Ruby and Malachi

Facing my Fears

I wrote my way through Ellie’s cancer.  But then the words disappeared, dried up.  You see, I write what God puts on my heart.  There are times when there aren’t stories there to share.  But there are other times when I hear God saying, “Tell this story.  I am doing something, tell them!”  Once again, I can hear that loud whisper in my heart.  God has a story he wants me to tell, a part of my heart he wants me to bare. 

When our second born daughter was diagnosed with Leukemia at just two and a half years old, our world shattered.  Any plans we had were thrown out the window.  For the next 28 months our lives were consumed with her treatment and care.  After that we spent another 12 months learning to walk again, to live without cancer at the center.  Somewhere during that time I felt my dream of more children shatter.  I thought it was over.  Many childhood cancers are genetically linked.  But for a long time I didn’t even ask.  I think I was afraid to.  When I finally did look for the facts, I learned that there are no known genetic links for our daughter’s cancer.  They do know that siblings have a four times greater chance of getting it “for no known reason”.  The unknown lurked in the shadows of my heart.  One day I felt God prompt me to confront my fear head on.  I did the math.  What did this unknown fear look like?  It looked like a .0004% chance.  I laughed.  The chances of many other things happening were much greater, and yet, those don’t stop anyone.  By confronting my fear I had eliminated it.  But my heart was like an onion, under that layer of fear, were others.  

When your sweet, perfect looking baby girl is diagnosed with a ravenous beast like cancer, you realize how precious life is, how delicate, how fragile.  It is a gift, a gift with no guarantees.   There is a saying that having a child is like forever having your heart walk around outside your body.  There is some truth in that.  Ellie’s cancer showed me exactly how much a mother’s love can hurt.  The idea of exposing myself to more of that scared me.  It scared me a lot.  But through God’s gentle leading and the encouragement of five godly women I confronted those fears one summer.  I said “Ok God, I am ready to walk by faith and not by sight.  I am ready to follow your leading, and not be controlled by fear.”  

Time passed.  I knew our family was not yet ready for the “next big thing”.  We needed time to heal from our time with cancer.  Practically speaking, we also needed time to get neglected things done.  So we waited.  We worked, we healed, we began to live our lives back out in the world again.  And this whole time the call to have more children sat on my heart.  From time to time I would go back to God with it.

“Are you sure?  Do you really want us to do this?  It doesn’t make a lot of sense you know.  We are way past diapers and naps now, our lives will drastically change if we do this.  Our house is kind of small, and we don’t really have much money right now.  Are you certain you want us to have more?  We are getting kind of ‘old’.  Do you remember the horrible postpartum depression I battled?  Do you want us to adopt instead?  You have instructed us to take care of the orphans… are you sure that’s not what you want us to do?”  In my heart I was thinking that this idea was completely crazy and I could produce a very long list of reasons why.  But His patient answers were always the same.  “Yes, I want you to welcome life. No, I do not want you to adopt right now, I want you to welcome life through your own womb.  I know all.  Yes, child, I do want this.  Follow me.”  He was always so sure, so steady, so firm in his answers. 

God calls us not to walk in fear, but to walk by faith.  And so we did.  It took a few months, but soon enough, I was pregnant.  Praise the Lord!  We were excited, and I was still fearful.  But we were going to have another baby…

Ruby’s Story

Ruby lived only a few weeks in my womb.  We lost her before she was even big enough to see.  We were so excited and had told everyone about her, only to have to turn around a week later and tell everyone that she had left us, including our children.  Our eldest was heartbroken.  She loves babies and has wanted more in our family for so long.  The timing of her loss made things more painful for me.  You see, we lost her on election night.  As I woke up the next morning feeling devastated and broken at our loss, the news media touted the great strides and wins for the “women’s vote” and “women’s rights”.  I was sickened.  I could taste the bile in my mouth.  What they meant was the legal right for women to kill their babies in this country.  It was salt in my open wounds. 

My husband was working out of town when it happened.  I felt like my emotions were trapped within me.  I thought maybe when he got home they would come out.  But it was a “birthday weekend” for our eldest daughter.  Before he arrived, his mother and aunt did.  And those emotions were just trapped inside of me.  I tried to put on a face, to hold it together and celebrate the birthday, but I knew I was doing a very poor job.  Inside I was crumbling.  I needed release and I couldn’t find it.  Sunday morning I went to church, alone.  Everyone else stayed behind to see Grammy and Aunt off.  That was fine with me, as an introvert by nature I knew I had a better chance of release if I was alone.  And I knew that the moment I opened my mouth to praise God, I would crumble.  And crumble I did before Him.  In the safety of His hands I let out my pain.

The emotions were intense and confusing, often conflicting.  One day I would feel like it wasn’t that big of a deal, after all, how could I feel so much for someone who didn’t even look like a person?  And the next day I would be brought to my knees, heart breaking and weeping for my baby who died.  I sometimes had feelings of sadness and guilt that I had either thrown my baby in the trash, or flushed her down the toilet without even knowing, without even looking upon her!  But then I would think in some relief that it would probably be worse if I had seen her.  I was shocked and heartbroken by the physical violence of miscarriage, even one so early.  It was a time full of conflicting thoughts and emotions.  It was a time of many questions.  Questions like “Was she really a person?  Did she have a soul?  How should I feel?  Is it really this big of a deal?  Should I just move on and try for another?  Why does this have to happen?”  It saddened me to think of how many children have been lost, how many people are missing from families.  I walked around being envious and sometimes angry of people who were pregnant or had babies.  Happy announcements brought me to tears and anger.  I didn’t like many of the thoughts and feelings I had.  An early miscarriage like that is very confusing and difficult to negotiate emotionally.  

 After a few months I was ready to try again… we were blessed right away with another pregnancy.

Malachi’s Story 

Malachi, snuggled in my womb the day before his birth.

I was nearly 12 weeks, nearly out of the first trimester, the moment when we would finally share why no one had seen much of me for two months.  Our eldest daughter had been telling everyone I was sick and I was assuming they must all think I was dying by now.  I felt a bit like I was dying, so horribly weak and tired, sick.  Yuck.  What did I do this winter?  I spent most of it in bed.  I have never done pregnancy well, and it seems that it gets harder on me each time. 

We didn’t tell right away this time.  I couldn’t handle excitement from others when in my heart I initially felt fear, not joy.  Over the weeks I became more comfortable and began to feel some excitement, some hope.  We slowly leaked the news out to a few people.  I was so sick that we needed some people to be in prayer and to help us a bit.  Then around 9 weeks I started to spot… since I had so quickly lost Ruby I assumed that was what was happening again.  It wasn’t, not exactly.  My midwife sent me to get an ultrasound to hopefully provide us some answers.  It did.  I went in expecting to see a baby with no heartbeat.  Instead we saw a beautiful tiny person with a perfect heartbeat.  Later my midwife called to tell me that I had a sub chorionic hematoma.  It was really tiny, and she was surprised that it had caused any bleeding at all.  I was to take it easy, relax, and wait for it to heal.  No crazy activity or exercise for me.  But, it was not something to “worry” about.  The ultrasound dated my pregnancy several days “later” than I had.  It wasn’t enough to cause any concern.  However, I started a pattern of the bleeding stopping, and then starting again a day or two later heavier… this kept going for over two weeks.  Multiple times I thought it was the end, but then it was ok.  I felt like I was going crazy.  My bleeding never quite crossed the threshold of needing to check it out again, so we just waited.  Plenty of women have bleeding in their healthy pregnancies I was reassured by everyone.  

On a Monday evening, we got together with good friends who have walked through dark valley's with us before.  Before we left they all laid their hands on me and prayed.  They prayed for baby, for me, and most of all for peace.  There had been so much worry, such a roller coaster.  More than anything I really did need peace.

Two days later my bleeding got heavier again.  We went in for another ultrasound.  Again, I went in expecting the worst, and we saw a beautiful little baby kicking his legs and waving at us, heart beating strong.  The hematoma had been healing and had shrunk.  Yet my bleeding had continued to get worse.  I had also noticed that about a week and a half before my symptoms had eased up and I was able to function more.  It was a little early for that, but I didn’t dwell on it.  After all, everyone kept telling me to just relax.  Baby was past 8 weeks with a strong heart beat; the chances of anything bad happening were very small.  I was trying not to see every little thing as a sign.  But something was wrong.  When my midwife called me that evening after getting the ultrasound results, she said that everything looked good.  But then she said “They changed your due date again.  Baby measured 9 weeks, 6 days.”  My heart pounded.  I was 11 weeks and 3 days.  She was in her car, going between two birthing mothers, and without all the paperwork in front of her hadn’t realized the discrepancy.  It was too much.  Part of me knew something was very wrong.  I had tried to deny it, but I knew.  I had to choose… I could let go of my worry and hold on to God’s peace, or I could hold on to my fear.  I chose peace, and when I did God graciously poured it out upon me.  Whatever was going to happen, was going to happen.  And I knew, I have learned by experience, that no matter what, I will be ok because God’s got me.  Should my heart break, He will put it back together again.  I prayed that if this must end, that it would end soon, that He would end this agony of waiting, that the timing would spare the hearts of our girls. 

The next morning I woke with light bleeding, the usual.  Around late morning I started to cramp a bit, again, usual.  Every time I bled it would irritate my uterus and I would begin some light cramping.  However, this time, it only got worse.  Around 2pm it was so bad I could hardly sit still.  By 4pm I couldn’t.  Part of me knew and was at peace with what was happening.  But the other part of me doubted because I had already been wrong so many times before.  Around 6pm I called my midwife and told her what was happening.  She asked if I was bleeding heavily and I told her that no, I was only very lightly spotting.  She was stumped.  She told me that I should go to the hospital.  That I had been under too much stress already and I shouldn’t also have to suffer through this much pain.  After I got off the phone with her I realized that I was moving like a woman in labor.  We called a friend over to stay with the girls and went to the hospital.  In the waiting room the pain intensified to the point that I had tears in my eyes.  I would have cried if I had the energy, but everything was focused on getting through the pain.  It was unbearable.  My poor husband was looking at me with an utterly helpless and miserable look on his face.  He could do nothing to help.  Just when I thought I could not stand it another moment longer, I felt a pop, and the pain subsided just a bit.  I asked Josh if he knew where the bathroom was.  He located it and when I stood to follow him, a huge gush of fluid poured out of me.  I waddled through the waiting room of curious onlookers to the bathroom where I birthed our perfect, tiny baby Malachi, born still at nearly 12 weeks.  He was perfect.  So tiny he would fit into the palm of your hand, so fragile, but perfectly formed.  I was relieved to know that he was not in that body in that bathroom of the emergency room.  He was not present in that moment of anguish and suffering.  He had gone home to Jesus.  

The pain was gone immediately.  The nurses were very kind and caring.  They took the baby and the tissue I had passed to the doctor.  It was complete.  They let me go home with no further intervention.  This past week has been a bit surreal.  We never told our girls about this baby.  After the deep disappointment of Ruby, we didn’t want to get their hopes up.  We had planned to tell them as an Easter surprise.  But God spared them that pain.  They do not know.  Someday we will tell them, but not yet. 

God’s Story

God has been weaving the same theme through our lives and the lives of our children over the past five years… life is precious.  Every single one has meaning and purpose.  Every single one is important.  Every single one is a person created by Him.  Seeing Malachi healed many of the open wounds and mysteries left from Ruby.  She was a person.  She is with God.  We grieve them both. 

In a twist that is one of the mysterious paradoxes of life, the same day we lost Malachi, Ellie cleared her two year post-treatment check up.  This is “graduation day”.  This is her life back.  This is a day we dreamed of.  And yet… as we celebrate the gift of having her here with us, we lose another. 

There are many things I don’t know.  But I know this, God is worthy of our trust and praise.  He has created each one of us with purpose, including the babies who only live on this earth inside our wombs.  They are his people, created for His purposes.  They matter.  Life matters.  I do not regret following where God has lead, even as my heart breaks.  Each one of us is here by his grace.  There is nothing more important than walking with Him, wherever He leads.  He knows all, I know but a little.  I will continue to hold His hand and follow Him wherever He leads, through the light and the dark.   

And so, I do not know what comes next.  My body and heart need time to heal.  Today I need to find a pair of pants that will fit and I’m hoping so very much that they don’t have to be maternity pants.  There is much pain in living inside an inflated body with an empty womb.  It will take time to get back to normal both physically and emotionally.  It is time to step back out into life, but I couldn’t do so without acknowledging what has happened, acknowledging the personhood and lives of our lost babies.  I don’t want to forget that they existed.  They were people, God’s people.  They are our children.  They deserve to be recognized and mourned.  We love them and will never forget them.  

Ruby and Malachi, we love you so much and can’t wait to hold you in our arms one day.  

 

 

 

 

Life After and The Big Shave

My barber and I after the deed was done!

 

I can hardly believe it's October already.  Life has been so busy since Ellie finished her treatment at the end of March.  We've been embracing and living our lives.  We find joy in all the little things, the small freedoms, that we used to take for granted.  Recently we were able to go to Seattle to my cousin's wedding.  I was out on the dance floor with my girls, their cousin, and a whole lot of my own cousins dancing to some lyrically inappropriate song I'm sure.  And what was I doing?  Starting to cry.  Being in that crowded place, sharing germs(!), with a child who had the immunity, energy and stamina to dance all night surrounded by family... was overwhelming for a moment.  We missed many weddings during her treatment, even my own brothers.  So to be able to rejoin our family in celebration was a really great moment to be treasured.  It may not have meant a lot to a lot of people, but it meant the world to us. 

My silly fan club!

September is Childhood Cancer Awareness month.  Although if you know me you probably already know that!  September was busy with getting the message out and also preparing for my trip to Washington, D.C. for 46 Mommas.  It brought with it a heavy heart at times.  It's hard remembering.  It's hard looking at the statistics and facts that represent the picture of life with childhood cancer.  It's hard remembering the kids we know who have passed and seeing the ache that is ever present in their families today.  But if we don't talk about it, who will?  Our kids can't!  This entered our lives and changed them forever in many ways.  It's our job to let the world know what's happening.

Here are a few of the saddest facts about childhood cancer treatment today:

• There has only ever been ONE drug developed for the treatment of a single childhood cancer.
• 2/3 of children who survive a childhood cancer suffer from lifelong side effects, this includes secondary cancers caused by the toxic therapies used to cure their first cancer.  Then there's the run of the mill... hearing loss, organ damage, brain damage, infertility, limb amputations, reduced immune function, shortened life span, etc... 
• At diagnosis 80% of childhood cancer patients have cancer that has moved to other areas of the body.  This same statistic is only 20% in adults.  
• There is no knows risks for childhood cancers.  They simply do not know why most occur.  There is no known way to prevent them.  
• Childhood cancer is the number one disease killer of our children.  It kills more than diabetes, asthma, cystic fibrosis and pediatric AIDS combined. 

That isn't a pretty picture is it?   Neither is the picture of mothers, on a stage, holding pictures of their children, while someone shaves their head and that mother hopes, prays and pleads with the world to listen, to fund this vital research so another mother does not have to bear their pain, so that another brother doesn't have to miss his brother, his best friend.  So another father doesn't have to miss playing soccer with his sons - plural.  It breaks my heart.  It should break yours too.  We have suffered through treatment.  And I don't want to make light of that.  That was suffering indeed.  But we have Ellie.  We have her silly little self here to delight us all everyday.  Will she suffer in health for the rest of her life?  Yes.  Her life was forever altered, and shortened, at the age of 2.  But I can't stop looking beyond, at the ones who have lost their children.  With treatment for childhood cancers it's all an experiment.  Odds don't mean anything.  They simply don't know.  You get what you get, and there isn't anything that can help predict what that is.  We are blessed to have Ellie with us still.  I am not going to take that for granted.

 Just before losing my locks! My hair went to Wigs for Kids.

SO!  The big shave!  I flew out to DC on a Saturday.  My friend, Ivory, picked me up and whisked me across the river to her lovely Capitol Hill abode.  I was going on only a couple hours of sleep so I think the most exciting thing we did that evening was go to Whole Foods.  Which for someone with food intolerances and doesn't have a Whole Foods, really is exciting.  On Sunday we were tourists and went to see the WWII and MLK Memorials.  Both were new since my last time in DC.  On Monday and Tuesday I was on my own.  Well, Monday I had Teddy, Ivory's dog.  He and I walked all around the hill.  DC is such a beautiful city.  I absolutely loved it.  Tuesday I spent my day at the National Gallery of Art.  Oh, how long dormant that part of my life has been!  I stayed until they closed and kicked me out.  I stood in front of some artwork and laughed, some I marveled, and some ignited deep parts of my soul and made them sing.  Literally.  I was singing.  I simply must make time in my life for this again.  A funny side note... it's really hard for an artist not to TOUCH the art!  Especially the Pollock... I really wanted to touch the Pollock!  I had to settle for getting really close and looking at odd angles to see all the depth of texture while a security guard kept a close eye on me.

Ivory and I. She helped the barber rid me of my long locks.  I love this girl with tears in her eyes!

Monday evening Ivory and I went out to Arlington and met Danielle, our 46 Mommas local event planner extraordinaire.  We helped with some simple tasks for the event and then the three of us went to dinner.  It was really lovely.  She shared with us about her son, Mason, and his last days.  During the ride home Ivory shared with me about her dad's last days.  And she said what I then heard several more times during the next few days.  Through her tears, she said "I can't imagine watching your child go through what my Dad did."  Ivory worked her PR magic on DC for the Mommas.  She had everyone there.  We can't thank her enough.  She was not the only volunteer that was fueled by such motivation.  Over and over, from our volunteers, I heard the same story... cancer had touched their lives.  They had suffered themselves, or watched an adult suffer greatly at it's hands, and they could not stand the thought of a child going through that.  Sadly, the reality is, childhood cancer treatment is MORE brutal than the treatment of most adult cancers.  Children do not have drugs designed for them.  Children get hand me down drugs from adults.  And you would think that they would be given in smaller doses, but you're wrong.  Children are given much, much higher doses of the same drugs.  To the tune of 4-6 times more.  Maybe more.  Why?  Because the drugs aren't designed to kill the childhood cancers.  So they drown the kids in them and hope that it's toxic enough to kill the cancers.  Often, it's the treatments that are so toxic that they kill the child, not the cancer.  "The Children are our Future"... are we treating them that way?

 Ellie's Hope Flag (And me with frizz - humidity YIKES!)

The event itself was great.  Union Station is so beautiful.  So beautiful.  We had so much press there.  We've named them the "Momma-razzi".  I've never seen so many cameras!  All for 46 moms who have fought this horrible beast, some have "won" and others have lost.  It was really beautiful.  And it was so wonderful to see the hopes and dreams and plans come to fruition, and in many ways, our expectations were exceeded.  It was a fantastic event.  Over the next few days the Mommas hit the hill.  I had to come home so we could get ourselves on over to Seattle that weekend.  I was sorry to have missed it.  They took part in advocating with their representatives to support the Creating Hope Act.  Then they took part in the Childhood Cancer Caucus, and a press conference with the sponsors of the Creating Hope Act.  They were busy fighting for our kids.  You too can help!  Contact your representatives and ask them to support this legislation.  Here is a link to a site which will look up your representatives and provides you with a form letter which you can customize, if you wish, that is simple to send to your representatives with a few clicks of your mouse.  Click on the Creating Hope Act and follow the steps.  If you'd like to know more about how the Creating Hope Act works, DC's FOX 5 did a great little piece that will explain it.  By the way, FOX 5 also did a great piece the night of the shave that was picked up by FOX affiliates nationwide.  Thank you FOX 5!

Having a bald head attracts quite a bit of attention.  And it has been interesting to watch the reactions.  They're all over the place.  Some people look at you really sad and then look away quickly.  Obviously they think I have cancer.  I try to smile real big before they look away.  That always confuses them.  I try to wear my Momma gear to prevent this from happening but not everyone notices.  I'm bald for a reason, I want to advocate.  Yesterday I had a woman stop me at Costco and she and a man at her sample station asked all kinds of great questions and wanted to know about what I was doing.  And having Ellie with me definitely inspires people.  How can you look at her beautiful face, and her lovely curls, and say no?!  Then they wanted to know where and how they could donate!  The woman, was a cancer survivor who echoed those words I hear so much "I can't imagine a child going through this.".

One reaction that's really fun is the "Hey!  I saw you on TV!"  It happened to me first at the DC airport at 5am going through security.  "Hey, are you one of the 46 on the news last night?  That's really cool!"  On Saturday Mindi and I met for coffee here in Spokane.  Two bald heads together.  That sure gets attention!  We had a couple of tv interviews here in Spokane, KREM 2 followed us to Ellie's 6 month post-treatment appointment and Mindi and Gregory met us there.  Then on Friday morning KHQ6 asked us down to the studios to do a live interview at 5:30am!  I don't think I like live.  That was a little scary!  We were really fortunate to have gotten such interest and we're grateful for the publicity.  Hopefully someone saw it who wants to make a difference too!

 Getting shaved!

While going bald does get a lot of attention, the reason, is to get a lot of DOLLARS for research.  That's why we did it.  Not to just get attention.  There's a very important reason.  When I look down my list of donors, it's not a bunch of people with lots of money.  It's a family with 6 kids, it's a college student, it's regular working people giving a little bit of what they have.  It adds up!  Just look at my current total!  It's over $5000.  But guess what?  I'm asking for more.  I'm asking for more of you to give just a little bit of what you have to help the 46 children who today, tomorrow, next week, next month, every weekday into the future, will be diagnosed with cancer.  This is for the children of the future.  So that they can have a bright future.  Aren't they worth it to brew your own and skip those expensive coffee stand coffee's for a week?  Or a few brown bag lunches?  Every little bit counts.  If you can give $5, do it.  Every bit counts.  I, and so many others, are so grateful for every single solitary dollar! 

And with that... here's my St Baldrick's page.  If you don't want to give online, cash and checks (made out to me is easiest) can be given to me as well.  Every little bit counts.  Every bit.