2nd Annual Sophie The Brave Day

I’ve been reflecting on Sophie’s birthday for the last week and it was such a sweet day. A day that carried a lot of anxiety but also so much happiness.

We visited the hospital and it was so special. I reached our to friends and family on my personal page about wanting to shop for the Child Life department and they showed up in an amazing way! Over $800 was donated to go towards this shopping!

We were able to get a HUGE haul of activity packs, books, and supplies for the prize closets. We got 4 nurse goodie baskets for each of the Oncology units. We were even able to get extension cords and phone batteries for parents as well as laundry pods for Ronald McDonald House.

And we delivered it all!

I love this hospital. I love walking where she walked and seeing the places she loved. I love the people there. They know us in a way that no one else ever will. They knew and loved our girl. They cared for her in her weakest and us in ours. For me, being there feels like going home and the people there feel like family.

It was a sweet day in spite of the sad.

Beauty from ashes.

And next year, little brother will get to visit too.

Relearning Lessons

The beginning of last week was rough.

We had a busy weekend so baby Connor slept all day Sunday. That’s not an exaggeration. He barely woke up to eat every few hours but those eyes stayed closed all day long. So, of course, he was up partying all night Sunday night. I even took him to our guest room so Jonathan could sleep because I figured at least one of us should get some sleep.

Monday morning, we were supposed to get up and head to Dallas for Connor’s first visit to Children’s. Since SO many people donated to Gold Network’s prize closet fundraiser in Sophie’s name, we wanted to go help deliver all of the goodies and show Connor where his sister was so brave. However, after him not sleeping, we decided putting him in the car for two hours just wasn’t what was best for him. And I was so bummed. I wanted to go so badly. We haven’t been to visit since Sophie’s birthday in March and I just really wanted to go. I know there will be other trips when he’s older and we’ll take him soon and it’ll be great. I was still just disappointed. With Connor’s birth at the beginning of September, I didn’t get to participate in any Childhood Cancer Awareness Month events so I wanted to do this for her…and for me honestly. But we didn’t, and I was sad.

That sad carried into a long Monday at home alone with a very fussy and clingy baby. You’d think after partying all of Sunday night that he’d sleep a lot on Monday? Not so much. He was awake and wanting to be help from 10AM until about 4 when he took a 40 minute nap and then it was back to being fussy and clingy.

So, you’re thinking that means he must’ve slept so much on Monday night right?

Wrong.

He slept in basically 90 minute intervals and was awake for an hour in between those intervals with gas and wanting to use me as a chew toy and pacifier. It was rough.

Tuesday dawned and we started our day with him peeing all over his own face and my bed because…mom keeps forgetting she has a little boy this time. Then there was an up the back blowout and so much spit up. Like the thick, sticky spit up. He also barely let us put him down and mainly wanted me.

And I was frustrated.

While I am so incredibly thankful for the gift of my sweet son-knowing how short life can be, how precious it is, and how hard we tried to get him here. So thankful. I love him so much and am so obsessed with him. But I was still frustrated. Its hard being in the throws of postpartum hormones and the things that come with that. For me it’s constant hot flashing, dry skin, breakouts, neck and back aches from nursing A LOT, hormone headaches, and sore breasts from, again nursing A LOT. (For real-this kid nurses 35 hours a day I swear.) It’s hard for me relearning kind of how to be a mom. I haven’t had a newborn in almost 5 years and I haven’t ‘mommed’ anyone since January 4, 2018. So it’s hard momming a new baby while grieving his sister. And being tired is just hard for anyone but I think especially for a new mom.

Connor is way more of a mama’s baby than Sophie was. Soph was independent from day one-perfectly happy in the swing or bassinet by herself. Connor on the other hand wants to be held and cuddled. He wants me 90% of the time. My heart loves it-God knew my heart needed a cuddly baby that loves me as much as I love him. It does get tiring though never getting a break.

But-God stepped into my chaos in the form of my husband.

Jonathan walked in the door Tuesday evening, took one look at me…walking around the living room with a fussy baby that had just projectile spit all over me. My face must’ve looked a bit scary because he said ‘Why don’t you give me the baby, leave a bottle with me, and go get an uninterrupted workout and a hot shower’

Bless that man.

He knew he was in for an hour of a fussy baby that wanted me and hates the bottle. He knew he’d probably be bouncing and shushing him. But he loves him and he loves me and he knew I needed that hour. Plus-he doesn’t get near enough cuddles so obviously he could care less if he got fussy cuddles as long as there were cuddles to be had. And guess what?

We all survived and hit the reset button.

I got a great, sweaty workout in a AND a hot shower. Jonathan got some much needed one on one time and cuddles with Connor. And Connor…well, he did begrudgingly accept 4oz of milk from a bottle and fell asleep in his daddy’s arms.

I instantly felt better.

We ended up getting great sleep that night.

And the rest of the week has carried on uneventfully.

We are parenting. We are grieving.

I wish my girl was here for it so much….but I sure do Love these two boys and our imperfect life together.

Time Goes On

One year ago we were visiting the hospital and our sweet Addie Leigh after a hectic day in airports coming home from my sister’s wedding in Seattle.

At the time-one of these nurses had a tiny human, One was cooking a sweet baby, I was in the middle of a chemical pregnancy, and two of them were just being awesome.

Today…one year later…Addie Leigh is done with hospital chemo and almost done with treatment. My sister has been married a year. The tiny humans are basically grown up, two of us now have perfect baby boys born 3 days apart, and another has a new blingy ring on her finger! And we are all still being awesome. (Obviously)

But time has gone on. As it does.

It may seem weird or morbid to miss them and I miss life at the hospital but….it’s where I see my baby. It’s where I walk where she walked and get to hug people that love her and us.

The people that held her and held us. The only people other than us that know just how brave my girl was…they know every aspect of those 8 months of our lives because they were there. They didn’t read about it on Social Media. They didn’t get text updates or secondhand stories. They didn’t try to make us feel ‘normal’. They didn’t avoid us or get uncomfortable around us. They witnessed just how sick she got and just how disabled she was.

They lived it with us everyday for 232 days. And I miss it.

I miss rounds. I miss keeping up with the Beads of Courage Journal. I miss writing everything in my notebook. I miss asking for meds and helping with therapy. I miss the terms that were part of my daily life. I miss unhooking the feeding tube and changing the sheets. I miss cleaning the room with alcohol wipes. I miss weighing diapers and hoarding bath wipes. I miss our walking route on the 6th floor. I miss catching up with whoever was on each day. I miss our techs, PA’s, NPs, and nurses. I miss Dr. Watt and Dr. Slone. I miss wagons and wheelchairs. I miss mouth swabs and diaper cream. I miss blood work printouts and medicine schedules. I miss gloves and hospital grade hand sanitizer. I miss the pink fuzzy pillow and the stack of clean blankets we changed out daily. I miss strawberry water and the best tator tots ever. I miss Princess Bibs and Minnie Mouse Hospital gowns. I miss the trains at Children’s and the stars on the ceiling. I miss massaging tiny feet and rubbing a fuzzy head.

I even miss the stupid talking elevators, beeping IV pumps, and sleeping on an egg crate.

I miss being around people who truly got it.

Most of all….I miss my sweet Sophie that all of these things revolved around. Everything about her…even the hard stuff because she was still here.

But just like this picture….time has gone on.

One year, 9 months, and 6 days.

Time without her and time away from life at the hospital that felt so normal. That time was so hard. So uncertain and so stressful but it’s part of our story. It’s part of who we are. And in a weird way, I love it. Just like I love these 4 (and SO MANY MORE on CCBD) and I love reminders like these of time spent with them.

Because ultimately these reminders remind me of my girl.

My brave brave girl.

And I can’t wait to take her little brother to this place and show him where she walked and all the people who love her too.

Connor’s Birth Day

On September 4, 2019 we added our Rainbow Baby Brother to our family!

I was 38 weeks and 2 days pregnant and had my routine 38 week checkup with my doctor. At 37 weeks I was 3cm dilated and Sophie was born at 38 weeks so Jonathan decided to go to this checkup with me just in case.When we got to my appointment my blood pressure was pretty high. 165/93 and Connor’s heart rate was in the 110-115 range so my doctor decided that it was best to just get him here! Jonathan and I headed from the doctor’s office to the hospital! Thankfully, I had put my labor bag in the car just in case!

I will say, checking into the labor and delivery floor and being put in the same triage area where I was when I was in Labor with Sophie was harder than I expected. Once I got settled, Jonathan went home to grab his stuff and sitting there alone I was having to swallow some tears and panic a bit. THANKFULLY i knew my triage nurse! In fact, I taught her son 6 years ago when he was in 3rd grade! She knows all about Sophie so I didn’t have to explain it and that alone was just comforting.

Fast forward to about an hour later and I was in a labor room with my new nurse Betsy who was Precious and amazing! She also knew about Sophie and had flower our story from my sister-in-law who used to work on this L&D floor.

At 11:15 we started my pitocin and hooked up Connor and myself to monitors and fluids. My mom and sister got there shortly after!

At 1:00 my doctor came in and broke my water and stuff got real! My contractions started coming very strong and frequent about 10 minutes later.

At 2:30 I was dilated to 5cm and got my blessed epidural and it honestly was the perfect placement. I still felt my contractions but, they were manageable and I could still feel my legs and feet. With Sophie my epidural numbed me completely and I felt nothing which is great…it just was harder to push because I couldn’t feel anything.

I was breathing through my contractions and my blood pressure was still sky high and Connor’s heart rate was fine…just on the lower side. I just knew that my blood pressure was going to cause me to have a c-section which I really did not want but I also wanted what was safest for both of us. But again, thankfully, only 2 hours after my epidural, I was ‘complete’ -10cm- and ready to push!

Holding in my emotions was a struggle. I knew if I let the flood out that I wouldn’t be able to breathe to push. But the wave of it was overwhelming. I started pushing at 4:48 and 7 minutes later, after 4 pushes, Connor Jackson Skiles cane into our world at 4:55 pm. And we sobbed. It honestly took us both by surprise. We both knew we’d be emotional and there would be tears but…the absolute sobs were a bit unexpected.

He was here and perfect. 7lbs 4oz And 19.25 inches long. He had Sophie’s nose and lips and dark hard but also was very much his own little person. They put him on my chest and I was complete again…or as complete as I can be without Sophie. He looked up at me and sighed. He knew he was home too. It was one of the most precious moments of my life.

The thankfulness that we were overcome with was so powerful. We were thankful, so thankful when Sophie was born…but we didn’t know huge loss. This time….we knew how short and precious out lives are….we knew what it feels like to lose a child. And that made holding our rainbow so joyful and sad and and humbling and all the things. He didn’t fill the hole Sophie’s death left but, he definitely helped it feel redeemed a bit.

The last month has been so incredible. Connor is a fairly easy baby. He eats like a champ…even though he eats fairly often and won’t take a bottle. I’m an on call milk servant…I’ve accepted it. He also wants to be held most of the time, which we all are happy to do. He loves his bath and hates diaper changes. He also has basically the cutest little face and I’m basically obsessed with him. I’d forgotten some of the less glamorous and cute aspects of postpartum and newborn life but…even those things…I’ve been able to be thankful because I’m just SO.DANG.HAPPY. To be someone’s mom again. To have him here to hold and kiss and talk to.

It hasn’t taken away the grief. In fact, every day just about, there’s a moment or several moments where I think…she should be here. And it makes me so incredibly sad. But at the same time I know she’s here. I know she’s apart of all of it. And the best part….she’s whole and healed and perfect. She’s better off than all of us.

And even though we are truly loving everyday with Connor. We are still full of Hope because we are continually one day closer to eternity with her.

And I’m thankful.

A Month in the Life of Trying

Another month has come and gone without getting those two pink lines on that stick. Even though you did everything humanly possible to try to get the perfect chance of a positive.

You tracked your basal temperature and used an ovulation stick every single day, waiting for that line to darken for your best chances of conceiving.

You and your husband tried every other day, for five days, right in the middle of that “perfect fertility window”.

You bought conception friendly lubricant and you sat with your legs in the air to try to let gravity help things along.

You took the expensive prenatal vitamins, fish oil, and every other supplement you’ve read about daily. You drank fertility tea and haven’t had a glass of wine in MONTHS just in case you were to conceive.

You cut out soy and anything processed that could interfere with healthy hormones.

You tracked every symptom and mood change in your fertility app.

You maybe even went to the doctor for blood work to make sure your hormones weren’t needing any extra help.

You sat anxiously through the “two week wait” overthinking anything that could possibly be a sign.

You scrolled past daily pregnancy announcements, bump updates, and precious baby milestone pictures on Facebook just hoping this time you’d get to join in on it.

You’re happy for your friends but also so disappointed that you haven’t had your own announcement yet. You Googled “early signs of pregnancy” and tried to find any of them.

Your breasts are bruised from trying to determine if they were getting sore or not.

You prayed for some nausea every morning before you got out of bed.

You tried to tell yourself that even though mood swings are also a symptom of PMS . . . that this time it was because of pregnancy.

You maybe even gave in and took a pregnancy test a few days early and when it was negative, you gave yourself the “well it hasn’t been two full weeks yet” pep talk.

You did it all. Everything the blogs and all of your well-meaning friends suggested you try.

Then on test day you did it. You peed on the stick and then you sat on the ground with your phone timer set for three minutes and you prayed. Please, PLEASE, let it be this month.

Your timer went off and you took a deep breath . . . 

And there was still only one line on that test.

And whether it’s your first month of trying or your fortieth . . . you’re deflated.

Another month of nothing.

Another month of waiting for your period to come and go, then waiting for the two weeks to pass until you ovulate, and then again another two-week wait to take a pregnancy test . . . and that’s IF you have a regular cycle.

If you’ve been trying awhile, you will call your doctor and cry and maybe it’s time for blood work and an ultrasound to see what’s going on in your body. Maybe it’s time for your partner to get checked out, too.

You might be battling PCOS, endometriosis, side effects from chemotherapy or other medications you’ve taken. You could be against fibroids, cysts, limited eggs, low sperm motility, and a whole host of other obstacles. Your age may even be a factor by now. You’re so discouraged, maybe even over it. You’ve made the decision to start or further your family and once that desire is inside of you, it’s so hard to deal with not getting it right away. It’s even harder when you’ve experienced loss along the way. Miscarriages, chemical pregnancies, giving birth to a sleeping baby, losing your baby after birth, or even losing a child that you had years with . . . all loss makes that desire to be someone’s mom burn inside of you like a furnace.

Even if you have other children, it’s OK to want more and be sad when it’s just not happening. People will say “Why don’t you just be done? Be happy with the kids you have.” Or, “There are so many kids who need adopting, why don’t you spend your money there.” There’s truth in that but, you’re just not there yet for whatever reason and that’s OK. You want to carry life inside of you. You want the experience and the bonding. You want the kicks and even the labor.

And that’s OK.

But it’s also OK to be done. Whatever you and your family and doctors decide . . . is OK. And it’s OK to keep trying. Because maybe, next month, you’ll see those two pink lines.

Originally Published on Her View From Home

It’s OK to Just Listen

Grief makes us uncomfortable. Being face to face with someone else’s intense sadness is really hard. In my life, people feel doubly awkward because my child had cancer and died. There are two subjects that make people painfully uncomfortable. No one knows what to say or do, so many people follow the “I’m sorry” up with “my (insert relative or friend or random acquaintance) has/had cancer”. While yes, that matters and it’s terrible that anyone had to fight such a horrible disease . . . it’s just not helpful to compare an adult who fought and survived or even fought and died to someone’s child.

That in no way means I don’t care about other people and their struggles and losses. If anything, I’m MORE compassionate for loss and suffering now. I see the need for compassion and encouragement everywhere. I constantly think, I wonder what that stranger next to me is going through.

I also completely understand that when you’re hit with “my child died” it makes people uncomfortable and they are trying to show you they care or that you’re not alone because they know someone who had cancer and died.

I get it.

I’ve done it!

Before we started walking this road, I’ve known several people who have lost children and you don’t know what to say so I filled it in with:

“I can’t imagine.”

“I don’t know what I’d do.”

“I have a friend whose daughter died.”

“I lost my (insert person) so I get your pain.”

ALL of those things are valid and sweet things to say and no one is terrible for saying them. Our instinct is to ease people’s pain because it makes us uncomfortable—it’s 100 percent normal and human. BUT to be completely honest—which I’ve promised to be since Sophie was diagnosed—now that I’m on this side of it . . . it’s just not helpful.

It makes me feel like I need to stop in the middle of my grief to be sad for an adult who lived a much longer life than my baby. Again, I’m not saying I don’t care about others and their pain or that my pain is more important.

It’s just that when someone is sharing their grief with you, it’s OK to just listen and not try to take their mind off of it with a story of another.

If someone is sharing their grief with you, it’s because they want to. They very, VERY easily could suck it up, say “I’m fine” or avoid talking about it at all. So if someone is sharing with you, it’s OK to just listen. I want people to know that it’s OK to not know what to say.

It’s OK to say nothing.

It’s OK to start crying because what I just said shocked you and broke your heart.

It’s OK to say “I don’t have words for that.”

It’s OK to just say “I’m so sorry.”

It’s OK to simply say “I love you.”

It’s OK to say “I don’t know what to say but I’m here.”

It’s OK to say “I know it’s been a few months/years since your loss but I remember . . . I’m still here.”

It’s OK to grab my hand and just sit in silence.

Really, I don’t expect anyone to know what to say because . . . there’s nothing to say.  I promise, I don’t know what to say back to you. I can’t say “it’s OK” like I normally would if someone apologized to me because, in this case, it’s not OK. I can’t say “Well at least . . . ” because there’s no at least.

My child fought, faced every worst case scenario imaginable, and then died. Something terrible and broken happened and there’s no “good” response. Just be there to listen. You don’t know how to help even though you desperately want to, but . . . we don’t need help. Nothing you can do or say will fix the grief, but feeling loved and not alone can make a bad day a little better.

Just be there to listen . . . because that’s what we need.

Originally published on Her View From Home https://herviewfromhome.com/its-ok-to-just-listen/

2 years of cancer and a lifetime of loss

I started writing this on the 18th but I just couldn’t keep going. The night of the 17th was really hard for me. I just couldn’t quit thinking of May 17, 2017…. our last night of normal at home. It was a simple night…we put together the pink princess tent that Sophie had received for her birthday and she was SO PUMPED. While Jonathan put it together she kept bouncing around him saying ‘oh boy! Oh boy! Oh boyyyyyyyy!’ And we played and played in that tent….then she went to bed….just like every other night.

The next morning, the 18th, I got up to get ready for school…I walked into her room and touched her hair, found her paci for her, and whispered goodbye….just like every other morning. Then I went to work for a long day of 3rd grade field trip.

Completely unaware that I was living the last hours of normal. The last hours of being ‘the old me.’

So that’s why I stopped writing the other day. Because thinking of those moments….the lasts… it was a lot…and trying to add two years of thoughts to that just felt like too much. But today, I’m going to keep going so….here goes…

May 18, 2019 5:00pm

It’s been 2 years, almost to the hour since Sophie stopped breathing at home and we were rushed to our local ER and then transported to Children’s in Dallas. Sometime around 2 or 3 in the morning tomorrow, will be 2 years since we heard the words “There’s a softball sized mass in her chest, it’s definitely cancer…we just don’t know what kind yet.”

And life stopped.

Right there in that Critical Care Unit room of the Children’s ER, our life stopped. All current worries and problems seemed so small. Work didn’t matter….nothing did. Just that our baby had cancer and any future we had ever pictured was gone.

We were so positive that she would beat it. From day one….even in our shock and disbelief, we knew she’d win and have this incredible testimony! Especially when her story went crazy. I started Sophie The Brave the morning after diagnosis just to keep all updates in one place and it hit 5,000 people that day. Our GoFundMe went absolutely insane. We were humbled, shocked, terrified, hopeful, thankful….surely this amazing story reaching SO many people would end out well….her purpose was to show God is Bigger!

Right?

But….if you’ve followed us then you know….it didn’t end well.

From May 18th to January 4th we fought every 1% complication and extreme side effect. A 12 week relapse that NONE of our doctors had ever seen before and catastrophic brain damage that was so rare….it wasn’t even on the side effect list. In fact, it was SO rare that she was the ONLY CHILD LIVING IN AMERICA (maybe in the world) with early onset relapsed Lymphoma and this severe chemo toxicity. And that fact came straight from the doctor at Duke University who CREATED THE DRUG.

So to put it simply….we got screwed. That’s a tacky way to say it but….it is what it is.

And we remained positive that we had a long road ahead…but that she would beat it and be this huge miraculous testimony.

So long story short…she died. Less than 9 months after that night on May 18th in the ER, she was gone. After enduring so much more than she ever should’ve had to endure.

But does that mean she still didn’t have a miraculous testimony?

According to the World view, yeah that’s what Death at 2 years old means but, not to us. We know that even though her being gone sucks so much, that her Life and even her death meant so much more than we could’ve ever planned for her. I could go on and on with example after example of that but, this is already getting kind of long and wordy so I encourage you to go back and read the stories of her. Because she very much was and IS a miraculous testimony of the love, sovereignty, and faithfulness of God.

You know, we live in the reality that we’ve had three lives. Before cancer. During Cancer. And now.

It’s not ‘After Cancer’ because once your life has been closely touched by it…or by any serious/chronic disease I’d imagine…there is no ‘after’…there’s just now.

I know families with children in remission and others who are ‘off treatment’. I know men and women who are years without disease. But….they all know the same thing…that remission doesn’t mean a whole lot. It means they don’t CURRENTLY have disease in their body. And don’t misunderstand me….that’s amazing! Remission and off treatment are HUGE and important and a relief. But. There’s always the next blood-work appointment whether it’s once a month or once a year….you’re never done with the cancer. You’re never done with making sure it’s gone.

For us it’s not much different. Even though Sophie is gone and done with cancer, we aren’t. We don’t sit and dwell on it waiting for a terrible diagnosis but It creeps in in moments of doubt and fear.

It comes when I wait for my routine prenatal blood work. Why haven’t they called yet? Is it because I’m dying? It came in the form of horrible dreams that Connor had a tumor in his chest on his ultrasound. It came when Jonathan had a bad cold and I NEEDED him to get a chest X-ray just in case. It came when my friend’s 2 year old had high fever and leg pain and I went into a panic terrified he had leukemia (he didn’t.) I can’t even think about the first time Connor gets a cough that won’t go away without starting to sweat.

Cancer seems to find us now…we hear it all the time. Most medicine commercials have ‘lymphoma’ as a possible side effect. St. Jude commercials come on literally all the time. My best friend’s dad has Metastatic Melanoma. My chiropractor’s 2 year old was diagnosed with Leukemia. My sister’s best friend just beat Lymphoma for the 3rd time. It’s time for my annual dermatologist skin check. And on and on and on it goes……because there is no ‘after’ cancer. Even when the one with cancer isn’t here anymore.

But God.

We couldn’t deal with the anxiety and fear without the Faith that He has us in His hand. That even if the worst happens, Again, that God is still Bigger than all of it. And no matter what the last 2 years has brought….and it’s brought a lot…. but still through it all, He is Bigger.

He was bigger before cancer.

He was bigger during Cancer.

He’s still Bigger now and will continue to be Bigger forever.

Baby Brother’s Big Scan

I’d be lying if I said that this pregnancy has been easy. Ironically, it’s been physically an absolute dream so far-completely different that the first 18 weeks with Sophie. Not being on full restricted bed rest with constant hemorrhaging…obviously that’s been amazing. And I knew that mentally and emotionally this would be hard…adding hormone overload to to grief was never going to be fun. It’s been harder than I anticipated.

Trying to balance extreme sadness with extreme joy without feeling guilty about it. Managing such big feelings of loss and wanting to prepare for something new. Being completely torn with so badly wanting another girl but, also being really excited for something new with a sweet boy.

It’s been a rollercoaster.

So naturally, I’ve been a nervous and anxious wreck leading up to our big 18 week anatomy ultrasound. All I’ve wanted was to see fingers and toes and healthy organs. I’ve been terrified that they’d find a giant softball sized tumor in his chest like his sister’s. I’ve needed to lay eyes on him.

Yesterday, we got that.

Connor is absolutely perfect. He’s measuring exactly where he should be. His brain, heart, and other systems are all perfect. There’s no tumors. He’s just a tiny, sweet little boy….he’s DEFINITELY a boy.

He even looks a lot like Sophie’s 18 week ultrasound. And we are so thankful. It made it even more real. Seeing him looking like a real human-and he’s ok…it took a weight off I didn’t even realize was there.

Will that weight stay off? Probably not. That’s just how grief and anxiety work. It’s how life after cancer works. But it’s life…it’s our life. Continually living between sadness and joy while being filled up with unending Grace from the One who loves us more than we can imagine.

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