Kathy Sebright

Writer. Speaker. Believer. Runner. Truth Enthusiast.


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Losing yourself

Originally posted in Broken but Priceless Ministries’ e-magazine, volume II

 When so much of your life is dedicated to taking care of someone else, it’s easy to become a passenger in your own life. In your overwhelming need to be there for the person that is ill, you can almost forget you are a person too. So much time, energy, stress, and worry goes into the one you love. You focus on their pain, their recovery, their medication, their doctor appointments, their treatment options, their progress, and their entire life. It feels like it’s the very least you should do. You are, of course, the lucky one. The healthy one. And you would give anything to make them better and to take it all away so this is how you show it. IMAG0003 (2)

I didn’t understand just a few years ago, that I could only do so much. Forcing the life out of myself because I didn’t feel I should have the right to laugh. Passing on offers to do something fun because I didn’t feel I should be away from my son. It’s some of the deepest guilt I’ve ever experienced. And not just guilt, but shame and embarrassment. How dare I live my life when my son is suffering so much, I chastised myself. I thought somehow I owed it to him to suffer with him, as best as I could. It was out of pure love and sacrifice, however misguided. And so suffer I did. I put everything I ever had into my sick child until I was just a shell of a person. I gave everything I had away until I wasn’t anyone anymore. I lost myself in the grief and the relentless fear over someone I so desperately wanted to protect.

One day, I was outside running by myself for the first time in a long time, instead of running downstairs on the treadmill while my son napped like I had started to after he was diagnosed. It struck me suddenly like a bolt of lightning; life was all around me. The wind through the trees, the blue sky above me, and the dirt crunching under my feet. I had missed it so much, being outside, having a few minutes to myself to think, and the overwhelming feeling of being alive. The pain came in waves. I screamed, cried, and prayed over and over in a strange mixture of guilt and relief. I was still here. I had not disappeared after all. When I got home, I felt a little bit better. That was the day I resolved to try harder, to not just take care of my son, but to take care of myself. 2014-11-15 09.13.46

So what can you do if you find yourself in the same well-intentioned but ultimately destructive shoes as I was in? Take a good, hard look at your life. Be honest with yourself and remember that you are a person too. It doesn’t mean you love them any less or take care of them any less. It means you make the time to take care of yourself more. Because you are important too! Ask others for help if you need some time to yourself. Enlist your spouse, friends, family, a home nurse, or whatever you may need in order to give you the peace of mind to take time for yourself.

Set aside a few minutes in the early morning to do something that calms you: reflect, write in a journal, sit outside and watch the sun rise, read, pray, or do anything peaceful. Just make sure to do something you want to do, not that you feel you have to do. Aim to be active a few days each week. You don’t have to start running marathons or do 50 push-ups each morning. Just go for a walk around the block, ride your bike down the street, or dance in your living room. Exercise is a fantastic stress reducer, energy booster, and confidence enhancer. Use it to your benefit! Take time to get out and do something fun every once in awhile. Have lunch with a friend, go shopping at your favorite store, or do something that you genuinely look forward to. When you make taking care of yourself a priority, you can take better care for others!

 


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Caregiver’s Corner – surviving a hospital stay

Originally posted in Broken but Priceless Ministries’ e-magazine, volume I

If you are anything like me, when your loved one is facing a surgery, more testing, a procedure, or an unexpected stay in the hospital, the last thing on your mind is what sort of stuff to bring along. If you find yourself in that situation often, I recommend keeping a bag packed for the hospital. It’s just like a pregnant woman having a bag packed and ready to go at a moment’s notice for when the baby comes. Having a bag packed can make you feel more prepared when facing the unknown and less panicked about grabbing everything you can as quick as you can when something goes wrong. What do you bring to the hospital? That depends on a lot of things, like how long you are staying, if it’s an adult or child that is hospitalized, what sort of facilities you have access to, and how long you intend to stay. I’ll start with a few things that are generally helpful to have in most situations. 559314_3005109145141_892921302_n

* Bring flip-flops or slip on shoes. The hospital floor is not a place you want your feet to intimately know.   Taking off and putting back on regular shoes or tying and untying laces over and over gets old very quickly. Slip on shoes are the way to go. If you don’t have your own private bathroom or have to share a shower, flip flops can double as shower shoes.

*Bring change/cash. Many hospitals have vending machines and sometimes you can be desperate for a sweet or salty snack after a hard day. If you forget something, you can run down to a gift shop/mini convenience store that most hospitals have. I rarely carry cash or change with me anymore, so this is something I have to consciously think of to pack.

*Bring your own snacks or easy foods to microwave if you will be staying for an extended period of time. Hospitals try, they really do, but the quality of food can leave a lot to be desired much of the time. I like to bring food that doesn’t need to be refrigerated and doesn’t involve much prep. Things like trail mix, bananas, apples, canned soup, and popcorn, are staples of mine. A lot of people like to bring microwavable meals too. Many hospitals will have a hospitality room where there is access to a refrigerator, coffee maker, microwave, and toaster.

*Bring things to do. Books, devotionals, coloring books, crayons, small toys for children, a journal, pens, a laptop, etc. I have had days where I could do nothing else but stare at my son in a hospital bed as he slept and days where I was desperate for something to distract me from that place.

*Bring comfortable clothes that you don’t care if they get wrecked or stained. Pajamas, yoga pants, t-shirts, capris, and your favorite lounging around clothes are all good. Things happen in the hospital. Medication gets thrown up, antibiotic cream gets smeared into your shirt, blood runs onto you, and so on.

*Bring comforting things that remind you of home. Your favorite slippers, a framed photo, a small knickknack, your child’s favorite blanket, your iPod or MP3 player full of music, or really anything that can help you relax in a small way. But when bringing important items, keep in mind that things could get wrecked, broken, or even misplaced in a hospital stay.

*Bring your own toiletries. Toothbrush, toothpaste, shampoo, conditioner, lotion, chapstick, etc. The air is generally pretty dry in a hospital, so good lotion and good chapstick are always a must for me. Bring you own tissues too so you don’t have to use that terrible sandpaper in a box that many hospitals lovingly offer.

*Bring your medical information. I have a medical binder that has my son’s current tests, scans, and appointment summaries. I also keep a medical journal of all major medical events, hospitalizations, dates, Doctors, etc. This is especially important if you hospital jump like we do. My son sees specialists from 3 different hospitals that don’t communicate with each other, so it’s important we can give them that information.

*Most importantly, bring your faith. It’s hard to be in the hospital and watch a loved one suffer. It’s hard to not know what is going to happen and live on the edge. Hold onto your faith even when it’s hard. That is when you need God the most.


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The key to courage

I stood in the large open room in church surrounded by women that were once strangers but now friends. I had stopped in real quick just to drop off some food for a friend that couldn’t make it to the MOPS (mothers of preschoolers) meeting. My husband was in the parking lot, waiting for me.

I was exhausted, anxious, afraid, and filled with both dread and excitement. I could practically feel it rolling off of me in waves. What on earth was I doing? I didn’t know. It’s no secret that I live and breathe running. I’ve been a long distance runner for years and I had trained diligently for the last 6 months for this very day. But why? Why attempt to run 100 miles? Maybe I was searching for something. Maybe I was trying to find myself in those miles. Maybe I was trying to get back a feeling I had lost long ago. Maybe it was none of that. Maybe I was just running away. Maybe I couldn’t face it. Maybe I was so afraid of what I couldn’t control, I had to do something just to prove to myself I was still in control. Maybe I just wanted to feel like me again.IMAG0924_BURST012

Just 2 weeks prior to that day, we had scheduled another skull surgery for our 3 year old son Emmett. Heartsick didn’t even begin to cover it. I was torn between breathing a sigh of relief that we could get this over with now and help him and wanting to pack up everything we own and run away with my son to keep him from any more pain and suffering. I looked at my little boy who didn’t understand what was in store for him and it was a dagger to the heart. It filled me with the kind of fearful, anxious pain that makes you abruptly start crying in the middle of everyday mundane tasks without warning.

Here was that task, dropping off food to a group of friends, on my way to try my hand at running 100 miles for the first time ever. I almost wasn’t standing there. I almost decided it was too selfish of me to go ahead and run this race with another impending surgery. But after a lot of careful thought, I decided I had to. For Emmett. For myself. And for everyone that’s ever wanted to give up. I wanted to be the person that didn’t go down without a fight. But I wasn’t sure I could do it. I didn’t know how I was going to run 100 miles. I didn’t know how I was going to hand over my heart and soul to a group of surgeons again. I didn’t know if I was ever going to stop being afraid for him or if I was ever going to be brave enough.

That’s when the MOPS leader, who is a dear friend of mine, began talking. She was reading a devotional about bravery and courage when she stopped to pull out a small, fancy envelope. She handed me the envelope and inside was a key with the word courage on it. I started to cry as I looked around at the faces of these loving, supportive women. They thought I was courageous even when I felt absolutely terrified.  They believed in me even when I didn’t believe in myself. They were rooting for me even in the middle of my own second thoughts. Tears of gratitude continued to stream down my face as they prayed for me before I had to leave.                                                 

I stashed that courage key in my running pack and it traveled with me for all 29 hours and 44 minutes as I completed 100 miles. There were some very dark moments during that race, just as there had been in our life, but I knew I wasn’t alone out there. 3 weeks after race day, I put that courage key in my pocket the morning of Emmett’s surgery, while I ran and walked obsessively outside of the hospital waiting for him to be out safe and sound, until I was holding his hand once again. As I curled up in the hospital bed next to my son amidst a mass of wires and tubes, I knew I had it. I could feel it. One of the greatest gifts I had ever been given was not just a key, but someone that believed in me, someone that believed I could do it, no matter what “it’ was. And whether it was on a running trail at 3 am or in the ICU of a children’s hospital, their belief in me sustained me until I could believe in myself too.


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The only way out is through

I know that sometimes you feel like you are failing at everything. I know you feel the burden upon your shoulders to keep the entire household in some semblance of order as the world spins out of control. I’ve seen you awake at 2am, crying while everyone else is asleep. I’ve seen you pacing the hallways in the hospital praying the same prayer over and over. I’ve seen you stand vigil at a bedside sure that your world would cease to exist if this tiny fragile body went away. I’ve felt the same desperation to trade places with your child or loved one wanting more than anything in this world to spare them the pain. I’ve seen you struggle with your faith and heard you curse God’s name. I’ve seen the pressure surround you from all angles with a world that goes on around you while your life seems to crumble in front of your eyes. I’ve heard you screaming desperate pleas for healing and for peace. I’ve seen you hold the tears back when those around you deliver biting remarks and dismiss the pain that you are in. I’ve seen your body break down, your heart break open, and an endless stream of pain. I have witnessed your undoing on the very deepest level. I understand the pain, anger, and helplessness because I have been undone as well. Sometimes I have wondered, would there ever be a way out?

Just a few months ago, my 3 year old son went in for another skull surgery. We waited and waited anxiously for him to wake up, wondering and worrying about what would happen. It IMAG1705took about 8 hours for him to fully wake up. The first words out of his mouth nearly broke my heart. In a pitifully weak and scratchy voice with a throat that probably still hurt from the breathing tube came the quiet squeak “I got hurt” amongst the steady beeping in the background. Then he started to cry blood red tears, which can be normal for this type of surgery but still unnerving to see. Talk about being undone. I choked back my own sobs as I tried to be as brave as possible for him. And for a minute, in an absolute pained panic, I wanted to take it all back and make a different decision to not have the surgery. My son needed this surgery no doubt about it, three neurosurgeons agreed. The closer it got, the more I both wanted and didn’t want him to have this surgery. I know it was what was best for him and that it was going to help him, it was going to give his brain the protection it needed, and aid him in going farther in this life. But on the other hand, I have watched him suffer so much and so greatly already. I didn’t want to sign him up for any more pain and suffering. I wanted to protect him. I knew this had to happen no matter how badly I wanted to spare him the pain because there was no way to get the end result of this major surgery without going through it first.

I have questioned God time after time during the worst of it, demanding a way out, begging for my son’s health, and wanting so badly to understand this and somehow make sense of it all. The answer was devastating silence because in time I realized, it’s not for me to understand. But I think I understand a little more now than I did before. I can almost see God seeing us suffer. It must hurt Him as it hurts us. He doesn’t want us to have to go through this. He doesn’t want us to be in pain. He wants to protect us. But He also knows what is going to help us and what is going to aid us in going farther in this life even if we don’t understand it. There is no other way for us to get to where He wants us to go without going through this first. The end result is what He wants and there is no way to shortcut it. The only way out is through. So we must keep going and keep trusting, even when it’s hard. I pray that you find the strength and courage you need to go through the storm you are facing regardless of what that storm looks like. God wants to go through this with you until you are out. Trust Him. Keep the end in mind. And go.

Job 29:3 By his light I walked through darkness

 


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Drifting together

Originally posted at http://www.erinelizabethaustin.com/blog/drifting-together

Our family of four was in crisis mode tending to only the most critical of wounds, which happened to be our one year old son Emmett. Everything else was prioritized accordingly and tossed to the back burner, including our marriage until everything we piled up back there and forgot all about threatened to pull us apart.

Out of the blue, my husband suggested we go out for what would be the first time since our son Emmett’s first seizure and the harrowing turn of events that had followed. It also just happened to be less than two weeks before Emmett’s first skull surgery. While we waited for a table to open up, we had wandered into the shoe section of a department store. Totally exciting, I know! I was mindlessly walking through each aisle when the thoughts I had been working so hard to keep out infiltrated my mind. What if he has a seizure on the operating room table while they are cutting him open? What if he doesn’t wake up? What if I never see him alive again? Surrounded by flip flops and other unassuming shoppers, I could feel the tears welling up in my eyes. “I don’t want him to die” I blurted out in a voice entirely too loud for Friday night department store shopping. I tried to hide my face from the curious onlookers as the tears began to fall. My husband put his arm around me and I began to cry even harder. “Get me out of here, I don’t want to be here, I have to get out of here” I gasped through sobs. My husband grabbed my hand and started a half walk/half run towards the nearest exit, while people stared after us. When we got out to the car, I sobbed into my purse until all of the makeup I had worked so hard on streaked into one big messy pile upon my face. So much for a nice night out I thought. I just wanted to go home. I wanted to touch my sweet baby’s head, see him asleep in his crib, and know that he was ok. We gave up on dinner and hightailed it back home. Even though that night hadn’t gone the way we intended, we were brave enough to try.

Nobody tells you the effect that a diagnosis will have on your marriage. Of course it impacts your daily life, your faith, your schedule, your finances, and you personally as a parent, but your marriage? For me, that was completely unexpected. A diagnosis can drive a deep and immediate wedge right in between you and your spouse. The slow drifting apart that you’re too stressed to care about at first, but then stop noticing can finish off your marriage altogether. There is a higher divorce rate among couples with special needs children. There are many different theories as to why: the extreme rollercoaster-like ups and downs, disappointment over the way the other has handled the situation, the constant stress and worry about the future, the astronomical cost involved in taking care of your child, and most importantly disagreeing about medical treatment for your child, which can rip to shreds even the most loving of couples. Take all of that emotional baggage and then add to it the regular, ho-hum, every day demands of a marriage and it is no wonder why we feel ready to break at any moment. This is really, really hard. The life you knew, gone. The marriage you thought you had, on the brink of destruction.

It’s hard to prioritize your marriage when you are knee deep in this life. If you have a special needs child: money, schedules, medical needs, and a babysitter that you can feel confident in all became an issue, among other things. It seems ridiculous to be concerned with a date night when there are serious problems you face everyday. But what I have realized that if we are to have any hope of surviving, we need God and we need each other. Our marriage is now as important as ever in the wake of this turmoil. We need to be there for each other and our children. We have to work twice as hard as everybody else to keep this sinking ship that is our life afloat sometimes and although it seems like one more injustice in our lives, it’s important and worthwhile.

You don’t even have to go outside of the house to prioritize your marriage, although it’s nice. We turn off the tv after the kids go to bed and actually talk to one another, not just rattle off schedules and a brief synopsis of our day in between commercial breaks. Once a week, we do a half hour marriage devotional. It helps us keep God in our marriage, brings up good conversation points, and reminds us that nothing is impossible with Him on our side. We pray together each night as well. We have a date nearly every Friday night. On date night, there is absolutely no medical talk, it is not allowed. We stay in most date nights but we eat a nice, or not so nice depending on the day we’ve had, dinner after the kids go to bed. We play a game, watch a new movie, have a fire in the backyard, etc. We also try to get out of the house together once a month with just the two of us. It’s not much but all of that together helps cement the fact that we are in this together. We are intentional about keeping our marriage together, about keeping God in it, and not allowing anymore drifting apart.

I’m here to tell you from experience that your marriage can not only weather the storm but thrive in the storm when you are both committed to making it work. My prayer for you today is that God blesses your marriage, wherever you are it in it.


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You can always go back home

Originally posted at http://www.erinelizabethaustin.com/blog/you-can-always-go-back-home

Ever had that vague feeling of Déjà vu? Like you’ve been here before, done this before, and seen all of this before? Ever stared in the mirror for so long your own reflection didn’t make sense? Ever wonder what has happened to you? To who you used to be? To your entire life? Ever been caught in the swirling vortex of emptiness? The desperation surrounding you like black does a night, the hope that life will ever be better completely out of reach .Ever been so hopeless you wonder what the point is anymore?

I have sat wide eyed clutching my sanity by a very thin thread. I have, at times, let everything good in me be extinguished by the pain I was in. I have been hopeless, desperate, anxious, and so full of fear for what lie ahead I have forgotten how to live. It’s a cycle, a long, hard, exhausting cycle that I’ve been trying to break free of ever since my son was first diagnosed. It ebbs and flows, some days I can conquer the world and other days I am reduced to a pile on the floor. I can go from feeling capable and strong to helplessly out of control. I can feel strong in my faith and feel God’s plan for my family one minute and the next minute rage at a God who could allow my baby boy to suffer so. The struggle is constantly changing me, chipping off more of the old me and exposing more of the true me underneath. It’s a painful process, one that leaves me feeling vulnerable and raw at the end of the day. I was just like everyone else, until suddenly I wasn’t. My son was just like everyone else, until suddenly he wasn’t. I never signed up for this. I never checked the box for optional yet honorable suffering on the release forms when I took my baby home from the hospital. It blindsided me. It came running after me and no matter what I did, I could not escape it. I went down kicking and screaming, fighting this monster I couldn’t see or predict. It didn’t matter what I did, I couldn’t escape it. This was going to be our new life.

There’s a lie being circulated out there about caregivers, about parents of special needs children, and really about anyone that has ever been broken apart in two and had to find a way to carry on. The lie is that God only gives you what you can handle and I don’t believe it for a second. I’ve lived it. I know I had way more than I could handle. I’ve been crushed under a burden I couldn’t move on my own. I have fallen apart and been put back together again, the pieces of my broken heart precariously glued in place, but I can tell you it wasn’t on my own. I didn’t handle it; God did. I couldn’t put myself back together; God did. I couldn’t see light at the end of the tunnel; God knew. I couldn’t love God; God loved me anyhow. When I was at my most broken and hopeless, screaming like a wounded animal, God was there. When I was crawling up the wall, desperate for a way out, God was there. When I was sitting in the hospital, time after time, God was there. God was always there, I just had to be willing to see him. He didn’t want me to do it on my own. He wanted me to trust Him, to rely on Him, and to believe Him. I spent a long time refusing to do just that, sure that God had turned his back on my family. When there was nowhere else to turn, I turned back the way I came, back towards the God that had always been there despite my erratic behavior.

When you are struggling and I mean really, desperately struggling, God can get easily washed out in the pain. There is a wall that goes up in between who you used to be and who you are now and God was on the other side of that wall for me. I’ve been here before I’d think. I’ve done all of this before, and I’ve seen it all before. It was all apart of the process. Up, down, and back again-the never ending cycle of change.

If you are in the middle of that tumultuous cycle, I grieve with you. I know the pain you are in. I pray for peace as you transition into this life that doesn’t make sense. I know God has given you more than you can handle and I won’t tell you everything will be okay, because I don’t know if it really will. I will tell you that whatever happens, there is always God, even when you don’t feel Him, even when you don’t see Him, and even when you desperately want Him to not be there. You can always go back home. You can always turn back around.

2 Corinthians 1:7 And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.


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The Sliver of Hope

Originally posted at http://www.erinelizabethaustin.com/blog/a-sliver-of-hope

I just don’t feel like going, that’s why,” I snapped angrily.  My husband raised his eyebrows and then silently walked away. I sighed out loud.

Really, what was he thinking? Just because it was Christmas didn’t mean we had something to celebrate. Our life was far from a cause for celebration: a sick child, bills we could no longer pay, and a marriage buckling under the stress of this life.  I was exhausted. Hospitals, specialists, medications, more and more testing were all piling on top of work, kids, and a household to take care of. Life wasn’t supposed to turn out this way. This is not what we had in mind when we welcomed our child into this world. We were going to live happily ever after.  Now I would be content in just feeling like we were living. More often than not, we are barely surviving.

I watched my husband load the kids into the car and drive away. Another Christmas party, another chance for fake holiday cheer. No thanks. I looked at the nativity set on the coffee table and a pang of guilt hit my heart. I know why we celebrated Christmas. I was not without faith. I did believe in God, but surely He had abandoned our family long ago and left us high and dry.

What was the purpose for our suffering? What is the purpose in watching our son suffer? Where was God when they handed down that first diagnosis, just one of many? Did God see my soul crumble and the very life drain out of me when they told us this could kill our little boy? Did He see the bills piling up? What about our shaky marriage? At a time when we needed each other the most, everything fell apart. Was God watching all of that too? No amount of prayer made any difference, our lives kept spiraling out of control.  Nope, God didn’t live here and I, for one, would not be celebrating.

The house was dark and quiet. So quiet, I could hear the snow falling. The lights on the outside of the house shone in from the thin curtains. I tried to enjoy the unusual quiet, but I couldn’t. I turned on the radio for background noise; it was pre-set to the local Christian station. Our life weighed heavily on my mind. The events from this last year blurred together. It was the worst year our family had ever seen; a year that dragged us deep into the trenches and then left us there to rot.

I slowly drifted off to sleep.  I must have been dreaming because I abruptly saw myself in church, sitting alone in a large auditorium. I made up the entire congregation; there was no one else. The room was eerily lit by candlelight.  I sat and waited purposefully, but for what, I wasn’t sure. Suddenly the room changed. A faint whisper filled the room. “God did not abandon you my child.” A surge of anger coursed through my veins as I tried to object. “God understands your suffering my child.” “No He doesn’t,” I wanted to yell, but my voice wouldn’t work. “God has been with you all along my child.” How? When? Where? A million questions I wanted to ask, a million ways to disprove it that I couldn’t vocalize. “You are not alone my child.” My anger died down and gave way to a pain so raw I couldn’t speak as tears threatened to fall. “Do not be afraid my child.” I smiled bitterly; I was frozen in fear – fear of the future, that there may not be a future for our son, or that we were missing something that could make a difference in our son’s life. So just where was God? Where was the God who sees, hears, and knows everything? Why wasn’t He seeing and hearing me? “God was listening my child. He was right there all along; the same place He was when His son suffered, when His son died for you.” A lump formed in my throat. Full of foolishness and pride, I had no rebuttal, no way to ration my way out. I was unable to speak once again. “God has great plans for you my child and great plans for your child; have hope.”  The words cut straight through to my dark, angry heart. Tears I had been holding back not just in this strange moment but for months now, spilled over as I felt a sliver of hope make its way in.

A car door slammed and jolted me awake. What was that? A dream? God himself? Bits and pieces of the radio talk program I overheard while half-asleep? Did it really even matter? I understood now. My husband and the kids came bounding in. My tear stained face seemed to startle my husband. He held out his hand and I took it as more tears fell. There was hope in my heart, however small, but it was there. Hope for our marriage, for our family, for our son, and for better days ahead. Most importantly, I let in the possibility that there is a purpose in our pain and we are becoming great witnesses of God’s faith and love. It was Christmas. We did have something to celebrate, many things actually, starting with our family. We don’t know what the future will bring, but we know that God is with us, even when we don’t feel it. We know that there is a purpose in what is happening. We know there is always a reason to hope.

May your Christmas be filled with hope, love, and joy, even amongst the suffering