That’s My Girl!

        Tonight we bought Sarah baby her college graduation gift…a Canon T3 camera…a “big girl” camera!  Yes, we got it for her early so she can have fun taking pictures her last few weeks at school. She really wanted it for Christmas, but after a realistic chat, we all decided it would be her graduation gift. There aren’t enough words in a thesaurus to describe her pure, uninhibited excitement!  The Cabbage Patch doll she wanted at age five doesn’t even come close to the joy she’s expressing right now as I write this post.

      Sarah is our child who always worked hard, always did her best, but never quite made it to the academic honor roll. She has always been the compassionate, kind child who always puts others before herself. Now she is an absolutely drop dead gorgeous young woman who will graduate from Longwood in May.  Her graduation will mark my 30 years from James Madison.  Yes, I do feel maybe just a little old…but so very thankful. 

      I still remember almost every detail of my college graduation…the white dress I wore underneath the robe,the strappy white sandals, my daddy’s proud grin, the absolutely gorgeous day, and literally jumping for joy after receiving that paper scroll! I have no recollection of the speaker, the speeches,,,just remember walking to get that long awaited degree! And now, 30 years later, I will watch our beautiful redhead walk to receive her hard-earned degree.

      You can bet your bottom dollar there will be tears…tears of joy, tears of gratitude, tears of relief.  Her joy, our thankfulness, her excitement, our happiness, her reward, our contentment all mingled into one ceremony that will be unforgettable.  That’s my girl…the adorable redhead with her brand new camera taking a million pictures!

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Not Backing Down

      The last few weeks in dealing with Daniel’s health, the insurance company, and stress at work have literally pushed me against a wall….and I’ve come out with both fists flinging, flailing and fighting for dear life.  Just when I really thought we beginning to turn a corner in his health, it all came crashing down with him too exhausted to get out of bed for two days in a row.  My first thought was, “oh crap, here we go again”.  Not a pretty thought,,,but I’m not sugar coating anything anymore. So, we’ve spent the last two days trying to analyze what he’s eaten, what he’s done and how did this happen. 

       In some ways, it makes me even more determined to find out what else is really going on and what do we need to do to make him better.  So, I’ll be making phone calls to the Cleveland Clinic to find out what we need to do next. We’re going to another specialist at MCV on Monday.  I’m not backing down or letting go until my son is completely well.

      We received a letter from our insurance company yesterday indicating they were reviewing our appeal and it could be up to 30 days before a decision is made. I’ve got news for them…this stubborn redhead will not back down until they pay for medical services.  I pay my hefty premiums and followed all protocol, they ought to be ashamed to deny services to a child. By the time I finish this appeal, they might even have to pay for my flight to Cleveland.

       There’s a part of me that is so tired of fighting, so exhausted from all the red tape, so frustrated from recurring circumstances, but then I see Daniel trying so hard to do everything the doctors have told him.  I see him measuring out his supplements every morning and trying to eat dairy free foods.  I see him trying so hard to keep up with homework when he feels so lousy,,,and I know I can NOT back down. This battle is not about me…it’s about him to get better.  I have to be his advocate, his behind the scenes caretaker, his chef of new foods and the one who stills tucks in his blanket around his 6 foot frame when he’s sleeping. I have to be the appointment maker, the one who intervenes on his behalf for school, the mom who buys supplies at Walmart at 9:00 pm when he needs it for a project.  I have to keep on keeping on and not back down, not even for a fleeting moment.  I may cry tears of frustration and exhaustion, I may get really mad, and I might even think “WHY?” at times…but I will never back down.

Standing Firm in Sinking Sand

      Our life has changed from buying a gallon of milk every 2 days to reading every food label before serving it to Daniel.  His dairy allergy has abruptly turned us around and placed us smack dab in the middle of a huge learning curve. Dairy free snacks are designated for him in his very own snack drawer now.  Our refrigerator has only soy milk or almond milk; and there is a basket on the counter for all his supplements.The pantry now has dairy free flours and egg replacers for me to bake homemade goodies. 

     Within 24 hours of no dairy, his speech improved and after 2 days his skin was almost completely clear. As we continue, his energy levels are still not what they should be, but the “brain fog” is lifting. His dry sense of humor is coming back and I had forgotten how much fun it is to simply laugh with him.  He’s still tired at the end of the school day, but he is staying alert for longer periods of time. 

     I am so thankful, so grateful, so glad we finally have some answers.  For the longest time, my prayers were pleading for just answers. Now we have some, and we are dealing with it one day at a time. As with anyone who faces the adversity of a sick child, stress takes it toll no matter how much we pray.  Our GOK fund (GOD only knows) has been depleted more than once by medical bills, and we are still dealing with a rejection of medical services from our insurance company.  On my snow day yesterday, I was filing bill receipts and found the county car tags for our daughter still sealed in the envelope…that were supposed to be on her car last month!  Then I found an overdue notice for a utility bill. Frantic, I called and found out that I had already paid the bill a few weeks ago. I don’t even remember paying the bill.  Sleep has been a commodity more than once during these long months.  Yes, stress has definitely taken its toll.
Standing firm while taking care of an ill child becomes a ideal you strive for, a goal to hang onto, a routine to keep your sanity. Standing firm is my daily 5:30am appointment with God every morning in my sunroom with a hot cup of coffee. Standing firm is the kiss and hug I give my husband every day. Standing firm is telling my children how much I love them. Standing firm is filling my mind and ears with Christian music every morning on my way to work. Standing firm is going to work every day and doing the very best I can while I’m there. Standing firm is cooking a meal for my family every evening and saying blessing before we eat it. Standing firm means I keep going even though stress exhausts me and makes me forgetful. Standing firm means you still come out fighting for your child when all the chips are down and every resource has been depleted. Standing firm…in sinking sand…you pull, grasp, heave and hang on…until you reach firmer ground.

Dark Before Dawn

     In the last two years with Daniel’s health issues, we have spent a majority of that time waiting.  Waiting for lab results, waiting to see if new medications will work, waiting for appointments to see yet another specialist have been part of our daily routine.  Last week’s trip to the Cleveland Clinic gave us relief and a hope for better days ahead.  All the lab results have not come in yet, but some have. Now, after two very long years, the puzzle pieces are just beginning to come together. From past medical visits, we know he has a thyroid issue, now we know he also has a Vitamin D deficiency and a severe dairy allergy. When I got the phone call at work, and was told the news, I could have kissed her feet through the phone!  Finally, we have a definite diagnosis and a treatment plan….I can’t even begin to tell you how excited and relieved I am to be able to type those words!

       From the beginning of this journey we were told that his medical issues were complex, and now I realize the actual truth of that statement.  Now, we can begin to break through the darkness of the unknown and joyfully dance into a new dawn of seeing him start to feel better.  It won’t happen instantly, and I’ve got a lot to learn about cooking without dairy  (sorry, Paula Deen, I love you but my boy can’t have butter!), but a new morning will arise from the consuming darkness that has surrounded us.

      Next week we’ll have the rest of the lab results and we will deal with it.  Somehow, just putting a name to it all makes it easier to handle. Daniel’s response to the confirmed allergy, “Well, at least now I know that I’m not going crazy!”  Makes me want to smack every professional that has said to me, “Are you sure he’s not depressed?”   The confirmation of a physical illness was worth every penny spent going to the Cleveland Clinic. I don’t have a prejudice against mental health issues, but we all knew from the very beginning it wasn’t depression. It’s just very discouraging that depression is so quickly assumed when a physical diagnosis is not evident on round one of lab work.       Now, we have a partial confirmed diagnosis, a new lifestyle ahead of us and the darkness is lifting. A brilliant, dazzling dawn of better health is breaking on the horizon before us…..praise God, Praise God, PRAISE GOD!

It’s Time to Move On

      Any seasoned teacher will tell you that sometimes a lesson just isn’t going as perfectly planned in the plan book, the kids just aren’t “getting it” and it’s getting worse by the moment. Those are the times it’s just best to move on and not dig yourself any deeper.  Years ago, when I was still a very green teacher, I would berate myself over these frustrating moments, blame myself and seriously doubt my calling to teaching special education.  Now, it’s so different, I just simply move on and realize that some days working as a Wal-mart greeter looks really appealing!

      Moving on from a situation takes a conscious choice, effort and an attitude change. The illness situation with Daniel over the past two years has consumed our family, whether we wanted it to or not. When I look back over each doctor visit, each place we searched for answers I suppose I could have done things differently. We go to doctors thinking we’ll get instant answers, a prescription and will feel better within a few days. That mindset for me has been completely shattered and I’m moving on to the reality that the medical field really doesn’t have all the answers….only God does. 

       The past few days in Cleveland, Ohio were a lot of “firsts” for me…printing airlane tickets from my laptop,walking througt strict airline security, renting a car, driving in a place I’d never been before, returning a rental car, and getting new plane tickets when we had to be re-routed.  And, by the way, little miss directionally impaired only made one wrong turn in the entire trip!  I have moved on from believing these tasks were beyond my capabillity and have become an assertive mom who moves forward and doesn’t look back.

         It’s also time for me to move on from the stress a family illness brings just from the change in routine, and the unknowns faced.  I don’t question why this happened, eventually we’ll get to the other side of it and have a life-changing testimony.  Until then, I need to rest in the fact that we, as a family, have done all we can possibly do to help restore Daniel’s health.  The would of’s. could of’s, should of’s need to be banished and replaced by trust, hope and simply being still. 

        Moving on means my attitude needs to reflect my faith.  Have I shown faith, and unwavering trust during this entire journey? I can honestly say I have not shown worry, but trickles of doubt….yes….definitely. Not happy about it, but again, I’m moving on to an attitude of trust….even when I have to say out loud, “LORD, I don’t understand, but I trust You and You alone!”

It is…time….to move on.

FInally!

      How much does a parent pay or go through to see their child well again? Rhetorical question with an obvious answer….you do whatever it takes to restore your child to health. Our latest expedition to find answers for Daniel led us to Cleveland, Ohio and we saw a specialist for chronic fatigue today.  After a 2 hour visit we left with the strong possibility of chronic fatigue syndrome, 4 pages of labwork to be completed before we return home and a treatment plan.  Yes, I said…a treatment plan…finally! 

     It is strongly suspected he may have mytochondria disease and/or food allergies. He’s also being checked for every mineral/vitamin deficiency known to man.  Mytochrondria disease is when his body does not use calorie intake properly to produce energy as it should.  When it was described to me, I wasn’t surprised, I was just glad we were finally putting a name to the physcial things going on with him.  No fancy treatment for it or for chronic fatigue syndrome…just common sense healthy eating, rest and supplements to help increase energy levels.

       No, we don’t have all the answers yet, but we will very soon.  It’s been a very long, difficult, nerve-racking journey, but I can honestly say that by summertime he should be feeling a lot better.  Not cured, but better.  Sometimes miracles come step by step, and I got to witness step one today…..AMEN!

LORD, I need you!

     Okay, I admit it, I’m done, I’m ready to throw in the towel and maybe even scream and stomp my feet for emphasis. Sweet Daniel is beyond exhaustion and can’t move out of the bed. I’ve spent the last week making medical phone calls, picking up new medications and hoping that someone would call me back with an appointment.  And….no one called me back, he had a reaction to the new medication and still couldn’t go to school today. So, I did what every other mom in the world would do. I wrapped my arms around my husband’s neck, put my head on his chest and sobbed for our child, wept tears of pure frustration and cried until I just couldn’t cry anymore. I took another sick day, got on the phone and stayed on the phone until I got an appointment with another specialist.

     If I had the money, I would whisk him off to the beach for salty air, fresh breezes, the healing ocean waves and pump him up with vitamins just so he could be a normal teenager for a few days.  It’s to the point that he doesn’t even remember what “normal” is supposed to feel like anymore. I really am trying to look for the miracles in this storm, trying to hang on God’s promises, trying to cherish every memorable moment. Most days, we make it through with praises to spare, but today is just not one of them.

     Now, we’re gathering information on homebound instruction, and getting all our ducks in a row in case I have to go on family medical leave to stay home with him.  If this is lesson in trust, then God is pulling out all the stops, because if I go on family leave then I don’t get paid. Not that I put my trust in money…hardly possible on a meager teacher salary…but we do have bills that have to be paid.

     I was somewhat hesitant to post this blog; definitely do not want to portray a poor pitiful me story.  The truth of the matter is that life is hard, very hard at times and we don’t need a “churchy” answer.  We need earnest prayer for our son and we need someone to say, “It really is going to be OK”  when I have my weepy moments. I don’t need a scripture quoted to me, I don’t need there’s a lesson to be learned here, I don’t need a story of other illnesses…..I just need to cry, allow myself to get angry and then pick up the pieces and move on. 

Lord, I  need you… I am discouraged, You are the lifter of my head

I am weary, You have promised to carry me on eagle’s wings

I am depleted, You are my provider

I am frustrated, You are the great I AM

I am weak, You are made strong in my weakness.

I am confused, You bring order from chaos

I am exhausted, You are my Abba, Father who love me.

Lord, I need you and I submit, I surrender to Your perfect plan….even when it’s hard, it’s frustrating and I don’t know what to do.