To Resign

Dictionary.com defines the word “resign” in this way — “To give up an office or position, often formally; to submit, yield; relinquish.”

I resigned from my special education teaching position this week.  It was ten years ago this summer that I was working hard to transfer my teaching license from Ohio to Pennsylvania and driving all over the confusing roads of greater Pittsburgh to apply at schools.  After working for 8 years in special education classrooms, I formally quit my job this week, thought I know I “yielded and relinquished” that position two years ago when Myka was born.  It’s the submitting part that I think I’m still working through…

Without a doubt, God has led me to stay home to care for Myka and her ongoing health needs during this season of life.  Alivia will start Kindergarten in the fall (at the elementary school I taught at!), and I am confident that she is ready for this next phase of her life.  Myka needs her mama to advocate for her, provide continuity in her care and just love on her after the many crises she’s encountered.  THIS is my new role, and I’m submitting to that.  To many women it probably sounds like an easy decision to choose to stay home, but for those who know how difficult it is to land a contracted teaching position, maintain a classroom and work through a graduate program and have the benefits and retirement offered through a public school system….it’s a lot to walk away from.  The final decision of walking into the administration building and handing over my letter of resignation did not come without bittersweet emotions, and I will most definitely cry when I go to my classroom and pack a decade’s worth of teaching materials into boxes.

It was in first grade that I knew I wanted to be a teacher.  I adored my first grade teacher, Mrs. Tadsen.  My mind never changed about what I wanted to be “when I grew up,” though God placed a desire inside of me to work with children with special needs as I started college.  My plans and expectations for my life worked out well for quite a while — I went to college, got married, got a teaching position a year later and started a family.  It was in that first year of marriage that my husband had the nerve to say OUT LOUD – “We’ve had it pretty easy in our life and things have gone pretty well.  I have a feeling that there are trials heading our way.”  (Thanks again for verbalizing that, babe.)  It was months later that his dad was diagnosed with advanced pancreatic cancer and just a few months later, he was gone.  A year later, my husband’s best friend died from cancer.  Two months after that, my uncle also died from cancer.  The moral of the story is not to keep your lips zipped about whether or not life is going well, it’s to expect the trials to come.  If you’re not in one, there’s one coming.  That’s life in a broken world.

For years I resisted those trials, fought them and only waited for resolution to come.  It’s what we all want – resolution from the problems in our lives.  That’s normal!  Plans and expectations have changed on a far too frequent basis for me these past few years.  It’s not that I don’t want some “normalcy” in my life, but I am learning to submit to the ebb and flow of life, knowing that God is orchestrating it all ultimately for His glory, not my comfort.  I didn’t want to have a child with special needs, I didn’t want to quit my job, and I don’t want life to continue to be this exhausting.

So, I resign.

I don’t give up, I don’t quit, and I don’t stop caring.

I relinquish my ongoing desire for control, comfort, and ease.  I yield.  I submit.

Not to the whims of the world or the hope that “things will just work out.”

But daily, I continue to hold up my plans with open hands to the Lord, whose plans are better than mine even when I don’t understand them in the slightest.  My prayer is that my resignation would be full of purpose, producing in me steadfastness and giving me opportunities to love and serve my family, church and community with the compassion of Christ.  It’s a new season, a new role and new outlook.  Rather than being disappointed in what I’ve given up, I will look ahead with determination not resignation.

James chapter 5 says this —

Be patient, therefore, brothers until the coming of the Lord. See how the farmer waits for the precious fruit of the earth, being patient about it, until it receives the early and the late rains. You also, be patient. Establish your hearts, for the coming of the Lord is at hand. Do not grumble against one another, brothers, so that you may not be judged; behold, the Judge is standing at the door. 10 As an example of suffering and patience, brothers, take the prophets who spoke in the name of the Lord. 11 Behold, we consider those blessed who remained steadfast. You have heard of the steadfastness of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful.”

You probably didn’t quit your job this week and hopefully aren’t enduring ongoing medical struggles…but there are areas of your life from which you need to resign. You need to yield, relinquish and submit something in your life in order to gain fresh perspective on what God might have for you…in your marriage, your parenting, your relationships…

Proverbs 16:3 – “Commit your work to the Lord, and your plans will be established.”

Would you encourage my heart by sharing with me if you are challenged to resign something in your life?  Resigning doesn’t mean quitting but trusting that the plans of the Lord are far better than your own.

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Heart Wide Open

Searching for control and attempting to control are things that come quite naturally to most people, especially to us women.  Fitting my life and its tasks into a box or (even better) onto a list that I can check off with neat little marks somehow gives me fulfillment.  And there’s the rub.  Far too much satisfaction comes from having situations turn out the way that I want them to resolve, showing my struggle to control my life.

Many people have said that getting married is a guaranteed way to show one’s selfishness, as you learn to live with someone else in a way that follows a vow to love and cherish selflessly.  True, it’s an adjustment – one that is an ongoing work in a marriage that desires to love well.  A whole new level of selflessness is needed to raise children – a tiny person needs you all the time no matter how you’re feeling or what you’d rather be doing.  I recall nights in the weeks after I had my first baby in which we honestly wondered what we had done!  We felt like we would never sleep again or have any type of “life” again.  (And PAUSE – one of my children is crying and the other one is acting as if she has never before been fed.)

In my pride, I never thought of myself as a selfish person but aren’t we all selfish in our own ways?  Add in a husband, a child and then a baby with special needs…and I’ve found myself looking into a mirror of self-reflection showing self-absorption more times than I’d like to recall.

On a quest to be much more like Christ and far less like my own selfish flesh, I’ve been led back to the topic of “surrender.”  Over the past couple of months I’ve been challenged as I’ve been reading through A.W. Tozer’s “The Root of the Righteous.”  In his chapter called “Narrow Mansions,” he says this, “The widest thing in the universe is not space; is the potential capacity of the human heart.  Being made in the image of God, it is capable of almost unlimited extension in all directions.  And one of the world’s worst tragedies is that we allow our hearts to shrink until there is room in them for little besides ourselves.”

Yikes.

In what ways do I allow my heart to shrink by focusing on myself, my desires, the way I think life should unfold?  And then there is this battle of surrender — surrender seems like giving up, no longer caring, or throwing in the towel.  It seems like surrender would make my world smaller, more confining and leave me with next to no control – often a fear we face.  The truth of surrender?  It IS me giving up control but not ceasing to care.  Rather, it’s relinquishing MY control to the ONE who already has it figured out – emptying my wants and replacing them with His peace.   A pretty good deal when you stop and think about it.

Tozer goes on to say this: “Only God can work in the heart.  The Architect and Builder of the soul alone can build it anew after the cyclone of sin has gone over it and left only one small room standing.  If we surrender our hearts to God we may expect a wondrous enlargement.”   In 2 Corinthians 6, the apostle Paul is writing to the Corinthians and speaks of having his heart wide open, asking them to widen their hearts as well.   God, grip my heart – open it WIDE to know more of You and less of me.  Let me experience Your joy even when it means less of my happiness.  What areas do you find yourself holding so tightly that there is no room for the unexpected ways that God might ask you to empty yourself for others — or for Him?

Maybe the whole idea of surrender is totally foreign or crazy to you!  How, by giving up control, do I gain anything?  Surrender is not restriction or less freedom; it is vast abundance and true joy.  Gaining this peace comes only from giving your life to Christ.  Matthew 16:25-26 – “Then Jesus told his disciples, ‘If anyone would come after me, let him DENY himself and take up his cross and follow me.  For whoever would save his life will lose it, but whoever loses his life for my sake will find it. For what will it profit a man if he gains the whole world and forfeits his soul?'”  Surrender is a repetitive ACTION – it’s giving up my control over and over again with each situation, each day and often moment by moment.

Even on days when my world has been spinning, turned upside down and inside out…when I haven’t held it all together or always had the right responses…I have KNOWN and experienced abundance and joy that I couldn’t possibly conjure up myself.  It IS the peace that comes from surrendering what I would naturally want; trusting that God’s plans are ultimately for my eternal abundance instead of my short term comfort.

Not sure where you find yourself today or what you’re struggling to accept that seems completely against what you would ever choose to experience.   Can I tell you that this life is just a temporary place in which we find ourselves residing?  It’s just for a little while.  You don’t have control no matter how hard you try or work to check off all the boxes.  Instead of fighting that day after day, GIVE IT to God with open hands.   Ask Him to leave your heart wide open.

Set My Heart

Jeremiah 17:9 – “The heart is deceitful above all things, and desperately sick; who can understand it?”

There is no greater realization that my heart is easily swayed than when I am walking through times of intense trial.   These past couple of months have magnified my own doubts and fears in ways I haven’t seen before.  While we have clung to the truth of God’s Word and the eternal hope of heaven that we have through Jesus, I wouldn’t be honest if I didn’t admit that the days have been harder than I thought I could bear at times.  More than once I’ve cried out, “How long, Lord, how long?  Why, God?  Aren’t you hearing us?!”

Questions like these flood my mind and threaten to overwhelm me and sweep me away into a torrent of depression and despair.  These feelings have reminded me that so often in our world “faith” is viewed as a crutch or a positive addition to one’s life, when in fact God intended our faith to be far more.  “Hold fast to the hope set before us…We have this as a sure and steadfast ANCHOR for the soul!” (Hebrews 6:18-19)  My anchor is Jesus…holding my heart steady when my emotions tempt me to quit.  Faith isn’t a last resort or something that makes us feel better about trying situations.  Trusting Christ doesn’t guarantee an easy life, less pain or fewer heartaches.  It does, however, give HOPE that does not disappoint.  A day WILL come when God will establish a new heaven and a new earth; an earth in which there will no longer be diseases like MMA or trials that seem to never end.  And I’ve never longed more for that day than I have in these past weeks…

Seeing Myka endure what she has in just two years of life, especially during the previous seven weeks, has nearly broken me into pieces.  I’ve cried in a heap on a hospital bathroom floor more than once and driven home blinking through tears dozens of nights.  My faith in Christ does not lessen the pain that I feel as a human nor make walking through the trial easier…but I’ve seen His faithfulness in a new way.  During this hospital stay I have not seen His faithfulness in quick healing or speedy recovery for my daughter, but I have seen Him give healing and recovery to my heart time and time again, day after day and hour by hour.  He has breathed into my heart truth and life and hope through His Word, through the leadership and love of my husband, through songs and through dear family and friends who are holding us up in prayer, support, generosity and love.

Indeed my heart is deceitful and quick to believe lies and deception, and as I read that verse in Jeremiah I went back a bit further to see that there are always two choices in our response to the situations that come across our paths.  Jeremiah 17:5-6 says, “Cursed is the man who trusts in man and makes flesh his strength, whose heart turns away from the Lord.  He is like a shrub in the desert, and shall not see any good come.  He shall dwell in parched places of the wilderness, in an uninhabited salt land.”  The next two verses (Jer. 17:7-8) say, “Blessed is the man who trusts in the Lord, whose trust IS the Lord.  He is like a tree planted by water, that sends out its roots by the stream, and does not fear when heat comes, for its leaves remain green, and is not anxious in the year of drought, for it does not cease to bear fruit.”  I’ve chosen both of these options in the past months…I’ve placed too much trust in man and found myself desperate and feeling alone.  But, by His grace, I’ve also chosen to trust the Lord who is in control and has a better plan than mine.

Trusting hasn’t meant that the setbacks have hurt less or caused fewer tears.  Trusting has meant remembering that the hurt has purpose and the tears are held in the hands of One who loves me deeply.  Somehow He IS working this together for good, shaping me slowly into the woman He desires for me to be.  I may never see just how this trial is being used but one day He will show me the intricate details being woven together right now in the midst of the pain.

Driving to and from the hospital I often spend time listening to music.  Most of the time I choose worship music to focus on all that is right with God instead of all that I feel is wrong in my life.  (And other days I listen to Michael Buble and sing like a fool!)  One song that I have gone back to repeatedly is this one from VCB called “Set My Heart.”  The lines that stick out to me say, “Let your word be louder than my fears; Let your joy be greater than my grief.”  My desire is that the Word would be louder than my fears of the future and the JOY of knowing Jesus would be greater than the grief I have known or may experience in days to come.  My trial might seem “bigger” than one you’re facing but your trials hurt and make you question things.  What are you experiencing that you need to surrender to His plans?   How can his Word be louder than your fears?  His joy greater than your grief?

” Nothing will ever break me, ever slay me, all my hope in You.  Nothing will ever shake me, overtake me, all my hope in You.”

 

 

Fighting on…

While the words won’t come for me to type, the words themselves bounce around my head like so many fireflies on a summer night.  Blinking on and off, flying this way and that, as I struggle to catch just one of them!  Making sense of my thoughts during this trial seems like an impossible task.

Right now I’m staring at my sweet little Myka who is sedated and intubated, yet ALIVE with a NEW liver functioning inside her little body.  It’s mind-blowing when I really think about it.  Though she is just a few feet away from me, my heart is broken at how much I miss that toddler and her crazy antics.  Almost two weeks have passed since I held her, looked into her eyes or heard yelling “Mama.”  With all of my selfish flesh I just want to know that she’s IN there and doesn’t think we’ve abandoned her.  Rest is best for her right now as her body continues to fight through complication after complication.  Fighting…the word seems fitting for this season.

What haven’t I fought with in the past two weeks?  Fear, doubt, disappointment, anxiety, sadness, impatience, guilt, frustration, anger, worry, and even sleep — they’ve all been part of the inner battle.  While medically I know every reason why we chose to proceed with transplant for Myka (who was a ticking time bomb for a metabolic crisis) I have wished many times to go back and undo all of this to have my little girl running around again, seemingly “healthy” and happy.  My emotions have spilled over and over again until I think I’m cried dry.  I miss my baby, I miss my 5 year old who I hardly see right now, I miss our “ordinary” days…

This morning, as doctors came in and out of Myka’s room, I read Deuteronomy 20:3-4 where the Israelites were being taught how to face the war.  “…Let not your heart faint.  Do not fear or panic or be in dread of them, for the Lord your God is He who goes with you to fight for you against your enemies, to give you the victory.”  While this specifically was directed to men going into war, it is the same God who fights for Myka and fights for me.  The problem I’m facing is that I have to LET HIM.  I have to LET my heart take courage, LET peace rule in my heart and LET my heart not be faint.  Letting all of that happen is hard, because I want to take control and get things to go how I want them to and when I want them to…watching my child suffer is almost more than I can bear, but even now, I must choose to LET Him rule.  It certainly has not unfolded how I had hoped, but it didn’t surprise Him.

And in the end He still wins.  Sweet victory.

A day is coming when there will be no more disease, no more pain, sickness or suffering.

Resisting the suffering is only natural and is my first reaction.  It HURTS.  It is not fun.  Can we please just fast forward to better days?  We are crying out, “How long, O Lord?” Please just tell me there are better days ahead!  But even if there aren’t, I have to choose to LET Him fight for me.  The brokenness makes me want to run away and hide until brighter days come.  Yet I choose to trust Him now, worship Him now.  His plans are still better than mine, though I don’t see it in the midst of the storm.   As Ann Voskamp writes, “Never be afraid of broken things, because Christ is redeeming everything.”

He IS fighting the battle that I can’t see, and one day, oh glorious day, my Jesus will come to restore all things.

 

Gifts of grace…

December has arrived, although I’m still trying to figure out where the past two months have gone.  The Christmas season is here!  We love this time of year and have already started to take evening car rides to look at lights and drink hot chocolate.  In the midst of all of the holiday excitement, we have had not one, but two, false alarms for Myka’s transplant in just the past three weeks.  Unfortunately, due to Myka having a lingering runny nose, cough and congestion, we have had to decline both times.

Moments of selfishness have snuck in to my life frequently as of late when, instead of being at church or having fun at a wedding, I was at home running tube feeds and taking Myka for a chest x-ray…..or when we had to continually remind the couple whose wedding my husband was officiating that we could literally disappear at any given moment if “the call” came…. and even when I’ve bought Myka’s Christmas gifts, not knowing if we’ll be home on Christmas Day at all.   I start to feel sorry for myself, for our situation, for how this all affects our five year old, Alivia, and of course, for sweet Myka who is completely oblivious to the whole situation with no concept of what lies on the horizon.

After a few days of feeling rather down, God once again reminded me of His grace, His love and His timing.  Just 48 hours after that chest X-ray, we got “the call” but had to pass because of Myka’s illness.  A couple of hours later as I was talking on the phone to a dear friend and found myself finally letting some emotions from the week, she gently reminded me that Jesus himself wept, pleaded with God for His circumstances to change — Jesus, who was all-knowing, God’s own son, and knew that ultimately the plan of His Father was better than the one He wanted to write.   She reminded me that it was ok to feel everything I was feeling rather than stuffing those feelings or putting on a false “calm.”  But the turmoil Jesus experienced didn’t end with the frustration or despair….He continued, through great stress and pain, to say in Matthew 26, “‘My soul is very sorrowful, even to death….My Father, if it be possible, let this cup pass from me; nevertheless, not as I will, but as YOU will.”  Oh that my wandering heart and mind would feel every feeling but through it find my way back to the TRUTH — that the plans of the Lord are more important and far better than mine.

And then a gift of grace.

Through an interesting conversation with another mom at preschool pick-up yesterday, she informed me that perhaps she might know who received the liver that we had to decline.  After reading about the family who flew up to Pittsburgh and then contacting that family, we found out that it was indeed that little girl who got the liver we couldn’t have….how incredible is that?!  I KNOW that each time we’ve had a false alarm, that some other child’s miracle has happened and that, for some reason, it wasn’t the right liver at the right time for Myka Joy.  How often have I missed the gift of grace by being disappointed when my prayers are answered with a “no” or “wait” instead of what I thought should happen?  What if we looked for His reasons rather than being consumed by our reasons?

Just how would my perspective change if I chose brokenness – being poured out, giving grace and choosing love — rather than expecting any type of wholeness or happiness apart from the lasting joy that is only found in the hope of Christ?   Dare I ask, how would your life change or our world change with this focus?

I sit here and take a deep breath — somehow refreshed by just processing these thoughts —  reminded again there is grace in the days we are given, within the air that fills our lungs and in more hidden places than I could imagine because I fail to look when my eyes are on myself…

So we wait.  In the waiting are answered prayers and grace for each minute.

 

 

 

 

Transplant Trekking…

Like most things in life, it has been a process to get to where we are right now with Myka’s impending liver transplant.  While the details of this “transplant trek” may not be super interesting to many of you, I’ve decided to dedicate this post to just that — the process that has led us to this point so that I not only remember these details in years to come but also to help others who may be considering this option or find themselves in a similar situation in the future…or find themselves currently in a less than ideal or less than desired circumstance of any sort!

The potential of Myka needing a liver transplant was brought to our attention on Night 1 in the NICU — within hours of us learning of her likely diagnosis and while she was still fighting for her life through dialysis.  It was NOT what I wanted to hear; it added to the overwhelmed state I was already in; and it seemed foreign, unknown and made zero sense to me…just being honest.  In the months to come, Myka’s geneticist always (always) brought it up in passing at each of her appointments.  My feelings then were of sadness and frustration — we were finally enjoying time with our baby, not seeming to be drowning anymore.  This was an option for the future — why couldn’t the doctor leave well enough alone and let us be happy for one minute?!   My feelings now are often still of sadness and fear, but I look back with such gratitude that our doctor was honest with us from the get-go.  The possibility of a liver transplant has not caught us by surprise in the last six months but has been blinking on the radar from those first days.  As much as I hated it then, I’m thankful for it now.  It’s been part of the process — accepting and understanding that even on the “good” days there is something dangerously wrong within Myka’s body that we can’t ignore and that won’t “behave” itself forever.

Last spring we really began to look more seriously into the option of a liver transplant for Myka to hopefully reduce the effects of her MMA long term (or until there is a cure, for which we pray)!   A week after Myka’s hospital stay in June to fight a nasty staph infection from her port, we had several days full of pre-transplant evaluation appointments at Children’s Hospital of Pittsburgh to speak with the transplant surgeons and liver doctors, psychologists, social workers, financial advisers, transplant nurse educators, as well as lots of lab work, an EKG, echocardiogram, X-rays, ultrasounds, ETC….you get the idea!   Two weeks after that, on our way to a short vacation at the lake in Michigan, we got the call that Myka was approved and officially listed on the UNOS list for liver transplant as of the beginning of July.  I’m not going to lie – we exhaled deeply as we left for vacation after a very rough couple of months, only to get that phone call an hour into our trip.  (Last year on the way to the lake, we got a call that my husband’s grandfather had passed away…so next year on the way to the lake, please don’t call us!  🙂  I’m only sort of kidding.)  Moments like the one when we got that call can suck the life right out of me, when sometimes it feels like we just can’t catch a break.  Very quickly I can become jealous and bitter if I think about how great everyone else seems to have it, even though this is far from true and even farther from the Truth.

For several months we thought that we would be pursuing a living-donor option, in which my husband would donate a portion of his liver to Myka.  We started to plan a trip to the National Institute of Health in Bethesda, Maryland, to meet with Dr. Charles Venditti, the Senior Investigator of the Medical Genomics and Metabolic Genetics Branch.  (In other words, he’s a hero and innovator in the field of research of MMA!)  Our trip was scheduled for July of 2016, and one week before our trip it was cancelled for several organizational reasons.  However, we arranged a phone conference, and I was blessed to be able to speak with Dr. Venditti for almost an hour regarding Myka’s history, current health and possible transplant.  After that conversation, as well as conversations during the days of pre-transplant evaluation appointments and much prayer, we decided to no longer pursue the living-donor option, as Richie and I are both recessive carriers of the ineffective gene.  While our livers work fine, and we would still seek a living-donor option if it was our only option, we have instead chosen to wait on the UNOS list for a donor organ.  Myka was bumped up to status 1B in the middle of September, so we continue to wait for the right liver at the right time — for which we pray each day at 1:30 (her birthday is 1/30) — please join us in prayer!

As I wrote about in my last blog post, we’ve had one false alarm call so far as we wait for the right match for our baby.  I chose to write through our “transplant trek” today not to bore you, not just to chronicle this journey, but to relate to you.  While our current situation is a tad bit more out of the ordinary than some, it’s really quite similar to many life adventures that you are experiencing.  My emotions have included sadness, frustration, excitement, fear, anxiety, disappointment and even anger.  In my flesh, I have wondered why this path has been the one chosen for our family, why it couldn’t be a little easier for my sake.  And there’s what it all boils down to.  When I let myself focus on what I want, what would be easier for me, how I think things should go…that’s when I’m faced with a decision that not only holds the capability to alter my attitude but possesses the power to transform the trajectory of the trekking…

And so I must trek back to TRUTH…

Romans 12:2 says this, “Do not be conformed to this world but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.”

2 Corinthians 4:16-18, “So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light and momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal.”

This isn’t easy or fun.  In fact, I dislike it…a lot.  And that is OK.  I don’t have to like the circumstances that I’m faced with, but I do have to consciously choose how to navigate through them.  Would you pray for me as I walk the journey that lies ahead?  I’m not going to do it all well or respond the way I should every time — my flesh is weak…but I desire to walk into this battle holding firmly to TRUTH — relying on the power of God and His Word instead of my emotions.

So that’s the LONG and short of it!  If you made it this far — you are a true friend (or family member)!  Thank you for caring for us!!

 

 

On the inside…

Some comments I often hear about my daughter, Myka, include:

“She looks so healthy.”

“You would never know anything is wrong with her.”

“It’s hard to believe that she needs a transplant.”

Yep, yep and yep again…. It’s true.  She looks totally “normal” and appears to be fine on the outside — she walks and jabbers, she eats (mainly carbs and sugar, but who wouldn’t love that?!), she plays, she cries, and she has the most wonderful belly laugh I’ve ever heard.  In every aspect of the word “typical” she appears to fit into the definition.

Honestly, her development has shocked me day after day.  In the NICU we were told that there was likely brain damage from the high ammonia levels she had endured, but in miraculous Myka fashion there was none.   Being a special education teacher, I might be slightly more aware (jumpy, hyper) about developmental milestones that my children reach, and I am still in awe of where Myka is today.  She shows some mild delays in a few areas, but overall she is a happy, fun toddler who gets into absolutely EVERYthing.

But — as I’ve described in previous posts, Myka has a rare genetic disease, a metabolic condition that has led us to today — listed at Status 1B for a liver transplant.  So, something about this kid is different and broken on the onside.  For those of you have been following our journey, we did have our first “false alarm” transplant phone call last Monday.  We were told that the surgeons thought they had a match for Myka, so my husband packed up at work to come home, I packed up a few things (at least I think that’s what I did), and we prepared to go — meanwhile Myka sat in her high chair and threw Cheerios at me.  As my husband pulled into the driveway, the hospital called back and said that the surgeon had changed his mind — the donor liver wasn’t the best match for our girl.  Here’s a prime example of what this post is about — on the outside I mainly looked like a functioning human being, but on the inside my heart was racing, my brain turned into mush, and I was overwhelmed.

Myka appears to be fine on the outside, but on the inside she. just. isn’t.   We can’t help but realize that this is an absolutely perfect illustration of each and every one of us.  I can put on a good game, wear a smile and say that “I’m fine” to every person I meet, but inside I might be suffering, battling, hurting… And aside from the masks that we often wear (what are we really afraid of??) — there’s a much deeper issue that we’re hiding.   We look at others’ lives as if they must be rosy — for whatever reasons it is that we are envying — but do we know that person’s reality?   What are you good at masking?   And, can I ask, why??  Maybe it’s hiding behind a fake smile, a cheerful voice, a fancy car, a house, a vacation (don’t get me wrong, there’s nothing wrong with those things!) — we all seem to have the masks we like to wear the most.

The deeper issue of brokenness is a lot like Myka’s condition — on the outside we can seem whole, but inside we are all born into spiritual poverty.  Emptiness.  Hopelessness.  Missing something.

While Myka needs a physical organ transplant, there’s a heart change that we all need.  It’s not a feeling, a positive thought, a good vibe, or any type of facade or escape.  It’s real and lasting hope.  And HIS NAME is JESUS.

The book of Romans, chapter 5 says this in verses 3-8:  “We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. For while we were still weak, at the right time Christ died for the ungodly. For one will scarcely die for a righteous person – though perhaps for a good person one would dare even to die – but GOD shows His love for us in that while we were still sinners, Christ died for us.”

THAT is HOPE.   By trusting in Jesus — confessing to Him that we have sinned, believing that He died and rose again, and claiming Him as Lord – we gain eternal life and lasting peace and hope.  No longer broken but redeemed.  Alive.  No longer broken but made whole.

As we “prepare” for Myka’s transplant which could happen any moment, I have been thinking of this verse in 2 Corinthians 5:17 – “Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!”  While we await for Myka’s old liver to be gone and a new one to come alive inside of her, I can’t think of a better picture of the gospel — when we trust Jesus, we are new on the inside.   By His power and for His glory, day by day, we learn to love as He would love, serve as He would serve, trust in His plans and step by step, we are transformed from the inside out.

I believe these things to be ultimate truth and desire to live my life in a way that aligns with this….but let me be clear that this doesn’t mean I don’t have emotions.  God gave us our emotions, and they’re good — but we aren’t meant to live life according to how we just feel on the inside.  There are plenty of tears, struggles, fears and worry that come with our situation right now — ones that I wish were very different.  I don’t enjoy thinking every night when I rock Myka, “I wonder if we will be rocking tomorrow night.  Maybe tomorrow will be the day.  How long will we be away from home?  What if things don’t go smoothly?  Are we making the right decision for our baby?”  Very quickly those emotions can take hold of me and disturb all of the things that I know to be true and real — they can put me on a roller coaster that doesn’t involve peace or trust.  I’ve ridden it enough times to know that feeling the emotions is ok – it’s natural – but I must not let them control me.  On the inside, I CAN experience PEACE and JOY even on the roller coaster that we are riding.

We are so quick to believe what we see on the outside when the inside may be telling a story that is polar opposite to the appearance.  My sweet baby may have a lot to learn in her lifetime, but this mama is sure learning more from her than I could have ever dreamed.   I wonder how I appear on the outside?  Some say I seem to be handling things well or am even (dare I say it?!) — calm (HA!) — but only God knows where my heart is.  It’s a moment by moment deep breath of choosing to trust.  How do you appear on the outside?  What might you be hiding behind or hiding from?

And, most importantly, dear friend — what do you see when you examine what is on the inside?

 

Psalm 139:23-24 –“Search me, O God, and know my heart!  Try me and know my thoughts!  And see if there is any grievous way in me, and lead me in the way everlasting.”

 

 

 

Decisions

The five year old who lives in my house often is faced with seemingly “huge” decisions – “What should I wear today?”  “What kind of sandwich will I choose for lunch?”  “Which story would be best for Mommy and Daddy to read to me before bed?” In all sense of reality in the mind of a five year old, these are very serious decisions (hence, they take FOREVER to make)!  Then come more decisions as a teenager and young adult and a working professional.  In defense of all educators, I think I made approximately 1,000 decisions every day in my classroom.

Some decisions are easy and light and others weigh you down like a ton of boulders, often not even resting on your shoulders but crashing down over a cliff threatening to bury you.  And that, that’s the type of decision we’ve been making…

As described in my last post, our youngest baby girl, Myka Joy, was born and quickly diagnosed with a rare genetic disease.  One of those first nights, in a room where we found ourselves pleading for our daughter’s life, one of the genetic doctors mentioned the words.  The words that seemed crazy at the time and are reality now.  Liver transplant.  They made my head spin but weren’t the greatest concern in those moments.  In the months to come, the doctor would continue to talk about the possibility, and I found myself always in tears on the drive home.  Finally, our little girl was doing better, growing, and we were wrapping our minds around our new “normal.”  The last thing I wanted to consider was a life threatening, life altering surgery.

Sometimes God takes us through what we don’t want to make us into who He wants us to be.  

And that’s what He’s been doing with me.  Since that night when we rejoiced that Myka survived, He’s been slowly, ever so graciously giving me time, showing me that a liver transplant is our best decision for our little girl.  We’ve been blessed to speak with the world’s leading researcher for MMA, and he is in agreement that transplant is a good option for Myka given the severity of the onset of the disease.  Her MMA has been managed well, but it’s not going to stay this way forever.  Growth happens in spurts — sometimes it’s plain to see and sometimes it’s happening without visible observation.  Myka’s growth is slowing down, which means the chances of complications from her disease will be more likely.   A new liver will not cure Myka.  It will hopefully decrease the long term complications of her disease, preserve her kidneys for a greater length of time, and give her a better quality of life.  And it will add a whole new set of post-transplant complications and medications.  It’s risky, it’s scary, it’s not what I would choose to be choosing for my child.

But in it, I’ve seen God’s heart in ways I couldn’t have imagined.  The mystery of God’s heart is not lost on my finite mind through this decision.  As He watches me struggle, make poor choices, grow quickly and then slow down… His heart must ache the way mine does for Myka.  As He allows these trials to come into my life, He sees the bigger picture and doesn’t allow the pain for my short term comfort but for my long term quality of life.  His quality of life is this: for me to know Him, to trust Him, to walk with Him, to share Him.

We are choosing to put our baby through a tremendous amount of pain.  Tears roll down my cheeks (again) as I think about it.   So much emotion in this one decision – fear; grief for a family we don’t know but pray for who will experience loss; deep, fierce love; and most of all hope.

Hope that this will help Myka during her life on this earth.

Hope that this season of transplant will teach me more about Jesus than I ever knew before.

Hope that God loves my baby girl more than I ever could and is writing a better story for her life than the best one I could dream up.

Hope that He will renew our strength day by day and prove Himself to be faithful yet again.

HOPE that this world with all of its ugly, dark, fallen disease is not our home.

HOPE that I’ve made a bigger decision that this before – I chose to trust Jesus and was brought out of darkness into light.

HOPE that this huge decision isn’t so huge when compared to the greatness of the God we serve.

Each decision ultimately comes down to us weighing what we know with what we hope is best and then choosing to trust.  Here’s what I know — “Some trust in chariots and some in horses, but we trust in the name of the Lord our God.” Psalm 20:7

 

 

Nothing is Missing

Over the past year and a half, my husband and I have been told that something is missing within our youngest daughter’s body.  Just one tiny enzyme isn’t there – an enzyme that is crucial to metabolizing protein.  It sounds small – can’t they just pump a fake enzyme into her and fix it?  We’ve been asked that question, and I wish the answer was an easy yes!  However, that one missing enzyme means that our Myka Joy has a genetic disorder called Methylmalonic Acidemia (MMA).  Her body doesn’t produce any functioning forms of that enzyme, so her subtype is MUT-0.  It’s totally missing.

Can I briefly share how Myka Joy’s life began?

Myka Joy, was born full-term via c-section on January 30, 2015 at a local hospital.  The first few days seemed great – nursing well, sleeping well, etc. On day 3 of her life, her temperature dropped, she refused to eat, and her breathing was labored and visibly wrong. She was transferred to downtown Pittsburgh to West Penn Hospital and then straight to Children’s Hospital of Pittsburgh of UPMC for prompt medical treatment for a metabolic crisis.  She was in an acidotic coma, fighting for her life. The breastmilk she had eaten had literally turned into poison and toxins in her blood. She needed dialysis of her blood and had a line surgically placed to do so.  My husband, Richie, and I found ourselves in the cafeteria of Children’s Hospital on the phone with a doctor in the NICU giving verbal consent to life-threatening procedures to try to save our newborn baby.

I will never forget the exact table where Richie and I sat that evening. We both sat there, weeping, trying to wrap our minds around the thought of losing the baby we had just held for the first time three days earlier.   In Joshua 4, we read about the Israelites placing stones of remembrance to mark the place where God had held back the waters of the Jordan River to allow them to pass on dry ground.  That table in the cafeteria of Children’s Hospital is our stone of remembrance.  It marks a place of surrender in our lives that will never be forgotten.  While I know that I have prayed prayers of surrender to the Lord in my lifetime, I’ve never been as fully surrendered as in that moment, when we prayed and made a decision that from that moment on, whether in Myka’s life or in her death, that we would give Him praise and glory for the life He had given her – no matter how long or short it was.

We praise God that He used the doctors and nurses to make quick decisions that evening. We ended up in a small, private waiting room with doctors coming in and out for hours trying to explain things to us, get consent for more procedures, and update us on Myka’s condition.   Thankfully, after two rounds of dialysis, she started to stabilize.  We were told bits and pieces of what her condition was and what it looked like. Over the course of several days in the NICU’s most intensive treatment areas, we learned that Myka has a genetic disorder affecting 1 in 80,000-100,000 babies and that she was born without a functioning enzyme needed to break down certain amino acids in protein. After almost 3 weeks in the NICU and the placement of a G-tube, God allowed us to bring Myka home to begin to learn how to care for her and her ongoing medical needs. We praise Him for His faithfulness to us in giving us the precious gift of life.

The Friday morning of my scheduled c-section, I read Deuteronomy 31:6 – “Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you…” and Isaiah 40:31 – “But they who wait for the Lord shall renew their strength;they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.”  I wrote in my journal these words, “We will be exhausted, but He will renew our strength.” I had NO idea what we were about to enter into, and am glad I didn’t. (Isn’t God gracious in NOT allowing us to glimpse into our future?)   I was anticipating being tired and even fearful just with having a new baby, but God was preparing my heart for something greater, something harder. He was also planting Isaiah 40 in my mind and in my heart and drew me back to this passage over and over again in those first few weeks of Myka’s life.

Myka has something microscopic yet profoundly significant missing in her physical body.  It affects her daily life, has resulted in dozens of doctor’s appointments, surgeries, numerous hospitalizations and means that she will undergo a liver transplant in the next year to hopefully reduce the devastating effects of the acid in her body.   She has something completely missing.  What is missing in your life?  There’s something… it might be a significant other, a spouse, a child you long for, more money to cover the bills, emotional voids left by crises or lack of nurturing love, desire for peace or understanding in an unsettling world filled with pain….the list goes on.  When is seems that our focus is consumed by what is MISSING, we must KNOW WHO GOD IS.

I have often in my life muttered quick prayers like, “Thank You that You are in control, God.” But I don’t know if I often thought about what I was praying or really even meant it. Through those first weeks of Myka’s life, I learned that God IS in control.  Richie reminded me that God was not surprised by the situation that played out with Myka. HE was not caught off guard or shocked. He had, before time, ordained and allowed everything to happen in Myka’s body.  As I continued to read Isaiah 40, this part kept leaping off the page:

Isaiah 40:25-26 — “To whom then will you compare me, that I should be like him? says the Holy One. Lift up your eyes on high and see: who created these?  He who brings out their host by number, calling them all by name, by the greatness of his might, and because he is strong in power, not one is missing.

How mighty HE IS, how small we are. How quickly we are here and gone.  I STILL question in doubt and pain, “God, WHY didn’t you just put that enzyme in Myka? Surely that wouldn’t have been too hard for you to do!”  In those moments, He has taken me to verse 26 again and AGAIN and AGAIN.  If He knows the stars by name and not one star in the universe is missing according to His plan, then not one miniscule thing is missing in my Myka according to His plan. Nothing is missing in your life that Jesus cannot fill.  He is still good. He IS in control.  NOTHING IS MISSING.

 

 

 

As It Is…

“As it is my eager expectation and hope that I will not be at all ashamed, but that with full courage now as always Christ will be exalted in my body, whether by life or by death.  For to me to live is Christ, and to die is gain.”  Philippians 1:20-21

We all have expectations.  They may or may not be verbalized, understood or fulfilled but we have them all the same.  What do you expect for this day?  A list a mile long usually finds its way to the forefront of my mind, often before I would like for it to arrive (sometimes in the middle of the night)!   I expect a lot of myself, even though I might not say those things aloud or even admit to most of those expectations.  I expect to be a wonderful wife, loving mommy, faithful friend, daughter and sister, devoted ministry leader and the list goes on.  I expect my house to be clean, laundry to be done, a nice dinner to be on the table plus time to play with my kids, make it to appointments, keep us looking somewhat put together, forms filled out and phone calls returned… Are you tired yet?  I am!

While these expectations in and of themselves are not wrong, they can be consuming, even idols.  At the end of most days, I feel more fulfilled that I checked off that ridiculous checklist than met the expectations that matter most – that matter for eternity.  In Philippians 1:20-21, the apostle Paul wrote that his expectation was to be unashamed and full of courage.  Now there are some worthy expectations!  Life As It Is is not about managing expectations but striving to meet the ones that matter.  Hence, the title of my blog.  Life is meant to be lived to the full, keeping in mind truths like the ones found in the verses at the opening of this post – As It Is focusing on faith and living it out courageously in the victories and in the battles.

“As it is” my expectations are mostly silly, unnecessary and easily forgotten.  Being a wonderful wife and mother means serving, helping and loving my husband and training and teaching my children; not just doing laundry, getting groceries and picking up the house.  Will you remember next month the items on your list that are consuming you today?  Will you remember them even next week?

“As it is” God is faithful to give me just what I need for this day, and even He doesn’t expect to handle more than that!  Matthew 6:34 says, “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself…”   I wasn’t created to digest my life’s events all at once but moment by moment.  Sometimes I allow myself to try to prepare for situations that lie ahead only becoming more anxious and fearful.  Let me yell this to myself: We are not guaranteed tomorrow!  Events I worry about often do not even happen and almost always don’t happen how I imagine them.  Even if unexpected trials come (and they will), I need to take ONE. DAY. AT. A. TIME.

“As it is” I need to strive daily to attain excellence in the areas of life to which God has called me.  Working wholeheartedly to love my husband and care for my children means that I should indeed be busy!   Yet my mind and heart should be focused on truth even in the mundane tasks, knowing that years from now my children will remember the lessons they’ve learned more than how tidy the living room was (“tidy living room” is an oxymoron to me)!   I am not good at this needed focus, but I know women who are.  They seem content and not easily flustered, and I know it’s because they have true peace.  Would you come alongside me and help me to stay focused on what matters?  What would our homes look like if we did this?   And let’s stop placing these expectations on each other!  You are who God made you to be – you are beautiful, made in His image, and created to fulfill the role He has you in right now!  In your feeling of inadequacy, He will equip you.

“As it is” life has a way of ruining my expectations.  Two years ago I was pregnant with our second child and teaching special education, while my husband worked for an insurance brokerage firm in downtown Pittsburgh.  (Was that all just two years ago?)  I expected a healthy child to be added to our family whether I said that to anyone out loud or not.  But God, in His wisdom and plan, gave us our daughter, Myka Joy, who has a rare genetic disease (plenty more about her in blogs to come).  She is a JOY to our lives.  God has used her daily care needs, frequent hospitalizations and need for a liver transplant to destroy my expectations.  Honestly, they’re shattered.  Some days I hate that – I selfishly want Myka to be healed and healthy.  Other days when God is gracious to give me just a glimpse of perspective, I’m thankful that through Myka’s life I expect Him to give me opportunities to be unashamed and full of courage.  I have come to expect for Him to be my strength because I have been taken to a place of having none.

‘Life As It Is” has no greater importance than living unashamed – holding fast to biblical truth – and full of courage – knowing that my strength to meet the demands of the day do not, can not, come from me but come from God.