My Joy is Coming

     Don’t ever take for granted the simple everyday task of your child getting up to go to school.  Such an ordinary task, get up, get dressed, eat breakfast, grab your lunch, your book bag and go out the door.  Oh sure, your child might miss a day or two now and then with the typical stomach bug or cold, but usually they’re right back on track and going full steam ahead within a couple of days.  The stark reality of the reason I have not blogged in awhile is because I am heavily grieving for our son who continues to battle a chronic neurological disorder that has everyone baffled.  This October marks a full year since he has been able to attend school on a full-time basis.  He has not been able to attend a full week of school since last October.  I was oh so hopeful it would be different this school year with a neurologist who advocates for him and a new medication; but the downward spiral continues.  This nerve-wracking disorder shows no mercy; he’s either awake, alert and living a typical teenage life or he’s out for the count and sleeping for hours on end with no arousal. We’re going to have to make some solid, but difficult decisions about his education soon.  I’m trying to be strong for my family and my husband is trying to cope, but honestly, we are exhausted, spent out and in survival mode.  Then, throw in my hubby’s fall out of the bed at 2:30 am and six staples in his head later!  If I wasn’t so exhausted I’d probably be laughing my head off!

     Still, we move on, we trust and we keep going.  We appreciate every single moment of Daniel being awake and we are so grateful for the days he is able to go to school.  Every day I ask God to show me His goodness and He does.  Little things like someone letting me go in front of them in line at the grocery store are confirmations of God’s goodness.  I still cry at the drop of a hat, but there’s an underlying acceptance now of knowing this is just the way things are right now.  This trial will eventually pass and my prayer is that everyone will see, without a doubt, God’s goodness, His holiness and His healing power.  Right now, God is silent, but I’ve walked with him long enough to know He will eventually speak and will intervene in His perfect timing.            When you grieve, sometimes you just have to allow yourself to feel the pain, meet it head on and roll in it. I’m definitely rolling in it right now.  Our worldly society minimizes grieving to a few cliches and then expects everyone to return to work with a smile on their face.  In the real world of being a believer in a fallen world, it just doesn’t happen that way.  Just because I’m a believer does not mean every day will be wonderful and gushing over with joy and love for others. Yes, I acknowledge that some days are downright awful, horrible and very long, but I also have a Savior holding my right hand all the time. These are the times I have to cling to His promises and just hang on. No, this is definitely not what I imagined would be happening to our youngest child in high school.  The money I had hoped to put away for retirement is being spent on medical bills and groceries.  The luxury of going out to a restaurant is such a rarity now that it’s a huge celebration if we go out to eat….with our coupons in hand! 

     My joy is coming, plain and simple, it is coming.  It may come tomorrow or it may take years from now, but it is coming.  God is good and His goodness will prevail even when I don’t think I’ll make it another step at times.  In the meantime, I will keep looking for joyous moments and keep believing.  In this world of instant gratification, delayed gratification of coming joy is to be upheld and appreciated.  I’m hanging on with every fiber of my being because my joy is coming.

 

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Marriage in the Real World

      25 years ago this weekend, I married my sweet man and inherited his two young children.  I thought I was going into it with my eyes wide open and my heart wrapped around him, but life has a way of intervening and being, well, real.  The Brady Bunch we were not, instead it was an emotional, and life-changing learning curve for me.  Single, never married, no children and enough baggage from my past to circle the world twice; I became his wife and another mom to our children.   Twenty-five years later we are still standing hand-in-hand, a little older, a whole lot wiser, and very proud to call each other husband and wife. 

     How I love this precious man!  He tells me I’m beautiful when I look like crap, he loves when I’m in shape and when I’m not. This sweet man never, ever criticizes, uses sarcasm or even raises his voice.  He’s loved me through every hormonal moment and mood swing.  My precious man knows exactly when I NEED ice cream and when I just need to be left alone.  Our love languages are on the different ends of the spectrum, he responds to touch and I deeply appreciate any act of service no matter how small.

     It’s not a fairy tale, it’s work between two believers who want to be a legacy for their children and grandchildren.   Don’t think for one moment that we never disagree, we do.  It’s not pleasant, but it’s also handled with kindness and assurance of love for one another.  Our marriage is also dealing with all that life throws at us.  He’s the methodical, logical one, I’m the one who’s up all night praying, crying, and being emotional for the two of us. I’m also the one who laughs at all the stupid stuff that happens on a daily basis.  I’ve learned to be calmer in his approach to life and He’s learned to lighten up being around me all the time. 

     We’ve lived through and gotten to the other side of relentless life issues: the death of our parents, a job loss, a difficult pregnancy,  constant financial strains, and ongoing health issues.  We’ve lived through, “it’s your turn to change the poopy diaper”, “you get the first nap and then I’ll take one”, 1000 rewinds of Veggie Tales, homework tears, and ballet classes.  As the children got older, life and its realness never let up for a moment.  Still, we stand, we pray, we never give up…no, it’s not easy, but life is not promised to be easy.  We are promised that God will never leave us, nor forsake us and we have clung to His promise too many times to count.

       Happy Anniversary to the man I married twenty five years ago.  You are my love, my best friend, my hero and the one I’ll stand next to always both now and in eternity. This redhead loves you forever and always!

Coffee, Prayer and Post-it Notes

     5:15 rolls around way too quickly each morning, but it’s in those wee dark hours when it’s just God, me and a cup of hot coffee.  I started this ritual way back in my college days at James Madison because I’m not a night owl and just could not stay up really late if my life depended on it.  Every morning, it’s the same routine, make the coffee, take a cup to Clif still snoozing the warm bed, and then I get to curl up on the love seat, prop my feet up and savor every sip of coffee. The scenery changes every season as I gaze out the windows in our sun room, but having my Bible, my journal and pens on the end table never change.  Ask my kids, if my Bible isn’t where it’s supposed to be, I turn into a crazy woman in 2 seconds flat!

     Having a morning routine like this doesn’t mean I’m a super woman or a perfect believer, it simply means I do this to survive each day. Life is hard and I wouldn’t be able to cope at all without my coffee and prayer.  It’s not formal, wordy prayers. Sometimes I just cry in my coffee cup when life is extremely overwhelming and just won’t let up. It’s not sing-song cheery praises; it’s prayers, pleas, and praises that come straight from my heart.  Some mornings, not a single word is written in my journal, or a word spoken but it’s still a sacred, wanted time with my Savior.  Other mornings, I can’t write the words fast enough and I’m shocked when the clock says 6:15 and I’ve got to run to take a shower for work. 

      Also, on the table with my Bible and pens is a stack of post-it notes.  They’re every size and color collected from every freebie source I can lay my hands onto at craft fairs, community gatherings and teacher workshops,  I’m not sure who invented the post-it notes, but they have earned every bit of my admiration.  I use them unmercifully for love notes, honey-do lists and don’t forget lists. In college (before they were invented) I used to use small magnets to attach notes to myself on my metal rectangular shaped desk lamp.  One evening while I was in the shower, my roommates took all my notes away and hid them as a practical joke…it wasn’t funny, I almost cried when I realized how dependent I was on notes so I wouldn’t forget something. 

      In our real world life here, it’s comforting to me have an early morning routine. I’m not advocating the early time for everyone. My children would probably be physically ill if they tried to get up so early.  I do encourage you to have your own routine and make your space personal and inviting, Of course, in the real world, that might be locking the bathroom door for five minutes! God meets us anytime, anywhere and He waits with open arms. Go, child, go, spend some time in Daddy’s lap. 

 

As Good As It Gets

      Late this afternoon, we headed over to St. Mary’s Hospital for Daniel’s neurologist follow-up appointment.  The nurse who took his vitals did a double-take when she saw him because he looked so much better from the last time she saw him. He eats us out of house and home, but managed to lose a little over 2 pounds since last month!  The appointment went well overall, with us explaining we have seen strides in his health.  I still haven’t thrown caution to the wind, but I’m ready to do the happy dance!

      As we got further into our discussion about his health, the reality remains that he is still tired, still has to have a minimum of 10-12 hours of sleep every night and some days are just bad days no matter what we do.  Her comment was, ” You know, this may be as good as it gets until he outgrows this syndrome.”  And I am perfectly okay with that.

     Our society always pushes us to do better, be better, achieve more, do more and God tells us to rest.  Jesus didn’t push himself to overachieve or make a tally of how many He healed in a crowd.  He simply did what his Father told Him to do and then retreated to be with His Daddy.  

      Considering how far we have come in this medical journey, I will gladly take and keep my son at the stage he is right now.  No, he’s not completely well, but he’s able to function most of the time.  His stubborn streak is showing up, his wicked sense of humor is slipping back into conversations and his obsessive tendencies over wanting others to understand his opinion are all part of his daily life again.  Little things like this that I prayed would come back are here and driving us all crazy again; and I wouldn’t trade it for the world on a silver platter.   If this is as good as it gets, then I’d say I’m a very blessed mom.  I’ll take every moment of this versus the other side of this rare illness. 

     The struggle isn’t over yet, but I can honestly say I think we’re finally on the other side of the worst side of it.  No, this isn’t how we planned on high school being for him, and next week will be a realistic indicator of his endurance.  Dipping into the muddy waters of “why me”  or “what did we ever do to deserve this” would simply be a stupid negative move.  Instead, we choose to focus on how far he’s come, God’s glorious healing power, and relishing every returning part of his personality that was ambushed by this syndrome.  If this really is as good as it gets, then we are blessed beyond measure.

Doing What’s Right

      Our budget will have to be squeezed just a little tighter.  We got our new budget plan amounts for electricity and gas in August and both went up to a higher amount…sigh.  I have to admit that money, more than anything, sends me right over the edge.   Our bills are paid on time and quickly now with online payment, but just the mere thought of having to handle money makes my stomach churn.  We’re in that classic middle class syndrome of having enough to pay bills and get groceries, but very little, if any, leftover.

      Even with all that said, we continue to walk in faith.  Our budget plan amounts increased, but we also, on faith. have increased our monthly online tithe to our church. No, I’m not doing it for a “prosperity plan” or expecting anything to fall miraculously from heaven.  I increased our tithe because I wanted to and because it’s the right thing to do.  For many years I admit I was mediocre about committing to a tithe, but now I’m adamant about doing what is right and bringing glory to God in all we do….even our small amount we sacrifice every month.

      Going out to a restaurant is a real treat for us as well as having “fun” food or junk food in the house.  Our meals are simple, frugal, but delicious.  The other day, Sarah found a bag of “popcorn” chicken in the freezer and exclaimed, “Mom, this is rich people’s food!”  I explained that the only reason we had it was because it was on sale and I had an insanely high dollar coupon for it.  I love to cook for my family, but also acknowledge it has to be within reason.  No fancy gourmet expensive meals or buying spices that I’ll only use once; we are very careful to stay at our allotted amount for groceries.  Being frugal, but sensible with our family meals is a challenge, but again, it’s the right thing to do.  Blowing our resources at a drive-thru window or eating out several times a week would just not honor God’s faithfulness to us. 

      This summer I also updated my working wardrobe but it wasn’t from major department stores.  My “new” clothes came from local consignment shops and Goodwill. I simply can not justify almost a hundred dollars for a pair of shoes, but $5.00 is more my style.  Using our limited resources wisely is the right thing to do, and it’s a more fun to find a bargain than to spend too much money.

     God is good and He’s been so very good to us.  Watching Daniel slowly recover has been my greatest joy this summer.  He still has “tired” days, but he is able to function more now.  I know he’s getting better because his stubborn streak has returned!   All the things that used to frustrate me, are now blessings returning one by one.  

      No, we are not financially wealthy, we do not have a large home, we do not have anything extra in our lives right now, but we are blessed beyond measure.  Everything we do is measured upon Biblical standards and a desire to bring God’s glory to all we do.  We choose to do what’s right, not what we feel, not what others say.  We are trusting, breathing, putting one foot in front of the other and God will bless our efforts.

      

 

     

It’s All About Him

       Every Sunday in church I have to bring tissues because the message and the music always move me to tears.  They are not sad tears, just tears that cleanse my soul and tears that reaffirm my trust in the LORD over and over again.  I’m seriously thinking of suggesting to put a box of tissues at the end of each row!  The past two plus years of dealing with Daniel’s illness, the financial burdens and just trying to cope day to day at work have made me keenly aware of God’s Holy presence and my constant need to simply trust HIM.  I wish I could say I was the perfect believer and never doubted, but doubts have risen like curling smoke from a chimney.  You’d think by the age of 52, I would be a wise Christian example, but sometimes my own children amaze me in their child-like belief and wisdom way beyond their years.

      This journey has taught me to fight and hold onto faith, not feelings.  Combating fatigue and anxiety about paying bills ranked pretty high on the list of doubts, but somehow we have always had a meal on the table and bills are paid one by one.  No thunder or lightning, no huge winning lottery checks in the mail, no manna raining down from heaven, just God overseeing every moment and providing what was needed for the moment.  I’ve learned that God doesn’t need a ticker tape parade every time He generously provides, He just wants me to keep trusting.

      I have to clung to God’s Promises, his Word every early morning and Christian music to fill my ears and head.  Teasingly, I have told my husband the only thing I miss about work this summer is the half-hour commute filling the car with my “Jesus music”.  It’s definitely been a long haul in this journey and it’s far from over. Yet, for the first time in a very long time, I can finally look back and see how far we’ve come.  The fog is lifting and now the pieces are coming together to actually see God’s work in this path we never thought we would trod.

      Daniel finished his summer online Algebra II class and submitted all his work…literally two hours before the extended deadline.  His waiting and procrastinating made my stomach hurt, but he pulled it off at the last second and ended up getting a high B in the class.  Just so you know, this was a huge God moment, because I did NOT nag him, yell at him, remind him or berate him…I kept my mouth SHUT and just prayed he would finish the class on time.  Later, he told me he finished the class and got a B, and I reminded him the only way he finished that class was because his mama was praying for him!  How he crammed a semester’s worth of work into the last 3 days I’ll never know, but I am so grateful that God pulled him through and decided to show off at the same time.

       This summer has been a time to heal mentally, physically and spiritually.  At a recent teacher workshop I attended, as an icebreaker, they wanted you to share how much energy you had compared to the bars on your phone being charged. Several shared that they had three, four and five bars and were so ready to begin the year.  I did not voice my comparison aloud because I thought it would be interpreted as a negative comment. If I had to compare my energy level right now as compared to charged bars on a cell phone I would honestly be at a two.  Initially, that number sounds very low and despondent, but actually it’s a confirmation of God working continuously in my life.  When I left school in June, I was probably in the negative number range with absolutely nothing left in me to give, to teach or to absorb.  So, within 2 short months, God has moved me from the negative range to an acceptable range for my physical, mental and spiritual attitude.  Only God can do that and I confirm that it really is all about Him!

 

 

Words :)

        Words we hear, we say, we see have a profound effect on our daily lives.  This past week, Daniel had a follow-up appointment with his neurologist.  After hearing about his current status, asking a few pointed questions she then stated the words we have longed to hear for over two years:  “He’s getting better!”  A rush of relief flooded over me, and a cautious hope filled within me.  No, he’s not completely well and I’m still treading cautiously in these unknown waters because I’ve been devastated by the emotional cycles of his syndrome.  A doctor was smiling and constraining herself from dancing across the room and we sat there in utter disbelief from the proclamation of her words.  Three little words have brought a cautious hope, a bright light in the darkness, and a solid anchor to hold onto as an affirmation of God’s healing power.   

      All of our children are grown now, and we have a precious granddaughter that simply rocks our world.  There has never been a day our children have not heard, ” I love you.” We haven’t filled their heads with “fluff” words or negative comments, but just affirming simple words:  “I love you, I support you, I’ve got your back, You are precious.  It doesn’t take a plethora of words to communicate, just thoughtful, careful words.  Affirm, encourage and reassure with simple words…you never know when God will use your words to change someone’s world.

 

Reconnecting

     On Saturday, we got to spend a rare day as a family…all of us…together for an entire day with no interruptions, no work schedules, no distractions.  We packed a cooler with ice water, PBJ sandwiches and just took off for the day.  No scheduled hour by hour plans, just a stroll through Carytown in Richmond to meander through the shops and enjoy the break from the stifling heat wave.   It didn’t require tickets, payments or a ton of money, just time together to reconnect as a family.  Our summer schedules have been hectic with numerous doctor appointments, juggling different work schedules for the girls and keeping up with maintaining basic cleaning and laundry with all of us living together in a small 3 bedroom house.  Reconnection as a family was so desperately needed, a chance to be together and confirm we’re all in this together without any doubt. 

     Every family has their own way of reconnecting, but ours usually involves food of some kind and/or a great Goodwill bargain! Yesterday we got both…the girls found rock bottom prices on items with the original store tags still on them; and we got to purchase homemade bread at Montana Gold Bread with a 1/2 half off gift card I ordered online.  Definitely doesn’t take a huge price tag to make a Perkinson happy!  Simple things like walking together, laughing over funny sayings on plaques sitting on a store shelf and finding a bargain keep us connected. 

      I’m going to dare to use an analogy here that my girls will read and say, “whoa, mom, that’s way TMI (too much information), but I want to drive my point of the need to reconnect.  It’s almost like marital sexual intimacy.  Don’t mean to make anyone squirm,  but the sexual intimacy of the marriage bed is sacred and the ultimate in reconnecting. It’s no longer you and me against the world and all its trials, it becomes us, we, a whole, a team, becoming one to be there for each other no matter what the world may dish out at us.  This God-given gift of intimacy is an affirmation of togetherness, strength and it’s His holy approval to have fun with your spouse! Dare to reconnect with your spouse.

        Dare to deeply reconnect with your family.  Listen, hug, kiss your children even when they think they’re too old for kisses.  Tell them you love them every single day. Set boundaries and don’t let up on them.  Blow kisses to your spouse from across the room.  Send a romantic text.  Pet the dogs and give them an extra treat now and then. Go eat ice cream together.  Hold hands. Make a cake with lots of icing just because you love them.  Stand on your tiptoes to give your grown children a kiss on the forehead.

   Reconnect, reaffirm, recommit as a family. It’s a dare that you’ll win every single time.

 

The Reality

     The past few days have been very emotional for me.  What I thought and hoped was a possible breakthrough for Daniel’s health has simply turned into another medication that does not work effectively after a couple of weeks.  Daniel has dived headfirst back into a cycle of 15-20 hours of sleep each day.  Yes, we now know what causes it, and the rare disorder of Kleine Levin Syndrome has a name….but it does not have a cure or a predictable treatment plan.  The reality is that we will be dealing with this cyclic, maddening disorder for several more years before it will disappear and never return.  

     My faith is intact, solid and strong, but the reality remains that some days I still cry and grieve for the child I should have right now.  I should be teaching him to drive and picking his homegrown tomatoes.  I should be proof-reading his summer English paper and nagging him to keep his room clean.  I should be teaching him to be a fine Christian gentleman before he enters the era of dating young women.  Instead, the reality is he sleeps all night, most of the day and wakes up groggy and lethargic.  His bedroom is used only for sleep instead of studying and we haven’t had a garden nurtured by him in two summers now.  I miss him! I grieve for the huge chunks of time he has lost to this baffling neurological disorder. 

     The reality is we cherish and absolutely adore the moments he is “with” us and alert.  We never know when we’ll get these moments or how long they will last.  Several people have told me that I should remain positive because there is an eventual end to this crazy illness. Yes, it should end on its own, but we don’t know if it will be a year from now or up to twelve years from now.  Frankly, when you’re standing right smack dab in the middle of it, two to four years from now seems like an eternity.

     The harsh reality is that we have to make some very difficult decisions about his education and medical treatment.  Will he be able to keep up in the governor’s academy? Should we put him on homebound instruction? Should we try another medication? And the questions go on and on and on…and I’m tired of being strong.  I want to be able to hug him, kiss him on the forehead and send him out to play like I did so many times when he’d come toddling in with a boo-boo.  Yes, I am so ever grateful this syndrome is not fatal, but it’s still here and it won’t go away for a very long time.

     The emotional reality is that an illness of this nature affects every family member, affects a family budget, and affects every kind of family outing/event.  I deeply appreciate every moment he is able to participate in a family gathering; even if it simply eating hot dogs and mac’n’cheese for dinner with us at the table.  I’m learning to not deeply grieve every time he simply can not get out of the bed and reassure myself that, at least now, we know why he does this so frequently.

     I don’t know what the future holds, and neither does the neurologist who now treats him. I do know she is our advocate and will do anything within her power to help Daniel get better and to deal with school.  After visiting fourteen different specialists, it is a relief and a tremendous blessing to finally have someone on our side and understand that this is not his fault.  One day I will look back and know how much God has carried us through, but right now, the reality is I’m letting Him carry me through this time because I’m too weary to walk. The reassuring reality is it’s really okay to see only one set of footprints in the sand.                                  

 

 

Time with Daddy

      This morning Mama had a date in Mama’s bed with Daddy.  No, it’s not what you’re thinking! All the kids were still asleep and we enjoyed our quiet morning with coffee in bed. We chatted about our kids, the budget and events for the week.  During the summer, this is one of my greatest luxuries, to actually have time with my husband and have a conversation without constant interruptions.  You’d think it would be easier now with our children grown, but the demands are still there along with the exhaustion that slowly creeps into your precious time. Early morning works for us because neither one of us can stay up past 10 pm!

     When the children were little, Mama was fine to play with, talk with and be with…until Daddy walked into the house! At that moment, toys were quickly neglected, Mama was totally ignored and little feet swiftly pitter-pattered across the floor.  Little arms went up for hugs and kisses, big grins and giggles erupted, as Daddy would swoop down and pick them up for cuddles. “Daddy’s Home!”  Those were the two words that led them to drop everything and run to their Daddy. There in Daddy’s arms was their security, comfort, strength and love.  No words were necessary as all the children were covered in kisses and warm hugs.

      Now, as adult children, they still love their time with Daddy each in their own different way.  Daniel loves to work in the yard and hunt with his Daddy.  Rebekah can target shoot with the best of them with her Daddy and Sarah prefers to have a quiet meal or a cup of coffee with her Daddy. The foundation was set when they were very young and our children definitely honor us as their parents.

      With the last two years of medical confusion and turmoil, I have totally depended upon my “Daddy” time with my heavenly Father.  My prayers have been cried out at every hour.  Prayers of despair, desperation and discouragement have left my lips and fell softly into the ears of my Abba, Father.  He has heard every single prayer and has answered in His own way, maybe not how I wanted or imagined, but He is still answering my pleas.  Now that we finally have a name for what’s going on with Daniel, it’s a little easier to grasp.  A diagnosis has not taken away the really “tired” days, but at least now we know it’s all a part of this rare syndrome.  My prayers have shifted from desperation to more gratitude and His hope has lifted my spirits a little at a time.  When you deal with an illness for this long, you don’t just automatically shift into, “I’m fine now”.  It takes time for every family member to heal, not just the one who is sick. Now, I am so grateful that I was NOT granted a summer school teaching position, God knew exactly what He was doing.  We’ve all needed to spend some time with “Daddy”, to heal, to refresh and to be restored.

     “Daddy’s Home!”  I’m dropping everything and running to my Father for His mighty arms to wrap me in hugs and whispers of, “It’s going to be okay.”