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 every.single.day.
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.