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.

#SophietheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #cancermom #childhoodcancerawareness #lymphomasucks #childloss #lossmom #rainbowbabybrother #ConnorJackson #BigSisterSoph

Next steps are really hard

I did a really hard thing.

A thing that has been hanging onto my mind for weeks.

The thing I’ve been dreading ever since we found out that Baby #2 is a boy.

I cleaned out and packed up Sophie’s things.

She was never at our current home. We moved shortly after she relapsed. We wanted to be closer to our local hospital, to our support system, and we wanted a new clean environment for her to come home to.

But she never came home.

Most of her things were already in bins in the closet but, clothes were in the dresser and the whole closet was hers…but little brother is coming. And I’ll confess to feeling immense loss at that. Don’t get me wrong, I’m SO EXCITED to meet my son. I already love him and want him here. But I’m also mourning being a girl mom. I’m so sad that there won’t be any bows or tea parties. I probably won’t be watching Sofia the First or Tinkerbell. My favorite baby girl outfits won’t be getting reworn. And I’m sad. So freaking sad.

So, this week, I got It all out and packed it up. I touched it all. Every piece of clothing. Every blanket and towel. Every bib and burp cloth. Everything she once wore or touched. I cried and smiled and admittedly really wished I could’ve had a glass of wine while I was doing it. But I got it done.

I was even able to pull a few gender neutral outfits out that brother can wear and some towels and blankets that he can snuggle in. I got out the bottles and nursing accessories. And I packed the rest up for my parents’ attic…praying that one day, we’ll be blessed with another girl that will use them.

The best part though, is what didn’t get packed up. We decided that some things are just too special for storage. Too important to be packed away. And those things now have a very cherished place. We got a storage ottoman for our room…and I set aside things for that place. So now, she has a place in our room with us. And that makes my heart happy.

I can’t say that doing this made me feel ‘better’…it sucked. Every second of it just plain sucked. I should be setting up her own ‘big girl’ room AND baby brother’s room-not packing her stuff away. But I do feel a sense of a weight lifted off. This big thing on my to do list that I don’t have to stress about anymore. Now, I feel better about preparing for Connor…because Sophie’s things have been cared for and placed in a special place.

#SophietheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #childhoodcancerawareness #cancermom #childloss #lossmom #rainbowbabybrother #ConnorJackson #BigSisterSoph #livingwithgrief

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.

A New Chapter

I realized today that I hadn’t posted on the blog in awhile and that some of you on here do not have social media! So, I wanted to quickly share our news….

It’s been a rough year for us and will continue to be rough without Sophie but, we are thrilled to announce that she’s a big sister. We’ve had two sonograms and Baby Skiles is measuring perfectly with a strong heartbeat. My doctor is being proactive since I’ve had trouble staying pregnant in the past but, we all believe that Sophie picked us out the perfect one to send to us.

While our family will never be complete without her here, we love being parents and can’t wait to have this baby in our arms….and to tell them all about their Brave big sister.

Please be in prayer for us. For health for me and the baby and also for all of the emotions and anxiety that come with any pregnancy but especially with one after loss.

#Sophiethebrave #DomoreforSoph #Godisbigger #onedaycloser #childloss #rainbowbaby #BabySkiles #BetheLight