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!