Bittersweet Victory

     We have an answer, a diagnosis to hang our hat on, and we are still trying to process all of it.  Daniel has been diagnosed with a very rare neurological disorder called Klein Levin Syndrome or sleeping beauty syndrome.  You would think after these very long two years I would be dancing across the room with joy; instead, I am stunned, relieved and still trying to wrap my brain around the confirmation.  It’s sort of a good news/bad news situation.  The good news is we have FINALLY found a neurologist that is working with us and not looking at us like we’re absolutely crazy.  It is also good news that this mysterious syndrome leaves within 4-8 years on its own as gradually as it crept up on him. Daniel is taking an experimental drug that’s never been used for this syndrome and he’s the very first case by our neurologist.  So, he may be famous one day in a medical journal! 

      On the other hand, honestly, the thought of him being chronically ill for the rest of high school and maybe into his college years sends my knees into buckling mode and my chest into heavy sobs.  I’m really not being negative, I’m truly trying to face the reality that this is the way it will be for at least for 2 more years. Maybe I should adapt better, maybe I should keep my chin up and move on, maybe I should be overwhelmed in gratitude it’s not worse. The fact is emotions are swirling within me, and I still have to be mom no matter what the situation.

      So, I choose to move on, acknowledging there will still be some very tough days ahead. I choose to be grateful my sweet son will eventually get better and does not have some fatal disease.  I choose to keep walking, head up, and feet forward. God loves me, he loves Daniel and He WILL take care of all of us.

         Family dynamics are so obvious when you have to absorb news like this.  Daniel and Clif are the strong, stoic types and simply accept and move on. The girls and I want to talk it out, cry about it and then talk about it again until no more words can be spoken.  Neither is right or wrong, but it’s so interesting to see how we all handle things living in the same house.  Sometimes, I just don’t feel like talking anymore and just want to sit with my coffee cup, but that is a luxury I can not afford with laundry, dishes and life surrounding me 24/7. 

       Our constant prayer for a diagnosis has been answered and I am so grateful.  Just knowing that it has a name and I’m not a crazy mom is relieving. God has carried us through and now, more than ever, we are totally dependent upon His mercies that are new everyday. Praise His Holy Name for He IS good!

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Mama’s Bed

      A truly blissful Saturday morning….hot coffee, the newspaper and a box of Krispy Kreme doughnuts shared in bed this morning.  First, Clif and I shared our donuts together all cuddled up underneath the covers. Then the girls crawled in the warm bed along with the 2 small dogs to indulge in their rare treat of doughnuts. It was definitely a “Kodak” moment with the girls sprawled on the bed eating doughnuts and the dogs poking around the covers looking for dropped crumbs and tiny pieces of glaze that had fallen.  A precious moment captured forever in memories of mama’s bed.

     It seems that over the years mama’s bed is where everyone tends to congregate, hang out and just chill.  Over our almost twenty five years of marriage, we have bought new mattresses twice and still have the same headboard and frame from day one of our life together.  A simple queen size bed, doesn’t matter how we rearrange the furniture, everybody ends up in mama’s bed somehow or someway.

     Mama’s bed has held every child, nursed a sick husband back to health and has chased every nightmare away.  Every child psychologist out there says to never put your babies in bed with you, but I did…every single one of them.  In mama’s bed, I held my babies tight, hugged them, kissed them, tickled them and talked long into the night to them.  Not even one child has “issues” with independence, self-esteem or confidence.  In Mama’s bed the world is not such an evil place when you’re cuddled and wrapped in warm blankets.

     In Mama’s bed, prayers are said in the middle of the night when Mama can’t sleep. To do lists are made on the paper pad beside the bed.  In Mama’s bed, relaxation is inevitable with propped up pillows, a cup of hot tea and reading a magazine before going to sleep. Tightly tucked in sheets are a must and a quilt on top is necessary for sound sleep and for mama’s cuddling purposes. 

     In Mama’s bed, a devotion book is beside the bed for a quick inspirational read before my feet even hit the floor.  The bedroom door is revolving for my children to come in, curl up and talk, talk, talk about anything and everything,  In mama’s bed, all barriers are broken down and nothing is too trivial to talk about or to share.  Sometimes, we just read quietly together, laugh over jokes on pinterest, or even watch a movie on a laptop.  There’s no schedule to follow or time restraint when you’re in mama’s bed. 

     Having a no good terrible horrible day? Come cuddle and get comfort on mama’s bed,  Having an awesome, wonderful day? Come celebrate and cuddle on mama’s bed.  Need to talk out an issue? Bring your own blanket and talk it out with no judgement on mama’s bed. Just don’t feel like talking? Come relax and just be still on mama’s bed.

     In mama’s bed, the tears have flowed, the laughter has rocked the bed, the naps have been savored, the prayers lifted up at all hours, and every crumb imaginable has been in the sheets.  Sound sleep, restless sleep, crowded sleep and everything in between has been in mama’s bed. 

     Mama’s bed, a haven, a refuge, and the place where everyone feels comfortable, cuddled and needed. Mama’s bed is cheaper than a psychiatrist’s couch, more comfortable than a counselor’s chair, and is more effective than most medical interventions.  It’s a wonder that the bed hasn’t broken over the years, but it still stands firm.  Every major appliance has been replaced in our home over the years, but mama’s bed remains the same: loving, accepting and readily available.

Excuse Me For A Moment

     Excuse me for a moment while I simply rejoice!  Summer is finally here, I do NOT miss the stress of work at all and I absolutely love being at home.  In the last two days, Daniel has mowed the back yard and rode his bike around the block. What he doesn’t know is his mama cried tears of pure joy watching him push those pedals.

     Excuse me for a moment while I have tiny glimpse of hope.  All of Daniel’s medical records have been given to a pediatric neurologist at St. Mary’s hospital for her fine tooth review.  She asked to see the records after conversing with his endocrinologist.  No, we don’t have a diagnosis yet, and we’re waiting on the latest lab results, but we are ever so slightly encouraged.  His trial medication has shown no adverse effects and this is the first time in two years any medication has even come close to attacking his fatigue level.

     Excuse me for a moment while I get ticked off….in our efforts to streamline and make our tight budget even tighter I made several phone calls in the last week.  I was following the Dave Ramsey financial advice of calling credit card companies and trying to negotiate a lower interest rate or lower payments until we can catch up on medical bills.  I was told in no uncertain terms that we did not qualify for any help or any hardship program because we are current on paying our bills. In other words, to qualify for any financial help to get us through this difficult time I would have to dishonor my family and purposely not pay our bills. By that time, our credit would be ruined as well.  So, by choosing to pay all our bills on time and being honest, we are not allowed to participate in available programs for someone going through a difficult time.  Some situations make a Christian girl just want to cuss out loud..really loud!

     Excuse me a moment while I feel reassured.  God has given me so many reassuring moments in the past few weeks.  In Walmart, I saw a lady wearing a t-shirt boldly stating in all capital letters:  I ABSOLUTELY TRUST GOD.  I walked past her, told her I loved her shirt and we high-fived each other in the middle of the aisle by the deli meats. God used a total stranger to get me through a very emotional day….AMEN!

     Excuse me for a moment while I allow myself to have a Jesus moment.  This past weekend we had several errands to run and of course, had to wait our turn in line with some of them. While waiting with my daughter Rebekah on Saturday, a stereo typical “homeless” man sat down next to us…gray scraggly hair, tattoos all over, baggy clothes.  He was eating a really juicy fresh peach and the juice was dripping off of his fingers and chin.  I started scrounging in my purse for a tissue, but Rebekah saw tissues before I did and handed him a handful. The smile and gratefulness from him immediately melted our hearts. We struck up a chit-chat conversation and I was totally drawn in by his kind crystal blue eyes.  A few minutes later he leaned forward and honestly asked me, “Do you have two quarters? I need it for bus fare home.”  I looked in my wallet, not knowing if I had any money at all, and found three quarters and pennies.  It was literally all the cash I had on me at the time.  Rebekah and I handed him the quarters. He was so grateful, shook our hands and left as quietly as he came. Driving home later, we were chatting about our encounter with him. Rebekah just adored the old man! And, yes, I’ve taught my children to not talk to strangers and to not give them money…but I reasoned that he simply could not go out and buy liquor or drugs with three quarters. She turned to me and said, “Mom, you never know, that could have been Jesus himself.”  Maybe so, and an old man who has a heart with “I love Jesus” tattooed on his arm totally captivated our hearts and attention on a busy Saturday afternoon.

     Excuse me a moment while I just be quiet and listen.  School is finally over along with the hectic schedule, the demands and the stress. I can finally just be still, quiet and truly listen. Life has been roller coaster for far too long.  It’s time to just sit it out, watch, listen and enjoy the moment. I raise my glass of diet Coke and toast to pure simplicity and silence to restore my battered soul.   “Be still and know that I am God.”  Ps.46:10

Happy Birthday Daniel!

     Happy 17th birthday to my precious “baby boy”!  You are the youngest and made your surprise entrance into our world on Father’s Day Sunday seventeen years ago.  It’s taken seventeen years for your birthday to fall on Father’s Day again, but you are still the most cherished Father’s Day present we have.  You were born in the middle of some the worst adversity we faced as a couple. Your daddy had been downsized out of his job, he was very ill, and my mom had passed away just 10 days before your early arrival. 

     You, my precious son, were my link to sanity as I took care of your daddy. kept up with two little girls and grieved for my mother.  I probably rocked hundreds of miles in the rocking chair in the sun room as I held onto you, cuddled, kissed  and sang to you through tears.  Every moment of your childhood has been cherished, because we had been told we could not have anymore children after Rebekah was born.  Never, ever underestimate the pure power of God and His plan.

       Now, seventeen years later, you teeter on the boundary of becoming an adult man. Your dry sense of humor cracks me up every single time, and your questions and curiosity continue to amaze me.  You prefer to be a quiet, solid man of faith, but your foundation is firm and deeply rooted.  Even though these last two years of your life have been difficult, to say the least, you have never become bitter or wallowed in self-pity.  Even in illness, you inspire others though you never want any attention drawn to yourself.

     Happy Birthday to our youngest child. our unexpected blessing in life, our joy-giver and the one who always keeps us on our toes!  God has a mighty plan for you and I can’t wait to see it unfold.  Happy  Birthday to the red-headed boy we prayed for and we have been so abundantly blessed!

Directions, please

     Last week Sarah was getting ready to drive to a young adult Bible Study.  The location for the meeting was unfamiliar to her and of course, we had to give her directions.  Poor baby, she has her mother’s sense of direction…which is absolutely NONE!  Her dad  was telling her the directions aloud and using directional terms like “east” and going under the underpass.  I could see the glazed look of “I have no idea what you’re talking about”  in her eyes and the rising panic in her facial expression.  I pulled her aside and wrote down the directions exactly step by step and wrote what landmark she would see at each step….the only way I know how to do directions.  The relief on her face was so obvious.  She confidently got in her car and drove off safely to her destination.  Same place, two sets of directions given in two different ways, only one way was understood and accomplished. Daddy’s directions would have gotten her there, she just didn’t understand how to follow them. 

       This past year of my life has felt a lot like that…totally lost, searching for direction, looking for a location in the analogy of trying to find a diagnosis and proper doctor for Daniel.  I’m still whirling, twirling and spinning in trying to find answers, but have had to just wait until we find out how he does with his medication trial. So far, he has shown a little bit of improvement in staying awake during the day, but still can’t endure beyond two days before crashing again.  He hasn’t been able to attend a full week of school since before Christmas and it’s really aggravating that the medical field senses no urgency in that fact. I simply do not know where to turn to from here.  Fourteen doctors have brought us back to square one.  I feel like I’ve been on a long wild goose chase and have lost badly. In the meantime, my son is still ill, the bills keep rolling in, and the pure exhaustion from it all is almost unbearable at times. 

     I promised myself when I chose to do this blog that I would be bluntly honest, not sugar coat anything and not portray a sickening sweet Pollyanna fake attitude.  The truth is my heart absolutely breaks every time he has to stay home from school; I’m beyond frustrated with the medical field and my emotions are so fragile just looking at me wrong will bring an onset of tears.  I keep on praying, keep on working, keep on being a mom. My hope is one day we will not feel we’ve been sucked into an eternal whirlwind and we’ll have a clear direction on which way to go.  This directions-deficit mom is willing to follow God’s path no matter what the direction, but in the meantime I will worship while I wait. One day I’ll be able to look back and see how far we’ve come, but right now I’m stuck at the intersection waiting on which direction to take. My quietness is not being anti-social, I’m just pondering and praying about what to do next.  Sometimes when you’re lost, the best thing to do is just be quiet, get your bearings, and just wait until you’re calmer.  God speaks…even when you’re lost.  

 

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.

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.