Friday, July 13, 2018

For the Mom with a New Diagnosis


I’ve been talking to a friend who recently received a diagnosis for her child, and it got me thinking – what advice do I have for someone just starting this journey?  Of course, there is enormous variety in the arena of special needs parenting.  What applies to one won’t apply to all.  However, as I began to think through the things that I would want to know if I were back at the beginning, I thought it would be worth putting down in writing.  And for those whose families have not been touched by special needs or long-term medical issues, stick around.  You might learn something as well. 

1.  It’s okay to grieve.

Your child is still here, but at the same time, you are still experiencing a great loss – the death of a dream, a reality that is not quite as expected.  No one wants to hear that their child may experience difficulty, be different, or suffer.  Allow yourself to feel whatever emotions you have.

2.  Not everyone will understand, and people will likely say all the wrong things.

I could make a book of all the crazy, unhelpful (and sometimes hurtful) things people have said to me over the years.  “I bet he’d eat ice cream.” – Uh, no.  It’s not that he won’t eat.  It’s that nearly everything makes him terribly sick.  “I have a picky eater too.”  Yes, I also have a picky eater – but it’s not the one with the feeding tube.  There is a HUGE difference between refusing food due to pickiness and not being able to digest it properly.  Try sitting at yet another birthday or school party with a toddler who wants so badly to eat everything there but can’t.

One that continues to make me uneasy is when new parents state, “He or She’s healthy, and that’s all that matters.”  I know what they mean, but there’s something about it that makes me cringe.  Are they saying that since I have a child that’s not 100% healthy, he’s missing the only thing that matters in life?  That his life is of less value?  Yes, we all pray for healthy children, but there is life to be lived after a diagnosis.  Thankfully, my son has learned to live well despite his health issues.  

So what do we say to others when we’re not sure what to say?  Many times, it’s best to simply let someone know that you love them and are praying for them.  (Then actually remember to pray for them!)  Another thing that usually works for me is to ask the person, “So, how are you feeling about all of this right now?”  Then, stop talking and just listen!  We often like to project our own feelings onto others, who may feel something completely different than we expected.  This will let you know exactly where they are and what they need in that moment.  

3.  Everyone will have an opinion about what you should do next.

There are a million and one “remedies” for everything these days.  We have tried many things throughout the years.  Some have helped, and many more haven’t.  Just because someone suggests something doesn’t mean it’s the right thing for you.  I often pray James 1:5 over my family, asking God for wisdom to know the right thing to do at specific points in our journey.

At the same time, don’t be afraid to try reasonable ideas that you think might be a good fit for your family.  Some alternative therapies have provided our greatest successes over the years.

4.  Find balance in the chaos.

It’s easy to spend hours researching, attending every type of therapy, going to every doctor.  However, you have to remember they are still kids.  Decide what interventions are reasonable (and affordable) for your family during each season of life.  Do what needs to be done, but make sure you leave time to play, connect, and enjoy each other.

We’ve had seasons of intense therapies and numerous doctor appointments.  We’ve also had seasons where we needed a break.  Again, pray for wisdom, and move forward with a plan that’s right for you – without feeling guilty.

5.  Eventually, you have to find your new normal.

Yes, take time to grieve (#1).  At the same time, you eventually have to find a way to navigate this “new normal.”  Your kids need your example of how to live joyfully in this less-than-perfect world.  I think John Piper says it well…


This is not a one-time event either.  At first, there may be a long periods of grieving.  Eventually, you may just need a moment to feel the weight of your emotions alone in the shower each morning before boldly facing the day.  Before you know it, you may have gone several weeks or months.  The point is that, with God’s strength that has been made perfect in your weakness (2 Corinthians 12:9), you keep on getting back up and moving forward.

6.  Professionals don’t know everything.

As with every profession, there are some good doctors, etc. out there, but there are many bad ones too.  Most will see your child for no more than 5 minutes at a time and think they know everything there is to know.  (If you could see my face, you would know that I’m rolling my eyes now.)  Don’t be afraid to disagree with the “professionals.”  They are NOT always right.  At the same time, be open minded to new ideas and insights from their experience that might be helpful.

7.  Support may (will) fade.

We live in a day where many are suffering.  The sheer amount of pain and loss is overwhelming.  While, people may be able to stick with those with shorter-term difficulties, eventually support fades for those with long term diagnoses and health issues.  If you have someone that sticks around for the long haul, you are blessed.  See #9.

8.  Sometimes you will feel like an alien from another planet.

There are days when you will feel like you just don’t fit in anywhere any more.  You’ll be somewhere with a group of friends and realize you cannot relate to anything they are talking about.  During certain seasons, there is no time (or money – since you’re spending everything you have on doctors and therapies) to look at the latest gadgets, read the latest news, or follow the hottest trends.  Or they may all be talking about milestones their kids are meeting that your child may never reach - or activities in which they may never be able to participate.  Make sure you have done #9.

9.  Build your tribe.

Finding other families you can relate to is a MUST!  While support in general may fade, others with special needs or chronic health issues are worth their weight in gold.  (And that’s saying a lot with the cost of gold these days!)  We have met some AMAZING families through this process.  It’s good for your kids to know that they are not alone, that there are others out there dealing with difficulty.  Seek out other families that you can relate to.

I have specifically sought out other families who have an older child with a feeding tube that my son can talk to/ hang out with.  (They are not easy to find.)  It has helped him (and me!) tremendously.  Whenever I hear of a new “tubie” family, I make a specific effort to reach out to them and let them know I’m here if they ever have any questions.

10.  People will call you brave, a hero, a saint – but you usually don’t feel like one.

I’m just a mom who wants the best for her kids.  Most everyone else would do the same thing in my shoes.  It’s only by God’s grace and strength that I get out of bed every day!

11.  It’s okay to be human.

Everyone has bad days.  When you have a child with special needs and/or health issues, there’s a lot more that can go wrong each day.  Sometimes, you will handle it like an Olympic champion.  Other days you may look more like that salmon swimming upstream, about to be eaten by a bear.  Thank goodness His mercies are new every morning (Lamentations 3:22-24).

12.  Stay close to Jesus.

There were times when I thought I should change my life verse to Proverbs 13:12, “Hope deferred makes the heart sick.”  Instead I have decided to live by Job 13:15, “Though he slay me, I will hope in him.”  I need Him, and I can’t make it without Him.  Sometimes I understand Him, but mostly I have no clue what He’s doing.  He’s not surprised by my thoughts and feelings.  He welcomes me to bring them all to Him.  HE is the only thing that’s gotten me through.  (See this post.)

13.  It’s all about that bass Grace!

“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.” (2 Corinthians 12:9)  It takes grace to embrace this new normal.  It takes grace for me to respond kindly to those who unknowingly (and sometimes knowingly) say and do hurtful things.  It takes grace for me to respond kindly to my kids and husband when life has sucked everything I have left right out of me.  And it also takes grace for others to do these same things for me.

“For from his fullness we have all received, grace upon grace.”  John 1:16



For those who are part of my tribe, who have walked with me on this journey, I am forever grateful for your friendship.

Janel




Thursday, February 15, 2018

He Loves Me, He Likes Me Too




“I may not always like you, but I will always love you.”  It was early in our relationship.  His intentions were good (though I still like to joke with him about it), and I’m thankful to be married to someone that is committed to me – even on my worst days.  Let’s be honest, when you start dating your future spouse at 16, he gets to see the parts of you that others who enter your path later in life don’t have to suffer through.  He was there as I finished high school, labored through college, and tried to sort out life.  I am so grateful to be married to someone who sees love as a long term commitment, not just a feeling that comes and goes.

We talk about this kind of love all the time in our churches – a love that’s committed, that loves you at your worst, that expects nothing in return.  Agape.  We hear it so much that it can be easy to fall into the trap of only viewing love as some type of contract, void of any feelings.  Seems more like a prearranged marriage, doesn’t it?  “I’m committed to you, but I may not actually like you.”

The problem is that we can view God’s love for us in the same way.  Commitment void of any feelings.  Loving without liking.

I think back to singing “Jesus Loves Me” as a kid.  There’s something about the rarely sung second verse that bothers me.


Jesus loves me when I’m good, when I do the things I should.
Jesus loves me when I’m bad, though it makes Him very sad.


At this point in my life, I can willingly admit that I’m a mess - and I will never get it all together this side of heaven.  None of us will.  So then, is Jesus walking around in a state of perpetual sadness, always disappointed with us?  Commitment without feeling, loving without liking?

No, no, no!  Let me say it again.  NO!!!

Yet, so many of us feel & live this way.

Think about Peter’s denial of Christ…

Then they seized him and led him away, bringing him into the high priest's house, and Peter was following at a distance.  And when they had kindled a fire in the middle of the courtyard and sat down together, Peter sat down among them.  Then a servant girl, seeing him as he sat in the light and looking closely at him, said, “This man also was with him.”  But he denied it, saying, “Woman, I do not know him.”  And a little later someone else saw him and said, “You also are one of them.”  But Peter said, “Man, I am not.”  And after an interval of about an hour still another insisted, saying, “Certainly this man also was with him, for he too is a Galilean.”  But Peter said, “Man, I do not know what you are talking about.”  And immediately, while he was still speaking, the rooster crowed.   And the Lord turned and looked at Peter. And Peter remembered the saying of the Lord, how he had said to him, “Before the rooster crows today, you will deny me three times.”  And he went out and wept bitterly.  (Luke 22:54-62)

What expression do you see on Jesus’ face when he turned to look at Peter?  For many years, I saw that “Jesus Loves Me” sadness on his face.  “Peter, I still love you, but I don’t really like you right now.  I'm sad.  You’ve disappointed Me.  How could you mess up again? I even warned you this was coming!”

Then, one day I realized this couldn’t be true.  No, the passage doesn’t give us any hints about the expression on Christ’s face.  Yet, the rest of Scripture does reveal His heart for us.

I believe the look on His face was grace.  Because that’s what God continually lavishes on all of us – grace after grace.  Unmerited favor.  “Peter, I still love you.  I still like you too.”  His Word tells us, ”There is therefore now no condemnation for those who are in Christ Jesus” (Romans 8:1).  So, how could His face have reflected anything but grace in that moment when He was about to pay love’s highest price?

Isaiah 62:4 says, “You shall be called My Delight Is in Her… for the Lord delights in you.”  I am in awe of the idea that God can find delight in His children.  (See 2 Samuel 22:20; Psalm 18:19, 41:11.)  What image does the word “delight” bring to your mind?  It’s certainly not detached and emotionless.  I envision great pleasure and joy.

In Psalm 103, David shares…

The Lord is merciful and gracious,
    slow to anger and abounding in steadfast love.
He will not always chide,

    nor will he keep his anger forever.
10 He does not deal with us according to our sins,
    nor repay us according to our iniquities.
11 For as high as the heavens are above the earth,
    so great is his steadfast love toward those who fear him;
12 as far as the east is from the west,
    so far does he remove our transgressions from us.
13 As a father shows compassion to his children,
    so the Lord shows compassion to those who fear him.
14 For he knows our frame;
    he remembers that we are dust.


I especially like verse 14.  God knows what I’m made of.  He knows I’m not perfect.  He knows every sin I ever have and ever will commit.  Every time I will fail Him.  He knows me better that my high school sweetheart – who’s still here over 25 years later.  He knows me better than I even know myself!  And yet He chooses to love me.

His love is committed and faithful to His children – no matter what.  Yet it’s also full of delight.  A love that doesn’t just put up with me, but still likes me – even at my worst.  A love that knows every detail of my life, yet still extends grace and mercy.  A love so deep that it died in my place; so that when He turns to look at me, all that He sees is Christ’s blood covering all of my failures.

Though our earthly loves may find it difficult to like us some days, our heavenly Father never will.

"And I ask him that with both feet planted firmly on love, you’ll be able to take in with all followers of Jesus the extravagant dimensions of Christ’s love. Reach out and experience the breadth! Test its length! Plumb the depths! Rise to the heights! Live full lives, full in the fullness of God."  Ephesians 3:18

Note:  There has been some debate over the use of the word "reckless" to describe God's love for us.  If you take it to mean rash or without forethought, then no, it is not a good word choice.  However, the writer explains it this way, "He is utterly unconcerned with the consequences of His actions with regards to His own safety, comfort, and well-being...His love doesn’t consider Himself first. His love isn’t selfish or self-serving. He doesn’t wonder what He’ll gain or lose by putting Himself out there...His love leaves the ninety-nine to find the one every time. To many practical adults, that’s a foolish concept."  I hope you will research and decide for yourself.  Personally, I love that it has spurred such a discussion about God's love.

Sunday, August 13, 2017

Though He...


          Through the years, I’ve heard many people give testimonies of how God has worked in their lives through the struggles they have faced.  So often I have heard someone state, “I would gladly go through it all again because of all God taught me in the process.”

          I don’t know about you, but that’s not me.  My life looks more like one of those movies where someone has been taken hostage and is being interrogated.  When the captors realize that the person won’t talk, what do they do next?  They find someone the person loves and threaten to hurt THEM if the person doesn’t talk.  It’s one thing to remain strong and steadfast when it’s your own life at stake – and something completely different when it involves those you love.  In the movies, that's when even the strongest give in and crumble.

          And that’s why I can’t say I would gladly relive all that I’ve been through these last 10+ years.  Because it has involved watching those I love suffer.  No, I would not choose to relive it all.  I’ve said before that you couldn’t pay me a million dollars to do it all again.

          Am I thankful for all I’ve learned?  Yes!  Do I cherish the ways I’ve grown?  Yes!  Am I thankful for how much my faith has increased?  Absolutely!

          However, I’ve also experienced just how difficult this life can be.  As I write today, it’s the five year anniversary of the surgery to insert my son’s feeding tube.  I am also preparing to attend my grandmother’s funeral.  My mom passed away January 2016 after an 8 year battle with cancer.  Her dad followed in April of this year, and now my grandmother not even 4 months later.  Three funerals in a year and a half.  And these aren’t the only things I’ve faced.  They are just the tip of the iceberg.  There’s so much more.  The moments that rip out pieces of your heart that you never quite get back.

          And I know it’s not just me.  I found out just yesterday about another high school friend going through an excruciating trial.  This in addition to the others I know who are living with children or spouses with chronic diseases or illnesses, death of loved ones, strained relationships, and more.

          Not long ago, I was sorting through old photos.  I looked at those faces – 20-30 years younger than today.  I think of the things they have faced since – and still face today.  If I could go back, what would I say to them to prepare them for what was to come?

          I would tell them this…  Press into Jesus.  Draw close to Him and decide beforehand that you will trust Him no matter what comes your way.  Determine in your heart that, “Though he slay me, I will hope in Him” (Job 13:15).  And even more than that, whatever the “though He” may be, I will continue to trust, follow, and serve Him no matter what.  Proclaiming like the three men about to be thrown into the fiery furnace, “Our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of your hand, O king.  But if not, be it known to you, O king, that we will not serve your gods or worship the golden image that you have set up” (Daniel 3:17-18).  And like the popular song says, I will do this “even if”…  Even if my loved one is never completely healed this side of heaven.  Even if this trial never ends.  Even if it rips my heart in two.  Even if…

          And in the midst of it all, never stop worshipping.  (Job 1:20, 2 Samuel 12:19-20)

          Why?  Because this life is not about me, my wants, my desires, or even my happiness.  Because I have died, and my life is hidden with Christ in God (Colossians 3:3).  Because I am a living sacrifice, no longer conformed to this world (Romans 12:1-2).  Because I am taking up my cross and following Him (Matthew 16:24, Mark 8:34, Luke 9:23).  Because I’m losing my life in order to save it (Luke 9:23-25).  Because His grace is sufficient, and His power shines brightest in my weakness (2 Corinthians 12:9).

          And the greatest why of all?  Because I want God to be glorified in my life – whatever form or shape this may take.  The mountains and the valleys.  The victories and the tragedies.  My life is His to do with as He pleases.  And though He _____, I will hope in Him.

          “Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.”  ~ James 1:12

 Janel


Tuesday, July 11, 2017

How Much Does Heaven Weigh?

If you could place your life's trials on a scale, how much do you think they would weigh?  10-20 pounds, 100 pounds, a ton, even more?  This life can so easily weight us down.  Some seasons in life, the burden can be so very great.

I love to think about heaven.  Just the thought of an eternity without pain or sorrow is almost beyond comprehension.  I Will Rise by Chris Tomlin expresses this so well.  But heaven is not just about the absence of evil, it is also about the presence of God - the glory yet to be revealed.

2 Corinthians 4:17-18 says, "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal."  (NIV)

I've heard this verse many times before, but something new jumped out at me one day.  Did you notice how it referred to the weight of eternal glory?  Not only do we get to look forward to the absence of pain & sorrow - but however great the weight of our earthly sorrows, we will encounter a glory that weighs more than our troubles ever did.  So much so that our earthly woes will appear light by comparison.  And this is not temporary - but for all of eternity.  What an amazing thought!  Let that sink into your heart for a minute.

As I look back at the trials I've experienced - miscarriage, raising two kids with ongoing health issues (one of whom was miserable the first 8 years of his life), a mom who passed away after an 8 year battle with cancer, sitting in hospital rooms with family members who might not make it, as well as numerous other challenges.  I think of the days when I was so weighed down by it all.  The times when all I could do was sit and cry until I just couldn't cry any more.  It is all a reminder that the weight of the trials I experience is in this life cannot compare to the far surpassing weight of heaven that is yet to come.  O Glorious Day!


Janel


Monday, July 10, 2017

Charis Road Intro


"Tune my heart to sing thy grace."
~ from Come, Thou Fount of Every Blessing


Welcome to my new blog!
  For those who are new, thanks for dropping by.  For those who followed my previous blog, thanks for sticking with me all this time.

So, who am I?  I am a wife (married 18 years) and mom to two spunky kiddos (currently 11 and 12).  I am a former foster parent (turned adoptive mom).  I am also a teacher, certified in both elementary & special education.  I taught in private school for 6 years, stayed home with my kids for 6 years, and then returned in 2012 to teach at the public school my kids were attending. 

Through all of this, God has given me a passion for helping churches and Christian schools to better serve individuals with special needs and their families.  Many might assume that this calling came about after my kids came along (due to their medical concerns).  However, this desire surfaced well before they entered the picture.  It came about during those first years of teaching in a private, Christian school, as there were not sufficient services to assist students with learning differences, medical concerns, or physical challenges.  I won't go into the full story at this time, but if you'd like to know more, you can read one of my previous posts here.

For some time now, this calling has been simmering, waiting on God's perfect timing.  But recently, there has been a cloud (or two) on the horizon - signs that I may soon be able to live out the calling that I've been so passionate about all these years.  And that is what's led me to start a new blog.  I'm hoping to share with all of you not only my life and musings but also my journey along the path to which He has called me, in hopes that it will help others who follow a similar path.

Charis is the Greek word for grace.  It was a word that God placed in my thoughts some time ago.  I can't remember when it began really.  Thus, the title for the blog - Charis Road.  Journaling my journey along this path of grace.  It is only by His grace that I've made it this far, and it's only by His grace that I continue.  I am an imperfect person who is thankful for, amazed by, and in need of His grace daily.


Janel

For the Mom with a New Diagnosis

I’ve been talking to a friend who recently received a diagnosis for her child, and it got me thinking – what advice do I have for someone ...