fear

God DOES in fact, give us more than we can handle…

I used to be someone that said ‘God doesn’t give you more than you can handle.’

That was before I had faced any hardships in my life. I didn’t know who God truly is.

When people are going through something hard and decide to share it, it makes people uncomfortable. It’s hard to watch others who are hurting, and it’s hard not knowing how to help when it’s someone you love.

“God doesn’t give us more than we can handle” is a very well meaning encouragement that I know is meant in love. -I’ve said it before! But it’s not really comforting at all in the way you hope or intend it to be. In fact, many of us who are experiencing hard things would want you to know this:

That phrase does not come across in the kind way you mean it. It firstly implies that those that don’t experience suffering in their lives are some how ‘unable to handle it’ and people like me who do ‘can handle it’. I promise you i don’t ‘handle it’ on most days. It also makes it sound as if all the horrible things in our life came from God. When you use the words “God” and “gives” in the sentence that way, what I personally hear is:

God gave her cancer.

God caused the relapse

God did the brain damage.

God took her.

God did these things…..because I can handle it.

I don’t believe any of that for ONE second but, it still stings in my heart a little to think that.

 

We fought aggressive Lymphoma in our 2 year old. We watched her unconscious and dying in the PICU with 11 tubes coming from her. We sat by helpless as ‘rescue chemo’ slowly took her independence away. We cleaned up throw up, poop, blood, feeding tube formula, and medicines. We held her down to get poked and prodded. And then we said goodbye and have to go on living without her. THIS painful chapter of life FEELS like it’s more than we can handle because IT IS MORE THAN WE CAN HANDLE. And we weren’t given a choice, we have to handle it.

The truth is He ABSOLUTELY gives us more than we can handle. That’s the point. He gives us more than we can handle alone.

We are to turn to Him in times of trouble and pain and lean on Him to take the burdens for us. Jesus died on the cross so that we don’t have to go through anything alone. The sheer force of humanity is more than we can handle alone. Can you imagine handling the weight and consequence of sin alone?!

Psalm 18:2 says ‘The LORD is my rock and my fortress, and my deliverer, My God, my rock, in whom I take refuge; My shield and the horn of my salvation, my stronghold’

He gives us way more than we can handle alone so that we will take refuge in Him and lean on ‘the Rock of my strength’ Psalm 62:7. He also places people on our lives to stand in the gap and pray for us when we don’t have the words. People that will love on us and support us through the difficult times.

Trusting Jesus with your salvation is so much more than just going to Heaven when your time comes. It’s entrusting every aspect of your life to Him. It’s also trusting that He is GOOD ALL THE TIME. When terrible things happen, He’s good. When there’s joy, He’s good. We may not know why things happen to us on this side of Heaven but, we have to trust that even then, He’s good.

God didn’t cause any of this but, you better believe He’s going to redeem it.

#SophietheBrave #DoMoreForSoph #GodisBIGGER

The Question No Grieving Mom Wants to Hear

My name is Shelby, and I’m a mom without a child.

My 2 year old daughter, Sophie was diagnosed with Stage 4 T-Cell Lymphoblastic Lymphoma in May 2017. We had 12 weeks of her responding well to treatment when she unexpectedly had a MASSIVE relapse in August. Our doctors had never seen a child relapse so soon in 40 plus years of practicing.

We were in the club that even cancer families don’t want to be in, the ‘rare disease’ club.

We spent 9 days in the ICU getting 15 doses of adult ‘rescue chemo’ that saved her life and knocked her into remission but, it came with huge neurological consequences. Sophie began slowly declining and losing her independence. By the end of August she could no longer sit up, walk, talk, eat, play, use her hands, or do anything at all on cue. She basically ended up with the horrific side effects that 1% of patients end up with. She was truly unique, the ONLY child living in America with relapsed T-Cell and severe neurological deficiencies.

We started physical, occupational, and speech therapy trying to get her strong enough for our only shot, a Stem Cell Transplant but, her tiny body just couldn’t handle it. On December 22, 2017 we were told the devastating news that her Lymphoma had again relapsed and was invading the left ventricle of her heart. She neurologically couldn’t handle anymore chemo and we were out of medical options. At that time, we decided to withdraw palliative chemo and let her spend what time she had left without poison consuming her body. We spent 13 days singing, holding her, watching movies, and being together before she passed away in our arms on January 4, 2018 at 2:11 pm.

Ever since that day, I have been dreading the question. The question that I know I will eventually get asked when I go out and meet someone that doesn’t know my story. The question that I fear will knock me completely to my knees and shoot me back into that hospital room. What question is that?

So, do you have any children?

I know that as soon as I say something like “Well, I have a daughter in heaven,” that I’ll get the pity look and the awkwardness that comes with being different. People don’t know how to respond to that. I saw it for nearly 8 months when I’d tell people that my child had cancer and was in the hospital. People don’t know how to respond to open grief and that’s ok. I can’t fault anyone for that but, the thought of answering that question fills me with so much fear and anxiety. I am a mom. I carried a baby for 38 weeks, labored her into this world for 13 hours, and spent 2 years and 9 months with her but, I don’t have any children here on earth with me. I don’t spend my days at play dates, changing diapers, cleaning up toys, or making snacks. Instead I spend my days with my face buried in her hospital suitcase trying to find her smell.

Then, my God whispers, ‘Trust me with this.’

The question is just another unknown in this life. I have no idea when I’ll get asked but, I know what my answer will be and I know that no matter what, He is here for me. He is big enough to handle my grief and my fear. I can’t keep fear of a question from letting me go out and live my life. In fearing the question, I’m actually just afraid of facing more instances where I’m reminded of her absence. When in fact, nothing extra can remind me that she’s gone. I feel it all day, everyday and a stranger’s question doesn’t have the power to make or break me. I think fearing that question is just another way the enemy is trying to manipulate me into thinking God isn’t big enough to help me through this. He wants me to be too afraid to share my pain that I clam up and fall apart or even lie to avoid feeling uncomfortable. We are called to be overcomers of fear, to call on the name of Jesus when we feel weak and let him strengthen us with the truth of who is is.

Psalm 145: 18 & 19 says “The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desires of those who fear him, he hears their cry and saves them.”

I’m still Sophie’s mom. I’m still here even though she isn’t. It would be insulting to the 8 month long war that she waged against cancer if I stay in fear of a question instead of using that question to share her story. So, maybe instead of dreading the question and seeing it as a source of grief, I should look forward to it. Maybe I should go out seeking people to share her story with. It won’t be easy. Nothing about this is easy. She was brave and I can be too because the Lord is my stronghold and I would miss so much by not sharing just how much he has done for me.

The Lord is my light and my salvation-whom shall I fear?

Psalm 27:1

Originally published on Her View From Home

The one my soul loves….

Statistics say that 80% of couples that lose a child end up ending their marriages.

When you get married all starry eyed with fairy sprinkles in the air you say your vows not really thinking you’ll ever need to follow through on the ‘bad ones’. You know for better or WORSE, for richer or POORER, in SICKNESS and in health. So long as you BOTH shall live.

When your spouse dies, you’re a widow or a widower. There’s no ‘term’ for losing a child because it’s that terrible. Marriage always takes work but, especially when you’re grieving. The loss of a child is so horrible-so impossible-so all consuming-that marriage takes a backseat to grief. Most days are spent just trying to function so, putting effort into your spouse is not even a thought sometimes.

It takes conscious, daily, purposeful effort to maintain a marriage during extreme grief.

Now-I’m not saying Jonathan and I have done a perfect job over the last year but, we have tried really hard.

When Sophie was diagnosed, we knew we’d be spending a lot of time apart between one of us needing to be with her and the other needing to work. We had no idea, of course, just HOW MUCH time she’d spend in the hospital. We had no idea I’d have to stop working entirely and that he’d have to go more than week without seeing us sometimes.

It was hard. So hard. But we were determined from day one to stay as a team. We knew that stress between us would not benefit her. So, we put communication first. I sent middle of the night novel emails to him so he’d know where my brain was at. We tried to get time alone at Ronald McDonald House, dinners together, and an occasional night at our home together. We prayed fervently for her but also for each other. And we made it through 231 days of cancer with very few arguments.

Then, she died.

And I could write a book on everything we’ve done in the last year (in fact I’m planning on writing it eventually) but, for now, I’ll just say. We don’t get it right everyday. The last 5 months have been hard. Unimaginably hard. But we are still here and we still love each other most.

Ephesians 4:2-3 says

“With all humility and gentleness, with patience bearing with one another in love; eager to maintain the unity of the Spirit in the bond of peace.”

Grace has been our theme. We have given each other HEAPS of grace. We’ve given each other the freedom to grieve differently and to not judge where the other person is at. One day I may have a ton of energy and be happy but, he may be deep in a hole of grief. The next day could be completely opposite. We’ve tried really hard to be there for each other when we need it and give space too.

Counseling has also been huge for us. We started grief counseling together in February and it’s been so good. It gives us a space to talk about what’s on our hearts with someone we love and trust and who know us and her. I can’t say enough about how valuable counseling is-for ANY marriage-but especially in grief.

We also have started planned date nights. We’ve found that a lot of the time-we don’t have much to talk about anymore because she was and is our whole life. It’s hard to talk when you both know what’s ‘wrong’. It’s also been hard for us to not just completely check out when we are at home. We don’t really talk about her or ‘it’. There have been many nights of Netflix and us staring at our phones because checking out is just….easier. So our ‘homework’ for counseling has been to write a date night on the calendar and a night where we talk about it. These designated nights, written on the calendar give our brains the freedom to plan out our week and things to look forward to.

I made a date jar for Jonathan’s birthday and the dates range from a movie night at home, going for walks, playing cards, going to dinner, hiking, double dates, group dates, to overnight dates out of town. They’re all different and most of them are cheap or free. We draw a date on Sundays and look at our week then write the date on the calendar.

It’s been SO good for us. Time to connect-without phones. Time to talk about it if we want but also talk about the future of just random stuff too.

We are always a work in progress and we don’t get it right all the time but, we’ve promised each other to put each other second behind Jesus but above anyone else.

I’d choose him and this life over and over again.

About last night…

I’ve been a bit weepy today but, for a good reason. Last night, for the first time, I dreamed about my Sophie and remembered it when I woke up. Jonathan has had several dreams about her and I haven’t had any. Then I woke up this morning with tears rolling down my face as I recalled precious dreams.

I dreamed that the three of us-my sweet little family-were at our little pink house just playing. It was like a movie of our perfect little life together. Jonathan was chasing her down the hall to hide from me behind the long maxi dresses in my closet. Sophie running to hide in her poop spot-the laundry hamper. Her slamming her door and us popping into her room after her. Walking laps outside in the yard ‘powwing’ bugs, looking for sticks and picking yellow flowers. Piled under stuffed animals watching a Trolls on our Sittin’ Raffe chair. Tea parties, book reading, stickers, and hours of her sorting all of her toys into piles. We prayed before dinner and ate our Mac-n-cheese and chicken nuggets. Bath time was had with our little duck and brachiosaurus song. Then we brushed teeth and got in the big bed to watch Curious George.

The perfect day. The perfect dream. Our perfectly imperfect life.

What I would give to have it back. But I can’t get it back, at least not here. So, until I can have it back in Eternity, I’ll be forever thankful that I was allowed to have that life. It was far too short and the life it’s been replaced with has a Sophie shaped hole in it that will never be filled. But I can truly, without regret, say that we LIVED a full life with her while she was here. She knew she was loved. She was played with and read to. She was chased and tickled and kissed. She was sang to and cuddled. She ran the house but was taught boundaries.

She lived.

And even though she’s gone, that life lives on in us, in our memories of her, and in our dreams.

Fear & Faith

You can do everything ‘right’ and that terrible thing that you’re afraid of most can still happen. It’s a product of the broken world we live in. You aren’t in control-you’ve never been in control.

But you have a good Father that IS in control. He’s known the beginning and end of your story since before He formed the world.

Faith looks like giving Him your ‘what ifs’ and trusting Him ‘even if’

“ after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. “

1 Peter 5:10

“For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison” 2 Corinthians 4:17

“Though He slay me, yet I will trust in Him”

Job 13:15

#SophieTheBrave #DoMoreForSoph #Godisbigger

We are all like a Toddler on Steroids

I remember this night so clearly.

One year ago, we were 6 days into what would become a 24 day stay in the hospital. Sophie was in the very middle of ROID RAGE central. She was finishing a round of steroids, getting sedated weekly for spinal taps & spinal chemo, and feeling generally like crud.

Fever had put us back in the hospital after being home for only 2 weeks. For cancer kids, anything above 100.3 requires an ER visit, isolation, immediate antibiotics, blood draws, urine cultures, and usually a hospital stay. It also never fails that when you’re in the ER, the cancer floor is full so you have to wait hours for a bed to open up. It’s not fun.

In this case Sophie’s immune system was at 0 and we had to get to at least 400 to be able to go home. Sounds easy right? Except for the fact that she was getting chemo daily that would keep that number at 0 for at least 2 weeks. We knew we were in for a long stay and we were making the best of it. Stickers, movies, toys, coloring books, play doh, bubbles, books…we had it all. But this night was so frustrating.

We were so incredibly blessed with so much help throughout Sophie’s illness. For our first 5 week stay in Dallas, Jonathan and I never left to go home-not once. This time, it was a ‘routine’ expected stay, Jonathan really needed to go to work, I was on summer break, and my sister and mom were available to help anytime. So for the first time, I had been at the hospital alone for a few days.

Being a full time care giver to a toddler who doesn’t understand what’s happening to her is hard. Caring for that same toddler who is pumped full of steroids that make her constantly ravenous, incredibly cranky, and essentially bipolar is hard. She was so chunky that smiling was hard on her cheeks and we had to go up a size in diapers. When the same toddler has fever and can’t leave the room to go for walks or play in the playroom until she’s 24 hours fever free is hard. And doing all of that alone in a hospital because your toddler has cancer….is hard.

Sophie was over it and over me on this night. She was sick of being poked and messed with. She was sick of being stuck in her room. She was sick of me. For two days solid the only words she spoke to me were No Mama, Stop, No Touch It, Go Away, Let Go…..and she kept banishing me to the couch only to ask me to hold her two minutes later. I was in tears a lot with frustration. I’d escape to take a quick walk while she slept. Sometimes I just stepped outside and sat on the floor outside of our door to just breathe.

That’s what I was doing when Aunt Jacy got there to give me a much needed break. I didn’t want to leave and go to Ronald McDonald because she had a spinal tap early the next morning. But just having Jacy there so I could leave the 6th floor was huge. I was able to go get some food, eat alone, call Jonathan, sit in the chapel for a bit, and just take a long walk outside. By the time I got back-Sophie was sick of Aunt Jacy and wanted me again. Steroids y’all-they’re no joke.

So at midnight, when it’s been 24 hours since fever, and the steroid raging toddler is still awake…..you escape the room and go for a walk. The first walk in 3 days.

And it was glorious.

She was so sassy and demanded her purse, paci, Crocs, Raffe, and her sunglasses. She took off, swinging that right arm like she meant business. She’d get too far ahead of us and stop to turn around and instruct us to hurry up. She knew that even though she didn’t like us right then, she needed us because we were pushing the IV pole. It was hilarious and Jacy and I had to keep making a straight face because our laughter made Sophie mad. The walk tired her out so of course, by the time we got ALL the way down to the end of the 6th floor, she turned and said ‘Hold me mama’.

And just like that-my frustration was gone and my heart was mush. I picked up my chunky baby and carried her back to the room where she slept all night on my chest.

I was reminded that night how similar we all are to the steroid toddler. We rage against God because things aren’t going like they should. We feel ‘stuck in the hospital room’ unable to do what we want when we want it. We say No, Stop it, let go, and go away and inevitably, when we leave that isolated room, we take off on our own with our purse and sunglasses. But when we get too far ahead, the IV pole pulls our arm and we have to stop and look to the one who is holding the pole. The one who enables us to keep walking. The one who picks us up when we’re too tired to keep walking. The one who carries us back to our room and let’s us rest in His arms.

Life is hard. It’s all hard. But He’s good and He’s holding you even when you’re acting like a toddler on steroids.

#SophieTheBrave #DoMoreForSoph #Godisstillbigger #ChildhoodCancerAwareness