing. But I also want to “see” a different reality for your family…not the one that you all are having to experience. And I am so ready for the Lord’s return!

    I will continue to trust in Him – in this, and in all things – and I will pray…pray…PRAY for you constantly. Your little girl, and your family, and the sweet little blessing in Maria’s womb are all heavy on my heart. I will not forget to lift you all up…

  17. I am praying for you and your family. Your story is an amazing testimony to God’s life-changing power.

  18. praying for you all from china…. crying as i read your messages… sharing them with my husband and children….. our hearts truly break with yours….. but praising God for his work in your hearts…. HE is truly glorified in your response to this suffering.. press on!! and we’ll keep praying!!!

  19. Cody, I am still not able to find Maria’s page on FB. Please tell her I rejoice in the new life and pray for health and happiness for it all his/her life. Please also tell her I am sorry from the depths of my heart. When you come home if you need ANYTHING we will be there for you!

  20. I am rejoicing in the thousands of hearts sweet Susana has touched! Cody, you recently said this blog had 20,000 visits. At 4 years old, Susana is bringing more people to Christ than most could in a lifetime. The photo of her pointing up to God before more testing is such an inspiration…..she is so trusting & faithful!!! We are praying, and more praying, for you all (including blessing #3). We can understand how difficult this trip must be.
    much love to you all!

  21. You have an amazing gift to express the feelings, and thoughts of parent in an extremely hard place. I have been a peds hem/onc RN for more than 20 years. Thank you for your willingness to share. I will pass your blog on to many others when they get walk the path of letting go of their beloved children.

  22. I just wanted to thank you for sharing your heart and family with us all. You are such an inspiration to us all and I thank God for people like you. Please know I am praying for your family and for God’s peace that passes all understanding. I am praying that many souls are saved through your faith and through Susana’s beautiful soul.

  23. I am thinking about you all and praying for you all. Praying for a peace that surpasses all understanding, a mighty, unshakable faith and trust, grace, mercy, strength, and wisdom…..

    “Hear my cry for mercy as I call to You for help, as I lift up my hands toward Your Most Holy Place.” Psalm 28: 2

  24. Cody, I have been trying to get the lyrics for this beautiful song, but unable to do so. You can listen to it on You Tube….Skip to “3:05” to listen to it.
    “My heart has a thousand words to say, please Oh Lord turn burden into praise….” Jesus, I lift My Eyes by Pat Little Band.

    “My comfort in my suffering is this: Your promise preserves my life.” Psalm 119:50
    “My soul is weary with sorrow; strengthen me according to Your Word.”
    Psalm 119:28

    Lamentations 3:19-33
    19 Remember my affliction and my wanderings,
    the wormwood and the gall!
    20 My soul continually remembers it
    and is bowed down within me.
    21 But this I call to mind,
    and therefore I have hope:

    22 The steadfast love of the Lord never ceases; [1]
    his mercies never come to an end;
    23 they are new every morning;
    great is your faithfulness.
    24 “The Lord is my portion,” says my soul,
    “therefore I will hope in him.”

    25 The Lord is good to those who wait for him,
    to the soul who seeks him.
    26 It is good that one should wait quietly
    for the salvation of the Lord.
    27 It is good for a man that he bear
    the yoke in his youth.

    28 Let him sit alone in silence
    when it is laid on him;
    29 let him put his mouth in the dust—
    there may yet be hope;
    30 let him give his cheek to the one who strikes,
    and let him be filled with insults.

    31 For the Lord will not
    cast off forever,
    32 but, though he cause grief, he will have compassion
    according to the abundance of his steadfast love;
    33 for he does not willingly afflict
    or grieve the children of men.

  25. this story is so inspiring to me. and it suddenly broke my heart.
    i’m doing this thing at school to support things like this, and november 14th we are doing a school wide walk. May I walk in honor of your little girl?

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