Another month closer and another date dreaded…

It’s been 7 months and 3 days since I held my baby and felt her weight on my chest. I’ve read about amputees that feel phantom pain where their missing limb once was and that’s what grief feels like sometimes. My arms will physically ache to have her weight in them. My chest will feel heavy like she’s asleep on it. My fingers can feel her fuzzy head and soft skin. It’s comforting and agonizing all at once. I miss her more than I think I’d miss an arm or a leg.

This week is a tough week. There have been a lot of tears this week. More than there have been in awhile. I mean there are small tears pretty much daily but…this week has been hard. One year ago this week was the week of relapse. Today, one year ago, we were at home with Sophie for the very last night. On August 8th she was readmitted to the hospital with 16oz of pleural fluid next to her left lung. On the 9th, we found out it was filled with cancer and that our doctors didn’t know what to do next. On the 10th, Sophie crashed during her PET Scan and bone marrow biopsy and ended up intubated, sedated, and tied down with a chest tube in the ICU. Between the 11th-15th she got 15 doses of the chemo while under sedation and intubation that would take her independence away. The rest of the month was spent watching her slowly lose things. First it was standing, then sitting up, then being able to grab things, point her fingers, suck on her pacifier, swallow her spit, turn her head, move her limbs on commands, and her voice…all slowly went away.

It all started one year ago today. The beginning of the end.

You can imagine that’s why I’ve been dreading August. For a cancer family, especially one where you lose your child, it’s not just Birthday, diagnosis day, and death day. It’s all of these other dates that are burned into our brains like a brand. Trust me, I’d love to not remember dates, but I’ve always been a dated person. I’ve always had 3 or 4 calendars and….when Sophie was sick I chronicled everything that happened to her everyday in my notebook. Dates and what happened on them matter to me. But this week? This month? I wish I could forget the significance of these dates.

We did something last week that I’ve wanted to do for months but wasn’t ready for. We had our families send us all of the videos they have of Sophie on their phones. We have both watched every video on our two phones so many times that, we have them memorized. So getting this whole album of ‘new’ videos is such a gift. Many, if not most of them, I’ve never seen so it’s like I’m seeing her…a memory of her that I didn’t have but now I do.

How thankful I am for technology. We have friends that lost their daughter to Leukemia 30 years ago….they don’t have videos and pictures just readily available in the palm of their hands. But we do.

The precious videos of healthy Sophie and pre-relapse Sophie are soothing. They make me smile and fill my heart with joy because she’s just so.dang.cute! Everything she did and said was so cute! But the sick videos? The videos of her trying to talk and trying so hard to control her limbs? The ones where she’s crying in therapy because sitting up with 2 therapists assisting her is so frustrating? Videos of her fuzzy little head and sweet smile as she watches her favorite shows? Those precious noises she made the last few months…those dark brown eyes that I love so much…

Those stab me straight in the heart. I want to pick her up off of the screen and hold her to my chest. Watching them….I just can’t believe that was her life. She was stuck in that bed for 130 days. Disabled, frustrated, and unable to stop anything that was happening to her. I’m so thankful for her life but I just can’t believe that was part of it. But I can’t not watch them…they’re my baby. They’re how she looked and was at the end of her life. They’re my sweet Punkin that I cared and advocated for so fiercely. They’re of the part of my heart that I fought for until we left the hospital on January 4th.

And they’re all I have left. So, I watch them and I laugh and cry and close my eyes listening to her voice. I listen to her and Jonathan call me ‘Mama’. Then I hit my knees on the bedroom floor and sob because it’s so very hard, but comforting too. They are proof that she was real. She happened. She was amazing. She fought like hell. And she was so very loved.

In an effort to help my heart this month, I’m doing an August Scripture Challenge with verses showing that #GodisBigger on Sophie’s Facebook page….I’d love for you to join me as I share my heart and what the Lord is showing me this month. I’d also greatly appreciate prayers as this week and month play out. 💜

“Hear my cry, Oh God, listen to my prayer; from the end of the earth I call to you when my heart is overwhelmed. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy” Psalm 62:1-3

A lot can change in a year.

One year ago, Sophie and I loaded up and headed home after almost a month inpatient. We had no idea that the next 7 days would be the last days she spent at home, walking, talking, and being herself. Little did we know, her tiny body wasn’t responding to the chemo we’d been pumping into it for 12 weeks and her chest was slowly filling up with cancer filled fluid. Our ‘new normal’ was about to be shattered and changed yet again.

img_9063-1.jpg

One year later, I’m sitting and thinking about our triumphant return home on this day.

I was by myself at the hospital and Dr. Slone came in to say “Her counts are at 460! You can go home!” Sophie was PUMPED to get to go home and see Daddy, play with her toys-especially her “chichin” (play kitchen) and sleep in her bed. I started packing the room while she bounced in the bed watching a movie. (It was probably Sing.) Thankfully, my mom had just taken a huge load of toys and supplies home for me the day before so I had less to pack. Our sweet nurse Callie carried Soph so I could take the piled up wagon! Callie sat with her on a bench watching the iPad while I went to the parking garage, loaded the car, checked the car seat, and drove around to the front of the hospital. Then I loaded up my baby and we said BYE FELICIA to the hospital.

I’ll never forget getting home that day. We had really been struggling to get her to eat. Her steroid chunkiness was pretty much gone and her little legs were so skinny and weak from being cooped up. But literally the second we got home, she started demanding all food. Grilled cheese, tater tots, “chetchup”, milk, yogurt, chips, rice, grapes….. guys…. she was a bottomless pit of food and we gave her everything she asked for!

It was a good day.

And now, one year later, she’s gone and we went to the hospital to remember and honor her then…we went home. It was a much less triumphant return home. No play kitchen waiting. No Sing on the tv. No Sonic trip. No tiny bald head and skinny legs. Just the two of us, coming home again without our baby.

But yesterday did feel a little different. It wasn’t as crushingly sad. We were able to see a few of our favorites and walk down those familiar hallways. I offered to go change a dressing, give some meds, and sit and do some charting for the nurses but, they said no. 🙂 We hugged necks, told stories of sassy steroid Punkin, shed a few tears, and ate in the cafeteria-Chicken quesadillas, tater tots, and our favorite strawberry water. I even got to pet BLAIR!

img_3659

On the way home we talked about Sophie, our time at the hospital, and just how amazing she was. Jonathan even commented how, for the first time, leaving wasn’t unbearable. The hospital didn’t feel as much like “home”…which I think is a good thing. Hospitals aren’t supposed to feel normal and homey. You aren’t supposed to have to ask God to give you the strength to walk down the sky bridge and get in the car. You aren’t supposed to long to just sit at the nurses station and talk with your friends. You aren’t supposed to miss sleeping in those hard beds. But we do. We miss it all but, at the same time it’s hard to believe it all happened.

Even so, I’m thankful.

So thankful such a place exists because without it, we wouldn’t have gotten those 7 and a half months with Sophie. While it was hard and horrible…we got to love on her, care for her, watch her be brave, and touch so many lives. I’m thankful for the hundreds of people we’ve grown to love because of her. Doctors, nurses, techs, therapists, child life, dogs, cancer families, other kids, volunteers, church friends, new friends, grieving friends, online friends…..so many people that we never would’ve met without her and without cancer. I’m thankful for a place that we can still “see” her, walk where she walked, and hug people that loved her and witnessed firsthand what she went through.

I miss her so much….but I’m thankful.

“Give thanks in all circumstances; for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:18

 

She was never mine.

The Bible talks extensively about stewardship. It is a concept that our worldly broken hearts have a very hard time reconciling with. What we have in our lives does not belong to us. We are temporary caregivers. We stand in place of the real owner. Much like managers who govern in place of a king. This analogy reminds me of a Lord of the Rings reference when in the movie version of The Return of The King, Lord Denethor, the steward of Gondor refused to acknowledge that the true king had returned to claim his throne. Denethor forgot who the ‘owner’ of his kingdom was.

We don’t own anything here. Everything is God’s and we deserve none of it. This includes our children.

He gives them to us for a short time. Our job while we are here is teach them about the Lord. We teach them to say their prayers and love others as He loves us. We take them to Sunday School and sing ‘Jesus Loves Me;’ and ‘Amazing Grace’ to them as we lay them in bed. We long for them to become adults who want nothing more than to honor the Lord with their whole hearts and lives. We should be raising a generation that will lead others to Christ and serve the Lord as they walk in their calling.

So how then, do we accomplish that when our children die before they reach that adulthood? How am I doing my ‘job’ as a mother if my daughter has died before I could raise her up to be strong and courageous for the Kingdom of God? The answer is-she was never mine to begin with. My job was to care for her for 2 years and 9 months. My job was to battle for her as she fought Childhood Cancer. My job was to hold her as I helped walk her Home to her Heavenly Father. My job now, is to tell her story.

Luke 14:26-27 says, “If anyone comes to me and does not hate his own father and mother and wife and children and brothers and sisters and yes, even his own life, he cannot be my disciple. Whoever does not bear his own cross and come after me cannot be my disciple.”

After losing my daughter, I think I’m beginning to understand what this means. I’ve always thought-Lord you can have my money and my stuff but, I need my family and those important to me. When you’re truly a follower of Christ, you must be willing to give it all to Him-even your children. The scripture says we cannot be a disciple without giving them to Him. That is SO hard for our human brains to comprehend. We seek to be completely in control of our children and their well being. As mothers, we are genetically designed with the instincts to care for and protect our children.Our bodies carry and birth them- they literally come from us yet, they don’t belong to us. It’s not an easy thing to think about. The thought of ‘giving them up’ to the care and authority of someone else is ludicrous. Then you remember, they were never yours to begin with. They have always been and will always be His.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139: 13 & 14

Losing a child is the worst pain imaginable. There are days where I feel like I failed in my mission to protect and care for my daughter. It’s on these days that I lean on the Lord’s promises the most. He loves me and He loves my daughter. He has a plan for my life and He had a plan for hers. God’s Plan for my daughter’s life was that it would only last 2 years and 9 months here with me. His Plan for my life is that I was able to be her mother while she was here and now I get to share her story with the world. Having faith in His greater Plan doesn’t mean that I’m happy about losing my child or that I at all accept or understand why it had to be her. However, believing and resting in the promises that her death is not for nothing and that there will be a day when death is finally defeated brings me comfort and peace.

She is His and so am I.

Originally published on Her View From Home

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.