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.

 

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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.”

 

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!