A Glimmer

     Yesterday we traveled back to University of Virginia for Daniel to see a top rated pediatric sleep specialist.  After typing every detail of our extensive family history and Daniel’s symptoms she stated she could help Daniel.. Tears of pure relief streamed down my face as she encouraged us and explained her suspected diagnosis.  We will have another extensive sleep study completed in mid May.  She is suspicious of a relatively rare sleep disorder in which the person needs a tremendous amount of sleep as compared to the norm and their body basically breaks down from sleep deprivation.  Only 2% of the population are diagnosed with this sleep disorder, but it can be treated with medication and a strict schedule. 

      I’d like to feel elated that we may be close to a diagnosis, but instead I am cautious and somewhat serious.  I’d like to let my guard down just a little, but instead I’m still stoic and careful with my emotions.  I’d like to believe we are finally coming to an end of this roller coaster journey, but I’m too scared to believe with all my heart that the answers may be at our fingertips.  I’d love to wrap my arms around Daniel’s neck and whisper, “It’s really going to be okay”, but we’ve been burned and led astray so many times it’s difficult to even know what to believe anymore. 

     Before we left on our road trip yesterday, I didn’t devote an extreme amount of time to intense prayer.  I did pray, but it was more of a letting go process, than actual praying for answers.  I have to admit that this adversity has taken its toll on Daniel, and all of us.  We’re all weary, stressed from the unknowns, and have nerves pulled as tight as stretched rubber bands. So, instead of praying for answers, I simply asked the Holy Spirit to completely intervene, because I didn’t even know what to pray for anymore. 

     So, now, we wait…once again.  I really don’t know if this is the answer we’ve hoped for all along.  I don’t know if he will get better any time soon. I don’t know how much longer Clif and I can hang on with the stress of Daniel’s illness. the bills piling up and watching our son feel so awful most of the time.  I do know that I am choosing faith, I am choosing prayer and I am choosing to keep putting one foot in front of the other.  God gives us the strength to just keep breathing and I am grateful.

Advertisements

Facing the Giants

       Another battle fought and won respectively during our meeting with the director of the Governor’s Academy of Engineering.  For now, Daniel will stay in the program, because legally they can not remove him from the program for medical reasons. Had his grades been poor last year when he started feeling awful it would have been different, but we proved without a doubt that when he feels well his school work is excellent.  If someone would have told me a year ago that basically I’d be going up against the school system that I work for I would have quivered in my cute little flats.  Not anymore, it’s another day, another battle to fight and another way to advocate for our son whose health has spiraled to the bottom of the pit.

      I casually told a friend at work this past week that I feel like God has taken my whole personality and flipped it completely upside down.  The quiet, private woman I used to be is no where to be found.  Now, I face my giants with grit, determination and blanketed in prayer. This whole journey of trying to restore Daniel’s health has been a battlefield with me right on the front lines.  No, I would not have chosen this path for the obvious transformation God is weaving into my life, but it’s there, right in my face, and I have to deal with it one battle at a time. 

       Who would have guessed I would have to take a “giant” leap of faith out of my comfort zone of taking care of my family and working as a special education teacher?  Oh…it worked so well for over twenty years.  Now that comfort has been crumpled and tossed like a bawled up piece of paper flying in the air to make a basket in the nearest trash can. There are some days it is all I can do to get up and go to work, my energy is spent and I feel like a bathtub that has been drained of all the water.   Like the weary worn soldier who has no choice in the battlefield, I move on. 

     Comfort zones bring such a false sense of security and a peace that you think will last forever.  They also falsely identify what you think you can and can’t do.  Never in a million years, did I think I could fly to Cleveland, rent a car ( for the very first time) and drive in a city totally unknown to me.  Kicking me out of a comfort zone forced me to faced the lies I had told myself and radically destroy them.  Going through two heavy rounds of health insurance denial taught me that persistence and a little nastiness has to be used even when I don’t want to resort to that type of attitude.

     My most recent giant has nothing to do with Daniel at all.  We’re currently battling with the financial aid at Longwood.  Because of medical expenses, we qualify for “hardship circumstances” ( that doesn’t even begin to describe it!).  I have hand-delivered every medical receipt and our tax papers to the financial aid office. Apparently, paper copies are no longer accepted as valid and I had to request an electronic transcript.  So, after three tries of using the web tool the office told me to use, I gave up.  It kept saying that I was ineligible to use the IRS Retrieval Tool.  When I emailed the office to explain the situation, I was told the reason the tool did not work was because we had filed our taxes as “married”. Really? You have got to be kidding me…the “tool” won’t work if you’re MARRIED?  So, ended up having to call the IRS office toll free number, pushing 20 different numbers and finally getting the electronic copies sent to Longwood.  I usually am a very patient person, but pure stupidity gets on my last nerve!

     Now, our newest giant will be another trip to University of Virginia on Monday afternoon to see if there is a possible family pattern or genetic link to Daniel’s illness.  No fear, only weariness and a glimmer of hope that we will finally get to the root cause of his illness.  At our school meeting, one of the school administrators directly asked Daniel, ” Daniel, what do you want from all of this?” His honest response, “I want to feel better.” And, I will face every giant until he does.

Small Victories

     Today, at lunchtime, “the letter” came by fax to me at school. I walked up to the office area to drop off some papers to copy and the secretary told me she had just put a fax in my box. There on the front of the cover letter were the words: ANTHEM Healthkeepers, I was almost afraid to look at the second page and braced myself emotionally before I lifted the top page.  After the usual blah-blah pleasantries was the sentence I’d been praying for: Your visit to Cleveland Clinic has been approved.  I didn’t know whether to dance in the work room or just bawl out of pure relief.  Now we don’t have to put out over $700 out of pocket and I don’t have to go any further in the appeals process.  Praise GOD!  It is not my nature to have to be “firmly assertive” and OK, just a little nasty, but for my children I will do what it takes to get the medical care they need. Refusing to back down has its delayed rewards and as my husband says, “Don’t mess with my redhead!” 

     We will be traveling back to UVA a little sooner than we thought.  A cancellation appointment on next Monday afternoon is now ours and we don’t have to wait until mid-May to see the sleep specialist.  Again, God’s Hands are so obvious and we are so grateful for His power to move mountains for us.

      I played phone tag with the Cleveland Clinic for several days last week and finally got a response today.  Daniel has followed the strict gluten free, dairy free diet (think vegan to the extreme!) for over a month and there has been NO change in his fatigue level.  So, they gave us permission to re-introduce eggs and wheat back into his diet. He’ll always have to be careful with milk products, but at least I don’t have to knock myself out trying to make gluten free bread all the time now. We’ll continue to be careful with gluten, but a slice a of “real” bread now and then is not going to radically change his health status. Again, it’s a relief for us, because buying gluten free foods is extremely expensive. Respect and sympathy go out to celiac disease sufferers and those with wheat allergies.  

     I wish I could say that every obstacle has been overcome, but it hasn’t.  We still have a very long way to go and many more battles ahead of us.  Trudging forward is the only option we have and we will eventually be able to look back and see how far God has brought us.  Until then, we treasure every victory and just keep breathing, going and praying.

These Moments

     In the past few days, I have watched our son “piddle” outside, gone shopping for tomato plants and sat on the deck with him and discussed every topic under the sun.  It is in these brief incidents that I feel I have him back with me, even if it’s only for brief moments.  When your child is ill for such a prolonged time, your whole world revolves your child, medications and doctor appointments whether you want it to or not.  Life rolls from one crisis to the next and you’ve hardly put out one fire before another one starts blazing.  No, Daniel’s illness is not terminal ( at least not that we know of at this point) and he’s not in the hospital, but it’s still an illness that profoundly affects all of us.

     I have learned to appreciate the moments that I used to take for granted.  I’m thankful when he’s awake, alert and enjoying a meal.  Seeing him outside performing ordinary tasks of cleaning up the doggie poop or surveying his garden area bring swift tears of thankfulness.  Sitting with him on the deck and “discussing” world issues just astounds me, mainly because I have a very difficult time keeping up with him!  For so long we have seen him move only from his bed to the couch and anything more than that is simply extraordinary right now. 

     The harsh reality is we are still not done yet in this bumbling, tearful journey.  He has not attended a full week of school since mid-December and last week was especially harsh for him.  Crying my way through it might release my emotions, but it doesn’t change the situation. If I had a dollar for every tear I’ve shed, I could retire right now and live very comfortably for the rest of my life.  This trial is HARD, it’s relentless, and it’s fierce with unexpected blows that come out of nowhere.

      So, we hang on and appreciate every single moment that he gets to be Daniel and not a child trying to rise above indescribable fatigue.  We never know when he’s going to have a “good” day or a “bad” day, so we stopped measuring in days and now just take it moment by moment.  Others may not understand why I cry when I see my son take out the trash, but that’s OK, I’m just relishing the sweet moment.

Back to Square One

    The gluten free bread baked in the brand new bread maker was a complete flop. It looked like a cement cinder block and had the consistency of a hockey puck.  Slicing and slathering it with “vegan” butter did not help, it still tasted nasty. I tossed it in the trash can and as it hit bottom with a loud thud, I had a good laugh! Back to square one with a new recipe and trying it again!

     On Wednesday afternoon we traveled to University of Virginia Hospital for yet another appointment for Daniel.  We saw a consultant for children in which no definite medical diagnosis has been found.  After a two visit with extensive questioning and listening, he seems to think that that the root problem for Daniel still lies somewhere in his sleep cycles. So, we were referred to one of the top sleep specialists at UVA and will probably have yet another sleep study performed. We’ve already had two 24 hour sleep studies  which were inconclusive.  I feel as though we’ve gone full circle and we’re right back at square one again, but if this will render long-awaited answers then we will pursue this route.

       As with all our children, I feel as though I am right back at square one in listening to God’s Holy voice to let them go, relinquish control and let Him take care of them.  Even though I am not the “birth-momma” to Christin and Jonathan, I love them as if they are my very own from day one.  As they finished high school and went onto college, God told me then that I needed to let them go and let Him have complete control over their lives.  It took a lot of self-restraint not to call or email them constantly, but I knew God was working His perfect plan into their young lives.  Now, they are both very successful adults and excel in so many different areas….thank you Lord!

     When Sarah was struggling academically and really did not know what path to take for college, again I sensed God’s absolute voice telling me to take my hands off of her and to allow Him to work His miracles.  I had to literally step aside and allow God to anoint her path with His favor, grace and direction. Now she will graduate from Longwood next month and she has matured into a beautiful, spiritual, obedient woman of God.  God doesn’t mess around when it comes to His miracle-making power!

      In high school, Rebekah lost her beloved choral music teacher to cancer complications.   At the funeral, she sang with the choir with her head held high and then dissolved into wracking sobs at the end of the song.  It was all I could do to not hurdle jump the church pews to get to her, grab her, hug her and comfort her.  Again, the whispers in my soul resounded, “Let her go, I’ve got this covered. I will take care of her.”   Now that precious girl holds her own firmly in her faith, her goals and her life.

      My “baby” boy will be seventeen in June, he towers over me, and can play devil’s advocate on any point I may bring up to him.  These health issues we have faced in the past two years have diminished his strength on some days to just go to the bed and the couch. His garden is bare and his daddy has had to take over most of the pigeon care-taking for him.  His grades have dropped to the bottom of the barrel. After two long years of going here, there and everywhere, we still have no solid answers for his mysterious illness.  We are back to square one and God whispered to me yesterday during my devotion time…..”Let him go.”   Tearfully, I will take my hands off of him, relinquish any control I have and prepare God’s pathway for him with prayer, trust (the kind where the rubber meets the road) and with hopeful waiting for God’s plan to unfold.  I’m not giving up, I’m only completely clearing the pathway for God to sweep in and perform His miracles as only He can.  He’s done it with all our children and now my precious baby boy who’s now a faithful young man is completely tucked into the palms of God’s Hands. Back to square one is not such a bad place to be after all.

    

I Refuse

       This morning I woke up in a funky, weepy mood and haven’t been able to shake it all day. Part of it is pure frustration, part of it is exhaustion and part of it is just plain being tired of dealing with all of this for so long.  I have so many slips of paper with phone numbers, doctor appointments, and notes to myself to not forget something that I’m sure I’ve lost a forest of trees somewhere on this planet!  Daniel continues to feel awful, and I continue to search for answers for him.

     The other day at work I was so stressed from everything in general I literally locked myself in the back hallway staff bathroom and just sobbed.  I had what we call in our family, “a come to Jesus meeting” with the devil himself.  Beating my fists against the cold, cement block wall, I wept and whispered repeatedly, ” You can’t have him, he’s mine. You take your hands OFF of him, he’s God’s child, NOT yours!”  Now I know if anyone had their ear upon the door listening they would have deemed me a crazy lady and had me committed.  But, the time had come to wrestle with the devil and tell him who’s boss…and you do what you have to do.

     I refuse to be a cookie cutter Christian with a fake smile and a scripture to spout on my lips. No, thank you, I’ll admit I’m a fragile woman who desperately needs the Lord.  I refuse to be someone who accepts “I don’t know” from numerous medical doctors.  Pursuing the root cause of his mysterious illness will be my driving force until we get a real answer. I refuse to give in to the temptation of worry. We’ve got plenty to worry about with stacks of bills and no sick days left for me, but worrying won’t pay the bills or change the situation. I will cling to God’s promises that He is forever faithful and will provide for every single need we have even before I ask.  I refuse to allow Daniel’s health issues to rain on Sarah’s parade of graduating from Longwood next month.  She has worked so hard and deserves every bit of recognition she will receive.  I will be the proudest mom there! I refuse to wallow in self-pity.  Oh, it would be so easy to fall head first into this trap, but I can NOT allow pity to creep ever so slowly into my soul.  I will keep praying, even when I don’t know what to pray for anymore. I will keep thanking everyone who has lifted us up in prayer, offered help and just gave us hugs when no words could be spoken.

       I refuse to be a wimpy mom who gives up at the first indication of adversity and weariness. I may be bleary-eyed and foggy brained, but I refuse to give up, give in or walk away.  I’m still standing even though my shield of faith is battered, dented and battle-worn. When it’s all over, you’ll hear, “Well done, good and faithful servant” whispered from heaven…and I refuse to leave it alone until I hear those whispers raining down on me. 

One Day

     At the end of the week, we got a phone call from the neurology medical team with Daniel’s results.  The lab work and the MRI were normal except for one blip in his lab work. Every single time lab work is taken, at least one result comes back elevated. No explanation, no danger zones, but just enough to tell us that something is still lurking. All the puzzle pieces to his mysterious life-altering fatigue are still floating out there and not even close to being put together yet.  I talked with the neurologist at length, expressing my ongoing frustration with the entire journey.  Finally, she bluntly asked me, “Mrs. Perkinson, what do you want from us?”     
I want son back, plain and simple. I want a medical diagnosis that is solid, firm and can be treated quickly.  I want my son to have his life back with his days filled with being outside enjoying his garden and pigeons.  I want to see him loving school and church again instead of being so tired he can only move from his bed to the couch and back again. I want our lives to not have to revolve around doctor appointments, medical tests and lab work.
Basically, I was told from some of the top-rated doctors at MCV, “We don’t know what’s wrong with your son.” I, personally, have a very difficult time accepting this answer. It completely baffles me as to why some of the supposedly best specialists in their field can not come with a solid diagnosis for Daniel. This answer would not be accepted by parents of my students if I simply told them, “I don’t know what’s wrong.” They probably would want to fire me or at least send a nasty letter to the school board.
So, we move on, surrounded and uplifted in prayer. One day, we will know the answers. One day, I’ll look back on this and see God’s Hands in every moment. One day my son will have his life back and will tell a testimony that will raise the roof in praise. One day I’ll be the mom can honestly answer, “I’m just fine.” when someone asks how I’m doing. One day is coming, one day is near, one day is what we are hoping, praying and trusting for in each moment of these days.

Good and Perfect Gifts

        This morning was a rough one trying to coax Daniel out of bed and then finally acknowledging that he just couldn’t get up today.  The traffic was more than unbearable because I left the house later than I usually do. Then, when I got to school I literally could not get into the parking because of the parents waiting in line to drop off their children. So, I parked illegally, ran into school, did my breakfast duty and then ran back out to re-park my car!  I barely made into my classroom before the children started coming into room.  There on my desk was a Tropical Smoothie white cup with the straw sitting on top…a perfect gift for such a hectic morning.  One of my fellow teachers had bought for me, just because she was thinking of me.  That Mocha Madness smoothie was a gift that was savored all morning long!

      During this stressful journey of our lives, I can choose to be bitter, negative and wallow in self-pity or I can choose to open my eyes to God’s good and perfect gifts.  Though God has chosen to be silent in my life right now, He has not forsaken me.  He still shows His Holy presence through unexpected gifts.  In the last month, which has been especially stressful, God has provided so much for us:  gift cards to restaurants given by my special education team, a grocery store gift card given by a dear neighbor and our next door neighbor even cut the grass for us because our lawn mower was being repaired.  These gifts are not coincidences, they are the Hands of God being shown through His obedient servants.

       Though God is silent during this trial, His actions point to mercy, to sufficiency, to compassion.  I could easily throw up my hands and say, “I give up” and curl up in a cocoon of self-pity…but what good would it do?  Tears still fall, frustration continues, and I’m still fighting with the insurance company ( second denial of services came in today’s mail). Exhaustion is real and it’s ugly.  Bottom line, we live in a fallen world but I refuse to let go of being resilient, being faithful and being strong.  Maybe I’m just too stubborn for my own good, but I know God WILL come through on His time, with His will and will continue to shower us with His good and perfect gifts until we get to the other side. 

Trust Me Now

      Today was supposed to have been a family day to visit our girls in Farmville and to attend a civil war re-enactment at Sailor Creek Battlefield Park.  We were scheduled to leave the house by 9:15 am meet the girls by 10:30.  I started trying to wake up Daniel at 7:00 in hopes of getting him up and going. After two hours of trying, pleading and holding back tears of frustration, I finally went on my own to meet the girls and Clif stayed home with Daniel.  This is not a lazy teenager just wanting to sleep in on Saturday morning, he physically can not move or function when he gets this tired.  No amount of conjoling will convince him to move. Emotionally, he wants to get up, but physically he simply can not move.  He describes it like having heavy weights placed on his body. The crazy part of it is there is no rhyme, reason or pattern to any of it.

      So, I drove to Farmville as a potential emotional wreck.   The hot tears were right behind my eyes threatening to stream down my face. Negative, bitter thoughts of “this is just not fair”, “my son’s life shouldn’t be this way” and even pleading with God to HEAL him..please!” stumbled through my head.  The Christian radio station was on, as usual, and song after song related to ME and the adversity we are facing now with Daniel’s continual health problems.  No lightening bolts, no tremendous thunderous voice booming from heaven, just a peace that completely surrounded me while I listened to song after song filling the car and my soul.

      As of this past week, we have now seen 12 different specialists, had every blood test known in the medical field, traveled to two different states and follow a dairy free, gluten free diet.  Still, he is exhausted beyond understanding.  We, his parents, are frustrated, broke and also exhausted…but still we trust, we hope, we pray without ceasing.  I have been through a lot of adversity in my 52 years, but seeing your child chronically ill has definitely been the most heart-wrenching of all the trials I have ever faced.  Spiritual warfare is very real and it works overtime when you’re worn, you’re stressed and you will do anything to help your child feel better.

      I keep scriptures with me everywhere….in every room of the house, in my car, in my purse.  The radio only plays Christian music to fill my mind with His word and HIs goodness. If you think I do this to be a perfect Christian…no way…I do this to keep from falling completely apart. I acknowlege that I’m very fragile right now and any negative influence could push me right over the top.  I have to keep trusting, to keep praying, to keep repeating His promises…..to keep from falling into the absolute abyss of darkness. I wish I could say it was easy and that I praise the Lord all the time even in the midst of this trial…but I can’t. Maybe I’m not the mature Christian I should be after all, or maybe I’m just a REAL believer fighting the fight of her life and not giving in or giving up.  Yes, it is so hard at times, it is draining, it is consuming and it’s just plain awful…but this mom is not ever going to wave a white flag of surrender.  Two very long years and 12 specialists later, I am still trusting, still praying, still fighting until I get my son back again. God is whispering, “Trust Me Now” and I am walking by faith, not by sight.