A Stiff Upper Lip: Denial, Grief, and Acceptance of Chronic Disease

It's been over half my life since I first began having pain walking. I was 17 and a junior in high school. I credited to my hips but didn't think to wonder why a teenager would be having trouble walking. I chalked it up to too much exercise. I didn't see a doctor. I didn't think it might be a sign of something to come that would effect my mobility. My mobility was being effected but I didn't even think of it that way. Denial?

We had Ankylosing Spondylitis in our family. I knew it was arthritis and it effected the spine, but that was about all I knew. I didn't know it was a chronic inflammatory disease. I didn't know it was systemic and could effect your organs as well as your joints. I didn't even know it could harm your eyes or your hands.

I did not for a second put our family history of AS and my hip pain together.

It's been over half my life since my first symptom of AS. It's been 8 years -- I can't believe that -- since I began having a lot of pain. It's been about 7 years since I started waking with a stiff lower spine, 4.5 years since my oldest was in Kindergarten and I had my first of what I think of as a general autoimmune flare -- crushing fatigue, fever, swelling, nausea, and a general feeling of illness along with the pain, stiffness, and occasional limping.

I remember the days of waking feeling like I needed WD-40, and how I knew a hot shower and a couple of Ibuprofen would relieve my symptoms greatly. How much life has changed since then...

When I was in the process of being worked up for diagnosis -- was it Lupus, they wondered, Rheumatoid Arthritis; yes, they acquiesced, it could be Ankylosing Spondylitis since I had family history, but "that wasn't as common in women" -- I read blogs of women living with severe pain and medical difficulty. I was inspired and determined that I would be that kind of woman. I would be as positive as I could be, I would shine, I would move forward in a way that would inspire other people. By the time a rheumatologist confirmed my primary doctor's suspicions of AS, I was already certain I had it, and basically walked out of his office and forward into a life of Positive & Inspiring. That was what mattered to me, that I could help others know they weren't alone, that I could show how to live life in a positive, joyful way, even in the midst of pain and with a disease that often disables and disfigures.

It's been 3.5 years since diagnosis, and 1.5 years since a Spondyloarthropathy specialist told me that I have a full blown case of Ankylosing Spondylitis. Last year, still another rheumatologist told me I have a severe case of AS.

It's been on my mind a lot recently, the severity of this disease. How it hurts and cripples people-- people I've met online and in person, people I call my friends. I know people who've had spinal surgeries, hip replacements, people who are essentially homebound. I know people who have organ involvement, eye damage, who need all sorts of mobility aids including wheelchairs to get around. I know young people who have died of organ complications to AS, and to suicide.

The pain, physical and emotional, can be unimaginable.

Sometimes it feels like I have only allowed myself to be an advocate for those people. For everyone else with AS. Sometimes it feels like I have only thought of them fusing, of their necks curving and their heads being permanently locked into a forward stoop.

This disease is not a joke. Part of how I can move forward in a positive manner is accepting that reality. This is real and it has been life changing. More life changing than most people realize.

I am working on starting to allow myself to feel sad about that. Not just grateful despite the disease. Not just thankful it hasn't yet effected others who I share genes with. I won't wallow. But I do need to process and grieve how my life is effected, how my family is effected, and that my future will be effected by a genetic, chronic, systemic, arthritic, degenerative and progressive disease.

That's not wallowing. That's just moving out of denial and into acceptance. Acceptance is acknowledgement, and that can free us to move forward. Acceptance is not giving up, or giving in, or refusing to fight.

"God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference." {Reinhold Niebuhr}

For the Woman Grieving Her Baby

In 2005 I lost a child at 10 weeks gestation. I had no symptoms of anything going wrong. I went in for an ultrasound and discovered that our baby had no heartbeat. They told me this was called "Missed Miscarriage." It was a type of miscarriage I didn't know existed.

In the years since, similar things and worse have happened to women I know -- neighbors, college roommates, childhood friends. And I've learned that no matter how much I hurt for them, our experiences are not the same. I want to help and I want to say the right things -- ideally one exactly right thing that will bring comfort or an ounce of peace.

Sometimes I plan tea parties in my mind. I daydream an event in my home where I would gather all these women on my couches and tuck warm blankets around them. My home would be clean. The coffee table would hold boxes of the softest tissue. My kitchen island would offer cookies and fresh fruit and tea and coffee and hot cocoa. Big, big mugs to hold enough hot liquid to help swallow down each other's stories; to wash away the hurt.

I would design them all a journal. I would hand it to them, wrapped in tissue paper and string, with a sprig of Forget-Me-Nots. I would say, "It's okay to remember. It's okay to process the loss of your sweet baby, your child, until you have nothing else to say. Until the brutal mourning transitions into a fragile, yet beautiful butterfly that flies free and simply lands on you from time to time, a reminder."

I would lend them my books on miscarriage, stillbirth and infant loss. I would offer anything at all to ease the grief.

Most of all, I would say, "Please don't think you are alone."

I would say, "Find safe people to talk about your baby with. Find people who will listen and not try to minimize what you're going through."

I would say, "People will tell you, 'At least you have your other child(ren).' Yes, that's true, you do. You have someone else to get out of bed for and to pour your love into and to hold when your arms throb with emptiness. But children aren't replaceable. Your living children do not replace the unique bond you formed with the one who died. You have every right to remember and grieve and miss the one who isn't here. And you have every right to love the lost and carry the memory of your sweet baby in your heart, even though your arms cannot do the holding."

I would say, "Grief has its own timetable. Even when you think you've already grieved your loss, it may come back. It may hit harder two years down the road than when it first happened."

I would say, "Miscarriage is not a heavy period! Miscarriage is the death of a living, growing baby. Your baby." 

I would say, "In the darkest pockets of sorrow, you may feel you're going crazy. Grief and madness are not the same, but on this journey, they may feel that way. You will survive this. However, if at any time you have thoughts of hurting yourself or others, or if you begin to make plans or fantasize about your own death; if you can't get out of bed for days on end, please tell someone you trust. Please say the words, 'I need help.'"

As much as it's cliche and as much as you might not want to hear it right now, I would tell you, "It gets better. I used to think that perhaps those further down the path of loss -- further healed -- hadn't had as strong of a connection to their baby as I had to my Jordan. But no matter how long it takes, no matter how many times the grief comes rolling back in -- the strongest ocean waves threatening to suck you under -- it will get better."

You will always remember. You will hold that baby in your heart and carry them your whole life. You will not forget. But eventually, after enough tears and hard work to process this huge, huge hole in your life, the memory of your baby will not bring pain. It will bring a tender, sweet joy.

It's okay to do exactly what you feel will bring you healing. It's okay to write down what you're feeling and not mince words. It's okay to crouch in your closet and sob. It's okay to find the innermost part of the forest and scream. It's okay to sleep with a teddy bear when your arms feel so empty they might detach from your body. It's okay, friend, to do what you intuitively know will help.

Maybe that's planning a ceremony. Maybe that's a memorial service. Maybe that's making messy art. Maybe that's buying a baby blanket even though you have no baby to swaddle. Maybe that's starting a blog. Maybe that's training for a marathon. Maybe that's raising money for organizations that fight for children. Maybe that's sponsoring a child.

In our family, there's a day every fall that we call Jordan Day. It's not a birthday and it's not a celebration, but we make a special meal -- always Mexican food, as that's what I craved when I was carrying Jordan -- and we light candles and eat as a family, and we remember and acknowledge the missing member of our family.

Healing will come. You'll never forget. You'll never feel it didn't happen. But healing will come. It will leave a scar, but you will heal.

Until you heal, please know I am crying tears for you and with you. Because I know the depth of my love and longing for Jordan, I can imagine the depth of yours. So when you need me, let me know. I will walk this path with you.

You are not alone.

National Pregnancy & Infant Loss Awareness Day

Today we remember, on a national scale, the babies gone too soon due to miscarriage, stillbirth, infant death, SIDS...

If you are one effected by a loss like this, please share a bit of your story in the comment section. It can be just a date or the name of your little one. You are not alone!

Sara at Rest

{click twice to enlarge the picture}

He Watches Me

While struggling with pain, nausea and sorrow this morning, He sends this song to mind:

Why should I feel discouraged,

Why should the shadows come,

Why should my heart feel lonely

And long for Heaven and home,

When Jesus is my portion?

A constant friend is He:

His eye is on the sparrow,

And I know He watches over me;

His eye is on the sparrow, 

And I know He watches me.

I sing because I'm happy,

I sing because I'm free,

His eye is on the sparrow,

And I know He watches me

His eye is on the sparrow,

And I know He watches me

"Let not your heart be troubled,"

His tender word I hear,

And resting on His goodness,

I lose my doubts and fears;

Though by the path He leadeth

But one step I may see:

His eye is on the sparrow,

And I know He watches me;

His eye is on the sparrow,

And I know He watches me.

Whenever I am tempted,

Whenever clouds arise,

When songs give place to sighing,

When hope within me dies,

I draw the closer to Him,

From care He sets me free:

His eye is on the sparrow,

And I know He cares for me;

His eye is on the sparrow,

And I know He cares for me.

{lyrics written by Civilla D. Martin in 1905}

To hear our sweet friend Sara sing it, click here and scroll down to "His Eye is on the Sparrow"

He gives strength for today, doesn't He?

Sweet Sara

Along with so many others, I am sad today as a dear friend, Sara Frankl, is nearing the end of her life.

Sara has inspired thousands of people through her blog Gitzen Girl, about her journey with Ankylosing Spondylitis and her daily decision to Choose Joy. I found Sara's blog years ago and was fascinated to read her posts as she was the first person I had ever heard of with AS, other than my dad. She was a woman (AS used to be thought of as a men's disease) and she was just a handful of years older than me. I loved her red curls, her beautiful eyes and smile, her heart, her story, and most of all, her attitude.

She has been such a blessing to me, especially since I began my own journey with AS. Little did I know, those years ago, that we would share this disease.

While Ankylosing Spondylitis is known for attacking the spine and other joints, it can also become systemic and effect organs such as the heart and lungs. That is what happened in Sara's case.

Sara has been very ill and recently found out that her organs are shutting down. She is at home, with hospice care, surrounded by her large, loving family and her sweet little dog, Riley, who has been her constant companion.

Sara, you are so loved. You will be missed. We will not forget what you've shown us about life.

No more pain, no more sickness, no more tears, Sweet Friend.

Breathe In, Breathe Out

The golden sunlight washes over our small coastal town and I breathe in a deep sigh of renewed strength, and breathe out a breath of thankfulness.

Tragedy rocked our community last week. A 33 year-old mother and her 8 year-old daughter were killed together in a horrible car accident. Our little town is mourning.

As the questions and grief raged within our hearts, the wind, rain, and hail raged outside our doors.

Wednesday we gathered to remember this beautiful duo that was an integral part of our little town. By Wednesday night I was emotionally drained, exhausted from the tears shed over these precious lives and this week's physical pain and anxious about new symptoms. I went to bed and cried and prayed and tossed and turned, tangled in sheets and hard questions.

Sleep finally came and the next day my little home and its wooden floors were bathed in the same beautiful, soul-renewing golden sunlight we have today.

I breathed in a deep exhausted breath and breathed out all the hurt and the fear and the questions, and remembered that God is still here, He hasn't changed, and that no matter what comes, He will walk with us.

The Nights that No One Sees

It comes on gradually throughout the day and by evening I am quiet, thoughtful, moody. By bedtime I feel angry -- at the dishes that are overflowing from the sink for the second or third time today, at all the chores and responsibilities and stressers in my life, and at the lack of solitude and time for myself and the interests I want to pursue.

I go to bed, overheated from anger and doing yet another load of dishes.

I wad up in a ball and press my eyes -- left right left -- as if I mash my hand against my eyes enough times the tears won't be able to escape.

But they do.

My chin quivers and the tears pours out like they haven't in months and I can't figure out what I'm crying about.

It can't be the dishes.

He says he's sorry and is there anything he can do and volunteers to rub my back, and all I spit out is, "My back doesn't really hurt much right now."

It's 5 years from one of my post-miscarriage surgeries and I know that it's possible that my body stores memory and has some sort of internal calendar and that given the state of the pain in my lower abdomen, even if my best friend hadn't reminded me of the surgery anniversary today, my body would've remembered on its own.

I'm sobbing now. Big, loud, noisy sobs that turn my nose so stuffy I can't breathe and eventually I go to sleep with my mouth open, waking periodically with a mouth that feels like I've been sucking on a cotton ball. But not before I cry out a series of disjointed statements and phrases. Phrases about judgment and feeling uncomfortable in certain settings and the longing and the missing and the stress and the ridiculous things that come out at times like this that really aren't a big deal at all.

In the morning, purple eyelids inflated with tears greet me in the mirror. I feel embarrassed and ridiculous and still quiet -- hushed by the big loss of a very little life.

Once Upon a Time: A (Not So) Fairy Tale Ending

Once upon a time there was a happily expectant family. Already blessed with a child, they were thrilled to be pregnant with their second child. They told all of their friends and family, purchased crib bedding and nursery decor, and the pregnant woman went to bed every night with her hand on her belly and What to Expect When You're Expecting on her nightstand.

And then something completely unexpected happened. Towards the end of her first trimester, the woman went in for an ultrasound, and with no warning whatsoever, was told that her baby had died.

We are that family.
I am that woman.
That was our reality just over five years ago.

A procedure was done and I went home no longer pregnant.

And then, perhaps because I was doing such a good job of keeping it together emotionally, my body fell apart.

Four surgeries happened: in January 2006, again in January 2006, January 2008, and March 2008.

And in between the surgeries, we were given the gift of joy: another baby. Born healthy.

And in between the surgeries and the pregnancy and the delivery and the raising of two beautiful girls, my body continued to throw a fit, this time in the form of chronic pelvic pain, often severe.

So here we are today, five years later, and our daughters are healthy and happy. Our youngest recently turned 4 and we are gearing up to celebrate our firstborn's 7th birthday, later this month.

And we are still one child short of what we expected.

So just after the 5th anniversary of losing our middle child, whom we named and loved and miss, we decided to pay tribute, somehow, to the memory of that sweet baby we wanted so badly.

Allow me to introduce to you a little boy who has stolen our hearts. This is Cristian:

Cristian is a little boy from South America, about to celebrate his 5th birthday. It is our privilege to sponsor him through Compassion International*. Cristian was born just a couple months before our baby's due date.

Sometimes Happily-Ever-After doesn't happen, but in this case, we found a way to make some good from bad.


*If you have never heard of Compassion, please take a moment to visit their website and learn more about them, 'Like them' on Facebook, or even consider sponsoring a child. 

My Miscarriage Story - Final Part

It’s been 5 years this week since we said goodbye, and not a day goes by that I don’t think of the baby we lost.

Between then and now, I had 5 surgical procedures and a lot of pain, both physical and emotional. It's been quite a journey.

Miscarriage is not what I once thought. Before I experienced it, I thought miscarriage was sad, a disappointment, a setback… I didn’t realize that miscarriage forever changes you; that the baby you lose is a child you will grieve, that even if you have a healthy child the next time, it doesn’t replace the loss. Children aren’t interchangeable. With each of my babies I formed a unique bond.

Losing our baby has changed me. I cry more easily when others hurt. The lense through which I view the world is different now. Loss has sharpened my perspective.

I also hold so much tighter to my daughters. Losing one has helped me not to take my girls for granted. I now view every healthy baby as a miracle. The process from conception to birth is so intricate, and I feel so lucky that I have two healthy children here with me. Natalie was born healthy and hearty (at 9&1/2 pounds) the year after we miscarried. I hesitate to use the words "our family is complete" -- I suspect no matter how many kids we could have, there would always be one missing -- but she is a piece that belongs to this puzzle, and she has brought us great joy. As they say, joy comes in the morning. For me, joy came in the mourning.

I believe we will hold our baby in Heaven, and that this loss will be redeemed there. Until then, I don’t know that you can fully heal. Maybe you just learn to cope; integrate the loss into the fabric of your life.

What helps me the most is to hold onto my faith. The hope I have in Christ is real, and I could not walk this road without Him.

High Tide, Low Tide

It comes and goes, like the tide....

Today I feel the emotions of loss creeping closer again. Just a few days ago I was standing on the sunny beach, the water a great distance away. Now I see the wave coming and I know there's no point in running, because it will catch me.

I have taken quite a break in writing my miscarriage story. I didn't realize when I started writing it just how long it is and how many parts there are to it. I'm also not good at telling a story briefly.

So I'll be back to it. Thanks for being here with me.

My Miscarriage Story -- Part II

Just days before that fateful ultrasound, the future looked bright for our family. We had signed papers on our first house, moved out of the house we were renting, and settled the three of us and minimal possessions into a mobile home while we got the new house ready – the new red house that we had bought for the backyard, the safe neighborhood, and the 3rd bedroom for the new baby… I had even already purchased Winnie the Pooh crib bedding and nursery décor for that 3rd bedroom for Benjamin or Sierrah.

Now we returned home from the D&C to a “home” that was not ours, considerable work to be done on the new house, a toddler to try to explain the loss of her sibling to, recovery, and grief.

In those first few weeks, Jonathan & I spent a lot of time talking and crying together. We discussed so many things we had never considered before, especially regarding faith and theological beliefs. We set out on the road to processing and grieving our loss, all the dreams we had for our family and this greatly-desired second child, at the same time that we began remodeling our newly-purchased house so that we could move into it.

The support we received from friends and family was such a gift – I received flowers from my MOPS (Mothers of Preschoolers) group and from a former pastor and his wife. Cards appeared in the new house’s mailbox that said people loved us, were praying for us, and were so sorry we had to go through this. My sister called in tears over the news, and many of my friends emailed me their condolences. One card in particular sticks out in my memory:

“We shared with you as you dreamed about and anticipated the birth of your baby… and now that your hopes and dreams have ended with the loss of your baby, we want you to know that we share with you in your grief, too. Our thoughts and prayers are with you during this difficult time.”

The thing that helped the most though, I think, was when people cried with us and for us. One card we got said, “After I told our family your sad news, we all cried together. We are so sorry for your loss.”

We continued on with our lives – Jonathan working during the day and then working on the house at night, while I cared for Hannah and our home. I ate Dove milk chocolates and journaled. Late at night, after Jonathan returned from working on the new house with my dad, and after Hannah was sleeping soundly in her travel crib in her room, we would sit on the couch together and talk. I wanted to heal and time to pass so we could try for another baby, but it was also important to me that we not forget this baby. Little did I know at the time that forgetting would be impossible. I didn’t want to feel we had replaced this baby or that he didn’t matter, so Jonathan & I chose a name. We picked a name that worked for a boy or a girl, since I wasn’t far enough along to know the gender. The origin of the name was from Hebrew, just like ‘Hannah.’ We also chose a middle name. It was a sad time, but I was coping and I still had great hope for the future.

Little did I know what was yet to come…

Hope

Loss changes your perspective. It makes you realize (sometimes in the most painful way imaginable) that things are not what matter, people are. This Christmas Eve day I am thinking of those who are celebrating Christmas despite the absence of someone they love. Maybe the pain is so deep or the loss so fresh, they are not even celebrating -- they are just enduring.

For those people, I am wishing for future Christmases that they can enjoy... when the hole in their hearts is not so raw, when the people they are missing are back in their company. Maybe that reunion will take place in this life, and maybe it won't happen until the next, but the thing that I love most about Christmas and the true meaning behind it, is Hope.

Hope that we will celebrate Christmas with grandchildren near.
Hope that next Christmas the child we are longing to adopt will be in our homes.
Hope that our siblings and children will return safely from serving our country.

Hope that the babies we have lost to miscarriage, stillbirth, SIDS, infant cancer ... will be restored to our arms once again.
Hope that the friends and family members we have had to say goodbye to, we will see and laugh with again.
Hope that came in the form of a baby born in a smelly barn.

Hope that is possible because of our Savior.

If you feel empty and alone this Christmas, if you feel the absence of someone you love, just hold on. Hold onto hope.

Remembering Our Heroes...

Almost seven years ago, my beloved grandmother died. She was young; her death was sudden and unexpected. Today is her birthday.

She loved God and she loved people, and her life reflected it. She prayed fervently for me, and all of the members of our family every day. She did her best not to judge. She used her time to be a friend, her hands to serve (even if it meant scrubbing toilets or doing dishes), her voice to encourage; her home to offer hospitality. She touched hundreds of lives.

So along with the men and women, past and present, who have served, honored, and defended our country, I remember and pay tribute to my Grandma Lonnie, one of my personal heroes.