Joy....

So where to begin....well I typed this all up a few days ago, while Jacob was in the hospital after his biopsy.......I logged on tonight to finish up and publish it to my blog!  Only to log in and find it was completely blank............................................. Wow and I no longer have all of my notes from the napkins, scrap papers of things I had written down that really hit home for me.  So here I sit, having no idea where to start again.  Oh wait JOY!!!

Joy is translated from a Greek verb for rejoice.  Talk about the English language being difficult to learn...Greek, well thats exactly what it is to me........greek!  Without getting into the details of the Greek language....joy and grace are commonly tied together and closely related in the Greek language.  That instantly jogged my thought to Philippians 4:4, Rejoice in the Lord always and again I say, Rejoice.   I thought about that for a long time.... "ALWAYS" is a big word! That means in everything, rejoice in the Lord.  Good times and bad..... One cannot have complete joy without grace.  God's grace!  Without God's grace I can do nothing.  

This is something that I am really working on...Joy no matter what.  I found a definition of joy that I thought was amazing and put things into perspective for me but that was one of the quotes I had written down on a piece of paper that I no longer have.....(very sad).  With all of that being said and doing research into joy and God's purpose of joy and how it plays a role in Christian's lives....joy is bound within our relationship with Jesus and is a result of us following his lead and have a confidence that no matter the circumstance He is right beside us.  So in seeking out joy, I found that, that is not what I should be searching for...but rather my relationship with Christ and he will lead me to joy.  Joy that I may be able to share with others.

So this past weekend was a bit rough and I found myself being short and snappy with my words.  Stress, who would guess.  Of many things going on, I find myself having to prioritize remedial tasks, otherwise they may not get done.  I make one list, only to lose it so I start a second and manage to find the first list but can't find the second....it goes on and on.  So in my frustration and stress,  it begins to bother Brian because I am the one that always has the details and am very organized.  But Brian's reassurance never fails.  My rock!

Thursday arrived, my emotions were more than 90% spent and we still had to go through Friday (surgery day) and see how the results come out Saturday...... Do you ever feel like you can't make plans for something because you have to wait for confirmation on another question...which then leads to more questions and not a solid foundation?  Well thats how I have felt over the last  6 weeks.  Makayla was graciously invited to stay the weekend with friends, who were going to take her to see Annie (on Broad Way)...oh she had so much fun, and only wish I could have gone with her!  Upon dropping her clothes off at the neighbors...she gave me a big hug and asked if she could pray with me.  We sat on the couch as Monica prayed.  Oh what a feeling to have some many friends and family around that seek God first in everything!  I couldn't help but smile from ear to ear, as tears were streaming down my face.  Thank you, Monica!

Soon after returning home, my sister and her family arrived....they were "passing" through town (the long way around) and wanted to stop by to pray with us before Jacob's biopsy.  In the last few years, we have not been able to spend as much time together as we always did.  It was great!!!  Though our house has been in total disarray for a couple of weeks, because of remodeling the hall bath, I felt relaxed.  The kids were able to play briefly, they prayed for us, and once again I couldn't help but squeeze Brian's hand, smile ear to ear and cry as my brother-in-law prayed!  They had to hit the road, as it was already late and they still had a ways to drive.  Thank you, Lizzy and Josh!

Friday, 4 a.m. came rather early, as we had only gone to bed a few hours before getting everything packed up and ready to stay at the hospital for two weeks!  We brought Makayla with us, so that she could be a part of everything going on....it was a huge shock when we arrived that she would not be allowed in the pre-op room.  But since my wonderful mother and come, we all rotated out sitting between Jacob in pre-op and Makayla in the waiting area.  The time came and Brian and I walked into the operating room with Jacob.  As the medicines began to flow, tears streamed down his face.  We both leaned over and kissed his forehead, and we were asked to step out.  No matter the circumstance, how minor or major....that feeling of helplessness is never easy.  I pulled myself together and met up with my Mom and Makayla in the waiting area.  Makayla was of course starving...... So my mom, Makayla and I headed down to McDonald's (2 floors down) to eat breakfast.

Upon arriving back in the waiting area, Brian had already gone back to recovery.  So I go back to find Jacob half awake asking for a popsicle.  Though he had slurred speech, by golly he was going to eat that popsicle.  The doctor stepped in for a bit to tell us everything went well and he had asked the pathologist for a preliminary report that day.   That was great news!  No more waiting (at least for the immediate news)......Jacob received a room a couple of hours later.....My mom took Makayla with her when she left to spend the afternoon with GG and to get her nails and toes painted!!!  Jacob had to lay flat for 12 hours and in bed for 24....he never minded since he was able to watch as many movies and play as many games as he wanted!!!

Around 4 p.m., the doctor arrived with great news..........Jacob did not have the aggressive cells that everyone was expecting, as he had on his last biopsy.  This meant we would be going home the next day.......so much for needing to pack for two weeks!  But that's ok!!!  His course of treatment would be decided once all of the reports were received.  God's plan is so much larger than our's!  I know at that moment I felt joy....a source of delight, its what lies underneath all emotions, no matter what happens.......Is it easier to feel joyful when everything is going well?  Well of course!  But God's grace provides us with the opportunity to have joy regardless of the situation.  A quiet confidence that God is in control.

Brian decided he would head home before Friday evening traffic.  So there it was...just Jacob and I.  Exactly what I wanted.....Brian told him he had to read so many minutes for every few minutes he played his game.....well Daddy wasn't there.  So we played video games the whole time!  Him mostly, as I am not very good.  The games these days are much harder than the regular nintendo games I use to play.  Jacob played his games, I read and watched TV....nice and calm.  Later that evening some friends stopped by that I had not seen in a long time.  It was great to catch up, and I do believe that I talked their ears off!  They stayed till 11 p.m, Jacob had asleep whilee watching the 4th movie of Star Wars.  When they left, I made sure Jacob was asleep, and stepped out to the nurses station.  I checked in letting them know I was going to run downstairs to grab something to eat and would be right back.  Of course the only think open all night in the hospital is McDonalds.......(in St. Lukes of all places..they are known for the phenomenal cardiology care...but yet McDonald looms in the basement).....so I go down 12 floors, cross the street and go to the McDonalds.  Forget eating health, as I hadn't eaten since 9 a.m.  

As I'm standing in line, I make small talk with a lady and her son in front of me.  They both had on visitor tags and I couldn't help but notice the exhaustion and burden they seemed to be carrying.  You could tell they both had been crying, but I dare not ask.  But she turns to me and says, "Is your child in the hospital?" and I replied "yes, is your's?"  She smiled grimly and said "yes, he is 11 years old and was just diagnosed with retinoblastoma."  How my heart sank.........Her tears immediately welled up, as if just saying the words made all the pain come back.  I put my arm around her and told her that God was in control.  She did not reply....we talked a little bit of small talk, and I told her why we were in the hospital, and a little bit of our history with Makayla's cancer.  She asked, "how do you stay so positive?"  I paused for a moment and thought.....The only thing I could say was "Are you a Christian? God gives me the joy and courage to face even the toughest situations.  God does not promise days without pain, days without sorrow, or sun without rain, but He does promise strength for the day, comfort for tears, and a light for the way."  Her son had already turned away, as if not interested in what I had to say.  She turned without saying a word.  As they were called next in line, her son (with beautiful cotton blonde hair) turned to me with tears streaming down his face and said "Thank you.  I have been trying to get her to come to church for a long time, maybe she will come now."  Without losing my composure, I said sure and got out of line.  I walked outside to the street, where a flood of emotion could no longer be held back.  I pulled myself together and realized I had been gone for about 25 minutes.  I needed to get back to Jacob....I returned to McDonalds (thank goodness the lines had gone down) and ordered a giant cheese burger, fries, coke, and 2 apple pies.

Upon arriving back to the floor and checking back in at the nurses station, I walk in the room to find Jacob smiling, staring at the door.  He asked me what I was doing, and I was just as quick to respond and ask him why he was awake.  He said "Well I heard you tell the nurses you were going to go get something to eat, and I wanted to stay awake to make sure you came back."  I couldn't help but smile....I put my bag down, and climbed in bed with him.  OH....how much I have to be thankful for!!! After he fell back to sleep, I slipped out of bed and took a few bites of my burger, which was totally cold, but it didn't matter.  I was tired...which never happens.  So I threw my dinner away, as I was no longer hungry.....and went to sleep.

I had just started reading a book that several friends had recommended.  It is a christian novel, based on extreme circumstances. A phrase in the book really stood out to me:  "Grace rarely makes sense for those looking in from the outside."  It does not get more truer than that.  God's grace.....who in their right mind sends their only son to die for a lost and dying world?  God did!!!  Without that grace there would be no reason to live.  Without grace, no one could have true joy.  So in my effort to be joyful I learned that seeking Jesus first, no matter the circumstance, Joy is the result!

*Just a footnote, we do not have Jacob's full results yet, and as soon as we do I will let you know.  He is doing well and we have actually started to talk about small vacation plans (that do not include international travel this year), but plans to hang out where Jacob can have access to his type of food, and not too far from the medical center.

Where do I start? I really have no idea.....I have wanted to start a blog for a while but had no direction. Do I write about my family? Well that's a long story..... My work? Well that's a sensitive subject! Do I write about my relationship with Christ?  Do people even care about what I write about......?  My writing skills are not the best, as all through high school and college, I paid people to write my papers because I am not eloquent in my speech or punctuation.  So if you can deal with that....read on.  However if you are easily annoyed with grammar errors, you will really be annoyed if you keep reading.  I figured I would start writing what was going on in life.  My ups and downs....Just LIFE!

My name is Laura, I was born and raised in a very small town, deep in the heart of East Texas.  I was raised by the best parents anyone could ask for, along with a sister and brother!  Because of the love that our parents showed us, we are all well rounded adults with our faith based in Jesus Christ.  Though during my "growing up year" there were times I thought my parents were stupid...but oh how I look back now.  Hind-sight is 20/20.  But overall I think I came out pretty normal....(some may disagree..).   Growing up our family and extended family were very close.  Sort of a long story, but my Mom and Aunt, married two brothers......Hopefully you get the picture because minus drawing stick figures to explain it...thats the best it gets.  In saying that, my cousins and I have the same sets of grandparents (on both sides).  Which makes for a small family...but very close!  We grew up more like brothers and sisters, rather than cousins.  My families' Christian foundation goes back many generations.  Today both of my grandmothers are still living, and they are a cornerstones in our family, that I wish everyone had.  They have built legacies to withstand many generations.  My Grandmothers, Mary and Frankie will leave legacies that I want to live up to for my grandchildren, the way Christ intended for us to live.  Going back to my immediate family...my mother was a stay at home mom for many years.  I still remember coming home to her sewing for hours and hours, to provide a little extra money for us.  She would make so many of our clothes...at the time I hated it because I wanted the "in things"...but now how I wish I took an interest in learning how to do it.  I have a sewing machine, thanks to my mother-in-law, that I have never used.  My dad was a trucker and was gone a lot, until my brother was born.  But I remember time of him coming home after being gone for several days/weeks.  He always parked his 18-wheeler at my grandparent's house about 1/4 mile away....and we could hear him set the jake break and we would take off running to go see him.  Sometimes we would travel with him which I do not remember much about.  He got off the road when my brother was born.  My sister is older, and fits the mold for the older sibling...always responsible, organized, everything in place and she felt the weight of the world on her shoulders, even at a young age.  She is now a wonderful mother to three children.  Her and her husband are raising their children in a Christian home, and have no doubt they live their lives as Christ intended.  My sister is an amazing woman and will always have your back.  Then there is me...in the middle!  I never wanted responsibility, wanted to play all the time and really didn't care if things were clean.  I always managed to spend most of my time in the bathroom, when it was time to do the dishes or fold laundry...(which is incredibly funny now, because my daughter has started doing this very same thing).  I love the water...lake, beach, creek....it doesn't matter (well it does now, but it didn't then!  Funny how that changes as you get older and realize what is in the unknown water below.)  I was an avid water skier, and skied year round.  I loved scuba diving.....anything related to water, you could count me in.  My Dad was always right there supporting my play habit (along with his!!!)  My brother......one of the best men you could ever meet.  A genuine gentleman, which is very hard to find these days.  A true testament to how my Mom and Dad raised him and expected the utmost respect from him, and to give the utmost respect.  He is a people pleaser, but a man that knows what he wants and doesn't sway from that.  He is recently engaged to a wonderful lady, that we welcome to the family with open arms!  (so excited for the wedding!)

On to my family.....My husband and I met at college.  My parents often told me that they prayed for my future mate everyday.  Man, did God answer that prayer.  I was sent the most AMAZING man anyone could ask for.  Someone that will love and cherish me through everything.  We started dating in September of 2000 and decided not too long after that we wanted to do this forever.  With caution to the wind, we married in July of 2001.  I had just turned 19 and man what a wake up call.  Don't get me wrong I would not change it for anything in this world.  I had no clue though.  I had gone from living at home, to a college dorm room, to being married.  I had never been "on my own."  This was complete culture shock.  You mean I have to wash my own clothes, do the dishes (without anyone telling me too), get a job.....WHAT!!!  But back to God answers prayers, we made it through the first few years of being completely broke, but so in love!!!  In April of 2002, we found out that we were expecting....I really had no idea or sense of true responsibility.  Our son, Jacob, was born in December of 2002.  Wow, that was a change!!!  Responsibility at a whole new level.  Jacob had severe re-flux, but overall a health baby.  I vividly remember rocking him one of many sleepless nights, and thinking that he was our sole responsibility...no one was going to come in and make it all go away, or I could send him home.  He was our's.........I remember crying that night because he wouldn't stop crying...and praying that I would just wake up and him be in kindergarten.  Well that happened.....He is now 9!!!  What happened?  How I miss that time that I wished away.....the time that I should have stopped and cherished the little things.  The times that I had to get the dishes done, or the clothes folded or dinner cooked.  Now I'm wishing I could go back.  In November of 2003 we found out we were expecting again......We had just learned how to manage one...what are we going to do with TWO???  Makayla was born in May of 2004, the day after my birthday.  At two weeks early, she was as health as could be.  She was a calm baby, quiet and happy all the time.  Jacob and Makayla, only being 17 months apart (to the day)...have become great friends.  They play together for hours!  Though they have their fights, they play more than they fight......except for in the car.  I don't know what it is about the car that causes them to fight?  If anyone finds the answer to that, please let me know!!!  Makayla is now 7 (7 1/2 is what she would say)!  Man, do I feel inadequate most of the time!  My husband's job is a bit dangerous, but oh how he enjoys what he does!!!  We don't talk about his work much, as most of the time it involves him kicking down doors looking for people, and most of the time its not appropriate for the kids.  My job keeps me busy and also a subject that we do not talk about, as I deal with a handful of people, within the State of Texas....that NO ONE likes, most of them don't even like themselves. We love the outdoors, whether it be camping, fishing or hiking, we love it.  We love the beach and the summer time, even the 100+ days that often plague Texas through the summer.  We raise Basset Hounds and love them like they are kids.  We only have about one little a year, which lets us care for them individually and raise them into healthy beautiful dogs!  Its something we do on the side and it helps teach the kids about life and the cycles of life.  It also teaches them responsibility.  Both of the kids play piano, which they have come to love.....listening to them play praise hymns early in the morning, it doesn't get much better than that!  The last, almost, 11 years have flown by........God has shaped Brian and I into the people we are today through many circumstances...but a few stand out that have taught us the most:

In February of 2006, Makayla started having weird symptoms and after several weeks of testing and hospital time, we found out she had a tumor on her spine.  I remember sitting in her hospital room, with her half asleep still from the anesthesia (from a CT scan), and a doctor coming into her room.  His face a look I will never forget (nor will I ever forget his name).  He sat down on a couch that was in the room and told me that they found a mass on her spine.  Total shock!!!  To this day, it still brings tears to my eyes, as if someone is telling me all over again!  My baby, only a baby......The doctor indicated they could not tell what it was but that it was not supposed to be there.  They needed to do another scan and there would be several different doctors coming in to look at her over the next several hours to see if it was an emergency or if it could wait till Monday.  He was the most sincere doctor I have ever met.  He wept with me, as I called Brian.  He talked with Brian and told him to be careful getting to the hospital and as soon as he got there to have the nurse page him and he would come back and talk with all the family that would be there.  So in a matter of a few hours, our immediate family had arrived.  I still feel as if it was a nightmare.  The next several weeks were as if I was in a fog.  Her surgery went well and she was soon diagnosed with Neuroblastoma.  What a world.......the doctors informed us then, that if anymore time would have been wasted the cancer would squeezed the main artery to her lungs and she would have not woken up.  Though I would never wish this on anyone....man did I learn how to become a better mother and person.  I learned to stand up for what I needed.  I learned that the squeaky wheel gets the grease! And most of all I learned that God does not always expect us to pray.  He expects us to lean on him, but he also expects us to have people be prayer intercessors for us!!! There were often times I would kneel to pray and the only thing that would come out were tears.  He understood my pain!  Makayla came through it all!!!  Praise God!!!  He allowed us to go through this for some reason.  I don't know why, maybe I never will, but Makayla is a true blessing to be around and LOVES to help anyone or anything in need!

In November of 2008, Jacob was diagnosed with Henoch-Schonlein Purpura (HSP).  After several bouts with that throughout November and December, in January of 2009, it moved to his kidneys.  A kidney biopsy was done in January of 2009, and he was diagnosed with HSP Nephritis (IgA Nephropathy).  He was in renal failure by the time he was diagnosed.  What a scary ride!  After learning the ropes with Makayla, I knew I could ask questions and didn't care if the doctors felt as if I was questioning them.  That was my child.  After several months, in and out of the hospital, he was on the road to recovery.  He was then diagnosed with Hypo-gammagobulinanemia, and had to be treated every 4 weeks with IVIG and a parasitic antibiotic infusion.  This was to boast his immune system.  So after a year and half of kidney medications, heavy steroids and immunosuppressants, they began to wean him off.  It took about 3 months, but his kidneys were in remission.  So we began to focus on getting his immune system back up and running, as to wean off of the IVIG as well.  As of this past December (2011), the kidney and immune counts were normal.  He has not had a treatment since.......  Though our journey is not over there......At the beginning of February during a routine kidney exam, his levels were off.  His urine and blood results were off the charts.  He is heading down a slippery slope.  Really?  Its frustrating!  We make plans and think them through....and well God doesn't always agree with those plans.  He has other things in mind.  Over the last several weeks, Jacob has had several tests done and all indicate that the HSP Nephritis (IgA) is active again.  He just had an appointment and a biopsy has been scheduled to see if there are aggressive cells present, this time.  If they are present, as they were on the last biopsy, he will remain in the hospital for a couple of weeks and receive IV infusions of drugs that will help to slow the progress down, but smashing out his immune system again.  So the vicious cycle starts again.  Square 1......after a year of normalcy...3 years since it started...we are back at the starting line!!!  The doctor told us yesterday that giving how quickly it came back, he does not believe it was treated hard or long enough the first time.  Long term he will need a transplant, but immediately we are looking at this round of kidney treatment lasting 3-5 years.  Jacob is not looking forward to being back in the hospital, or not being able to rough house with his dad or friends.  (however he is excited that I told him we could buy him a new DSxl.)  But he's a trooper and takes IV's and shots like a champ.  Makayla is very anxious about it as well.  In talking it out with both of the kids, they show the anxiety about the situation in very different ways!  And Brian and I, need to be sensitive to both of their needs.  Before, Makayla was kept in her same routine, but was traded back and forth with people, which is something I thought she liked because she was getting attention. Apparently this was not the case, she let me know two weeks ago, that she did not like that and wanted to be with Brian and/or I....so we are going to accommodate her wishes as the best we can, and one of us be with her every night.  We did explain there may be nights that we can't, but she will be able to talk to us.  Jacob, has expressed how much he doesn't want to start back at square 1 and feels quite defeated right now, in his frustration he hides his tears, which breaks my heart!  The ache to be "normal"....to go to friend's houses, not be on a "stupid" diet, not get shots and IVs every month.

Looking back over both of my childrens' health issues.....I remember being in a fog.  I do not enjoy that fog. I can remember dates, medications and medical related decisions as if I made them yesterday.....but I don't remember enjoying the time alone, I was able to spend with them.  I don't remember all of the visitors, the change in seasons, other events that took place during those times.  All I remember is being ready to be home, being ready to be in a routine.....tired of being woke up 5 or 6 times a night because of nurses....tired of being woke up at 6 am when the doctors made their rounds.  Why did I not allow myself to enjoy this time with them?  I know the real reason, and that's because I thought I had control of it...when I didn't.  This time around, I'm going into it with joy!  I'm going to the hospital with a smile!  God is taking care of my son!!!  I have no reason to worry, I'm simply here for the ride!   (Now don't get me wrong...I will make sure everything is to par and he is getting what he needs.)  I am going to climb up in bed with him and play video games, read books, color pictures.......whatever he wants to do.  The anxiety of the last several weeks is a burden I can no longer carry...and the best part, is I don't have to.  I know that God is in control.  I know that regardless of the outcome, God has a plan.   Please do not mistake my certainty for arrogance.  The Bible clearly says in Philippians 4:7, The peace of God, which transcends all understanding, will guard your heart and mind in Jesus Christ.

Life is an unknown path....some may look at this as something negative or scary, but its not.  If you have faith in Jesus Christ, it doesn't matter what is around the corner.  He will always love and protect you.  Our worldly views of love and protection do not match God's.  So as we start down this path in our lives remember Proverbs 3:5-6, "Trust in the Lord with all of your heart, lean not on your own understanding; in all of your ways submit to him, and he will make your paths straight."  I struggle with this verse, as human nature, especially as a mother, is to worry and have anxiety about what the future holds.  But everything happens for a reason!!!  People often pray for healing, but I also know that God's ways are not our ways.  I pray that He will guide us, that He will give us wisdom, that His will be done! HIS Will is what I want done.

As I close my first blog, I ask that you pray for our family.....as we continue down this unknown path.  I ask that you pray specifically for Jacob and that God will show us the direction He wants us to travel!