Norah's Story

Tuesday, April 19, 2016

A Little Perspective.....

My family has lived through a lot of tough things in the last several years.  We've done grief, loss, sadness, fear, and sickness.  I've had close contact with death through the loss of Norah and through my own brushes with it along the way. Through all of it, time has helped to heal a lot of the wounds and broken pieces and God has shown us over and over that in His time (not ours) will life feel whole again.  And the whole life I thought I would have is not even close to what He has given me.

If I were to lay my life out in a timeline, I never in a million years would have picked to lose an unborn baby, to almost die from severe blood loss, to struggle to get pregnant again, to go home with my beautiful baby and suffer a stroke not even 24 hours after being in our house as a family, to spend 9 days in the hospital and not even care or know that I had just given birth, to lose my short term and immediate memory, to go to therapy for months, to not understand what has happened to my brain, to undergo many, many MRI's and CT scans and see many, many doctors who see my case as special with no definitive diagnosis, to suffer from daily persistent headaches.....  These are all big, hard things, and I've done it all in less than 3 years.  I'm not trying to make myself out to be a martyr because I know you may have gone through some hard and difficult things in your life as well.

But I'm here to tell you that you CAN DO HARD THINGS, and you WILL GET THROUGH THEM.  You will be different when you hit the other side.  I have so much perspective on my life now that I never would have had had we not gone through this stuff.  I think back to 3 years ago, when I cried  I wanted Norah so badly, and the depth at which that loss hit me was so deep down inside me that I never thought I would get over it.  But God showed me that He is in control, and each day I cried less tears and we began to honor Norah instead of mourn her loss.  My kids will always know that there is someone missing in this family, and we will always work hard to honor her in the way she deserves.

We have been shown over and over again the goodness of God's people who fed us, took care of our children when we couldn't, and most importantly prayed for us.  We have retired parents who lived with us when Cecilia was so tiny, and I couldn't take care of her (and the other two) without help. I believe that things don't naturally fall into place when you are in a crisis.  God gives you the strength and tools you need to get through each day.

Is my life easy and beautiful day in and day out now?  Of course not!  But I have a greater perspective on my life as a whole--almost looking down from above to see that these hard moments are not all there is.  We will all have suffering and hardship on this earth.  We can't escape it or prepare for it.  But God will teach you and mold you into a different person.  You will learn things about yourself that you never knew were in there!  You will come through it with more compassion, generosity, gratefulness, and love and those things will prepare you for your next trial.  And one day, we won't have to worry about death or sickness, financial stress or infidelity, greed or divorce.....we will be in the perfect place with Him.

Thursday, February 4, 2016

The fear is real....

I guess I've always been a fearful person.  I'm not one of those people who loves roller coasters or would dive from a cliff into the water.  I like to have my feet planted solidly on the ground.  I like to know all my people are safe and sound.  I worry if Greg is just a few minutes late--was he in an accident?  Why didn't he call?  Then the phone rings, and he tells me he is just getting gas.  I breathe a collective sigh of relief.

It is actually no surprise that the events of the last few years have just magnified my ability to fear and worry.  When my neurologist told me to go to the ER last week, tears just poured from my eyes.  The kids were about to walk in the door from school.  She said "we will both just sleep better tonight for you to go get a CT and make sure you aren't hemorrhaging."  I could barely talk.  Maggie walks through the door and immediately notices that I am not alright.  She begins to cry too when I tell her that I just need to go to the hospital to get my head checked--that I have another strange headache the doctor wants me to get checked out.  She turns 8 this weekend.  She seems so much older and mature all of a sudden as she says, "Mommy, sometimes when you go the hospital they don't let you come home."  Her words were like a knife in my heart.  All this time, I have been so impressed by her resilience.  Her ability to continue to go on with her life like everything is okay.  But it was in this moment that I realized--she gets this--she understands that I've been sick and can get sick again.

The drive to the ER was like deja vu.  The walk to the doors seemed so similar to a year ago.  They immediately ran stroke protocol on me--what month is it? who's the President? where are you?  close your eyes and raise your arms in front of you.  I know all these questions by heart now.  They ask them a lot after a brain injury.  As we sat in the waiting room, my head pounding, all I could think was the worst case scenario.  Do I have a brain tumor?  When will I stop being able to talk or feel my limbs?  Greg reminded me that I was okay.  We are just here to get it checked.  Breathe.

Six hours later with a dose of some pain meds in my IV and a normal CT scan, we came home.  As the days went on, my strange headache seemed to get worse.  The fear rising with each pound of my head.  My google searches looked like this....Greg texted me a picture of this from work and told me to stop googling!

It's hard to be so scared.  I never wanted to know what this type of fear felt like, and last week I lived it each and every moment.  I took everything the doctor told me to take and nothing took the pain away.  Finally after a dose of steroids I started at the end of last week, my headache finally started to ease.  Another collective sigh of relief.   Fear is so crippling.  I know this won't be the last time I feel this way, but for today, I am grateful for a little less of it than last week.

Wednesday, January 20, 2016


One year ago today, I suffered a stroke.  I was a 34 (almost 35) year old, four day post partum, healthy woman.  I will venture to say that this year was the fastest of my life.  I barely remember January-April of last year, but I know my family was loved and cared for so well.

Cecilia will never know that I wasn't her #1 caregiver during her first year.  She won't remember that I didn't get to snuggle her and take in every moment of her itty bittiness.  I'm thankful for that because I have experienced a lot of guilt for not being the same mom to her as I was to Maggie and Elliott.  We are making up for it now, but the things I had to just give up on still haunt me a bit.  I hate that her birthday, one we had waited so long for after we lost Norah, will always have stroke attached to it.  We certainly celebrated her 1st birthday (will post about that soon)!

After Cecilia's birthday party, a friend of mine handed me a letter.  It was dated January 21, 2015.  She has been such a blessing to our family over the last year.  Her work schedule allowed her to watch our kids during  many of my appointments and scans.  She wrote this note to me and kept it in her Bible to give to me.  The line that stands out to me is this...."When I was in the waiting room last night, I kept thinking about all the other people there.  What do people do in the ICU waiting room if they don't know God?  I'm so thankful to be surrounded by so many incredible people that know God."

I think about my story and how God has strengthened me during the really hard times.  In the midst of it, you are just trudging along, but once you get to the other side, you can really see His hand.  Anything can happen to us at any point in time.  We are not immune to suffering.  We will all go through hard things on this earth.  We will all lose people who are close to us, watch others suffer from horrible diseases, watch friends and family go through divorce and marital stress, watch acquaintances recover from accidents or random medical findings.  But all these things are temporary--life on this earth isn't going to last forever.  Our souls won't always be bogged down with the hard things life throws our way.

Last night before falling asleep, Greg said to me, "I'm hoping you don't wake me up telling me your head hurts like you did last year."  I try to replay those moments a year ago--not all of them can I remember.  But I can't shake the feeling of fear.  Fear of the unknown, fear of not being able to care for my new baby, fear of not being able to be the mom I wanted to be, fear of dying and leaving my husband to care for three children.  

I've learned this year that doctors don't always have the answers.  Although they are super smart, they may not be able to tell you why this happened or if it will happen again.  You may never get a diagnosis that has a treatment.  The hardest lesson I've had to learn is to just go on living even though some really scary and bad things have happened to my body.  Each day we have is such a gift--don't ever forget that!

Wednesday, November 25, 2015

Dear Norah

Dear Norah,

I knew it would happen.  Your birthday falls on Thanksgiving this year.  The last year has gone so fast for me...a total blur on my life's radar.  I've been thinking about you a lot--wondering what it would be like to add a 3 year old into our crazy mix.  And even though I haven't been capable of grieving you and thinking about you each and every moment because of what happened to me after your sister was born, doesn't mean you are any less important to me.  You are where my journey begins.

There will always be a bit of sadness attached to the holidays, but I am trying to be grateful.  I'm thankful to God for sparing my life, but I will always miss you.  I will always wonder who you would become and who you would look like.  Unfortunately, I will never get those questions answered, and although I am thankful this year, there really is nothing that can take away the pain from your loss.  I pray that those who love me will understand that.  I lost you.  I had to bury you in a tiny casket.  I have to memorialize you, so that people won't forget you.  Because you are my child.

There is a Norah-shaped piece of my heart that will never get filled in.  Thank you for teaching me to trust in God's plan for me.  It has been oh so hard!  I am always trying to balance my grieving with my thankfulness.  It is a difficult road to be on.  Tomorrow I will look around our table and know that there is someone missing.

I love you with all my heart,

Thursday, November 12, 2015

Tapestry of Our Stories

My church (Rooftop Church) held an amazing Women's Event last weekend called Tapestry of Our Stories.  Several women shared what God was doing in their story, and I was privileged to share my (abbreviated) story as well.  It is not one that I would ever choose, but God has strengthened me so much over the last three years.  

My life in the last three years has taken a turn that wasn’t in my plan.  My plan was to marry a great guy, buy a house, have 3 or 4 amazingly smart, polite, and well-behaved children, and live happily ever after—all on my timeline.  And in some respects, it started to happen on my time, in my plan.  I married a great guy, moved to St. Louis.  We bought a house.  We had Maggie in 2008 and Elliott in 2010.  For the most part, they are smart, polite and mostly well behaved! 

We were ready to have another baby, and God blessed us when I found out I was pregnant in 2012.  My plan was happening!  During my first ultra sound, my doctor noticed a large cyst—about the size of a large grapefruit—in my right ovary.  Over the course of the next 3 months, we decided that I needed to have the cyst removed because of the immense pain I was in each day.  I was nearly half way through my pregnancy.  Not only did I lose my ovary, but I was rushed back in for a 2nd emergency surgery because of internal bleeding.  I lost too much blood to sustain my pregnancy and gave birth to Norah Rose on November 26, 2012.

This wasn’t my plan.  I wasn’t supposed to be sick, almost die from blood loss, and lose my baby.  The days and months following Norah’s death were the darkest days of my life.  My daughter Maggie followed me around the house with a box of tissues to wipe my tears.  And God was right there next to me too., He met me right were I was—right in the middle of my brokenness.  I can honestly say He has never felt more near to me as He did after we lost Norah. 

Losing a baby, adds a layer of sadness to everything you do, but the hope I have that I will see Norah again and the reminders of God’s faithfulness to me and my family were so apparent during the hard days.  I kept relying on His promises to me—that He would fulfill my desire to have another child.  And although the road to get pregnant again was not easy, I found out in May of 2014 that we were expecting another baby. 

I gave birth to Cecilia Rose on January 16, 2015.  I actually don’t remember much from the days following her birth, but I do remember the feeling that I was experiencing God’s promise to me.  I was holding my miracle, my rainbow baby, and she was so perfect in every way.  I was discharged from the hospital on January 19, and around 11:30 p.m., I experienced the worst  headache I have ever had in my life.  It was so acute, that I woke Greg up because I was sure that something was majorly wrong with me. 

After a few hours at home the next morning and many texts back and forth with my OB, we decided to go back to the Emergency Room.  While I was getting a CT of my head, I suffered a hemorrhagic stroke—my brain was bleeding.  I could no longer talk or feel the right side of my body.  I could think, but what I wanted to say came out as jibberish.  Panic and fear set in very quickly.  I remember watching Greg holding my four day old baby and pacing back and forth making phone calls telling our families to get in the car and drive to St. Louis.  This wasn’t in my plan.  I was supposed to be soaking in every ounce of my sweet, sweet girl.

The next thing I knew, I was being loaded up in an ambulance and was on my way to Barnes Jewish Hospital.  From this point on, I don’t remember anything.  I woke up  several days later in the ICU surrounded by my husband and my family.   Greg and my dad who is a doctor, explained to me what had happened, but I just couldn’t understand.  My brain started bleeding?  How could this happen to me?  In the days following my stroke, my brain literally could not understand what had happened to me.  The doctors would ask me questions and many times I remember looking at Greg to answer them for me because I could not make the correct words come out of my mouth. 

Although I was very lucky to regain feeling on my right side and be able to talk again, my stroke recovery has been difficult.  I have been a medical mystery to the 5 different specialties I have seen at Barnes.  No one has an explanation why my brain hemorrhaged.  I’ve been tested for every possible disease and or reason to cause this, and there are no answers for me.  I’ve struggled with my short term and immediate memory and my attention span is horrific.  I spent 4 months in out patient speech therapy, where I was asked to do simple tasks like alphabetize words and read words backwards.  I have learned how to run my family with a brain injury—how to remember soccer practices and when to feed the baby.  It is a scary, scary place to be when you look okay, but your brain isn’t functioning anywhere near where it used to.  It is difficult to be so young and to be so near death two times in the last 3 years.  I never planned to be sick.  It wasn’t in MY plan to have a stroke, to essentially miss my baby’s first months, to have what felt like a million doctor appointments, MRI’s and CT scans, to be told by 4 different doctors that I should not have any more biological children.  I had no control over any of this. 

But it was in God’s plan for me—not as punishment for something I had done wrong but because we live in a fallen world where there is sickness and death.  He has used the last 3 years to teach me to trust Him, to truly believe that His plans for me are to just be here as a mom to my kids, as a wife to my husband, as a worship leader in my church.  He met me in the middle of my brokenness 3 years ago and again in these last 10 months as I have recovered from a stroke—at age 35.

In Deuteronomy 31:6 and 8  it says Be strong and courageous. Do not fear or be afraid of them, for it is the Lord your God who goes with you. He will not leave you or forsake you. The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

I know the Lord has gone before me.  He was in the operating room 3 years ago.  He welcomed Norah into heaven. He has seen every tear that has fallen from my eyes.  He was there as we welcomed Cecilia into our family and then 4 days later when my brain began bleeding, and I believe through the prayers of so many people, He saved me in so many ways.  He continues to teach me to trust Him with my life.—to stop trying to make it all go MY way, and just follow Him even when it is hard.

Wednesday, October 28, 2015

Missing Her and Loving the One I Have

I've gotten rid of a lot of baby stuff lately.  Cecilia turned 9 months last week, and we no longer need the swing, receiving blankets or itty bitty clothes.  As I am looking through all this baby stuff I am getting rid of, I realized something very important.  I don't remember a lot of Cecilia's first months.  I barely remember her birth.  I don't remember being home with her and snuggling her in those first months of her life.  I know someone was doing those things for her, but I don't know if I actually was capable of being that person. After the loss of a baby, those are the moments you dream of, the moments you run through your mind a million times, the moments that are the what if's for the one you lost.

Some days I feel as if i have traded one horrible life situation for another.  I went from being the grieving mom to being the mom who had a stroke, and when your brain doesn't work like it used to, it is really difficult to be both.  It's been hard to grieve Norah the last 9 months.  I went from being an emotional basket case to feeling so void of any emotion at all.  I used to tear up all the time.  I used to feel so sad so deep down in my heart that I could barely get out of the house.  Ever since my stroke, I have felt no emotion.  Not sure if that stems from my brain injury or if it is just my way of dealing with my uncertain circumstances.

Nonetheless, it has been almost 3 years since we lost Norah.  Time does help with the sadness, but there are some days I look at Cecilia and wonder if Norah would be another blonde hair, blue eyed girl in our family--And I still miss her deeply. 

Thursday, September 3, 2015

Where are You?

I'm just going to say it--I've been struggling with my faith.  Maybe struggling isn't the right word--I just haven't had any.  I haven't opened my Bible or my devotionals.  I haven't hardly uttered a prayer.  I've kind of been a sucky Christian since my stroke.  Can I blame that on a brain bleed?  The only time I feel close to God is during worship at church--when I'm singing or playing.  It's like my brain goes right back to 8 months ago when everything was different.  I'm not angry with Him for allowing this to happen to me, just apathetic really.

For some reason today, I noticed my "Jesus Calling" book by Sarah Young on my night stand.  It has been there unopened for months.  The book mark was stuck in there from January 15--the day before Cecilia was born!  I opened it to today and here is what it says:

Let the dew of My Presence refresh your mind and heart.  So many, many things vie for your attention in this complex world of instant communication.  The world has changed enormously since I first gave the command to be still, and know that I am God.  However, this timeless truth is essential for the well-being of your soul.  As dew refreshes grass and flowers during the stillness of the night, so My Presence revitalizes you as you sit quietly with Me.

A refreshed, revitalized mind is able to sort out what is important and what is not.  In its natural condition, your mind easily gets stuck on trivial matters.  Like the spinning wheels of a car trapped in mud, the cogs of your brain spin impotently when you focus on a trivial thing.  As soon as you start communicating with Me about the matter, your thoughts gain traction, and you can move on to more important things.  Communicate with Me continually, and I will put My thoughts into your mind.

Interestingly enough, my biggest hurdles with my brain rehab are my attention and my immediate memory.  I was re-tested yesterday since my in-take in June, and while there was some improvement, I am still not quite up to average.  She praised me for working hard, but the deficit still falls in attention and immediate memory, and for someone who is (or at least used to be) an over achiever it is difficult to not see high marks!   Each day, I feel God nudging me a bit--"reminding" me of His power in my life.  I may not always remember it in every moment, but I know it is there.

Way, way, way in the back of my brain, I know that God is there.  I know that He has brought me through these last 3 years.  I know that He is holding Norah right now.  I know that He cherishes me even when I don't come to Him on a daily basis--that He is patiently waiting for me to "remember" Him.