The Reality

     I’m really close to throwing a really big bash for myself…a pity party complete with sadness, anger, bitterness and even a little I really don’t care attitude.  The last straw came today when I got a phone call at work this morning.  It was the doctor’s office telling me that our insurance denied the new medication Daniel has been taking on a trial basis this past week.  We paid out of pocket for a week’s worth of medicine ( to the tune of $21 per pill) to see how he would do with it.  He’s not 100% by any means, but we have seen some improvement.  In all the treatment plans we’ve tried in the past this medication has shown the most promise.  With that phone call, I was simply crushed and thought to myself,” I’m sure how much more I can handle.” 

      The stark reality is no one has yet to be able to diagnose Daniel and we’ve tried every stimulant out there in hopes of keeping him awake.  School for him has completely fallen apart, an honor roll student reduced to just surviving.  Medical bills keep coming in and budget cuts keep swiping away at our income.  Our days revolve around how he feels and if he is able to stay awake longer than just a couple of hours.  The reality is I’ve lost hope in the medical field and have been totally disillusioned.  I’m angry that no one senses urgency in his chronic illness that has slowly taken his teenage life away.

     Yes, I know without a doubt, God will take all of this and work it for His perfect good.  But, right now, it still hurts, it’s still overwhelming, it’s still exhausting.  Just when I think when I’ve got one thing under control, then something else breaks loose. Any other day I probably would just cry for a few minutes and then move on, but today I just got angry. We pay huge insurance premiums and they get to dictate what my son can have and who he can see for medical issues. Yes, we’ve already appealed their decision, but it shouldn’t have to be this way. It’s really a good thing that my husband handled the appeal phone call today, because I would have probably told them off with a royal hissy fit attitude. The sad part is that I”m really not like that at all. I”m a very calm, even tempered, patient person but these constant battles have turned me into an assertive, blunt and emotional mom fighting for my son who can’t fight for himself right now.
The reality is we’re all so tired, so stressed and so ready for a miracle. Ok, a real pity party for five whole minutes. Then, we put on our work boots and keep going.

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Learning in a Storm

     This Sunday concluded a very powerful series of sermons on dealing with storms in our lives.  I walked away from the concluding service today with an intense affirmation of God’s presence and a desire to listen to more. It was so powerful, I didn’t want the service to end. Even though I feel like a mac truck ran over me, I was determined to go to church today to listen and to just absorb. Yes, stress took its final toll and I started feeling awful at work on Friday, by Saturday I was in the bed most of the day.  Now I’m in the stage of, as long as I have advil in me and I stay rather quiet, I feel halfway decent.  Even with this crud, I was able to glean wise lessons from today.

      It was affirmed again and again, the storm will END.  Even though the rain, the lightening, the thunder, the howling winds have pelted down on us for the past two years, it will eventually end.  Even though I may not “see” it, God is forever faithful and He has never left us.  In this trial turned into the storm of my life, I have learned some valuable lessons, both good and bad, and I will come out from under this storm.   I’ve learned that crying won’t kill me, hurt me or turn me into a wimp.  Instead, my tears have cleansed me, relieved unbelievable pressure, and have even prompted strangers to hand over tissues to me in complete kindness.  I’ve also learned in this journey around the world and back again, I can not put my trust into anyone or anything except God Himself.  I may be tempted to or want to, but the bottom line is that I can only trust my Creator.

      I’ve also learned you just keep going whether you want to or not.  Some days it has taken every bit of determination just to get up, get dressed and go to work.  A cup of coffee can be miracle in a mug.  Putting on makeup is a chore, but it really does help a defeated disposition.  Folding laundry in the quietness can be soothing and at least, something productive is accomplished. Keeping the dishes washed and the counters clean helps to bring a sense of sanity when my world has been turned upside down. A very wise spiritual mentor told me long ago when I was discouraged, “You get dressed, You make your bed and You do your dishes, God will take care of the rest.”.

       This journey has brought humility in so many ways.  Society wants us to be totally self-sufficient and to believe in the “American Dream”.  When your back’s against the wall and you have nowhere to turn, you realize those lies. It is deeply humbling to have let go of pride and be willing to accept gifts from others.  I can’t even begin to relate our gratefulness to others that have stepped in to help with encouragement, with gift cards and with hugs at just the right time. God always provides, even though it may not be in the way we envisioned.

       When I get to the other side of this storm and stand in the wreckage, and the new beginnings I’m sure more lessons will be revealed. For now, I’m still twirling and whirling in the eye of the storm and trying to catch my breath between landings.  A storm never hits you from just one angle. it totally encompasses you.  Until it stops completely, I am following the advice from our pastor this morning:  “Be faithful and keep doing good.”  No profound eight step process to survive a storm, just keep it simple….and remember who walked on the water.  

    

    

 

     

 

     

God is Bigger

      When our girls were little, they loved to watch and to sing the Biblical songs on the Veggie Tales videos.  One of their absolute favorites was “God is Bigger than the Boogie Man.”  Yes, even in college, the girls would gather with their friends and watch the Veggie Tales! A simple song, a simple concept and the simple fact that God is bigger than anything we face in life.

     Now, as we have traveled back from University of Virginia one more time, I as an adult, am clinging to the fact that God is bigger than all we are facing right now.  The news we received about Daniel today was not good, not what we had hoped for, and it was a harsh dose of reality.  The fact remains that every doctor we have gone to has been unable to formally diagnose him and he’s not getting any better.  Yes, there are moments now and then, but that’s all they are….moments of joy, moments of hope, moments of gratitude.  The harsh reality is that no physician has been able to find the root cause of his life-altering fatigue and he continues to spiral downward.  He has not positively responded to any treatment plan presented.  The doctor today was very blunt and stated that I may never get my son back and we need to deal with the reality that he is like this and may stay this way.  Through streaming tears, I let forth a tirade of words that I refuse to believe that and I will never stop trying to find answers for him.  Call it denial, call it a broken-hearted mom, I don’t care what you call it I will not stop advocating for our son.

        The truth is we’re going to have to make some family decisions as to what to do next. I’m burned out on doctors and he doesn’t need to hear, “I don’t know what’s wrong” anymore.  In Romans 8:26. God promises the Holy Spirit will intervene for us when we don’t know what to pray.  I’m depending on His promise right now, because tears have overtaken me too many times.  God is my lifeline, my life preserver and He’s all I have left….. no doctor has found any answer, our budget is busted to the point of no return, work is nothing but pushing SOL tests right now. 

     Through the deafening silence of God, I still BELIEVE Him, I still LOVE Him, and I still put all my HOPE in Him alone.  I don’t understand, and maybe I never will, but that doesn’t stop my pure gratefulness for all He has delivered me from and the grace He extends to me every single day.  He is bigger, more powerful and the most Divine over all of this and He will continue to reign.  It’s not easy being a believer, being a mom, being a teacher. but He never promised it would be easy. He did promise He would intercede for me when I have no words to pray…Come Holy Spirit, Come.

For Just a Little While

      For a few fleeting hours this past weekend I had my son back. During Sarah’s graduation rainy day picnic, I thankfully watched him interact with family members, smile that melt-your-heart smile and play baseball in the backyard with his cousins.  With a grateful heart, I watched him stand in front of the refrigerator with the door gaping wide open and look for more to eat. He even made a comment later that was laced with just a little too much disrespect.  I shot him the “mom” look straight from the gates of hell, and his immediate response was, “Sorry, mom, I love you.”    Who would have ever known I would welcome even a comment I didn’t like? 

     Yes, I’m very guilty of taking simple actions from a teenager for granted.  Simple things like watching him pile food on his paper plate, feed the dogs,and walk around outside in the yard are all “mini-miracles” instead of ordinary moments.  For just a little while this past weekend I got to see my son again.  Going to Wal-Mart with his sisters is a major accomplishment and so is eating cookie dough straight from the package instead of cooking it first!   Staying awake during the day for two days straight has not been seen for months.  So, when a parent sees these glimpses of hope, the crash on Monday morning is so much harder to handle, so disappointing, so heartbreaking….so not fair.

      I left him sleeping this morning, wrapped in his camouflage quilt,  He tried so hard to wake up to go to school, but the exhaustion took over.  For just a little while, I had him back.  I savored every moment…even a comment that needed correction.  For just a little while, I saw the compassionate man he will be one day by volunteering to play and to eat with his cousins outside in between rainy spurts. For just a little while, I got to see him be the brother he needs to be and enjoy the time with his sisters.  For just a little while, I savored a reprieve from the storm that has poured constantly onto our lives.  One day, this storm will end, the winds will cease, the rain will stop, the whirlwind will die down.  I will stand firm and not be devastated by this storm…one day I will dance in the rain.

Milestones

      The elation of graduation is settling down and the reality of unpacking everything at home is sinking in very quickly.  The milestone of Sarah completing college is forever etched in our memory. As a parent, your mind wanders back to the previous accomplished milestones: the first smile, eating baby food, learning to sit, crawl and finally letting go of mom’s hands and walking down the hallway!  The school memories of friendships, projects and the prom have flooded my mind these past couple of days.  Now, I watch her unpacking, cleaning, drawing in her sketch pad and wonder where in the world did 23 years go to so quickly?

     As thankful as I am, I have also finally admitted to myself that part of me is grieving.  She is not a little girl with a bouncy ponytail anymore and I have to let go of her to transform into the woman God wants her to be.  Right now, we don’t know exactly what path she will take and that really is okay.  She has a very profitable and fun job as a nanny for the summer so she’s got a little time to decide if she definitely wants to pursue graduate school or if she wants to start working full-time. 

       In my reflective mood from the past few days, I’ve also finally admitted that I am grieving for Daniel and all the life milestones that have been put on hold until we find out what’s really going on with him medically.  I’m not bitter or cynical, I’m just finally being honest with myself.  He should be driving, going to youth church events, and enjoying school activities. Instead, he has spent the majority of the last two years in his bed, on the couch or visiting different doctors.  I want the school milestones of going to student award assemblies, running to Wal-Mart at 10:00 pm to get more poster board, and dashing out the door in the morning at the last minute.  I miss the church milestones of hanging out with youth group, watching his faith solidify and going on missions activities. The teenage boy milestones of growing into manhood have been stifled by this mysterious illness.  I grieve for the precious time he has lost to this illness that has turned our world upside down.
Yes, this is definitely a transitional time in my life and conflicting emotions have crowded my mind. My faith has not faltered, in fact I’m probably more dependent on God now than I’ve ever been. All I have to offer is brokenness, empty hands and my hope that stands in my Savior alone.

On Hold

        We’ve all been caught up in the annoying on hold position while telephoning someone. It’s so frustrating to want to talk to someone and you either have to keep punching in different numbers or get caught on hold listening to music that grates on your last nerve. On hold is how our life has been in the past year.  Everything we ever knew, we ever trusted in a secular sense, and what we depended on has come to a screeching halt.  A child’s illness wracks your every fiber from the inside out, especially an illness that is still unknown and appeared out of nowhere to a perfectly healthy child.

      While we hang on in the on hold scenario, life has moved on leaving us in the dust.  College graduation with all its excitement, elation and eagerness is upon us.  Our hearts are heavy and worn out dealing with Daniel’s illness, but the accomplishment of our precious daughter will not be overlooked in any way.   Transitions are overruling our home now as the girls move back in with all their “stuff”, but we will adjust one day at a time.  There have been plenty of times, I’ve completed a monotonous chore, like unloading the dishwasher, while I was holding the phone on hold half-listening to obnoxious music.  So, while we are on hold, we will still move on.

      We will move on because even though we feel our lives are out of control, God is orchestrating every moment from His heavenly realm.  He has seen every tear drop, every sleepless night, every effort to make Daniel feel better.  Even though we are disappointed, disillusioned and sometimes defeated we will move on.  God will take this trial and turn it for His glory.  Moving on does not mean the exhaustion and the heartache is gone, it just means we will continue to step boldly in faith and trust.  On hold is not a place we would have chosen to be, but right now, it’s where we are.  Unlike waiting for a representative who might answer, we wait for the mighty LORD who will always answer our prayers. With our exhaustion, our wrenched hearts and our pure emptiness we will praise His Holy Name and move on.

Still Standing

      In church this morning I listened to a sermon so powerful, so intense and so profound that it literally took my breath away,   I’ve been visiting a local non-denominational church the past few Sundays and have been totally pulled in by the real life messages.  Today the pastor began a new series on preparing for the storms in our lives.  As scriptures reminds us it’s not a matter of “if” storms come, it is “when” they come.  He gave the analogy of when children play and run in a swimming pool. They run and run in one direction until a strong current is formed.  Then, when they stop suddenly and try to change directions the current keeps them from moving quickly and sometimes it is all they can do just to keep standing. What he said next literally took my breath away and caused tears to silently slide down my cheeks.  He told us to consider that God may using us to stand against the current, to stand in the storm, to stop the direction of generational sin. We are standing for God to use us to change our family history.

     Instant vivid flashbacks of abuse, verbal conflict, and pure dysfunctional family behavior flashed across my brain.  Unfortunately, I come from a line of generational sin that is miles long and still today tries to rear its ugly head.  As a child I witnessed and heard things that a child should never see or hear.  Part of it was due to family members being raised in alcoholism, and part of it was  family members exhibiting a mean spirit.  It is truly only through God’s delivering power and forgiveness that I have removed myself from the hurt, the abuse and the darkness.

      Especially in this past year, the roaring winds have blown, the storm has raged on and on with dealing with Daniel’s illness, going to doctor after doctor, paying bills we weren’t expecting and hoping and praying for answers.  At times. this storm that blew in from no where has seemed to completely consume us.  But, as I was reminded this morning, I am still standing and my children will be different, will be stronger, and will NEVER be entangled in the abuse of past generations.

       Yes, our storm still rages, and the clouds have not broken yet.  As with every storm, it eventually stops, you pick up the damaged pieces and you move on. I don’t know the medical answers for Daniel. I don’t know what career path Sarah will be taking. I don’t even know how all the bills are going to be paid.  But, I’m still standing against the current and I will be used by God’s Hands.  God is going to use this storm for His glory and I get to lead the pack into a new family generation of believers who trust without wavering.

My Wish

        The days are fast approaching for the college graduation of our sweet Sarah baby.  As these undergraduate college days come to a close, my thoughts focus on her and all that I want to wish for her as she enters “real life” adulthood.  My wishes for her go way beyond the sappy a little sunshine and a little rain in all her days.  No, my wishes for her are realistic, encouraging and true lessons of life.

I wish for you the acknowledgement that life is very hard at times, but God is so very good.

I wish for you the ability to forgive when others hurt you and move on being a stronger person.  Forgiveness doesn’t make us forget the hurt, but it frees us from being entangled in bondage over it. When you forgive, you will walk in pure freedom.

I wish for you empathy for others, but also the wisdom of when to walk away from toxic people.  Everyone has their own hurts, love them but don’t let them become overbearing.

I wish for you a plan of how to manage your money wisely.  You are so generous and your finances will be hard earned.  Depend upon God to show you His plan for your finances.

I wish for you an unquenchable passion for your work, your gifts and your talents. Don’t ever stop having fun and enjoy child-like joyous moments.

I wish for you smiles, giggles and deep belly laughs just because we all need laughter.

I wish for you an appreciation of what you do well, what you need to improve and the discernment to know when to push yourself a little harder and when to step back and just wait in God’s grace.

I wish for you a daily quiet time that is just for you and God and no one will intrude on this precious time with your Savior.

I wish for you kindness, courtesy and just plain good manners,  The world is filled with rude people, may your graciousness soften their hardness. 

I wish for you a desire for God’s Word as the only truth and guide for your life.

I wish for you an acceptance that you are loved, adored, and appreciated. This fact will never change as the tides of life changes flow over you.

Now, Sarah, go…walk, skip, run on the path God has chosen for you.  Your mom will be cheering you on each step of the way.  You’re already a godly woman, now you will be a beautiful, humble obedient servant.  I wish for you to be able to hear every God whisper and for your life to willingly bend and mold to His perfect will for you. 

P.S. Have I told you how much I absolutely love and adore you?

 

Holding On

      In the past three days, Daniel has been awake maybe 10 hours and that’s probably pushing it.  His energy, stamina and alertness have vanished and a sleeping child is all that remains.  When he was a toddler. I would have paid someone $100 just to get him to take a nap of any length over ten minutes, and now I would be willing to sacrifice anything we own just to see him well again.  Granted, I am very grateful that whatever he has is not terminal and he’s not in any pain.  Logically, I know it could be a lot worse than what it is, but still my emotional “mom” heart is broken and stretched to the limit.

     In school, I have to hold my tongue and keep my emotions intact when someone casually asks me, “How are you?”  Right now in my life. that’s a very loaded question and it’s a labored effort to answer it.  I have to keep my mouth under control when my students act up and test the limits.  Every part of me wants to lash out at them, but I can’t and I won’t. 

     It was so much easier when my children were younger.  Every scrape, bruise, bump and boo-boo was kissed and all was better after a hug, a kiss and a cure-all band-aid.  Sore throats and fevers were cured with a popsicle and curling up in the bed with mommy and daddy.  Upset tummies meant you got to indulge in a rare ginger-ale soda.  Now, at only six weeks away from being seventeen, these parent remedies aren’t working and neither is anything else. As I’ve mentioned before, Daniel is handling all of this well and doesn’t bemoan his fate or feel sorry for himself. 

     Yes, it’s ME who’s barely hanging on…not him.  He’s sleeping and trying to heal, and I’m driving my own self crazy at times.  Our UVA specialist has told us that until we can have the extensive sleep study completed, to let him sleep.  School has been put on hold, teaching him to drive is out of the question now, and we’re fortunate if he eats one good meal a day. So, he sleeps and sleeps and I pray, cry, go through the motions at work and keep holding on. 

      I keep holding on because God has never failed me. I keep holding on because there’s simply no choice, my family and my students depend on me. I keep holding on because I’m the mom. I keep holding on because if I let go it will all unravel and I’m not sure the consequences of all that is really worth it. I hold on to God’s promises, His will, His timing and His wisdom…because there is simply nothing else to hold on to right now.