Tragedy

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

Smiles don’t mean it’s not there

Somedays we smile.

Somedays we are productive.

Somedays we have fun.

Somedays we relax and do stuff for us.

Somedays we are happy.

But.

Everyday we miss her.

Everyday it’s there.

Everyday we wish she was here.

Everyday the hole is felt.

Days turn into weeks and months and eventually years will pass but, the ache won’t.

Smiles don’t mean it’s not there.

She’s still gone.

We didn’t forget.

We won’t forget.

We still feel it.

We will always feel it.

We need to know you feel it too-that you haven’t forgotten. I think the people in our day-to-day lives don’t want to make us sad by bringing it up. They want to protect us and let us feel like at least life with them is ‘normal’. I’d rather cry because we talked about her than cry because I feel lonely or forgotten. I wish everyone knew that it means so much when you acknowledge that even though your life is ‘normal’, you know ours is still blown apart. So when we’re together, it’s ok to mention her…it’s ok to check in with us. It’s ok to let things not be normal with us around. You won’t make us sad. You’ll remind us she mattered and you love her and us.

We haven’t forgotten. Please, don’t forget.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser

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

Memories from June 25th

One year ago-June 25th-my sweet girl was finally home after spending 36 days in Dallas.

We were finding our ‘new normal’ at home with cancer. Daily steroids, oral chemo, 3 day chemo shots, nausea medicine, diaper rash regimen, Tylenol, Miralax, monitoring her temp 3 times a day, tracking her urine input and everything she ate. We were fighting toddler roid rage, insane hunger cravings, and that chunky face from steroids. We were cuddling on our couch, sleeping in ‘mamas big bed’, playing with all of our favorite things, and playing in her new play house outside.

I cherish these memories because we got so few days at home after her diagnosis. Out of the 231 days she was sick, we were only home as a family for 21 of those. 210 other days were spent at the hospital.

So these pictures of my chunky, steroid, Batman loving Punkin represent one of those 21 days. One of the happy days of being SO thankful to be home together and SO thankful for her. Days like this one taught me about [Joy in all circumstances]! I was learning that even though I had NO clue just how much suffering we would go through that my God was bigger and that each day was a gift. I was cherishing every day and moment with my baby because the next day wasn’t promised. We were living a nightmare but also living in hope and the joy of being her parents.

And here I am one year later, wishing so badly that she was here for a ‘one year later’ photo but, instead I’m here without her. I wouldn’t trade these memories though-she was fighting so bravely one year ago. She was taking all of the meds and pokes and uncertainty like a champ and while I miss her so much it physically hurts me-I’m so proud of her.

One year later, she’s been gone almost 6 months, and yet, God is still bigger and each day is still a gift. I still cherish every day and moment i had with my baby because the next day wasn’t promised. And i cherish my days now sharing her story.

We are still living a nightmare but we are also still living in the joy of being her parents and the hope of eternity with her.

#sophiethebrave #DoMoreForSoph #godisstillbigger #onedaycloser #ChildhoodCancerAwareness #MoreThan4 #childloss

Six Months

Six months ago was probably just a day in January for you. You probably were either still enjoying Christmas break or you were getting back into the post New Years swing of things-ready to take on 2018.

Six months ago, my husband and I were holding our baby for the last time. We haven’t shared specifics about that day because most of it is just for us but we held her as she took her last breath.

We held her after she was gone. I helped the sweet child life specialists take her hand and foot prints and signed way too many papers. I bathed her and put her lavender lotion on. I changed her diaper for the last time-even though she didn’t need it. I put a pretty pink headband on her head and socks on her little feet. I put a Minnie Mouse hospital gown on her and wrapped her in the blanket we brought her home from the hospital in. I kissed every inch of her that I could and rubbed my face on her fuzzy head. I held her until it was time to lay her flat and I laid next to her while our family said goodbye one at a time. I didn’t leave her side until I had to. I held her as long as I could and then I gave very specific instructions to the chaplain about not leaving her alone.

Then we left. I quite honestly don’t remember much about leaving the hospital. I’m told countless nurses and techs lined up to tell us goodbye-I don’t remember that at all. I don’t remember really anything until we got in the car.

Six months. Half of a year. At six months pregnant, a baby is considered viable and the doctors will try to save a premie. Six months is a half birthday. A lot can happen in 6 months.

Six months isn’t a long time but, it can also feel like the blink of an eye. Some days it feels like it’s been years since I held her and on other days I can feel her weight in my arms.

I’ve lived six months without her and I’ll keep living six more months….then six more….and on and on it will go until The Lord calls me home.

People say-I don’t know how you do it-and My answer is-I don’t do it, alone.

“But now thus says the Lord, he who created you, O Jacob,he who formed you, O Israel: “Fear not, for I have redeemed you; I have called you by name, you are mine.

When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you” Isaiah 43: 1 & 2

**************

This photo is real and raw. It was snapped by my sister about 10 minutes before we kicked everyone out and about an hour before Sophie stopped breathing. We knew it was time and Ericka was not our tech that day but she came in to hold me and pray over us. I love that you can see her Beads of Courage in the corner. It’s a testament to just how much she went through. And I love that fuzzy head. It’s a hard picture to look at but, it’s real. And I’ve promised transparency.

#SophieTheBrave #DoMoreForSoph #Godisstillbigger #OneDayCloser

Cancer: One Year Later

As a mother, you worry about all kinds of things. Is my child hitting milestones? Is she eating the right things? Are we raising her well? Does she have an ear infection? All of the ‘normal’ things that parents think about as they raise their children.

Cancer was never even one of my worries.

Cancer happened to other families. We heard stories and said ‘Oh gosh I can’t even imagine. I don’t know what I would do-I just wouldn’t be able to get out of bed.’ We changed the channel when the St. Jude commercial came on because bald kids made us uncomfortable. We put our change in the ‘Kids Miracle Network’ jars because we hated having change in our pockets. We’d donate $20 to a GoFundMe, signed up for a 5K, and bought some T-shirt’s to support ‘those poor cancer families.’ And then we went about our sweet little sheltered, happy life.

There’s nothing wrong with that life. Until your eyes are opened to just how BIG the world really is.

On May 18, 2017, I went to work-like any other weekday. We had a field trip that day-which is a stressful day for a teacher. I was hot and sweaty and exhausted after a full day of wrangling 24 kiddos, handing out lunches and waters, riding on a school bus (which is horrible), and walking around with a backpack full of first aid, permission slips, inhalers, and sunscreen. I got home to my Sophie-like every other weekday. Her grandmother updated me on her day, said goodbye, and we has our after school home time-like every other day.

Except. Sophie had been hospitalized in March for a weird breathing episode and then diagnosed with asthma a few weeks before and we were monitoring her breathing and doing breathing treatments 3 times a day until we could get her into an allergy doctor. That was stressful but, she handled it like a champ and did her ‘breathings’ with no problems. Heck-half of the time she would fall asleep holding the mask on her face! It was so cute. When it was done, she’d pop up like she had been awake the whole time and shout proudly-ALL DONE!

On this day-she was breathing really hard and I didn’t like it at all. So, I did what most moms do-I called for opinions. I called my precious friend Monday, a nurse and fellow asthma mama and told her my concerns. She advised me to go ahead and do Sophie’s bedtime breathing treatment early and take her to the ER after that for evaluation because, you don’t play around with a 2 year old’s breathing. I called Jonathan and told him to head home for what would probably be a long night. Then I pulled my little love into my lap and started up her treatment. As I’m doing that I decided to call my coworker Toni-another asthma mom-to tell her what was going on and to let her know that I might need to take off the next day-we had track and field day the following day so this was SO not a great time for us to be sick! As I’m on the phone with Toni-my world fell apart. Sophie went limp in my lap and started turning blue. I screamed ‘TONI SHES NOT BREATHING I HAVE TO CALL 911!!!’ And hung up. I’m holding the breathing mask on Sophie with one hand and shakily calling 911 with the other. She-thankfully-came back around quickly but was still very pale and lethargic in my lap. At that exact moment Jonathan walked in, with no clue what was going on. He walks in to us on the floor, Sophie unconscious and me sobbing on the phone. The Lord was very obviously working in him right then because he immediately grabbed the diaper bag, a phone charger, the iPad, and my wallet with insurance cards in it. He even grabbed my shoes because I was barefoot.

The 911 operator stayed on the phone with me until The ambulance arrived and I carried her out, barefoot, with Jonathan right behind us. We got her on the gurney and oxygen on her and she came around very quickly. We took off and Jonathan-bless his heart had to follow us in the truck.

Long story short-we ended up at the Children’s ER with an X-ray of a softball sized tumor in her chest. We were wheeled up to the ICU at 4 in the morning because she couldn’t lay flat. Her bed was propped up to sitting because when she laid flat, she stopped breathing due to the tumor pushing on her airway. Our world was halted.

We started steroid chemo the next day to stop the tumor’s growth.

Cancer. A word no parent should hear.

Most of you know what all transpired from there and I honestly can’t write all of that out right now. But the point is-Childhood Cancer happens more than you think it does. It happens whether you’re rich, poor, white, Black, Hispanic, happy, sad, Old, or young. It’s real. It happens. And you’re not a cancer mom…..until you are.

One year later and I’ve learned way more than I’d ever want to learn.

I’ve learned words and acronyms like Nelarabine, mediastinal mass, NPO, PRN, stomapowder, chemo rash, fungal workup, PET Scan, ANC, platelets, hemoglobin, neutrophils, immunosuppression, Bactrim, neuropathy, isolation, port access, bath wipes, spinal tap-LP, intrathecal chemo, vincristine, SCU, neuro-rehab, chemo toxicity, Methotrexate, zofran……..And so many others.

One year since my world became much bigger. While I’m not thankful that my girl is gone…I am thankful that I’m more aware of how big the world is now. I’m more aware of the HUGE need for childhood cancer funding. I’m more aware of how incredible nurses are. I’m more aware of what parents in hospitals go through. I’m more aware of the long term need cancer families have…..I’m more aware. And because I’m more aware, I can do something about and you can to.

So today-in honor of one year since Sophie was diagnosed-will you consider #DoMoreForSoph and giving to Childhood cancer research? They currently get 4% of government cancer funding.

4%

Our favorite research organizations are:

Gold Network of East Texas

St. Baldricks

Alex’s Lemonade Stand

Sadie Keller Foundation

All of these support childhood cancer research, support families currently in treatment, and help families that have completed treatment but still need long term support.

Another First. Another Day Closer.

I honestly didn’t know how I would feel about Mother’s Day much like I didn’t know how I would feel on Soph’s birthday. The anxiety leading up to it was pretty overwhelming. I’ve cried over little things in the past week more than I have in the last month combined. It’s so tough to think of a day where your children are to celebrate you…when your children aren’t with you anymore. I’ve been a mom for 5 Mother’s Days. In 2014 I was pregnant with our first and miscarried a week after. 2015, 2016, and 2017 were with my perfect Punkin. And then 2018 and my arms are empty.

So no, I had no idea what Mother’s Day would hold for me. I felt kind of helpless as it approached. Jonathan-always so conscious of me and my feelings-kept asking me how he could best love me on this day. He didn’t want to upset me by overdoing it OR by doing too little. Bless his heart-I wasn’t much help because I said ‘I just honestly don’t know how I’ll feel that day.’ I did know I wanted to stay busy and my sweet friends just showed up as they always do.

Friday was spent planting succulents with my sister….she says Incan’t kill them but the jury is still out on that. Green things don’t usually survive around me but, I’m willing to try. I spent the evening loving on my sweet friend Tami and Sophie’s bestie Addie Leigh at a gathering of a bunch of friends and their kiddos. Addie is doing so well in her treatment-it’s such a blessing to me to be able to watch her conquering cancer! It also helps my heart to help take care of her and I’ll forever be grateful to Tami for letting me ‘borrow’ her kids. 🙂 It’s also so great to be around people that know me, love me, and know that it’s ok to be normal around me but that it’s also ok to ask me how I am and it’s ok to talk about their life and kids.

I spent Saturday running around with my love and then dinner with some of our precious friends from church. Sweet Carolyn has left something on my doorstep every single Thursday since January 4th. The selfless way she loves me is a true example of what service should look like. We were able to sit and talk for hours and the best part-their daughter’s name is SOPHIE! I didn’t know how I’d feel being around her but oh-it was just so amazing to be able to hear and say the name I love so much. It was so so good for my soul. Our night ended on the back porch of another set of our friends just visiting and talking about life. I seriously am living life with the most amazing people. When I think of how good the Lord has been to us to put so many incredible people to walk this road with us-I’m just overwhelmed with thankfulness. I would most definitely not be functioning without my village.

So yesterday, I opened my eyes at 11:15AM. Jonathan had gone to church without waking me….because he is the MVP of all husbands and knew I very obviously just needed the sleep because his alarm almost always wakes me up. My sister and I joke that a great night’s sleep makes us feel like Disney Princesses when they wake up and, I had Disney Princess sleep Saturday night. I woke up to 47 text messages from the people I love. Words of love, encouragement, prayers typed out, memories of my sweet girl…all flooding my phone reminding me that I am SO loved. I woke up full of peace-which could only be the peace of the Lord upon me. I felt every prayer and good thought I know was being sent my way.

And Mother’s Day ended up being a pretty good day. Flowers from my bestie. More flowers from sweet friends. TONS of incredibly sweet and heartfelt Facebook messages and comments for me. The fact that people continue to take time out of their days to reach out to encourage me is just so humbling and again-reminds me how much I’m loved. I also had great workout in an empty gym-which is always a good thing! Errand running, herb garden designing, and manicures with my sister. Flowers, the most mushy and wonderful note from my love and those big, muscly arms he’s so proud of hugged me more times than I can count. He knows so well that when there’s nothing to say-a strong hug says it all. God broke the mold when He made Jonathan for me.

There were tears today. Tears as I looked at my favorite pictures of my girl. Tears as I sat at the cemetery and wiped away the dirt. Tears as I placed the fake flowers I finally bought because it kills me to have dead and gross flowers there on her spot. Tears as I knelt-like I always do, touched her name, and said ‘Bye my Punkin-I love you so.’ Tears as I read so many sweet messages that deeply touched my heart. Tears as I read the words my husband-a man of few words-poured onto paper for me. And tears as he held me because she’s supposed to be here for these days. There were tears-but also so much joy.

I ended my day at dinner celebrating my precious mother-in-law and laughing with the best family anyone could marry into. (Seriously, be jealous.) And then the famous Skiles sing-a-Long came to my house, ending with more tears as they sang Silver Wings-the song that soothed my Soph in those last days. A song that speaks so clearly to me about my little love going to be with Jesus. It’s not a religious song but, it touches my heart each time I hear it and puts me back in that hospital bed, surrounded by both of my families, holding my 25 pound-fuzzy headed cuddle partner, rubbing her smooth hands, and kissing that head. Sweet sweet memories tied to that song that I am forever thankful for.

The grace that overwhelmed us in those last 13 days is the same grace that covered me yesterday. I felt enveloped in love and peace that could only be from my Father and I like to think from my Punkin too.

I’m so honored to have been her mama. I’m forever changed because of her life, her bravery, and the promise of Eternity with her and my Savior. I’m One day closer.

“Silver wings,

Shining in the sunlight,

Roaring engines,

Headed somewhere in flight

They’re taking you away

Leaving me lonely

Silver wings

Slowly fading out of sight

Slowly fading out of sight”