Disappointment, Doubt, Discouragement--how do we cope

(If you don't have time to view the entire post skip down to the end for the summary points)

Many of you  dreamed of your baby taking that first bite of food and smearing it all over his face, not a child who vomited every time he tried a new food or got a rash from head to toe.   Many of you imagined a happy go lucky little one, not a screaming colicky baby who is still so fussy and fragile, who seems to be in pain more often than not.  You face daily disappointments and the overwhelming feeling that it is up to you to figure this out.  You spend your sleepless nights holding that crying baby and trying not to cry yourself.  You can't help but wonder why this happened to you and why God allowed this, couldn't you just have been like everyone else who has a baby that eats and sleeps normally?

You feel so overwhelmed every day, trying to keep it all together on little sleep.   You see the piles of laundry and dishes, you see the carpet needs vacuumed and the bathrooms scrubbed.  You need to go to the grocery store for the fifth time this week, that's the one thing you absolutely have to do, because you can't go to a fast food joint to pick up something "easy," you can't just take a break or have a night off from food allergies or intolerance's.  

At the beginning you told yourself, this would be over soon, the baby would grow out of his colicky state, he would eventually be able to eat, this wouldn't last forever.  Two and half years into it, it's hard to keep saying the same things over and over, how are you going to keep your spirits up in the midst of a "chronic illness?"

I say these things with humility, as nurse, I encounter Mom's all the time, who have children who have been battling cancer, have diabetes, are disabled, or will never grow to be self sufficient without the help of their parents.  I have spoken to countless parents who keep marching on in the face of adversity, who put themselves aside every day, to take care of the child they love.   What keeps them from falling into a deep depression?  How do they wake up every morning and deal with doctors appointments, chemotherapy, and caring for children with chronic illness? 

Love. 

The love of a parent is all encompassing.  It is powerful.  It is blind, it is selfless, it is strong.  This love will fight against all odds, to do whatever it takes to protect his or her child, to help him, to give him or her the best life possible.  I have seen this, I have lived this.

We keep on because we have to, for our children.

However, it is possible to allow the chronic to steal our joy, even our very life away from us.  To consume us, to overwhelm us.  We have to fight this discouragement with the same gusto in which we are fighting for child.   Doesn't our child deserve to have a mother who is full of joy and life, in spite of all that threatens to take that from us?  I have seen the chronic destroy the spirit of the caregiver, I have seen the caregiver become so overspent, that she falls into a place of discouragement, or bitterness or depression.  How do we, the caregiver cope with the demands that fall upon us and at the present, have no for-see-able end in sight?

Let's turn to my favorite source of wisdom and help, The Bible, God's Living Word to us. 
What are the two things that often steal from our joy and threaten to weaken us and bring us down as we care for the chronically ill?  I would say for me it is fear and anxiety. 

"Cast all your anxiety upon Him (Jesus) because he cares for you."  1 Peter 5:7

The apostle Paul,was no stranger to suffering, he himself had been imprisoned, beaten, mocked, and even suffered from his own physical aliment which he refers to has a "thorn in his flesh."  He speaks from his own experience with chronic pain and suffering,  and he tells us:

"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God which surpasses all comprehension shall guard your hearts and minds in Christ Jesus."  Phil 4:6-7

He goes on to explain how we can allow God's peace into our lives, we have to watch what our minds are dwelling on and make an effort to actually think about the following things:  "whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, let your mind dwell on these things.  The things you have learned and received and heard and seen in me, practice these things; and the God of peace shall be with you.:  Phil 4:8-9

Paul is one of my favorite hero's of the faith, he knows what it's like to endure hardship, yet he keeps his joy, he keeps his faith in spite of it all.  He has this belief which keeps him going

"And my God shall supply all your needs according to His reaches in glory in Christ Jesus."  Phil 4:19

You may be saying to yourself right now, well apparently God does not know my needs because he sure isn't supplying them right now.  I agree that there are times, when it feels like God is neither listening or near to us.  I do not wish to minimize your pain and suffering.  There were times in my journey when I felt that God was distant, when I cried out to him and felt He was silent, it was in times like these that I needed the help of others to keep me going.

As women, we are not good at asking for help.  We are used to doing it on our own.  In our culture we applaud those who put on a happy face and act like they have it all together.  The supermom who does it all!  In so doing, we do ourselves and others a great disservice.  In general, I feel that sometimes Christian women and mom's are even worse at being genuine.  Rather than admitting we are struggling with something, we try to act like we are the "good Christian" who would certainly never have questions or doubts.  What are we afraid of?  Afraid of being seen for who we really are, human?  We are still imperfect, that is why we need God's help, that is why we need each other.  We sometimes need another woman or older woman to come along side us and pray for us, to build us up, to share her wisdom and her journey.  We need to hear the stories of the older generation, we need to seek these women out and ask them to coffee and ask them how they did it.  We need to be real with each other so we can know that we are not alone in our struggles on this earth. 

Paul himself reminds us of the real secret to his incredible attitude, the real reason he kept going and never gave up in the face of constant adversity.  "But whatever things were gain to me, those things I have counted as loss for the sake of Christ, more than than, I count all things to be loss in view of the surpassing value of knowing Christ Jesus as my Lord, for whom I have suffered the loss of all things, and count them as rubbish in order that I may gain Christ, and may be found in Him, not having a righteousness of my own derived from the Law, but that which is through faith in Christ, the righteousness which comes from God on the basis of faith . . . I press on toward the goal for the prize of the upward call of God in Christ Jesus."  Phil 3:7-14

Paul knew, believed more than anything else, that there was more to this life than just the present day struggles.  His primary focus was on God and he says that he counts everything else as garbage that can't even be compared to the future that he has in heaven with Jesus.    He knew that the thorn in his flesh was temporary, though afflicting him in this life, it would have no power over him in the next.   He had his focus on Jesus first, He made an effort to put Jesus and the things of God first in His life, above everything else.

Well, that's all well and good you might say, but I'm not Paul, I'm just a regular person, and I don't have some super faith like that.  Well believe it or not Paul wasn't as different than you as you might imagine.   In fact he is quick to remind us that he was the "least of all saints," Eph 3:8, and that he was not even fit to be called an apostle 1 Cor 15:10 because he persecuted the church prior to his conversion.  If anything, God uses Paul to show us that He can use anyone, that He can change anyone, that if we put our hope in Him anything is possible, that His grace can reach the darkest soul and transform it.

I imagine that some of you may not know Jesus, I invite you to read the Bible, without thinking about what you've heard or imagined Him to be.  But start with the Gospel of John and just read about Jesus and see who He is and His message to you personally. 

As I think of the love that motivates me to keep fighting for my son.  The love and makes me want to be a better mother and a better person; I can't help but think of the sacrifice that God made for you and me.   Think of that love that you have for your child and imagine allowing your child to face suffering and pain, to not intervene on his behalf, to give him up to save someone who didn't even know you or even care for you.  This is the love that God has for you, I hope that you might embrace it and let it tranform you. 

"For God so loved the world, that He gave His only begotten Son, that who so ever believes in Him will not perish, but have eternal life. " John 3:16

Summary on how to overcome disappointment, doubt and discouragement

1.  Give your anxiety to God and believe that He cares for you 1Peter 5:7
2.  Pray and make your requests known to God  Phil 4:6-7
3.  Make and effort to dwell on the right things Phil 4:8-9
4.  Admit your struggles and your humanness
5.  Seek out other women who can help keep you on the right path and encourage your faith
6.  Know that this life and all the hardships that come with it are temporary Phil 3:7-14
7.  Accept Gods love for you, forgiveness and provision for you to have eternal life in Jesus John 3:16

Take a vacation from your problems . . .

Do you remember the comedy with Bill Murray and Richard Dreyfus--"What about Bob?"  Remember the advice the psychologist gives:  "take a vacation from your problems."   That's sounds good to me.  I think we all could use a vacation from our problems.  As mom's we spend so much time nurturing others that we forget to nurture ourselves.  Sometimes we even loose sight of who we are because we are so wrapped up in trying to help our children and others that we forget the things that we love, the things that make us who we are.  We start defining ourselves by WHAT we DO rather than WHO we ARE.  When we go down a road of defining ourselves by what we do--it quickly becomes depressing.  Cooking, cleaning, sorting the laundry, loading the washer, loading the drier, folding, changing a diaper, changing another diaper that exploded onto Jr's newly washing clothing and ran down the leg onto the carpet, re-loading the washer with the diarrhea soaked clothes and the vomit covered sheets, washing the stain out of the carpet,  REPEAT.   No wonder we quickly find ourselves depressed and despairing.   Even more tempting is despair in the mother of a child with chronic illness.  She consumes herself with doing all that she can to help this child, researching, praying, comforting, researching, writing letters, calling insurance companies, explaining the symptoms over and over to doctors and well meaning friends, scheduling appointments, going to appointments, fighting back the tears as her child is poked again--she is always surviving for her child, always fighting for his/her rights, all the while pushing back the guilt she feels  that she is somehow not  doing enough for him or her or the other children who have to wait while she helps the sick child who demands all her time.  What would she give to take a vacation from her problems?  What would she do to make it all disappear.   

Oh, sisters, I wish I could be there at that bedside in the hospital with you even now.  I wish I could hold your hand through that procedure that your child is facing, I wish I could wrap my arms around you and in the silence whisper, "I've been there, it's okay."  I wish I could take away your fears and worries and give you the answers that you seek.  I wish I could spare you the pain that you are feeling for your child. 

I wish I could tell you that during those times of darkness, I never wavered in my faith, I never questioned God's love, I never doubted His care for me.  But if that were true, I would have been more than human.  No, rather, it was in the darkest times that I realized I was in fact human, that I was in fact merely a woman, a woman who never felt weaker than I felt then.  It was then that I was so low, that all I could do was look up, and cry out as your little ones cry out to you--"hold me, hold me".  I wish I could say that in a shining moment God parted the sky and said "HE IS HEALED."  And everything was better for Henry.  Instead, through the unexpected, God continues to teach me to wait and trust.   

I still do not have all the answers concerning my Henry.  I don't know why he still has trouble swallowing, or why he has to drink his formula as thick as pudding to prevent it from leaking into his lungs when he swallows.  After 20 months of doing all that I can, I don't know why he is still so severely underweight.  I don't know why he can't tolerate certain foods and why the things that most people can eat wreak havoc in his gut.  I don't know why he is prone towards inflammation or if he will still need his airway surgery.  I don't have the answers and neither do the doctors--yet.

God has chosen to leave some things unanswered.  I was angry at first.  Why would he allow this to happen to me.  Hadn't I been faithful--What did I do to deserve this?  What did Henry do?  The answer dear friends--is NOTHING.  I had to ask these hard questions, and so may you.  Do not fault yourself for being human.  Do not try to be something you are not.  As women we try to be so strong, we try to keep it all together.   Every other woman is wishing you would be real, so that she can know that she is NOT ALONE, that you are human too and so is she.  She is riddled with questions and anguish and pain.  That she is trying to be the best mom possible, but sometimes she makes mistakes--sometimes she forgets to plan dinner or do the laundry or dare I say--feed the dog!  She is human and so are you.

If we define ourselves by what we DO, we will end up despairing when we, by own standards, fail to be what we think we ought to be--SUPERMOM.  Who set this standard?  And what does it even mean?  Are you seriously a better mom because your child went to school with a picture perfect outfit and braided hair?  My child went to school today with a rats nest hairdo and purple flower boots--and he is a boy! 

Truth be told:  when our lives are filled with the stresses of REAL life, such as caring for a sick child, or caring for any child for that matter--we will despair when we focus solely on the problems,  the "diagnosis,"  or lack there of. 

Jesus said "MAN SHALL NOT LIVE ON BREAD ALONE"  Those with food allergies will give a hearty amen!  But what did He mean?   Well, look at the context in Matthew 4, Jesus was being tempted by Satan.  And when did Satan come to Jesus?  When he was at His strongest?  No!  He came to tempt him after Jesus had fasted for forty days and nights; when his body and mind were weak with hunger, when he was at the point of total exhaustion.  When He would have been most prone to depression and despair.   Jesus answered, "MAN SHALL NOT LIVE ON BREAD ALONE, BUT BY EVERY WORD THAT PROCEEDS OUT OF THE MOUTH OF GOD." 

Bread is of this earth, and it gives temporary life, but in the end we are all perishing with out God.  Imagine as with FPIES, when you taste it, it is wonderful and quenches your hunger, but hours later--it causes you to wreath in pain, and then putrefies in your gut causes you nausea and then to vomit.  It never satisfies, it never nourishes, it never fills--instead it ultimately destroys.   That is what I think happens when we feed ourselves with the wisdom of this world rather than the WORDS of God.  Why settle for the bread of the earth, why do we dwell on the  temporary--when  GODS word is available to us?  WORDS OF TRUTH. WORDS OF LIFE.  So many times, instead of turning to God's word, I worry, I research, I freak out--I eat the bread and later feel so sick.  I need His WORD to survive.

This life is in our face every day, and more so all the problems of it.  It is easy to be consumed by them, so often I am.  When I constantly dwell on the negative, it sours like putrid bread in my stomach, and if left unattended long enough it will grow into bitterness.  

One verse in my Bible study spoke to me, should I say screamed out at me this week--Sisters, eat it as the GOOD bread, let it fill you, let it nourish you, let it heal your soul:

"Therefore, we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day.  For momentary, light affliction is producing for us an ETERNAL weight of glory far beyond all comparison, while we look not at the things which are seen, but the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal."  2 Corinthians 4:16-17

Don't lose heart.  Do NOT lose heart.  If I dwell only on what is happening here on earth, I will certainly lose heart, I will certainly despair.  There is more than this life, for you and your child.  This life is not the end.  There is a day coming when He, Jesus,will wipe away all the tears from our eyes.   When there will be no more pain or suffering.  This is temporary, I know it doesn't feel that way now, but what is coming is beyond all that we can imagine.  Also,  Paul says this "momentary" affliction will produce for us an ETERNAL glory, far beyond comparison.   These words come from the apostle Paul, who knew about suffering in more ways than one.  He knew what it was like to be isolated, to be misunderstood, he had faced prison and physical beatings, he knew what it was like to "despair even of life" (2 Cor 1:8) 

In God's time frame, what we are experiencing in this life is only momentary.  It is hard for us to understand, but I think it will be as though we've woken from a dream, when we wake up in heaven and realize how momentary it really was; although while we are here, this life feels like eternity.   We might not have an answer as to the WHY of our child's illness, we may never understand.  But God does tell us that the affliction or suffering we face is producing an eternal glory. What is that glory?  Is it  that others around you see what God is doing and see how He is working and they follow Him due to your response to the affliction?   Is it that as you experience these sufferings that you are changing into a more kind, compassionate person--that you now show empathy to others who have similar problems?    Had you never experienced these challenges, would you be the person you are today, or the person you are becoming?  As our children and husband watch us, will they see in fact that we are human, we do make mistakes, we do struggle, but in the end we set our eyes toward heaven and ask for God's help. 

I know it is easy to despair when your child is sick, especially if it is chronic.  Especially if there are no answers or good solutions.  If that is where you are right now, I have been there too, and it's OK to be in that place.  I want to reach into that place of isolation and emptiness and tell you, you wont have to be there forever.   God can still reach you, even in that pit of darkness. 

I can't take you on a vacation from your problems, I can only point you to the place where I turn from my problems and find hope.   That place is at the Cross, where Jesus was willing to lay His life down and suffer the worst of sufferings for me and for you.   He knows the deepest pains and hurts of our hearts.  And our Father God knows what it is to watch his only son suffer, to watch his son die a painful death.  He allowed Him to bear all our sin, He took our place, so that you and I could have the hope of eternal life, a life that is free from suffering and pain and loss--a life that we must hope for, that we must fix our eyes upon--it's coming . . .

Some practical things you can do to mentally take a vacation from your problems:
(I am not saying it is easy to do these things when you have a child/children who are ill they are just goals to work toward)
1.   Read the Bible--put encouraging verses around your house, on mirrors and random places to help you focus on the positive.
2.  Pray.  On your knees.  In the car.  while you cook, while you clean.  Just talk to God like He's your best friend--soon He will be. 
3.  Try to get out with some friends (I did this last night and it's something I haven't done for months--I laughed so hard, belly laughed--thanks girls--I needed that!)
4.  Go out with your husband--if you can't afford it  or spare a lot of time, be creative--think outside the box.  Have a friend watch your kids and just spend time at home, eating and talking and relaxing without the kids (more on how to focus on your marriage to a post to come)
5.  Do something for someone else who is in need--send a card,  call and ask how they are doing and listen to the answer,  make a meal--when you focus on someone else it gets your eyes off of your own issues for a while. 
6.  Purposefully give hugs to your children and husband--hugs make everyone feel good
7.  The next time one of your kids says "play with me," try not to say "in a minute" just surprise them by doing it--now.
8. Turn off the TV and Internet and get down on the floor and play with your kids.  Pretend to be a lion or something silly, loose yourself in their world of pretend and be someone else for a few minutes.
9.  Exercise--if you can't get out then turn on the music and see how long you can dance with your kids, they will love it and you will start laughing--laughing burns calories too!
10.   Go to bed.  Let yourself rest so you can do this again tomorrow.