Luminous, Glowing Pearls

I started rereading a book my dear friend Monica gave me, Cold Tangerines by Shauna Niequist. I read it right after Brooke's first surgery, and felt wrapped up in a warm hug from a friend.  The words in the book envelope you and you get caught up in the beautiful phrases.  Last night I could not sleep.  My heart was so very heavy.  I picked up this book praying for my eyes to become drowsy.  One of the first things she says in the book is that many of us are waiting for that big moment that defines our life.  You know the moment where all take notice, and you go on living happily ever after.  Her conclusion is that most of us do not have just one moment, but a series of them.  Basically...Life.  For many that may seem mundane.  But for many it plays out as drama, and chaos.  We lean down to pick up the shoe that dropped, when the second one comes crashing down.  Sometimes I ask God why  my life can not just be mundane, boring.  Sometimes I catch myself thinking....this is not what I signed up for.  I dreamed as a child of a home in Maine.  In a quaint little town near the water.  I dreamed of writing, and cooking elaborate meals for all my children and husband.  I dreamed of reading classics by the fireplace and putting together puzzles with the kiddos.  I dreamed of long walks with my husband, and healthy babies.  I dreamed of a home we could afford and call our own.  I thought about this often, even wrote this down in a book as a young girl.  Like writing it down would make it come true.  Sometimes I hear myself ask...why?

My same dear friend sent me this verse last night, "'For I know the plans I have for you,' declares the Lord, 'Plans to prosper you and not to harm you, plans to give you hope and a future.'" Then she wrote, "He is the same God!"  Yes He is!  He has never changed.  He wishes me no harm, He loves me!  His plans to prosper me, and my plans to prosper are not the same.  He is not concerned about the whether I made every bed in the house in the morning, if my drawers are neatly organized, if the pictures are all properly labeled in the albums, if I only provide high quality healthy food.  I am sure He finds my ocd with organization and health slightly crazed.  And I find the uncertainty in life scary and a bit unnerving.  But I trust His plan, I trust His decisions.  And this is the hope I must hold onto.  Even when the future is so uncertain and often downright scary.  

When we moved here we thought it would be a new beginning, a fresh start.  We thought this would be our time to rest, and regroup.  We were wrong.  I think we longed for this so very much, it was all we could see.  And in our severe disappointment we have all stumbled.  Even dear Chandler.  None of us has been free from feeling true disappointment, anger, sadness, betrayal, grief in the past 4 months.  We put our faith in man, and this is never good!  Right now we are scrambling to figure out the next step for our fam.  Tim and I desperately pray for a new beginning in 2012.  We know some basics...we need to figure out employment, we need to figure out health insurance, and we must act as a team.  The days, months to come will be scary.  We have done this before, but it was different.  I feel like I have climbed to far out on the branch and it is ready to snap.  (Hope and a future)

Brooke has to have a new MRI and she needs a 48 hour sleep study.  She has had many more headaches, and I am concerned about possible seizures.  She plays so beautifully at home, but even a short outing wears her out completely.  She has started having trouble with dizzy spells again, and now we have noticed her feet turning blue several times.  We know we need health insurance so she can have these tests done.  We are looking at transferring to a new neurosurgeon who is closer.  This breaks my heart because we love Dr. B.  But we have heard wonderful things about Cincinnati Children's and this would be so much closer.  I will be calling them on Tuesday to see how they can help.  (Not to harm you)

When we moved here, we splintered as a family.  Tim was working long hours, and I was trying to adjust to being away from everything familiar.  As we have had these past three weeks as just a family, blessings have followed.  The future is so very uncertain.  We are not even sure if we can afford to stay in the house we are in.  We are not even sure how to pay for groceries.  AND YET, we have watched multiple family movies (all free :) ), played family games, ate as a family, camped out in the living room, talked for hours, made cookies, and just lived.  For us, it has been the moments we needed.  As Miss Niequist describes in the book, "Life is a collection of a million, billion moments, tiny little moments and choices, like a handful of luminous, glowing pearls. And strung together, built upon one another, lined up through the days and the years, they make a life, a person.  It takes so much time, and so much work..."  Right now we will focus on these moments for 2012, and just Hope.  

Peace on Earth, Good Will to Men

I have to be honest....this Christmas has not been the shiny holiday it normally is for me.  In fact, it probably has been one of the toughest ones in a while.  And yet, it has put my mind in the right perspective, and made my heart stretch 3 sizes bigger.  For now, I want to focus on the wonderful things this fam has overcome in the the past year!!!  God has been good and blessed us in so many ways!  One important way is by sending people to lift us up!  Many may say that friendship is highly overrated and I would completely disagree!  I am moved and amazed by the people who step up and offer kindness, not expecting a thing in return!  secret santas all year round...is that not one of the true gifts Christ offered- "Love others!"

2011 started out rocky as we knew Brooke had another surgery looming.  We were still trying to recover in many ways from the one in August.  But hope remained.  When she had her MRI in March, it revealed that brooke had Basilar Impression.  Basically her head was now wobbly after removing her cerebellum from her C spine area.  She would need to wear a collar whenever she was in the car, or had a chance of being knocked to hard.  The doc also informed us we needed to proceed with spinal surgery.  So exactly one month later, Brooke had a tether cord release of her spine.  Through this surgery we found out that her dura sac (this provided cerebral spinal fluid to her brain) was not where it was supposed to be.  Thankfully the doc found much higher.  This is a good indication of why Brooke has many issues below her belly, and her severe leg pains.

Brooke recovered quickly.  We went home with new hope!  Then in May things changed again as Tim's company closed their doors.  We sadly knew we might need to move.  We also knew we had major house issues to have to move.  Again God opened many doors!  We have an amazing Realtor with the patience of Job!  We had amazing friends who moved us!!!  And that was not an easy task either!  And we moved south to a town we knew nothing about.  Far away from family, friends and home!  Thankfully we have a wonderful warm home and each other!  And very quickly we had a new church home!  I am blown away by Brookfield Church!!!!  If the only reason we moved here was to meet these people...it was worth it!!  They have quickly become family and blessed our lives!

We all had hope for 2012!  This would be our year of rest, and re-cooperation.  But there were other plans for our lives.  Right now we are spending time as a family.  I am praying desperately God shows us the path we need to be on.  And I am holding out hope in this new year.  Many things I can't write about...they are still to unsure and unknown.  But one thing I do know, is Christmas is a time to celebrate!  Not necessarily with fancy presents, shiny decorations, or elaborate food....but with family over Christ birth!  That is just what we are going to do...Rejoice and put our Hope in HIM!!!  Merry Christmas to all our wonderful friends and Family!  There are so many that I wish I could thank personally....you know who you are!  We love you and thank God for you!!!

Merry Christmas and Hope for the New Year!
Tim, Melinda, Aidan, Brooke, and Chandler, too!

Unspoken Truth

I have not written in so very long.  And to be honest, I do not even feel like writing today.  I am completely drained.  I feel like I do not have one ounce of umph left in me.  But I was so moved by my friend's post today, I wanted to share.  She speaks so much truth of where we are in our journey.  Please take time to read... a post by my friend Monica. 
This past week I have spent hours with her little bird, Danica and my bug, Brooke.  I love to sit with a cup of tea and a book, listening to the two girls chatter on and play.  It melts my heart to see their love and understanding for one another.  And yet I completely understand it.  Monica and I have only known each other for a little over a year, and yet I feel like it has been a lifetime.  Her childhood and mine parellel each other in many ways.  God has knit our history so that it would connect, and we would in turn mend each other.  I am constantly reminded by her beautiful example to praise Him through all.  She just gets its!  She gets the pain our daughters suffer, the sleepless nights, the fear of having a home to live in, the endless bill collectors, and the people on the fence waiting for us to jump over into "normal" life again. 
It is hard to explain to others how our life looks from the inside.  I have people say how great Brooke looks, how she has healed up great.  I normally just smile and agree because it is to hard to explain.  But they are not there when she has played to hard.  Last night was an example.  Sunday was a long day, she had a meltdown at a play we went to for dear Aunt Amy.  She hates crowds and the noise and bustle was too much for her.  Then she played with her friend on  Monday.  What happened...she crashed.  She fell asleep for a few hours and when she woke up, pardon my language, all hell broke loose.  She screamed in pain for hours.  She sat hunched behind a chair crying and writhing in pain.  She can't be comforted, and no medicene helps.  How can a mama look at her bug and say, "Honey you played to hard!"??? When all she played was tea party, squinkies, and polly's?  She did not run and jump, she just played. 
Yes to a certain degree she is better, her brainstem no longer is squeezed by her brain.  But she is not healed.  We can't jump that fence, and must remain on the other side.  Like Monica says it is not a season, but a lifetime.  And some days, most days...that makes me sad.  But God so beautifully planned that we would not be alone on this side, and I am constantly reminded of that! 

for the love of a friend

i have been discouraged over the past few months. sometimes it is hard to admit when we are just done.  when we need a refresher, a break.  i hit that point sometime last week.  i think the compiling of brooke's health, a job loss, a move, leaving family and friends, and a home left behind just caught up to me.  i rarely get depressed, i just always go.  it is hard for me to stop, but last week i stopped.  it has taken me a full week to even feel like i can go again.  selfish, probably.  but i needed to stop, weep, and cry out for help.  this is not an easy thing for me to admit, and yet, i find myself needing to do this.  

it is funny when we feel at a low point, God reveals Himself so clearly.  i am so thankful for that.  He sends people to just lift you up.  i received a letter from a friend i have not seen in years the other day.  it was a beautiful handwritten long letter.  just the fact that there were pages of writing to me, made me feel loved.  she shared that something i said had helped her!  i sat there realizing how precious words can be.  they can sting very badly sometimes, but they can also bring hope, love, and a fresh perspective.  i was also encouraged by another friend who just offered to drive down and visit with me.  she also is a friend i have not seen in a very long time, but holds such a special place in my heart.  i have also been overwhelmed by the wonderful people at the church we are going to.  they have warm hearts and pray for you when they do not even know the hurt.   then on friday i met a wonderful homeschool group, and i am continually impressed with the athens community.  hope grows, and the joy of being with my children is wonderful.  

one of the friendships that has helped me through many dark scary moments is my dear friend monica.  she has a beautiful little girl, danica.  danica and brooke both have chiari, and although their paths are different...they are on a journey together.  watching the 2 girls together is watching kindred spirits -connected with a special bond.  i love this family for their strength, courage, and complete and utter abandonment to God.  they inspire me each day.  monica has been in pain for many years.  she has set her pain aside to care for danica.  but God has been faithful...just when monica's body could take no more, danica's body began to slowly heal and rest.  monica can now have the surgery she so desperately needs.  i am so thankful for this, and yet understand the heavy burden this brings.  a terrible emotional burden of how can i be a mommy to my children, and a wife.  the what if's that plague a mind.  the endless scheduling of people to help with watching children and meal, and laundry.  and of course the financial burden.  we ourselves can't even catch up after 2 major surgeries, and this poor family has had more than i can count.  and yet their faith and hope remain!  

i am sharing their story in hopes that you may be able to help.  you can learn more about their journey at 

team danica.  they have a place where you can donate.  even a few dollars is helpful.  just something to consider...brooke's one surgery for the doc cost us $45,000.  this does not include the hospital stay, other docs who help, food, lodging, gas to get there and home, and all the tests leading up to surgery.  Many of these docs are out of network, and out of state.  this is the case for monica too.  being such a specific surgery you can't just go anywhere.  many times they want payments of $500 per month.  most families can't even imagine this.  so many expenses but for a surgery that has to be performed.  it is very hard to imagine saying "gosh we just do not have the money. can we do this in a few years."  because the answer is no, you just can't wait any longer.  i know many are unable to help financially, but please pray!  pray for safe travels, peace of mind, doctors, nurses, sanity, caretakers, and children left at home.

i have been sad about many things, and wanted to take a break from fb for awhile.  sometimes when our minds our down, we see the bad and forget the good.  but yesterday i was reminded of some of the good social networking provides...beautiful baby pics right after baby was born, a lovely post by missionaries in haiti, and prayers for my family as well as numerous friends.  i am grateful how God reveals Himself and calls us to hope once more!  my beautiful brooke, her danica, and her monica teach me this each day!

Why a Ladybug?

Many may have wondered why I chose a ladybug, and not a butterfly or unicorn or a lion.  Well there are a few reasons why a ladybug is a special animal to me.  First, and the easiest answer, is they are small, delicate, and quite cute (kinda like brooke).  But even though they are small, they have a mighty job...eating aphids off the plants, therefore helping a farmer/gardener.  Brooke too has had a mighty job since she was very small...managing her disease and living each day to the fullest.  For that reason, I think a ladybug fits her very well.  But of course, like all good stories there is another reason, so as my kids always say "tell us a story, tell us a story"....
As many of you know, we just moved.  Moving is not a new thing for me.  In fact as a child, we moved quite a bit.  I have to say I never liked it.  I loved feeling at home in a house, making friends, and not having to leave.  One of the houses I remember well was in Missouri.  My mom and dad remember this house in a very bad light (leaky basement).  But I remember it differently.  I remember my room was huge...most rooms are huge to 4 year olds.  It was yellow, with heavy yellow drapes.  I had a holly hobby bed spread, and the room made horrible noises at night.  So I would creep down the hall and sleep on the floor next to my brother's crib.  Somehow I felt safer being close to him.
I remember a curly head girl that I played with.  She lived on a farm, with real live horses!  I thought they had the dream house.  Her older sister had beautiful long brown braids, and a room decorated in horse ribbons and trophies.  I thought she was amazing...she was probably 8. :0) I could go on about all the amazing memories from this house, my first hamsters, the best babysitters....
Here is where I tell you why a ladybug.  I had 3 very good friends that lived in the same neighborhood.  One of the little girls had the most beautiful willow tree in her back yard.  The branches drooped way down to the ground, creating a thick curtain.  As little girls this made the perfect hiding place.  We would pull back the branches an enter our kingdom!  But the most amazing part of this magical tree, were the ladybugs!  As a little girl I remember hundreds of beautiful red and black ladybugs crawling all over the tree.  The tree just simply had to be magical!  We thought it was, and played endlessly under the shade of its branches.  I was desperately sad when I found out we were moving away.
I never did find such a wonderful place as that tree.  Today when I pass a willow tree with thick branches, I breathe a sad sigh for I wish to go back to that ladybug kingdom just once!  It was free from fear, from the tough realities of the world.  It was a refuge for a group of little girls to play to their hearts content.  This is something I want to provide for my daughter.  A place for her to escape when she is hurting.  The truth is....I can't provide this, no more than my parents could continue living in that house just because I had a really cool tree to play under.  But God can, He can offer her that  refuge I can't provide.  He can wrap my ladybug up in his arms and she can rest assured that no move will ever change that!  What a beautiful peace that brings.  With that hope, I can raise each of my children to know a greater kingdom than will ever be seen on this earth!

Thank you Wishes Can Happen and Ernie's for Building a Dream!

I wanted to post this, but have been slightly crazy with our move!  Brooke got her bike!!!  Look how cute she is!  She was super excited to sit up on it.  She has a little trouble reaching petals even with petal blocks...but she will grow!  What a beautiful gift from Wishes Can Happen and Ernie's Bike Shop!!  I am so thankful to Miss Jessica for turning Brooke into Wishes.  And then what a wonderful program, thank you Miss Carol and Wishes can Happen! Beyond that, we were so blessed to work with Ernie's!  They have a wonderful staff.  They worked with us over and over when the bike did not fit Brooke.  Aidan and Brooke thought it was pretty cool to meet Ernie himself!
For those of you who continue to pray...Brooke is doing good.  She has started first grade, and loves learning.  She tires very easily, so I school her for an hour and she rest.  She does very well when she wears her collar.  Sometimes she likes to test her limits though, and later suffers for it.  Such a hard lesson for a 5 year old to learn.  Brooke is suffering from severe leg and back pain at times.  And we are still dealing with other issues. She was taking piano lessons before we left. (A gift from her grandparents) Brooke really loves music, and it seems to soothe her.  We are still dealing with sensory issues, especially sound.  It is such a blessing for me to be home with her, as she likes to keep quiet and stick close to home.  But Brooke keeps her spunky personality and continues to make us smile, and warm our hearts!  Thank you all for continued prayers!
Tomorrow we get our insurance!  Praise God nothing major has happened in the past 3 months!  Brooke is far behind on medically testing.  So now slowly, as time and money permit, we will make appointments and travel to see neurosurgeon, urologist, and gastro docs.  Please pray that we will find a pediatric doc as wonderful as our beloved Dr Kungle.
This is but a journey, and some days we yearn for home more than others.  So thankful for the people who lift us up on this journey, and to a faithful God who sustains!

Moving Day

Many of you know that we are relocating because of the hubby's job.  I have to say the past few weeks have been a roller coaster of emotions.  So much of me wants to stay in my safe haven here locally.  But the other part of me is excited for a new, fresh start for our fam.  I know where ever we are, God has a purpose for us.  This is just a small journey, and I am thrilled to share it with my hubby and kiddos.

I am sure this post will be scattered because my mind is drifting in many directions.  We only have 2 1/2 weeks left here.  I wish I could spend every minute of that time hanging out with those I love and treasure so much.  Unfortunately my days are being consumed before my eyes.  Today I spent most of the day on the phone, one bill collector after another.  Sometimes I would find someone nice, and I actually found myself chatting away with them.  I am simply blown away by all the time and effort that goes into moving a household- transferring services,  finding a truck to move, finding people to move, packing, finding a home, dealing with the current home, and doing most of this alone since the hubby is working long hours.  My heart goes out to all those who have to move often!

Even though I am not originally from this area, it has been my home for many years.  My kids have never lived in another house!  This will be my 10th house.  My friends live here.  My family lives here.  My favorite parks are here.  On one hand I am over the moon to be a stay at home mommy!  To home school and sew everyday! Maybe even get to teach a dance class!? And then I am scared...who will have coffee with me?  Who will just listen when I need a friend?  Who will pick me up when I fall, and just need a hug?  Yes of course my hubby, and children.  Yes of course, God is my rock.  But ladies, is it not comforting to have that friend who just gets it!

There are many unknowns for us right now.  I pray for certainty, but that is not something of this world.  Right now, we pray for our house to sell, and our van to sell.  We pray that financially we can get through.  Having gone through 2 major surgeries and a job loss in the past year makes the road rocky.  But we have traveled many rocky roads.  And I need to not ignore Brooke's health anymore.  Once we have insurance, we have so many things that need done.  She needs to see the urologist for testing.  And she needs a follow up MRI.  I watch as her headaches become more frequent, and she is taking more naps in the afternoon.  I watch as she begins to choke on liquids again.  I thank God we live in the US and have wonderful medical care.  But my heart aches, because the cost is still very great.  Now we will need to find new docs who will understand Brooke's journey.  And I find myself kicking, and screaming.."But I do not want to find new docs!  I like the one we have!!"  Is canton to far to drive for a Ped?

I told you I would be all over the place tonight!  Sometimes it is good to ramble a little!  Please pray tonight for all those who suffer.  I look at Brooke, and amazed at her brave little self!  I am so thankful God gave us the chance to witness her life, and so many others!

Wishes Can Happen

This story is about a girl, a doll and a bike.....and it is a pretty amazing story!  It started last year right before Brooke's surgery.  She kept telling me she was dreaming of an american girl doll.  I basically told her to keep dreaming, but that we would see.  Well I knew that was impossible so we went on a hunt for a doll kinda like an american girl.  First stop Toys R Us, then Walmart, and at 8:45 Target.  We raced to the toy section and there was Mary Lynn, a lovely american girl look-a-like for a quarter of the price.  She even came with 2 outfits and her very own book!  Brooke was thrilled.

Brooke has loved this doll very much for a year.  A few weeks ago, she told me she wanted to give Mary Lynn to her "best bud" Danica.  Danica has Chiari like Brooke, and they have become very close.  Brooke is broken hearted that she is moving so far away from her friend.  She told me she wanted her to have Mary Lynn to remember her.  I reminded Brooke that this was her favorite doll.  And she said "I know and that is why she needs to live with Danica, because I know she will take special care of Mary Lynn."  How could I say no?  So I pulled out this much loved doll and brushed, then washed, then brushed, then attempted to style her hair.  Mom's will understand this!  And on Wednesday, Mary Lynn found a home with her new mama.

Ok I said this story was about a bike too.  Brooke has also been dreaming of riding a bike, but this is not possible for her.  I started researching adapted bikes, and found out Ernie's Bike Shop makes them.  I called and on Monday they told me they would build one for Brooke.  I asked the price, and tried to contain my surprise when they said $450.00!  Well again this was not possible.  As much as I wanted this special bike for my ladybug, we just could not swing this.  So i posted on facebook with my sadness, and if anyone ever heard of a cheaper place to find them.  I was immediately contacted by friends who offered to look into building one for her!  I was super excited, and then on Wednesday...Wishes Can Happen called.  They wanted to purchase the bike for Brooke!!!  A friend from church had turned Brooke's name into them!  So the same day Brooke let go of her treasured doll, someone gave her a beautiful gift!

But wait...it gets so much better!  On Thursday we went to see the bike!!! Ernie's did an awesome job and it is a beautiful blue bike with a large basket on back, and pink and silver hand streamers!  They had to adjust a few more things, so we left the bike there.  I was supposed to call Cindy, wonderful Wishes Can Happen lady, and tell her about it.  I called and gave her details.  She said they had already contacted Ernie's and would take care of the bike.  Cindy wanted to know if Brooke needed anything else.  I mentioned a helmet.  She told me oh of course they would get her a helmet, she meant anything else?  I just stood with the phone in my hand, what else could we possibly need?  I was so thankful for this gift!  Then she said "Is there a toy you would never be able to buy Brooke, that she really wants?"  Sooo I told her the story of the doll.  I felt guilty asking for more, but she jumped right in and said...Done!  She asked which one she wanted.  I told her she dreamed of Julie, because that was the name of her Godmother.  :)

Ok very cool, right?  Well it gets better!  On Friday, Cindy calls me to say she met with the board.  I thought she was going to say the doll was just too much.  Imagine my complete shock when she said, "We would like to send you to the American Girl store in Chicago or Washington DC!"  My response, "What?" then "Are you sure? I mean really?"  These are the things that happen on TV!  I am so excited but have not told Brooke yet!  We are waiting to pick a date, and then I will tell her.  She only knows about the bike.  I am so, so happy for her!  Her year has been so long, and she has been so brave.  Each day I watch her struggle with things, and she always keeps the positive attitude!  Her little heart is always thinking of other, and I am just so proud of her!  This is a huge blessing which I am humbled, thankful, and excited by!  Thank you to all who have been a part of this, and all those who continually pray for my bug!

One Year and Counting....

A year ago we were in New York where Brooke was recovering from brain surgery.  I am so thankful for the journey our family has been on over this past year.  This may seem like a strange comment, but we have grown so much as a family.  Last year we believed her brain surgery was all we could handle...and yet this has probably been one of the hardest years we have faced.  Brooke had many ups and downs after her surgery as did our family.  With Brooke's surgery came great debt.  My heart goes out to families who have multiple children with Chiari.  I am not even sure how you manage.  But then I guess you just keep going.

Brooke made great strides, and many looked and saw a perfectly normal girl.  But many of Brooke's symptoms stayed the same.  Our amazing Dr.B listened and encouraged us to proceed with a 2nd surgery on her spine in April. So 6 months after my baby got through brain surgery...this brave bug was back in surgery again.  And for the 2nd time she made great strides.  But we still have many battles to fight.  Brooke still has slight instability in her neck which probably lead to spinal fusion as a teen.  She still has a severe bladder and bowel issue that will lead to surgery in a few years.  And every time she says, "Mama why can't I ride a bike?" my heart drops a little.  I know this is something small, but it brings joy to a little child!

2010-2011 has been a roller coaster ride for us all.  Between the surgeries, financial crisis, job loss, and now moving, I feel like I have not rested in a very long time.  I am so very thankful for the people who have helped with benefits, and helping us to stay in our home!  I am thankful for all the prayers that have sustained us.  We know this new job for Tim is a true blessing, and we are thrilled to have it!  It was an answer to pray as now I can stay home with the kids.  So when Brooke is having an off day, we can just hang out.

I want to write more about our move and will.  Tonight I just want to be thankful that we survived this year.  We have grown as a fam...and life is continuing on.

The Missing Tooth

Wow...it has been awhile since I posted.  Life at our home has been slightly crazy.  Like any other family, the daily routines can take over and before you know it a week, and then a month have gone by.  We have had some eventful weeks and are happy to say...we survived!  :-)  The big news in Brooke's life is she lost a tooth!  Why is this such a huge milestone for both a child and a mamma?  It is just a tooth!  And yet it represents so much.  For Brooke, she has finally entered the world of big kids.  But for me...it means another one of my babies is growing up.  Of course, I want them to grow, become good, strong adults. A little part of me though, wants to hold onto them forever.

We had another milestone in our family.  The hubby lost his job when his plant closed a few months ago.  He was able to continue with the company out of state for 5 weeks.  But then, that ended as well.  As a family, this is never an easy thing to go through.  And with our past year, it made things a little more uncertain.  But we held onto faith, and sure enough God came through.  I have to say sometimes I just sit in complete awe over the way He works!  If a person is not a Christian, let me share my life, and you will see God's evidence at every turn!

Tim will be starting a new job on Monday.  I can't write in great detail yet.  I can say this opportunity is amazing.  I am so proud of the courage my hubby has had.  The way he has stayed strong, and kept our family ticking is amazing.  He just knew the right job would come.  Not saying that the next few months will be easy.  Whenever you lose a job, no matter how short the time is, you play catch up for a while.  But this is just another hurdle that we will leap over.  If you would pray that our family continues to make the choices we are being called to make.  And that we have the courage and grace to proceed forward.  We have a few tough choices impacting our family.

Another little road block has been insurance.  Yes I was complaining a few weeks ago, and now I just want it back!  We thankfully can get cobra, but will need to carry it for 2 more months.  But with Brooke, there is simply no choice.  We can't afford to have a lapse in coverage.  So thankfully this option is available to us.  And right now, the little ladybug could use some prayers.  She has been doing wonderful, but lately gets very worn out.  Her legs are giving her problems again.  We also need a follow up with her urologist in September and I am not sure if it will be possible. 

Loosing your teeth is inevitable.  So there really is no point in fighting it.  A baby tooth was made to fall out.  Sometimes the process is long, and painful.  Sometimes the tooth hangs on and has to be ripped out.  And then sometimes the tooth just falls out and there is not even a spot of blood.  Ok so bizarre me is now going to compare life with a tooth.  But really can we not all see how our lives go through phases just like a tooth?  The most important things I have learned through loosing my own baby teeth and now watching my children go through it, the teeth will fall out and tomorrow will come even of the tooth fairy does not.  You will be toothless for awhile, soft foods will seem amazing, and then one day, a new set of teeth will pop through.  You may look in the mirror and not even recognize yourself, and yet it is still you...just different.

My Best Friend

Since tomorrow is father's day, I decided to write about my hubby!  After the past year, he deserves a Daddy Award!  I knew when I met him he was pretty special, and always amazed at how he proves me right.  I do not write much about him, and should!  So here we go....
We met 13 years ago, but it took him a whole year to ask me out.  I was drop dead gorgeous and he had to work up his nerve, ok not really but sounded good!  On our first date, I had my best friend follow us because I told him, "I do not trust you and do not want to end up in a black bag on the side of the road."  I had a flare for drama.  Our next date was slightly better as we went grocery shopping.  :)  All kidding aside, he was the bad boy with the good heart I had been looking for!  I found out he was not only cool, but he had an awesome group of friends and I was hooked! And you could say the rest was history....
I never realized what a Superstar he was until this year.  I am sad to say it took Brooke's Chiari to help me understand what I have!  Watching your daughter go through what Brooke has gone through tears a parent up.  But he has been my rock and her rock through it all.  He has wiped tears, held down flailing arms and legs, and slept countless nights at a hospital bedside.  You may say ....well that is what a daddy does.  But I saw plenty of children in that hospital with no daddy in sight. 
This has not been an easy year on him for his job either, from company being bought out, to traveling for long periods, to even more job changes.  Yet through it all he has held his head up high and pushed forward! 
I am not the mushy kind.  In fact, you will rarely see us hold hands in public.  And much to my brother and sister's chagrin, we watch movies while sitting on separate couches!  And yet when I see him playing with Aidan, or letting Brooke comb his hair, or cuddling with Chan, I count my blessings!  When I see him mowing our neighbors lawn and changing her light bulbs, (she is in her 80's) I realize I got quite a catch.  So Happy Father's Day to my Best Friend!!!!

Something to Learn

I wanted to write this post to help other families.  I have tried so hard through all of Brooke's medical ordeal to do the right thing.  But today I found out somewhere somehow I messed up.  When we decided to go to Dr. B we knew he was not in our network.  But we truly felt he was the best doc for Brooke.  At that point I contacted our insurance and they agreed with us and issued a letter that stated we could see Dr. B as an in network provider.  Then when we found out that Brooke was going to have a tethered cord surgery, I called the insurance and they approved the hospital as in network.  Then that surgery was cancelled and the brain surgery was scheduled.  At this point, I called the insurance back.  They informed me I would not need a new letter because once the doc and hospital are approved as in network, we are fine.  Then before the tethered cord surgery, I called again just to be safe.  I got the same response. 

Well I found out today I was given the wrong info.  And even worse they have no record of the letters they gave me.  I became not myself on the phone, and am sad to say I yelled.  I let my emotions take over, but I was so mad!  I do have copie sof the letters and I am going to send in an appeal.  The ladies I spoke to basically said it wold not help.  I am going to try! I wish I could say this is really not that big of a deal, but we are talking around $70,000 versus maybe $7,000. 

The good news I talked with the hospital and we did qualify for financial assistance.  Which means they cut the 6 bills we have with them down.  They can also probably help with some of the doc bills.  This is a huge help and I am so thankful.  I wanted to post this so all those who are facing surgery, cover your bases.  I would suggest getting a notebook.  Write down all conversations with insurance and docs.  When they ask you your name, ask for their name too.  Write down the dates of conversations.  I keep a binder of all medical records for each child.  Even when doing all this, mistakes still get made.  You will find those shining stars who want to help you.  They actually care what you have been through.  Do not get me wrong, I am very thankful for insurance and can't even imagine not having it!  I just want people to make sure they cover their bases.

While sitting at dinner tonight, Aidan said "Mom why do people rob others?"  I explained that some do it because they need money, others to hurt others, and others have different reasons.  He said, "I think it might because they want to get rich."  Brooke answered with "But that is not what is important, God is."  Which Aidan replied with, "Yeah God wants us to store our treasure in heaven."  I smiled.  I know that I have an important job.  It is not to be rich or provide designer clothes for my kids.  It is not to fret if we eat unhealthy once in awhile.  It is not to lose my temper and become frustrated by craziness around me.  My job is to make sure my kiddos know how much they are loved and this is not our home.  That we are on journey to become closer to God and spend an eternity with him. 

Get Up!

Brooke loves this song "Get up!" by pure energy.  We listen to the cd so much, I have the whole thing memorized.  But I particularly like hearing her sing this song.  She sings it very loud and with pure conviction.  The song tells us to get up and move because we never know what blessing we might find. 

I have to say lately, I have been screaming this phrase at myself.  I get caught up in mind boggling dilemmas...Will Tim have a job next week, Will we be able to sell this house if we need to, Will we be able to afford this house, How can I make sure Amy is happy and taken care of, How can we see Amy more often, How can we take care of Tim's grandpa better, Is Tim ok since he has to travel so much now, Will my van continue to run, How do we deal with all these medical bills, Is Brooke ever going to overcome the rest of her medical issues, and so on.  We finally received the main bill from all surgeries.  Let's just say, we owe the hospital alone close to what we owe on our home.  And yet through all this junk, I hear that phrase...Get Up!  Do not sit around and feel sorry for yourself, move!  And so I do.

One thing I have discovered about myself is I like to get to the point as quickly as possible.  I like to be told the truth and then move forward.  Sometimes this stings a little, but you can never move forward if you are always looking back or just standing still.  So I like to just get to the point.  And I am very much this way with Brooke's medical stuff.  I do not like to dilly dally with just any doc.  I want to know he/she knows what they are doing and is well researched in the area we need.  I am so thankful that God has led us to the docs we have.  We are surrounded by really good doctors, who have made Brooke's future brighter.  I watch Brooke run and play, and how she attacks life.  She does not even worry about what she can't do.  She just focuses on what she can do!  Each day she gets up and makes the day better!  I am so thankful for her surgeries, her collar, and her amazing docs. She still has pain and has to overcome many obstacles but she trusts God.  What more could a momma ask for?  Brooke teaches me each day how precious life is!

Twinkle Toes

Brooke has wanted a pair of sketchers twinkle toes for awhile.  I have not given in because they are very expensive and this girl has a pile of shoes!  Of course grandma decided she needed some light up sneakers! :)  So she bought her a cheaper version of Twinkle Toes.  Seeing Brooke open the box and tear them out giving them a hug, warmed my mom's heart.  She was so excited to wear them and make them light up.  If she could, she would sleep in them. 

It makes me remember the smiles when Brooke would receive a special gift at the hospital.  One of the really fun times for her and myself is when a special package was delivered to the Ronald McDonald House from her aunts.  Brooke pulled out one thing after another from her package.  Each item brought a smile. 

Now I know that "things" are not what is important.  And Brooke knows this too.  But when you are facing scary things, a smile can make all the difference in the world.  And our family knows this very well!  Even in the saddest moments, a smile helps the hurt feel better. 

Our family also has seen many children not have the smiles they need to get them through.  They either do not have the family to be there for them, or something else keeps that smile away.  Brooke and Aidan decided they wanted to help some children to have a smile at least for a short time.  They want to send special packages to children in the hospital.  Many people donate to the hospital, and I am so thankful for this!  We just want to do our part.

Here is the plan....We will collect dollar items, special little toys, and cards/well wishes.  Once a month we will send a boy package and girl package to the hospital.  Our dear friend Miss Michelle will find a child who needs a little cheering up.  She will write their name on the package just like it was mailed right to them.  Our prayer is that these Packages of Joy will bring some smiles. 

Will you help us?  We could use donations, as well as hand made cards.  I am going to create a new page on this blog to explain Packages of Joy.  We hope we will be able to send these to hospitals and Ronald McDonald Houses all over!  Tell your friends...have them follow this blog for updates on how they can help!  I am so proud of Aidan and Brooke.  They know the power of spreading JOY, please help us to do this!  So many of you have spread JOY to our family!!!

Promised Land

There was a show on when I was growing up called Promised Land.  The family lived in an RV and traveled all over the country helping others.  I loved it and my family wanted to become them.  When we found out about Tim's job, I suggested we sell the house and buy a camper.  I mean why not?  I think Tim liked the idea for about 5 minutes.  One thing I am realizing is life is short, place your regrets aside and move on.  I am also learning that nothing is ever easy, and our longing for peace will only be fulfilled in Heaven. 

I can only say this life has revealed to me that it is not going to pull me down!  I am determined to relish every moment I can with my kids, husband, parents, and friends.  To make memories every day.  To smile at the smallest things, because they are what is important.  In a moment all can change, but in the end this is not our home!

Today was Tim's last day.  And I had to tackle 2 doc appointments with 3 kids.  So the day did not look very bright.  The good news- Tim has 5 more weeks worth of work.  So thankfully we have a job for awhile and health insurance.  Can I say how thankful I am for my husband!  He is a rock that holds this family together.  I am proud of his courage and the way he is the best dad and husband he can be.   I know this is hard for him, but he is staying strong.  And I love that about him!

We did get other good news.  Brooke's visit with the Orthopedic Surgeon went well.  He told us she does not actually have Scoliosis.  She does have a slight curve in spine, but it is nothing to worry about.  He said her hips are off and that is because her one leg is slightly longer than the other.  He told us this happens in 5% of the population.  He told us the curve is either the result of Chiari, Tethered Cord, or the legs.  He is not overly concerned, but wants to monitor her.  So we will see him in a year!  Hooray!

Before we saw the Ortho, we had been to the Gastro Doc.  It did not go so well.  He was a great doc, and was very impressed.  But after conversation, he diagnosed her with a neurogenic bowel.  So now we can add that with the neurogenic bladder.  Because I want to protect Brooke's privacy I will only speak of some things online.  I do not mind discussing this with people, just not here.  He did tell me he sees this in patients with Spina Bifida.  There are those words again!  I do believe this Spina Bifida Occult plays a bigger role than some docs may think.  He agreed with me.  He was also very surprised to hear her Dural Sac was located at the L4 vertebra.  He feels there is a correlation between all this.  What it all boils down to is Brooke will probably need another surgery to help her.  Ugh.  My poor brave girl....how do I even begin to wrap my mind around this.  It will probably not be for a few years, but still.  And then it will be a lifelong condition.  How many life long conditions can a little body handle before the smiles start to fade? 

I am so proud of my girl.  I do not want this condition or any others to make her feel defeated.  I want her to know that the strength is within her.  The will to smile through the tears is something she can do.  I pray that she gets down on those knees, and cries for help when she just does not understand why she is where she is.  And I pray that God hears her prayer and lifts her up.  I can only be a support, but I know He can be her strength.  I think many of us think that the Promised Land is somewhere we can find on Earth.  But the reality is...it is not.  This song has been playing on the radio, and my crazy friend(you know who you are) at work has been playing it nonstop! :) I heard it again today.  The same words always stick out to me...This is not our home!  Thank God!

The Pear Tree

We have this ornamental pear tree in our front yard.  Since we moved into the house, it has become one of my favorite things in our yard.  All year it has a beautiful shape with branches which reach up to create a cone shape.  And for about 2 weeks every year, lovely white flowers bloom all over the tree.  During this time, I love to walk out and smell the fragrance hanging in the air.  It makes me remember Spring has arrived, with new life all around.

Last year I heard this terrible noise out my front window.  I looked out to see the power company was cutting branches off my wonderful tree!  After they were done butchering the tree, I wanted to cry.  It was no longer perfectly shaped, and it looked horrible.  They literally cut the center right out.  Later that summer it became infested with tent caterpillars.  Every time I looked at that ridiculous tree I cringed.  If only they would have cut the whole thing down.  Then I could have planted a new smaller tree that would look perfect!

As I walked out my door the other day, there was that tree. And oh there was that smell!  I looked up at all the glorious flowers.  I did not see any hole, or tents.  All I saw was beauty.  Now there is still a large hole in the center, and the tents will be back.  But the tree did not care, it just kept growing!

God has such a funny way of showing me the importance of living through all the junk around me.  This week has not been one of the best.  On Easter, we headed to my mom and dad's for lunch after working all morning at Church.  I was ready to sit down, relax, and enjoy my fam.  During lunch, Chan fell and cut his head open.  We spent the afternoon in the ER getting 3 stitches.  Then on Monday, we found out someone had broken into our home and stolen some things.  We are not sure when it happened, and can only assume it was while we were in NY.  Also on Monday, we received word that Tim's plant was closing.  I was talking to a friend of mine and told her I was waiting for the other shoe to drop.  She said, "There is no other shoe, there can't possibly be another shoe!"

Seeing the tree made me realize, it does not matter what happens.  What is important is our family refuses to stop growing!  We may not always look pretty, but God has a plan for us.  He wants us to bloom and show his love to others.  He wants us to reach out to those who need us.  The other day at work we were talking about Luke 19:39-40
"Some of the Pharisees in the crowd said to Jesus, “Teacher, rebuke your disciples!" “I tell you,"” he replied, “if they keep quiet, the stones will cry out.”

I wanted that tree down so badly last year.  I looked at it with such disgust. Now I look at my family and realize how much God loves us in our moments of hardship, moments of "un"beauty.  It is so easy at these times to turn our eyes away, to feel abandoned, forsaken.  But if we allow ourselves to do this, we will never bloom again.  We will never have new life springing from us.

I have been so encouraged this week by friends and family!  People praying for us, and sending encouragement our way.  The truth is, we are blessed!!! Chan only needed 3 stitches, and now they are out and he is back to full speed.  The things that were stolen are things.  Plain and simple.  And Tim's company looks like they are not through with him yet.  We don't know long term what will happen, but God leads us to where we need to be.

 My sister in law shared this first video with me early in the week.  Fail us Not  It reminded me that we all walk a different, but hard journey.  The reality- He never fails us!  My wonderful babysitter and friend shared the second video. While I'm Waiting  I had not told her the tree story, and yet...she sent me this video!  While we wait, we need to praise.  How else will we hear him when he answers?  I hope you take a few minutes to be inspired my each of these!

Why Does She Wear That Thing on Her Neck?

Brooke has become accustomed to wearing her collar, in fact she likes it.  She tells me her head feels better when it is on.  She wears it all the time when we are out and about.  It helps and she does not mind.  Plus it makes me less nervous if she is bumped or falls down.  Every once in awhile you will hear a child say, "Why does she have that thing on her neck?"  And the normal response from the parent is "I don't know?"  I thought I would write this blog post to encourage parents.  Take some time with your kids to learn about disabilities.  Their are so many great books at the library that can show kids pictures of children with various disabilities.

It is so important for our children to understand that children with disabilities are no different then the rest of us.  Many of them just use different tools to help them- walkers, wheelchairs, collars.  I am so proud of Brooke and how well she handles the people watching and asking questions.  Some days she becomes annoyed and I just tell people she is tired.  I sometimes wonder how she does cope.  I mean yes, she is doing well and can do many things.  But I know it bothers her that she is restricted from so much.  Sometimes I feel bad saying no stop doing that. Brooke is a trooper though!

Now that we have settled back into normal, I am going to make the appointments with a gastro doc and the orthopedic surgeon.  I am thankful the surgery went well, but am disappointed that only one thing(out of 4) was fixed.  We knew this might be the case.  And so we trudge on. 

Praying you have a blessed and wonderful Easter!

Let's Go Fly a Kite

A little known fact about me is my favorite actor is Dick Van Dyke.  In fact if there was one living person I could meet, it would be him.  Many of you probably are thinking, Hmmm!?  But I love his old movies and tv shows.  Not only does he make the normal magical(Mary Poppins and Chitty Chitty Bang Bang), he can make regular life funny.  And most days, I need that.  It is good and wonderful to find humor and mystery in life.

Since we have been home, life has been forced back into normal.  No break, no breather.  I was so thankful to have Sunday off, and such an amazing group of friends who covered for me at work.  But later on Sunday...even with the nastiest of colds, I had to run out for groceries.  It was a beautiful, kite flying day.  And as I passed a park, there was a family flying a kite.  I watched them with jealousy in my heart.  Why did it always seem life was in crisis mode at the our home?

Sometimes I feel like I barely recover from one thing before being thrown back into another.  I drove with tears in my eyes thinking about all the "stuff" that needed done.  Of course regular everyday things.  But my mind wandered off to another situation we had thrown at us last week(I can't go into detail).  Then I thought about Amy, and how much we love her, but how hard it is for her to come to our house to stay. Then I began to think about our house and how we have to figure out what to do about the foundation and many other things happening to it.  And my mind wandered to Brooke and her new symptoms. 

I wanted more than anything to just take my family and go fly that kite.  To let all those worries go.  That night I sat at the dinner table with my husband and children.  I realized how fortunate we are to have a home, an income, and a family.  It is not easy and it is not always happy.  But sitting there with my family it is amazing!  We may not always have tea parties on the ceiling or a car that takes us to magical places, but we manage to find a smile amongst the chaos. 

Balloon Fun

This is a cute video of Brooke and Chan.  Just one week ago she was in surgery!  Amazing!

Smiles and Laughs

The past few days I feel like I have posted not so bright and sunny posts.  We have seen many miracles but had some for rough patches.  Surgery is never easy, and when it involves a child it becomes harder.  My heart goes out to all those parents and children who spend their days in hospitals and care facilities.  When we are at the hospital, I am reminded of the miracles in our lives.  I am reminded that each smile, each laugh is a treasure!  It is those moments that carry us through the pain and heart ache.

Please know we feel blessed to be surrounded by happiness and hope!  I have people tell me how strong I am, how strong Brooke is...but you are the ones that help us carry this burden!  I do not think I could do it with out a wonderful support network and my faith.  I see poor children suffering without a parent to hold their hands, moms sitting up all day and night with their child with no relief, and many people with out the hope of a loving God to see them through.  And all I can do is pray.

I am wanted to post some more pics of smiles....because they really are the best medicine!  I am thankful for all the great people at the hospital and RMH that brought a smile to Brooke and my face!  Her Anesthesiologist was amazing!!! I loved her last one and did not think he could be beat, but this guy was wonderful too!  Her nurses were caring when needed and firm when needed.  The Child Life specialist were sweet and came to the rescue so many times!!  Miss Michelle was her BFF and Brooke cried when she thought she would not see her again.  And wonderful, amazing Dr B!  He can't sing his praises enough!  Brooke loves him! That there speaks volumes.  And Tim and I are so thankful for a down to earth doc who can sit and chat with us like a friend.

Miss Michelle and Brooke!

What a blessing!  I am sitting here while Aidan, Brooke and Chan play.  What a beautiful gift to be a mom, even on the really bad days!

Proud Mama!

We are happy to say we made it out of NYC!  We came to my aunts in NJ for a few days before heading home.  Brooke will have sme time to rest before we drive home.  We met my dad, brother, sister and Aidan here.  Good to have all my kids again!  Now just need the hubby!

I have to say I can not believe my little lady!  Brooke is now off all her meds and walking like a champ.  She has some pain and soreness.  She is also having some numbness in her left leg and it keeps falling asleep on her.  But all in all doing well.

Took her to a salon today to have her hair washed.  She loved being pampered.  Then she wanted to go to Walmart to buy some special gifts for her new little friend at the hospital.  We found a cute light up story and she decorated a t-shirt for him.  Then she wanted a movie to leave at the hospital for the kids.  We took it up to the hospital and dropped off.  She told me while leaving, that her heart was sad that her friend did not have a family.  She told me she would always remember him and pray he found a good place to live.  My heart smiled at her compassion.  Brooke was able to see Miss Michelle one last time, which made her very happy.

Thank you all for prayers and encouragement!  It has helped more than I can say.  Brooke met  new little friend at the RMH yesterday.  She is having surgery tomorrow. If you could keep her in your prayers, Brooke and I would appreciate it! 

Surgery Day 4 and We are Out!

Wow, so sorry I have been terrible about updating.  This has been a hard few days. Brooke really struggled while in the hospital.  For some reason, she was super sad this time, and I think she thought she was never getting out.  It was very hard to leave her, even to go to the bathroom.  She sobbed a good part of the time and clutched to my hand.  We made some progress on Saturday, but then that night at 8PM they had the brainy idea to move her to a new room.  The children's area is very small and they needed her room for the monitors (since she was now off them).  But she had already gone to sleep and her room was decorated and it broke her little heart.  The room was very tiny...only the bed and chair fit in.  It was also darker and it scared her.  Poor girl did not know what to think.  She kept crying to go back to her old room. 

I also think she was more scared because of her room mates.  Our room mate last time was a real treat...but this time her room mates broke your heart.  She shared a room first with a teen age boy who had some kind of brain surgery and was on ventilator and other monitors.  Brooke kept asking if she was going to have those tubes.  Also she met this precious little baby in the playroom.  He was about Chan's age and was also on a ventilator.  He would perk up and smile at Brooke.  She thought he was very sweet.  She even declared she might marry him!  Once when we were walking the hallway, she noticed that the boy did not have a family with him.  The poor child was silently crying in his crib, reaching his arms towards us.  Our hearts broke!  Brooke said, "Mom I am going to pray for him right now!"  I cried back to her room.  This kept bothering her and she made a craft for him.  Then there was another little baby all alone in a crib.  I think he may have had seizures because he would shake all over.  She just did not understand where their mommy's and daddy's were.  We talked about that and we decided to keep praying for these little ones.  Such a hard life lesson for a 5 year old, especially when they are going through pain.

Saturday and Sunday were hard for her with pain.  Poor thing, just taking a step was painful.  And of course, she hates the pain meds so she was just on tylenol and valium.  The first walk was torture as she stood and screamed she could not do it.  I wanted to pick her up and tell her no problem.  But I did not.  I kept telling her she was brave, strong and she could do it.  Slowly, we made it to the playroom.  Each walk was a little less painful. 

The doc came in last night and said all looked good.  So we left the hospital and came to the RMH.  We are here until tomorrow and then headed to my aunts.  She will have more time to heal before we head home.  Thank you for all your prayers.  This has been a tough road, but God is showing us the way!  I posted a few pics of some smiles we caught of Brooke.  I am sorry if I do not respond to emails quickly.  I am having trouble getting internet service.  And I have to keep chasing Chan!

Surgery Day 3

Today I'm posting for Melinda. (Hers shoes are absolutely impossible to fill, so I have edited this post 47 times. I hope I can get this just right for her....)Today's been an especially long rough day for Brooke and Mom too.That's why Melinda asked me to update the blog for her. She knows how much we all want to know what's happening, and how at times like these we're waiting to glean any detail, but it's gotten late and Melinda's headed back to the RMH and to her boys who've missed her all day. Daddy's on night duty with his princess.

Brooke is doing as well as should be expected today. She's on track, but she's hurting none-the-less. Please continue to pray as Brooke works hard to recuperate and Melinda tries to keep up. Brooke's doctor will see her again tomorrow. Continue to keep him in your prayers as well so he can make the very best decisions for Brooke and her recovery.

Thank you for accepting a blog post from a stranger today. Melinda would have done it herself if there was a single ounce of oomph left in her tonight. You know it's true. Your prayers are coveted and appreciated. More tomorrow.  ~Julie

Surgery- Day 2

Day 2 is never a good day. Poor girl had a lot of pain. She had to slowly start the sitting up process. By 1:30 she had sat in a chair and stood for about 10 minutes. This was very painful and poor Brooke kept crying to me that she just could not do it. I kept telling her she could. At one point, she was very upset and told me she was so scared. I asked her why. She did not know why? This is such a tough road for a 5 year old. We did have some good moments- painting nails, painting pictures, watching movies, and snuggling. Brooke had a visit from Aidan. This made her very happy. She just wanted to hold his hand. He wrote her a book telling her how brave she is. She drew him a picture of the 2 of them holding hands! Love this! It was so hard to leave tonight because I knew how much she wanted me and I wanted her. But Daddy is still a good replacement!

She is going to try to walk tomorrow. Hopefully it will go well. Tired and going to spend time with the boys! Thanks for prayers.

Surgery Update

We left this morning at 5:00 and arrived at 5:30 for the 7:30 surgery. It started out rough, but then the nurses provided some “Razzle Dazzle” (as the fondly call it) and Brooke had fun blowing bubbles using a “smoke mask” (as she calls the sleeping medicine mask). I was allowed to go into the OR until she fell asleep. We named gum ball colors as she drifted off. Never gets easier walking out of the operating room and leaving your baby behind. Surgery started right around 7:30 and we were paged at noon.

Tim and I came into the OR waiting area to find Dr. B sitting on the counter and texting. Love this doc!!! He grabs a piece of paper and takes us into a private room. Tim and I glance nervously at each other. He quickly tells us she is fine. But he found some interesting things. He made an incision at the S4 and S5 vertebra. This is where the Dura Sac should be. And this is also where he should find the tether. But instead he found no CSF Flow and a bundle of nerves. He said it was very strange and he had never seen anything like it. He then made an incision at the L4 vertebra and found the Dura Sac. He was so surprised, so he called up his neurosurgeon friend. He also had never heard of anything like this. He then found the tether. It was tight and the nerves coming off were stressed. He was able to detether. He also told us that he did not want scar tissue to grow over the exposed nerves on lower spine, so he inserted gortex(sp). Apparently, scar tissue can not form over gortex. He thanked me for providing him a child that was such an unusual case. :) He also said thankfully he had a sixth sense and did not begin cutting or messing with the nerves at the end of the spine. (We like to think of that sixth sense as God!) We do know now that if and when she needs a lumbar puncture it has to be above the L4 vertebra because there is no CSF Fluid below this.

She is doing well and smiling. What a trooper! They had to draw blood and I stood and watched as 2 nurses poked her in 2 separate places and moved the needle around. Then they had to send for a plebotomist(sp). They got it on the first try. Brooke said, “I am trying to be brave and only say ouch.” Love her! She is also having poor urine output. They think it is ok but watching it. Poor thing then got sick and threw up. She looks up at me, “Mama I am sorry! I did not know it was gonna happen!” She is really trying hard to be brave. I am so proud of her!!! I am here at RMH with the boys and daddy is watching over her. I will go back in a little while. Really need this headache to go away. Had it for 2 days and it is dragging me down. Want to get back and feel my best for her. Thank you for all the prayers!!!

The Promise

Tuesday morning- woke up at 5:30. Hurry to pack last minute items, eat breakfast, and put some thing in ice chest. Load my van, and then wake the kiddos up. Get them dressed and fed, and drop Aidan off at a friends house for the day. (him and Tim are leaving Wednesday) Go to my mom's house. Unload my van into her van. Move car seats and kids. On the road by 8:30, knowing we have to make it by 8PM to Ronald McDonald House. Drive starts out rough and dreary. Rain, and Brooke not feeling well. Then Chandler decides today is not a good day for him to travel. Screaming and crying on and off until we hit Dubois. Quick stop at our usual Eat and Park for lunch. Turns into an hour and 15 minute stop, because their grill was down. We did get free coffee and cookies! Back on road where Brooke manages to fall asleep. Poor Chandler continues to cry off and on. Make it to NJ and make a stop at Walmart after realizing we left the stroller in my van. :( Get back in van with tired children and mommy's. 1 ½ left! And it is 5PM. Just praying we do not hit very much NY traffic.

As we near the city, I get the same familiar feeling in my stomach. The knot! I am not a fan of NYC. In fact, I am not a city girl at all! Please just give me the quiet country, or Canton. :) Each time I get close to NYC, my tummy gets a lump in it. I have this desire to just turn the car around and head home. Of course I never do, I take a deep breath and keep driving. Thankfully, we drive very smoothly through city and out to the Long Island Bridge. As we start to cross the bridge, I call out, “Look at the Rainbow!” There from the gray clouds straight down to the water was a very thick, vibrant rainbow. As I quickly glanced at it, I was reminded of God's Promise. I thought of the crazy day, and remembered life is crazy! But with God bearable. We have to do many things we just do not want to do, but we survive.

As we neared RMH our GPS started giving a different rout than normal. I looked around and was able to figure out where we were. I felt a peace and it felt a little like home. I recognized businesses and a few houses. We made it! And it was 7PM! Then began the chasing a 1 year old while trying to check in, feeding all dinner, unloading the car and loading the fridge and room. Of course, both kids were hyped up and a little crazy! But everyone finally settled in.

I stood last night looking at the board of people staying at RMH. Many of them from all over the US. And a family from Russia, one from the Philippians, and then I saw Haiti. Two families from Haiti staying right next door to us. I thought of how God has a way of connecting us all even when we are hundreds and thousands of miles from our homes. How thankful I am for a place like RMH. A safe home away from home.

A picture in our room shows a little girl sitting in a window seat looking out the window. She is expecting something or someone. She waiting on the unexpected. Waiting on a promise. We are too are looking out the window. We are not sure what to expect or who. We are praying the pretesting goes well. We have role played and talked about the “Smoke Mask”. She keeps saying “I am going to be brave.” I keep telling her she already is!

Wednesday- I am adding today on here because I did not get this posted earlier.  We went to pretesting.  Of course I talked until I was blue in the face about what would happen at the pretesting.  Well of course, even with Miss Michelle there and her favorite Princess Look and Find...I had to hold her down for the blood test and blood pressure.  The nurse after said, "Can we still be friends?"  And Brooke told her "Oh yes."  She never is mean, she is just scared.  Poor thing!  We are resting at RMH and going to make crafts to decorate her room.  

Surgery is at 7:30 AM  and is around a 4 hour surgery.  I am not sure how quick I can post, but will do my best.  We found out she has to lay completely flat on her back for a full 24 hours after surgery!  Should be fun!  We are making butterflies and pictures to hang from the ceiling.  So thankful for all the prayers and support!

On Our Way....

Ok so we leave in the morning.  I am so tired, and I am going to keep this short!  Packed, kids bathed and tucked in bed.  Catchin up on some celebrity apprentice with the hubs.  Thank you all so much for prayers!!!  Will keep this blog updated and post new info soon! 

Charming

Today was one of those days I wanted to find a rock and hide under it.  With Brooke ya never know what you are gonna get.  A happy child playing quietly, a girl bouncing off the walls with energy, or the one that showed up today.  It started out as soon as she woke up.  I tried to give her a hug and say good morning, her response, "Ouch quit squeezing me so hard!"  She went off and played quietly for a little while, but then came back with tears, "Mama I do not feel good."  I set her up on the couch and helped her to get cozy.  Today was a movie watching day. 

We had a wonderful family come over to bring us freezer meals for when we come home.  As soon as they walked in the door, they were greeted by the charming child on the couch. "What are they doing here?"  Ugh!  I can't make excuses, because if you see Brooke on a good day, she is charming and sweet.  Get her on a bad day, well...she is not.  While the family was here, I tried to keep Brooke from saying anything I would regret or she would regret.  Unfortunately, she kept talking.  When the family left, I tried to explain to Brooke how rude she was.  She just covered her ears and buried her head. 

After resting, she managed to feel better in the afternoon and evening.  But I could tell by her eyes that she still did not feel very well.  Plus her attitude was still quite apparent.  Many parents reading this might have all sorts of wonderful discipline techniques to share with me.  But one thing I can say is this only happens when the girl is in pain.  No she is not perfect other times, but at these times a warning from me is plenty.  I rarely ever have to actually punish her, because she does not like to be in trouble.  The difference is, when she hurts, she does not care if you are angry with her.  She just wants it to be quiet and everyone to leave her alone.  She will tolerate me sitting next to her, but if I talk to much, or even breath to loudly, she covers her ears and cries.  How do you discipline a child when they are hurting that much?  I do my best to wait until I can reason with her and then give the life lesson. 

Unfortunately, it appears sometimes as if I have no control over my daughter.  The truth in the matter is I have no control over her pain.  And neither does she.  She is five and she hurts.  She can't figure out why, and I am sure on some level it is annoying her.  She wants to be playing and laughing but she can't.  At times like these, I want to bury my head.  I have found though I need to be strong and let her work through her pain, however ugly it may look. 

When the Answer is YES!

Remember as a child having a really important question to ask your parents and just hoping the answer would be yes?  I would get so nervous to ask, think about all the possible scenarios in my mind.  What if they tell me no?  What if they say maybe another time? What if, What if...... so many possibilities.  But as a child we do not think of all the answers as possibilities.  Many times their answer would leave me in a puddle of tears, crying on my bed, sobbing life is not fair!

As we have been preparing to leave for NY, my mind once again, as it did last July, is running various scenarios in my head.  Being this is Brooke's second surgery, I feel we have a better understanding of the procedures.  But there is still so much uncertainity.  I find myself saying to God, "what if this, what if that?"  Not really knowing the answer.  But holding onto Faith knowing the answer is God's decision, no one else's. 

As a family, we have asked many questions over these past few days.  Trying to figure out how to get to NY, how to stay as best we can close to each other while there, and how all my kids can be near to me, as well as Tim.  My mom, who is an angel here on earth, will be traveling with us again to watch over Aidan and Chandler.  Tim will be there for the surgery and a few days after.  Since we all can't stay in the RMH, we needed a hotel.  Without me even asking the question, an unnamed angel paid for a hotel for Tim and Aidan!  Yes!  Then we are taking my mom's van and Tim needed something to drive because his truck needs brakes.  A wonderful family gave us money to pay for a rental car, and gas to get there! Yes!  What to do with our dog?  I was so nervous to leave him again since he was hurt last time.  A family (quite possibly as crazy as my own :)) offered to keep him while we were gone! Yes!  Since I posted about the PT and OT issues, I have had some wonderful people offer to help me learn techniques to help Brooke! Yes!  An awesome friend is dropping off a freezer meal to me, so we have a dinner when we get home! Yes!  Yesterday, Brooke received a package from another Chiari family.  It lifted her spirits! Yes!  Several friends are helping to watch the kids on various days as we prepare to leave. Yes!

The other day when I told Tim about one of these blessings, he said "We have seen so many miracles lately!"  And this is so true.  Please know my heart, we are so thankful for all of your gifts, support, and more importantly prayers!  We are humbled at how God has said Yes in so many ways.  Many of the questions we never even asked out loud!  I also know what a sacrifice many of these gifts were, and thank you for that sacrifice!  As we prepare to leave, my heart is not burdened.  I feel able to cope and deal with what is ahead.  I feel like I can be there for Brooke.  And I know those questions we still need answers to will be answered.

Another answered prayer, Brooke has such a peace about this surgery.  She understands this surgery might help with many things.  She is ready to go and get started.  Brooke can't wait to stay at the Ronald Mcdonald House and play dress up.  She is looking forward to seeing her child life specialist, Michelle.  Brooke already picked out a list of movies to watch at the hospital, and her craft bag is full of things to keep us busy.  She keeps telling me how excited she is to see Dr. B and hear his funny jokes.  I am so proud of this brave girl! 

There is no true answer yet if this surgery will fix what it needs to.  Even if it does, Brooke will still deal with headaches and dizziness from the instability in her neck.  Thankfully she does not mind her princess collar!  One thing I was taught from my parents is the answer is not always yes, in fact many times it is a variation of no, or wait and see.  It is not a lack of Faith when I say I do not know how this will turn out, but submission to God that he has chosen the best answer.  I do not fall into a puddle of tears and scream out that life is not fair.  I need to show Brooke the possibilities in all possible answers.  Remember getting the no answer, or the maybe another time?  Did it ever turn out that your parents were just protecting you?  No matter what, my family is being protected, and so the answer really is "yes".