Monday, March 3, 2014

Women's Retreat... My story then... and now :)

Since I was in high school there are two words that have guided my life...
Yes, Lord...
Yes, Lord to anything you ask of me... anytime... anywhere

I've been pondering on those words since Millie started having seizures shortly after birth.  Just in case you think I'm extremely Godly and strong... I am not.  I remember leaving the NICU in Duluth as I headed back to my room in the birthing unit before I was to be discharged and crying... "NO... No... no... Lord not this one too." This is not what I meant when I said...
I will take the good and the difficult, but this is the impossible.  I have not the strength to do this.  This is too much to ask of me.  I wish my family and friends hadn't witnessed those moments of pure desperation, yet when I say I am human and struggled hugely they can back me up.

Just over a year ago at this time I was working with a group of gals at church planning our women's retreat.  About a month before the event, Andy lost his job... we found out we were expecting; and a couple days before I started to vomit... daily... at all times.  We went to a smaller church at the time and I was emceeing and one of the speakers at the event.  I didn't want to announce at the event that I was expecting as we had lost our last baby and I just didn't have the strength to tell everyone yet.  I did make it through those two days without having to run out, but the emotional side came through when I spoke :)

I was thinking about what I shared that day as the retreat time comes again.  I'm missing it this year as I'm now across the country in a new place.  It's amazing what one year can bring.  I spoke on perseverance, as my co-planner and friend reminded me.   The part that haunts me is when I say I'm not a superhero, I didn't sign up for this... Abby.  This is the life God has chosen.  I thought I had a pretty good handle on perseverance...

Since I cried through most of it, I had been asked if I could post my outline, and of course, I forgot; but I remembered today as I read through it and thought of it in light of the past few months.   I decided to preach it to myself and thought I'd share it here as well.  I know being newly pregnant and having miscarried the last one made me extra emotional, but speaking about my Abby and my real struggles was what really hit me then and again today.   I've done this for thirteen years, but I had never shared it like this.  I hadn't been prepared to be so overcome by my own story.  I was a teacher and have spoken to small crowds before, so I wasn't super nervous, yet I trembled as these words left my mouth then... and again today as they tell a different story.

Rock Hill Women’s Retreat 2013: Living Like You Belong To God

April 12-13, 2013
Perseverance: When life doesn’t go as you’d expected
1.       Introduction:

I’ve prayed about these moments of sharing since Abby’s prenatal diagnosis over 12 years ago.  I’ve fought with the Lord about my strengths and weaknesses until He boiled it down to what He asks of me… “Yes, Lord… to anything you ask of me… anytime anywhere”  that’s my end of our bargain.  He calls… I answer.  I give up my will to serve His and He’s never let me down.  He is continually teaching me that the Bible is living and real.  It’s a book that relates to my life right now.  2 Cor 12:10 says that “I rejoice in my weaknesses for when I am weak then He is strong.”  I have shared on many things over the years, but realized recently I’ve never shared this story. I stand here today with a story to tell of a life I didn’t choose.  He chose it for me.  There are countless moments where I’ve stood in a pool of my own tears asking the Lord which way to go and every time He says, “Be still and know that I am God.”  Truth is: I’m an ordinary girl, called to an extraordinary life… If He can use me, He can use you too.  One of my greatest goals in this life is to persevere well and allow struggles to stretch my soul into more… not less.

James 1:12

English Standard Version (ESV)
12 Blessed is the man who perseveres under trial, for when he has stood the test he will receive the crown of life,which God has promised to those who love him.

2.  Abby’s story…
(insert pic of abby)
·         We lived in SC when Abby was diagnosed with a rare chromosome anomaly, chromosome 18q- w/ a mosaic, when I was 20 wks gestation.  She was to be our firstborn, our first pregnancy.  I remember that ride home from the doctor’s office like it was yesterday.  We rode in silence.  We didn’t even know how to pray.  We wanted him to heal her, but didn’t know if we should pray against what was taking place.  I didn’t want to be that “special person God gave a special child to.”  I wanted a normal life.  I had seen those families or people with special needs from time to time and I didn’t want to be the person everyone stared at all the time…
·         I sat trying to do my devotions that night and shook my head and asked the Lord for help.  I don’t advocate for just opening your bible for all your answers but sometimes it happens like this… I opened up to Luke where he talks about the leper who comes to Jesus and says, “Lord, if you are willing, heal me.”  That became our prayer.  Lord we acknowledge you are able to heal this baby and that is what we are asking, but we are willing accept whatever you give us as good, no matter the outcome. 
·         The doctors watched the pregnancy closely and each appt confirmed new problems… she wasn’t growing well. Her head was much smaller than her body. My amniotic fluid was dangerously low… at our 38 wk ultrasound, the tech was silent through the procedure.  The gals usually chatted about what they were seeing, but this one was stone silent until she quickly went for the doctor.  The doc politely said we needed to head straight to the hospital because the baby was no longer doing better inside me, but needed to come out.  She was breech and they decided a c-section needed to take place asap.  We were rushed to the hospital for a semi-emergency birth.  Our pastor came in to see me while we waited.  I was doing well until the neonatologist came in with his doomsday report… “doesn’t look good. Small head. Hasn’t grown in the past month… looking at 4lbs.  We’ll probably take her out and wisk her away.”  I held it together until my best friend came through the doors, and then tears were uncontrollable.  The delivery room was bustling with the whole neonatal team… 13 in all.  I don’t remember them all, but the nurse anesthetist will always stick out in my mind.  He was by my head giving me play by play and comfort… until Andy came in.  The doc opened me up and as I watched everyone’s eyes get bigger, but no one was telling me what they saw.  Andy broke the silence (as he’s known to do) and said, “She’s not that small is she?”  Then she cried and that nurse beside me leaned in and whispered, “I don’t know who you’ve been praying to, but she’s perfect.”  Her apgars were both 9.  Everyone was ecstatic… except for the neonatologist who was upset we wasted his time.  He even asked Andy who told us something was going to be wrong with our baby?  Abby spent some time in the NICU for observation and testing, but she was a giant in there at 7lbs 2oz!  She was a miracle.  The geneticist who recommended abortion even wanted to take pictures because they couldn’t believe it.  Most kids with chromosome anomalies have distinct deformities, but Abby had none. We went home hopeful that they were wrong or that her mosaicism was so minor that it wouldn’t affect her…
·         She struggled with nursing early on but I was stubborn and determined so she eventually did even though it took a lot longer than normal, but other than that she was a perfect angel.  She let anyone hold her and ate and slept on a perfect schedule.  At 10 mo she still wasn’t holding her head up very well and all hell broke loose.  We were referred to every specialist available and hours of therapy three times a week.  She had pretty severe hypotomia (low muscle tone) and made little progress even with constant therapy.  I turned into therapy mom and did all the stuff they were working on every moment of the day.  The next 4/5 years were a blur of doctoring even while we celebrated the birth of our second child who we soon thought was a prodigy!  “I handed Belle a cup and she turned it up and drank from it!”  A skill Abby still hadn’t the strength to master.  We were overwhelmed and needed support and begrudgedly moved our family from the place we loved to the frozen tundra in Duluth.  Those were hard times for our marriage as we fought with the gap between being somewhere neither of us wanted to be and hating that we needed to be here.  Duluth was our Africa… the last place on earth we wanted to be.  We loved SC!  I had taught at a big Christian school and thought eventually we’d raise our family there too.
·         Somewhere around six realities began to set in.  Abby wasn’t a happy-go-lucky child anymore.  We raced from therapy to specialist with appts often several times a week.  No one had any answers and I began to despair.  We had to decide how much of our lives we were going to be spending at a medical facility?  Her progress was no where near catching up and we desperately needed some normalcy.  We couldn’t keep up that pace.  Andy had been travelling often for weeks on end with his work and I was a zombie moving like a medical taxi service.  We had to accept this life we had and live it rather than get dragged around in it, but needed to make some changes.  Andy quit his job knowing it would take an act of God to find another, but we needed him home.  God moved and he was employed in record time.
·         How often we ask the Lord for a glimpse at tomorrow, but I can say I’m grateful He only gives me today because His grace is sufficient for today.  If you would’ve told me that my baby would be 12 and not talking and needing constant one-on-one care, I would’ve come undone.  If you had told me our life goals for her would include potty training, living in our world, showing us where she hurts, or communicating with a device?  If I had known she may never progress beyond 3 years of age… that would’ve been tough; yet today with all that knowledge given to me in baby steps… I am thankful for “Happy Abby”.  I thought we may live with violent Abby at one time, so a pleasant sister thrills me to pieces!  (Next slide) I see her learning to lift a spoon and I’m a faucet!

3.         This too shall pass…
My dad tried to comfort me during a particularly difficult season with this thought.  He was right that Each hurdle did pass, but there was always something else to take it’s place.  “I didn’t sign up for this.”  I was a babysitter… a teacher… I professional with children, but there was no manual for this and somewhere along the way the fight slipped from my being.  My heart broke so many times that I needed to toughen up, but all I really wanted to do was sit and cry.  So I did, but I soon learned that it was ok to cry… as long as I stopped.    I had to make decisions with my head and not my heart sometimes.  I had to follow through with what was best for Abby even when it was tough.  Therapy was often torturous for her and exhausting afterward.  I had endured years of it, but there came a time when we had to decide if she would grow up in those therapy rooms or if she was going to play in the park with her sisters. 
We stopped outside therapy; although I kept it up via pca’s at home.  We found our rhythm at home and began to do family life at a pace we could sustain.  Belle was getting older and we had a taste of normalcy with her.  I slowly relinquished my role as primary constant caregiver and learned to train in help for her.  I would often go in the other room and cry because it was hard to ask someone else to do what I thought I should do.  I had to remember I had a husband and another child who needed me.  I had to see that she would always need help and allow it to happen sooner than later because later would be that much more difficult for her.  She hated new people back then and would scream and cry when anyone new would come, but because the pain was more than I could bear I could humanly bear… I can truly say…
“His Grace is sufficient for me.” There is no other way I could’ve made it through those days, but little did I know that those wouldn’t be the toughest times for us.  I remember finishing each year saying “that was a tough one.” And soon realizing this “tough stuff” was our new normal.  I could spend my life fighting against what God was doing trying to get back to what I thought our lives should be like or I could hop on for the ride and find joy in wherever He took us.  I learned to stop and smell the roses…Literally.  We went for walks and met our neighbors.  We sled in the winter and played in the park in the summer. We attended any family event we were invited to.  We stopped waiting until things were perfect to make an appearance. 
No sooner did we find a peaceful rhythm and enjoy a time of peace and restoration, than we decided to take on foster care because I had so much empty time.  We saw our biggest limitation as having to stay close to home and adding another one or two to that seemed do-able, right? 
Eight months after MaryAlice was born we opened or home to a sibling pair.  Sheeda, as we called her, was four months old and Ray-ray was 14mo.  We have always felt like it was something we needed to do and we finally had the time and energy to put into it… we thought.  The girl was sickly and the docs threw around terms like “CP” and “Failure to thrive”.  She was a handful with the constant throwing up screaming.  Ray-ray was a breath of fresh air and our girls loved him… even Abby.  I wasn’t new to “messed up” and quickly got Sheeda into therapy and the help she needed.  Our doctor just shook his head and said, “God sure knew what he was doing when he put her in your home.” Our short term visitors ended up staying for a year!  We grew to love them both.  To everyone’s amazement Sheeda left our house walking and talking and Ray, well, we would’ve kept him, but that wasn’t in the cards. 
 By the last couple months of their stay with us, Abby turned into an angry animal.
4.       The next season is a time I’d like to forget… we’ll call it Crabby Abby
·         This period of time ushered in a new Abby we had never seen before.  There were always ways to calm her, but not anymore.  We had behavior specialists and teams of experts looking at her along with a season of meds to try.  We weaned on and off meds all the time until the symptoms were often worst than the problems.  We shortened pca hours to 4 or 5 because no one could handle to be with her longer than that.  We tried behavior strategies, but she just got worse and worse.  We got where we could barely take her in public in fear of her attacking perfect strangers.  I remember our trip to GA that year.  We stopped south of the twin cities, about 3 hours into our 24 hr trip, Andy & Danielle went to order and I took the girls to a table.  That’s not what Abby had in mind and she started to attack me.  I wrangled her onto my lap so I could contain her from behind, but as soon as she got a hand free she reached back (she’s double jointed in many places) grabbed a handful of my hair and had her teeth about to chomp my cheek when Andy and Danielle came to my rescue.  I was in tears and it took both of them to get her out of the restaurant.  That trip was marked with rolling her up like a burrito to contain her often and scared faces of relatives.  I remember Papa asking andy what we would do when she got bigger.  Andy said, “I don’t know what we’re going to do with her tomorrow… I can’t plan for when she’s bigger.”  We were beat up and dejected that summer.  
·         That’s when we made the tough decision to try to keep her smaller and manageable and avoid hormonal spikes, so we underwent a hysterectomy and growth attenuation.  It was a road we walked alone as it was a controversial procedure.  Some advocates saw it as violating her reproductive rights, but thankfully we had a team of doctors who saw otherwise and supported us every step of the way.  The most difficult time was in the hospital with so many nurses who didn’t understand… and neither did we totally
·         Like most things in life we deal with it in laughter.  Andy puts me on the floor laughing sometimes.  If you’ve been around us much you know what I’m talking about.  Like the time Abby was freaking out at a family event and my sweet aunt asked if abby needed anything.  Without skipping a beat Andy said, “She needs Jesus.”  My poor aunt didn’t know how to respond.  I couldn’t help bc I was laughing too hard!  Praise the Lord for his quick wit!  One more story of my cute boy… Abby likes to finger paint… with her poo!  We’ve since found large onesies from the UK, but this particular day we either didn’t put one on or I’m not sure, but I came into the room and it was everywhere!  In her hair, on her face, the walls, window, bedding… I called for Andy because this was not a one man job.  I said, “What do you think we should do?” And he said, “Call 911!”  Praise the Lord each dramatic event is often accompanied by laughter thanks to Andy! 
·         Sometimes the Lord grants us laughter to get through the days and at other times he gives us insight and wisdom beyond our circumstances.  I’m so blessed when He allows me to see a bigger picture than the peep hole I’m looking through at the moment.  This was one of those moments… I wrote this during this period of angry abby.  We had taken her to the Hatfield’s pool as we’ve been blessed by friends who keep reminding us that anything they have is ours to have or at the very least to share.  Their pool was a source or calm during some of these days so we had taken her there for some peace.  We weren’t granted that this day, but instead some insight…
·            “what do I know of holy”  (blog post I wrote during this time)
I stood in the pool at a friend's home this week holding Abby in my arms as she repeatedly pulled my hair & hit my face whenever her hands were free from my protective grip.  I wondered why she kept wanting to hurt me?  I wished with all my being for her to feel how much I loved her... to sense my love & stop hurting me.  I wanted to speak her language.  I wanted to know what she wanted.  I wanted to heal her pain.  I wanted to heal her frustrations, but I couldn't... I can't... I may never be able to.
I wonder if that's what the Lord thinks of me.  Does He see me like a severely disabled child at times?  Does He say, "Why does she keep hurting me?  Can't she see how much I love her?  Why can't she be content in Me?"  He knows His ways are higher than mine, but I keep trying to figure Him out without His help.  I try to communicate with Him, but all too often He asks me to be still... silent... listen & yet I continue to ramble on in my own words.  Just as Abby hits, pinches & pulls to communicate I plead in futility for her to just be silent & hear the beating of my heart. 
  • I'd give anything in this life to give her peace... Just as my Heavenly Father wants to give me that
  • I'm calling her to me because I just want to cuddle her, but she doesn't hear me or she can't... I’m often in His arms when I'm calling out to Him to see where He is
  • Instead of lying still I have to often hold her down to help her... He often allows trials (painful ones) to hold me down so He can help me
  • She must be locked in or gated off to keep from hurting herself... He lays down boundaries to keep me from being hurt
  • Any form of discipline takes months if it works at all... how often do I keep doing the same things over & over just to suffer the same consequences
  • She hurts anyone around her to get my attention... I hurt those around me when I strive for the wrong attention
  • She speaks a different language... I try to understand God in human terms
  • I've presented our world to her in pictures, gestures, & music, yet she responds not... He reveals Himself in words, people, situations, creation etc. yet some still stumble around in the darkness
  • She needs crazy sensory inputs daily so we swing, spin, brush, squeeze, rub, push/pull to name a few... look at the beauty of the world around us, yet we still need more proof of Him
  • I lie next to her in bed as she sleeps just to be near her without being hurt... Whether I hurt Him or not, He's still there beside me
  • She needs consistency & routines to organize her life... we spin our wheels organizing when He just wants to lead us through the chaos rather than straightening it up to walk through alone
  • She can't tell me where the pain is... I try to heal my own pains, so I don't tell Him either
  • She lives in a different world than we do & I so long to be a part of hers... He wants us to live in His world with His help, but we choose to walk in ours alone
  • Can't she feel how much I love her & would give my very life for her... He already gave His life for me
What Do I Know Of Holy by Addison Road  (click this link from youtube & take a moment to be still & listen...)
5.       I live in a glass house
·         You stare… everyone does.  I tried to keep my pains to myself for several years because I could barely handle my reality, how could I ask someone else to?  I desperately wanted friends, yet I had little time or energy for them.  I also live a lot of my life on steroids.  A shot of adrenalin to make it through this day and maybe the next.  My calm is often lack of a crisis.  I wanted grace, yet wouldn’t allow anyone to live life close enough to grant it.  I felt the nudge to let more people in.  My closest friends were the PCAs because at first they understood our lives, but soon realized they were not only there to help Abby but also us.  They are an extended family and often closer than blood relatives.  They live in the trenches with us… by choice. 
·         We could allow people to wonder from the outside or let them in… I began in humility to blog.  It is there where I chart my days… the good, the bad and the ugly.  I give a birds- eye view into my world.  I figure if you can see God sustaining my life, than maybe you can see Him in yours too.  I wanted grace, but no one knew what my life was like.  How could I expect them to understand unless I opened up and told them?  Even my parents would often chide me about not telling them about something.  I got pretty good at spreading my crud around.  I was careful not to unload on the same person too often, so no one really got the whole story… just as much as I thought they could take.  The blog was all of it.  If they wanted to know more details, they could.  I couldn’t call everyone every rough day and tell the story over and over or likewise a good day.  My blog allows me to live life a bit more open for those who want to walk through life with me and understand us, but for those who can’t take it or don’t care to know, they don’t have to… it’s not required reading J

6.       How can my life impact yours?  I don’t want you to pity my life or come away from here thinking I’m a saint.  I didn’t choose this.  I’m not Alana or one of those families that takes in 10 special needs kids… NO! I grew this one inside of me.  God gave her to us to change us… and you.  Most don’t look at her and see perfection, but she is.  She’s exactly who He created her to be.  There is no mistake.  Her perfection is in how her life changes ours.  We’re not the same people we would’ve been without her… and I’m thankful for that.  You can’t spend time with her and not be impacted.  She ministers to people in ways I never could.  She fulfills what Christ asks of us just by existing… she glorifies Him continually.  And as a parent there are two things we wish for our children:  to know God and to glorify Him.  Abby will never reach the age of accountability.  I will see her w/o limitations some day in Heaven.  We will walk the streets of gold together and have the mother/daughter talks that I longed for here on earth.  The most important things in this life, I already have for my daughter.  Don’t pity me.  I’m blessed.
7.      So, there are difficult days.  How do we live in such a continually roller coaster and keep our faith?  Do you know that Jesus prayed that his disciples wouldn’t lose faith, which can only mean that is possible?  YIKES!  I hate that, but if I see it as reality I have something to fight against.

·         Matt 18:7  “.. situations that cause people to lose their faith will arise” 
Jesus prayed that the disciples wouldn’t lose their faith
The centurion called out to Jesus, “I believe… help my unbelief”
John the Baptist, the greatest man that has ever lived, sent his disciples to ask if Jesus was who he said he was.  The walls of the prison where blinding him from the truth. 
·         What blinds you from the truth?  I combat the lies in my head every day.  I often get caught up listening to myself more than preaching to myself.  What are those lies?
1.       Nobody cares
2.      You can’t do this anymore… stay in bed
3.      He gave you more than you can handle… this is not what you signed up for
4.      This isn’t that big of a deal, I can pull this off w/o Him
·         How do I combat these?  Scripture!  I don’t know where you are today.  You may be on a mountain top praising the Lord or you may be in the valley of desperation on the verge of walking away from it all.  No matter where you are today, you could be in a different place tomorrow.  Dr. Falwell always said, “You’re always on your way into troubles, in the midst of trouble or coming out of the trouble… so you might as well learn to live in the trouble!”  That is the reality of this life.  I would like to say that I’ve mastered this and apply scripture, seek wise counsel, and fall to my knees beautifully now; but I don’t.  I still have to go back to these three things.  The lies can be in my head or they can come from the people around me… Christian and non Christian alike. 
·         You’re life may not be mine, but regardless of what it takes to bring you to your knees, face down in a pool of your own tears… with empty arms… nothing to give… desperate for a BIG God to show up… it is there that we meet… It doesn’t matter the circumstances of what it takes to get you there… 
·         It seems like just as I conquer one battle another takes it’s place.  I live in the midst of chaos and confusion.  I battle my own demons as well as my daughters.  I’m not new to pain and heartache, yet one truth remains I still desire to glorify my God with this life I’ve been given. 
·         (scripture slide)

8.       … So here I am… One simple girl in the middle of one large mess of a world.  Alone I am nothing, but with Him I can do anything!  How will you keep from losing your faith or rendering yourself useless when the storms rage?  Will you wait them out?  What if they last a lifetime?  How will you move forward with this one life you’ve been given?  I don’t want to stand before my huge God one day and wipe my forehead and just say, “I made it.”  I want to stand before my all powerful God, worn out & all used up.  I want to have something to offer my savior. 

What are the lies you are listening to?  What should you be doing for Him that you’re excusing yourself out of instead of trusting him through?  What kind of advice are you giving as a friend… Godly or worldly?  Are you addressing the lies of Satan or using human reason to unsuccessfully navigate this life?  Spend some time in your groups before we move to testimonies and worship.  What are your biggest struggles?  What are the lies you are believing?

I’m going to close with a few short videos of some of Abby’s latest milestones… enjoy J
Here's the link to the music and video I was trying to show as well... I had the music playing with three short videos, but my technical skills were evident as it wouldn't play that day :(

Women’s Retreat 2013: Living Like you Belong to God

Scripture truths to combat the lies…
Lies…                                                                                                    Truths…
He is not here

Ps 46:2-3  “He is my ever present help in time of need
This is more than I can handle

2 Cor. 12:9  “His Grace is sufficient for me”
Is there any purpose in this?
Phil 1:6  “He who began a good work in me will be faithful to complete it.”
I need a break
Ps 46:1 “He is my refuge and my strength”
Lord, where are you?
Jer 29:13 “When you seek me you will find me, when you seek me with all your heart.”
I’m worn out and cannot do this
Ps 121:1 “I look to the hills for where my strength comes from
I’m worrying about the future
Matt 6:25  “Do not worry about tomorrow”
I’m exhausted
Matt 11:29 “Come to me all who are weary and I will give you rest.”
The monotony of this life is wearing me out
Lam 3:23 “His mercies are new every morning”
I look awful
Pr 31:30 “charm is deceitful and beauty if vain, but a woman who fears the Lord shall be praised.”
Christians should behave better than that
The religious people crucified Jesus
I don’t need other people
I Cor 12 God created us as one body with many parts
The body of Christ is just a bunch of hypocrites
Rom 7:24 Oh, what a miserable person I am! Who will free me from this life that is dominated by sin and death?
They don’t deserve my forgiveness
 Rom 5:8 I didn’t deserve Christ’s forgiveness
I’m sick and my body is weak
2 Cor 4:16 “Though outwardly we are wasting away inwardly we are being renewed daily.”
I cannot confront her, I’d rather avoid her
Eph 4:15 “Speak the truth in love.”
I have suffered too much
Rom 5:3-5 “We rejoice in our sufferings b/c it produces endurance. Endurance produces character and character hope.”
He must have made a mistake with me
Ps 139:13 “I knit you together while you were in your mother’s womb…”
God cannot forgive this; you don’t know what I’ve done
Luke 7:47 “He who is forgiven much, loves much.”
How can I truly know I am saved
Rom 10:9 “If you confess with your mouth that Jesus is Lord & believe in your heart that Christ died for your sins and was raised from the dead, you will be saved.”
Why am I so bent on sinning?
Rom 5:15 “For I do not understand my own actions. For I do not do what I want, but I do the very thing I hate.”
If only I had ______, then I would be happy
Phil 4:12 “… for I have learned to be content in every circumstance…”

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