Reaching for Daylight

 

     Humans have the innate ability to take things for granted. What does that mean? "Take things for granted." It means to accept or view said noun as a right or privilege. I'm not being unkind, but truly there are so many things we take for granted. I am realizing there are more things than I can count that I personally take for granted. We walk through life expecting certain things, and things go unnoticed because they are the standard - the baseline to life. I know that as life continues on, I will continue to take many things for granted, but I don't want to.

     We have been on 5200 going on 4 weeks now. That's nothing compared to some here, but a lot compared to pretty much everyone outside the unit. We have been separated from our family, our jobs, our lives, our dog, even the sun. Yes, I said the sun. Our son has been in this hospital unit being torn down and put back together. He has handled it amazingly well, but he has still missed being with his siblings, friends, dog, and yes, being outside. I will catch glimpses of him staring at the sky, or even out the window of our corridor. (Which, I'm pretty sure has scared the crap out of people passing by. Which I find quite funny. You have to find the humor in this place, or you won't make it. More on that another time.) We have come to realize that our lives, and the way we live them is not our right - it's a gift.

     Nothing showed me that more, than the experience we had yesterday. Yesterday, our son received a pass to go outside of the unit. He has been doing so well, that the Dr. decided he could go off the unit for 2 hours. He had been reaching for daylight since we got here, and now he was about to touch it. When we opened the door to exit the unit, Fenix slowly stepped across the threshold. You would have thought he was taking his first steps on the moon. In his mind, it probably felt like that. He turned to look at me, and I could see the smile behind the mask. I held back tears as we changed our shoes, and took our son to the elevator. He smiled the whole way down to the first floor. We walked to the door leading outside to the courtyard, and swung it open. The fresh air and sunshine blasted us in the face, and Fenix's smile got even bigger as he quietly said, "I'm outside!" He didn't care about the looks he got, or the smiles of sympathy given, our son was outside. Again the tears tried to block my view. Rude. I pushed them aside again and again as we made our way through the hospital campus. Just before going back to 5200, we decided to go up to the 9th floor to look at the helicopter on the roof. We saw one take off, and the other perched there looking quite heroic. At that moment, a woman walked in from the pad. She was so kind and welcoming. She checked a few things on the flight schedule, and then asked if Fenix would like to go out to sit inside the helicopter! I don't think she even finished asking before he blurted out, "YES!" She spent at least 20 minutes showing us the helicopter. She fastened Fenix in the seat, then let him wander about for a bit. She showed us the city from the rooftop, and when it was time to go, she gave him the sweetest hug as if to say she was sincerely glad she had met him. I think she was, and we were certainly glad to have met her. As we walked back to the elevators, he let out a huge sigh of sheer euphoria, and whispered under his breath, "That was so amazing!" Que the tears...

     We have been waiting for engraftment, which he achieved, waiting for healing which is in the making, and waiting for daylight which he found yesterday afternoon in all its glory. To say we take things for granted seems like an understatement to me these days. Our days and nights on 5200 has shown me that. I walk around completely unaware, or even worse, unappreciative of the life I've been given; unaware of the gifts that are bestowed on us each day we draw breath on this planet. I am choosing to pick my head up. I will choose to look and find the beauty in each day given. I will choose to see the mercy in the mess. And I will choose to find the joy amongst the pain. We have been given life. Some of it we have squandered, and some we haven't. My question is, "What are we going to do after 5200? What are we going to do when there's no more disease; when there is nothing holding us back?" The answer? We are going to live, and live well. We are going to run our race like we want the prize. And we are going to wake everyday reaching for daylight.

Until next time...

 

 


  

 

                     
 

 

And last, but not least...

                                                       

The sad, but possibly scary pic of a child peeking out of the “Restricted Area” corridor. 

P.S. The next big test is his chimerism. The engraftment says he has survived transplant. The chimerism tells us how successful it was. Prayers welcome!

Worship in the Waiting

                                                                         
     There is no better place to worship than in the dark. I don’t necessarily mean the physical dark, though you could. I mean seasonal, spiritual, or emotional darkness. Worship takes the focus off of the darkness, and invites the Light in. It changes our posture from being dominated by our circumstances, to being surrendered to the One who can carry them. Imagine being in a dark room. Once you draw back the curtain, not only does the light dissolve the darkness, but there’s a view of what lies beyond the dark room you’re standing in. Worship is that window to hope, perspective, and the light. It allows us to see past our hurt, our fear, or our circumstances, and see truth.

     Today is day +11. Fenix is doing very well. In fact, he’s doing so well, that the nurses and doctors are quite surprised. However, we have seen rougher nights. He has had nights of severe stomach pain when all he could do is lie in a ball and cry. He has had bouts of puking that have lasted all night long. There have been fevers. He has had fits of rage from the misery of taking meds and doing mouth care because it makes him feel worse. He’s now losing all of his hair. All this to say, he is still doing better than most. It goes to show how dark circumstances can get surrounding disease and treatments. The worst of nights he just had me crawl into bed and hold him as he suffered. Those nights I would just sing. As I sang I would worship the One who entrusted me with such a gift; such a calling. I would thank Him for my child, and even for the journey. I would sing, and as I sang our son would fall asleep peacefully. As the days got rougher, he started to ask me to pray with him each medicine he would have to take, or each mouth care he would have to perform. We would pray for the doctors and nurses, and for each child and family here. We would pray for healing and hope; blessing and favor. He is learning that even though there is pain, and even though there are things that he doesn’t want to go through, he can hold onto God. He can have hope. And he can even have hope for others.

     The truth is, we weren’t created to stay where we are. We weren’t created to remain hurt, broken, or carrying the burden of darkness. That’s not our bag to hold- it’s His. We were created for a purpose; for a mission. We were created to shine, and to reflect Him.

     So here we are - waiting. We are waiting for engraftment. We are waiting for healing. We are waiting for daylight, and we are waiting for the future. While we wait we will worship, because that’s what helps light up the dark, that’s what helps find truth, and that’s what helps employ strength. We were designed to worship, and so were you. Whatever you are waiting for, wherever your journey is taking you, you are not alone. We are all waiting for something. So while we wait for whatever breakthrough is coming, let’s worship in the waiting.

Until next time... “I will lift my hands while I’m waiting. Louder than my fears I will sing. May my heart ever be reminded, You are good, You are good...” - Life Church Worship
   
  https://m.youtube.com/watch?v=yspGtoYLbdE

From Darkness to Light...And the Shades in Between

     What do you do when one of your darkest fears comes to life? If you would have told me a year ago that I would be sitting next to my child while he gets chemotherapy, prepping for a bone marrow transplant, I would have never believed it. But somehow here we are. I’ve had moments of “why us?” and moments of “how did we get here?!” I’d be lying if I said I haven’t been scared or even angered at times by this whole mess. There have been moments when I’ve walked upstairs, my eyes have caught sight of him lying in bed, and I have become unable to move. There have been moments when “normal” has made me cry instead of exhale. There have been moments when I have gotten angry wondering why I am no longer God’s favorite child. I have had to answer the question, “Could I die?” from my son and his siblings. We have had to tell our family-loving children that there’s a big possibility that Fenix will not be able to have children. (We have caught many of their tears over that one.) We have had to reassure them that God has not left us, nor will he. God has not “done” this to Fenix, or our family. 

     In Romans 5 it says that “suffering produces perseverance; perseverance, character; and character, hope.” I cannot explain the details of how or why this is, but it’s true. I think it plays out differently for each of us. Our family has/is walking through something that has caused a bit of suffering, but has prompted us to press on, while refining our character, and ultimately resulted in hope. Our hope has never been more secure. Or less for that matter. It has just become more realized in this season. The beauty is that while Erich and I are learning how to walk by faith in a season of darkness, so are our children. God has been here. He has gone ahead of us, and he’s been beside us each step of the way. We know it, and our children know it. We are learning what surrender means, and also realizing that surrender is an ongoing practice. I am learning to start my day with surrender. It means that I surrender control, surrender my life, surrender my fears, and surrender my family. I think that last one is the most challenging. I have always considered myself a woman fully surrendered to God, until hardship touched my family - more specifically, my child and children. This season has made me realize surrender is a process, not a one and done occurrence. Every hiccup, every tear, every pain, every insecurity my children stumble upon forces me to resurrender them to the One to whom they belong. 

     This year my children have been thrown into a new level of maturity. They’ve seen their brother go through some scary things, and have been involved directly by being matched donors. They have taken it like champions. I could not be prouder of them. We still have some rocky ground to cover, but we know God is faithful and he is right here with us. 

     So, what happens when our darkest fears come to life? Our faith grows, our family grows, and our hope grows. The darkness doesn’t seem so scary when you shine some light on it, so we will shine on. 

   “Mom, I can’t believe our family is going through this.”

   “I know. It’s kind of a dark time, but sometimes God allows us to go through dark times, so we can shine bright. Remember the Sermon on the Mount? ‘You are the light of the world...’ Where does light employ its purpose?”

   “In the dark.” 

“And where is light at its brightest?” 

   “In the darkest places.” 

“That’s right.” 

   “But what if it gets so dark he dies, Mom?”

“...We keep shining, love. God’s love and His light don’t go out when we die. They go beyond death. Even if that happens, we will keep on shining.”