The Making of a Hospital Mom

"When the Unthinkable becomes your Reality, 

you have two choices: Regret or Redemption"  ~ The Hospital Mom

On January 27, 1999 the unthinkable became our reality. Our pink and precious daughter of 6 months suffered a massive mid-cerebral arterial stroke. The main artery between her spine and her brain had become blocked from a blood clot at the juncture where it splits into the left and right hemispheres. Worldwide, 1 in 25,000 live births will suffer a stroke each year.  

The years that have followed have been tumultuous. Doctors, therapies, drug studies, seizures, and surgeries. There are times where I felt I have earned doctoral degrees in Physical Therapy, Occupational Therapy, Pharmacology, Neurology, Developmental Pediatrics and Child Psychology from the Mother's Medical Institute.

At any moment I can walk into an emergency room and speak in medical terms with any nurse, doctor or specialist. Pity the poor nurse who argued with me that my child could not possibly have suffered a stroke. "Children do not have strokes," she said with condescending authority.

Ashley was having seizures and I walked into the emergency room in Tulsa, Oklahoma telling the medical team what she needed. I had been on the phone with her neurologist and we agreed I could transport her to the hospital quicker than an ambulance could find me - plus I was already in the car and on my way - and he would meet me there.  

My dad met us at the hospital and while he entertained my 25 month old daughter, I politely asked the nurse to step outside the room. "Never tell a parent in front of a child that they are making up a diagnosis, especially one this horrid," I said with the indignation of a mom who was living the unimaginable. The nurse continued to argue with me as the doctor approached and I told her to go pull up the MRI and CT scans from the past 2 years. "I will," she assured me and stomped off, hands on her hips. And she did. The neurologist arrived, treatment began and later, he brought a very apologetic nurse into the room and assured her that infants do indeed have strokes.  

That night I realized that parents must be advocates for their children. As the years passed, I learned most parents are so intimated by the medical process, hospital personnel and are simply overwhelmed by their situation that they are afraid to speak up. They will accept whatever is told them and not ask questions, advocate for help or seek solutions for their children.  

I have worked with families in numerous settings - adult education centers, as a parent advocate in schools, at church and as a chaplain. The redemption of Ashley's story is in sharing the wisdom, education and experiences we have gained in this struggle.  

Parents of chronically medically challenged children are more likely to divorce, have extra-marital affairs and battle addictions. As their world centers around their children, hospitals and the medical world, they withdraw into themselves and face depression while living in a constant state of regret - the "would of, could of, should of" state of mind.  

Our purpose is simple:

         To provide Hope and Humor to Families of Chronically Medically Challenged Children. 

The ways we do that are numerous:

         Website - Hospitalmom.net

         Facebook - Hospital Mom

         Writing for Blogs like this one and at HospitalMom.net

         Answering Emails of Hurting Families at      
                    Kim@hospitalmom.net

         H.O.P.E. Delivery Bags for Caregivers at Hospitals

Currently, I am writing a book to bring Hope to Families. The following is an excerpt from "Beautifully Complicated," the story of redeeming the hurt in our lives in order "to Know HIM and Make HIM Known."

from BEAUTIFULLY COMPLICATED

“This is my Father’s World

and to my listening ears

    All nature sings and ‘round me rings

The beauty of the sphere.”

Eighteen years ago I first sang this song to my infant baby girl. Born early - eager to change our world. Born tiny - proving size does not matter. Born the baby sister - her brother in love with her before she was before. Born a surprise - her daddy named her the moment he saw the positive pregnancy test. 

“This is my Father’s World

I rest me in the thought

   Of rocks and trees; of skies and seas

His hand the wonders wrought.”

Fifteen times I have laid her on an operating table and sang those words in her ear as she drifted to sleep. Sometimes easily.  Sometimes fearfully, gripping my hand.  Sometimes I have had tears in own voice and many times, I have sang to a room full of surgeons and technicians who came to the operating theater because they had heard of this family who sang before surgery and wanted to experience the peace that is in the room.

Three times I have sang this hymn in the surgery waiting room because that facility did not allow me to accompany her into the operating room.

Eighteen surgeries.  

        Thousands of miles driven in rain, snow, sunshine and shadow. 

        Months our family has lived apart - separated by 8 hours and the Rocky Mountains.

        Dozens of professionals. Hundreds of medications. Thousands of phone calls to doctors.  
Ten Thousands of hours in research by specialists and parents.   

        Millions of prayers raised by family, friends and even strangers.

This indeed is My Father's World. The Unthinkable will happen because this world is in a fallen state where the sin of mankind has brought heartache. Yet God redeems the pain of our fallen state to help each other. When we help each other that pain becomes bearable, even manageable as we allow Him to reveal His glory as we live other lives for others.  

           “This is my Father's world. 

                    O let me ne'er forget 

              that though the wrong seems oft so strong, 

                   God is the ruler yet. 

            This is my Father's world: 

                   why should my heart be sad? 

            The Lord is King; let the heavens ring! 

                  God reigns; let the earth be glad!”

Are you living the Unthinkable?  

Where you never dreamed you would be?

Are you living in Regret - depressed, lonely, self-pity -  or in Redemption?

As you listen to the song below, go to God in Prayer and 

ask the Father -

"How will you redeem the pain in my life?  

Who can I serve?"

"This is Our Father's World"

Our Favorite Version! Enjoy!

  Amy Grant "This Is My Father's World"

The Power of Encourgament

By Kim Beach

Who doesn't like a surprise party?

Well, evidently I don't. I've been the recipient of two surprise parties in my lifetime and both times I was so determined to stay home that I almost missed my own celebrations.     

Recently some of my dear girlfriends dressed as Pirates - in honor of my favorite movies -  and threw me a Surprise Birthday / Encouragement Party. There was sushi and pirate booty, pirate punch, cannonball meatballs and even a Pirate Ship chocolate cake! The wackiness was great, the laughter healing and I'm so glad they were able to get me to my own party!

Their gifts to me that evening were simple & yet extravagant.

Their time.

Their attention.

Their love.

Then each person took time to share with me either a scripture or word that God had shown them I needed to hear; they shared what I had meant to them in their lives.

It was awesome and humbling. 

This season of our life has been long and hard and weary. There are days that getting dressed is a major victory. These ladies have stood with me, prayed for me and stood in the gap when I could no longer pray at all.

As they shared words like Determined and Listen and scriptures from Psalm 20, a balm was poured over my soul and freshness awakened within me.

New Strength ~ New Peace ~ New Energy!

Everyone needs Encouragement now and then. It doesn't have to be a Pirate Party - a card to your neighbor, an email to a friend, a text to your spouse - those words mean so much.  

Your words of love and truth can bring life and hope to a hurting heart. 

Who needs to your Words of Encouragement?  

Ask the Lord to show you - in the grocery store, in your workplace, at school,

in your own home - who needs to hear words that

bring life!

When All Is Quiet

By Tiffany Bleger

When all is quiet

Where do you go?

When His voice isn't clear

Where do you run?

Do you charge ahead

Determined in your path?

Do you stand stock still

And wait for the whisper?

Do you turn and run

Back to the familiar?

Do you wander in circles

Moving but going no where?

When all is quiet

Where do you go?

When His voice isn't clear

Where do you run?

Do you lean on your friends 

For an encouraging word?

Maybe listen a little harder

To Sunday's sermon?

Do you beg and plead

And beat your head?

Do you make promises 

You know you won't keep?

When all is quiet

Where do you go?

When His voice isn't clear

Where do you run?

Do you pick up your bible 

And blow off the dust?

Do you listen to music

You think He would love?

Or do you trust and wait

And remember His promises?

Do you know Him well enough

To be still in the quiet?

When all is quiet

Where do you go?

When His voice isn't clear

Where do you run?

I Need a Clean Sweep

By Jill Palmer

I was driving past a storage place one time and the sign out front read "Too much stuff? Store it here. First month's rent is free!" 

My first thought was that I would give stuff away before I had to pay someone to store it for me. If you're moving that's different but I personally don't want to own more stuff then I can keep at my own house. Paying someone to store my junk doesn't make sense to me. And I don't know if you've noticed this or not but these storage facilities are going up everywhere! We live in a culture with so much extra. 

We find ourselves with extra things that need storing. We see the sign "first month free" and we find our solution! 

BUT THEN comes the sneaky part. As soon as that first month is over they start charging your credit card to pay rent on the unit. You see the charge on your card and say to yourself "I've got to go through that storage unit and get rid of stuff and not pay any more rent." 

And you do that for months....

As I was musing over that The Lord spoke to me and said that is what we do with our emotional junk. We aren't willing to part with old wounds, aren't willing to forgive, aren't wanting to let things go that we were never meant to carry. And so we store it. And the enemy tempts us and says it's okay...the first month is free! 

And it seems like such a good deal so we do it. "I'm mad at so and so and they don't deserve my kindness." We decide to hold onto something. And at first it's fine. No big deal. It's "free". 

Ya see, each of us has our own storage unit full of past hurts, unforgiveness and wounds. And every once in a while we are reminded that we are "paying" for them. Something happens that reminds us of what's in the "storage unit".  And we promise we'll deal with it soon so we don't have to keep on paying that rent. 

And we do that for months....or years...

See where this is going? This next picture might make you chuckle. 

Jesus wants to come in and help you clean out your storage unit. He wants to go through all that stuff that's been packed in there for years.  Sort through what is to keep and what is to dump. And He sticks with you throughout the whole process! It's like Clean Sweep! Remember that show on TLC several years ago?! 

He says in his word that His yoke is easy and His burden is light.  If you are feeling weighed down by the world then maybe it's time to let Jesus into your storage unit and help you clean it out. And stop paying the enemy to store your junk! 

Have you been paying the enemy to store your junk and saying to yourself "I'll get to it later"? How can you begin to take steps towards a "Clean Sweep"?

The Dreaded TeeShirt Drawer

By Tiffany Bleger

So, my dear husband likes tee shirts. A lot. Plain tee shirts, colored tee shirts, tee shirts with business logos, tee shirts with funny pictures, tee shirts with sports teams. I counted them one time. And just shook my head in amazement. 

The tee shirts go in two drawers in the dear husband's dresser. When we first got married, we quickly realized that we had two very distinct tee shirt folding styles. And those two folding styles were, more often than not, completely incompatible with each other. So, I would wash the clothes and fold them. When I would put them away, I would put them in the drawer "my way". Any shirts that were in the drawer folded "his way" would get refolded to "my way" and stacked with the others. 

This method had the potential to work perfectly... if only the husband didn't wear the tee shirts. 

You see, the husband actually likes to wear the tee shirts. So he would rifle through the drawer, looking for "that one", messing up my perfectly aligned stacks. If he refolded any of them, they were folded "his way". Have you realized yet that "his way" equaled wrong in my mind? Other times, the shirts were just shoved back in haphazardly, which was only slightly worse than folding them "his way". So every time I did the laundry, I ended up refolding and reorganizing his tee shirt drawers again. 

This process became so annoying and tedious that I began to dread the laundry. I began to harbor resentment against my husband. I began to believe lies like -

"You know, if he appreciated you, he wouldn't do this."

"He doesn't see how hard you work around here. You're invisible."

"He doesn't respect you. You don't matter." 

It got so bad, I stopped dealing with the drawers all together. I would fold his tee shirts and leave them stacked on top of the dresser. If he put them in the drawer, fine. If he didn't, fine. I wasn't going to deal with it. And I wasn't going to acknowledge the obvious lack of communication that was occurring either. 

Fast forward a few years. I'm browsing Pinterest, wasting time, when I stumbled across an article about folding tee shirts. I clicked on the link, not expecting anything. But what I found started a new process of communication in our marriage. The method taught by the website was different than my method, and different than his. It even had you stack the tee shirts in the drawer differently. The more I looked at it, the more I thought it just might work, if I could convince him to go along with the plan. 

But first I had to talk to the dear husband about it. 

Neither of us like confrontation. We were both raised in families that did not deal with confrontation well, and so we both took the "don't rock the boat" mentality. It was easier to harbor bitterness and resentment than actually face and deal with the hurts we caused each other. 

Guess what I found out when I finally talked to my husband? When I told him how frustrating it was to be continually folding and refolding laundry? How unappreciated and invisible it made me feel? 

I found out my husband wasn't a mind reader. And neither was I. 

He had no clue why the tee shirts had started being left on the top of the drawer. He had no idea  how frustrated and alone I felt. 

We talked about that dreaded tee shirt drawer. We talked about this crazy idea I had to do something completely different. We talked about talking to each other. About really being honest. About sharing our needs, our desires, and our hurts without making assumptions about the other person. 

And we folded the tee shirts. 

Today, when I open the drawer, there's usually a few haphazard shirts. But they don't bother me like they used to. I refold them and stack them, knowing that it excites my husband to be able to see all the tee shirts at once. And I'm at peace knowing that I can take my wounds and fears to my husband in safety. 

You see, it was never about the tee shirts at all. It was all about the communication. 

Messy Stalls Equal Life

By Jill Palmer

Just when you think God couldn't speak to you in a more hilarious way ... 

BAM. He speaks through poo. 

Poop, waste, manure. Yep. He spoke a word to me through this very delicate subject.

I was going through another rough day/week/month/experience. It's hard to pinpoint exactly what I was going through when He spoke this but I know it was during a prayer time with the staff of our church and I was asking God about the messes. The messes in my own life, in my family, in my church. Messes in general just seemed to be popping up everywhere and He spoke so clearly to me and gave me hope and peace in the midst.

My conversation with Him went something like this:

God, why are there so many struggles and messes? What are we supposed to do about them? How can we avoid them? It stinks! 

Imagine a farm filled with animals. Do you see the mess?

Ew. Yes. Lots of animals. Lots of mess.

How do you suppose you can avoid the mess?

Well...you can't unless you stop feeding them. If you stop feeding them they'll stop pooping. Then there will be no mess to clean up.

And what happens if you stop feeding the animals?

They die.

Yes. They'll die. Messes are a part of life and messes are an indicator of life. Every living thing that I have created makes a mess. Everything has waste. If you stop feeding yourself, your family or your church, the truth is there will be no more messes but they will also die. To avoid mess means to avoid life and that's not why I have put you here. You can embrace the mess and see it as a sign that someone is being fed and is growing or you can fear it and avoid it. Life is happening and I am excited about that. Your job is help clean up the mess and continue to feed those around you with the Truth I have placed in your heart. 

Not too long after God and I had our little "chat," I was told about a Proverb that talked about this very thing. And not too long after that, I ran across it while I was doing my devotions. God really can speak through anything! And I love that He spoke to me and then confirmed it in His Word. My Spirit soared and laughed as I read these words:

Life in general is messy. Life in a community, a herd, a church - whatever you want to call it - is messy. Mess comes as people grow and learn new ways of relating to others. Mess comes as old wounds get reopened and we respond. Mess comes when we learn to be vulnerable and navigate safe new places and people. Messes just happen.

Poop happens.

And it's okay. As the Proverb says, without oxen the stable is clean, but the ox is needed for a large harvest. The people and the poo/mess they/we bring (mine very much included!) is necessary for life and growth and a large harvest.

I'm choosing to embrace the mess, yes even embrace the poo and the messy stalls. As God has so gently shared with me, it equals life, and life in Christ is what I desire for myself and others.

How do you respond to the mess in your life? Can you see it as a sign of life instead? How has God spoken to you in an unusual way?

Relax. He Knows.

By Jill Palmer 

A while back I was homeschooling my oldest and we were working on math. He's always been good at math and has understood it very quickly. While that's great, it has also presented a problem. He's now getting into a kind of math that isn't as easy to understand right away. I believe he will eventually get it and do well, but it will take a little more practice and time. I see his skills and believe in his ability to excel in this.

As we were sitting together going over the problems he had gotten wrong, he was overwhelmed with how many he had messed up. He reacted so strongly to this disappointment in himself that it kind of caught me off guard. I wasn't upset at all that he'd gotten some wrong, nor did I have the expectation - spoken or unspoken - that he shouldn't have any trouble at all.

In fact, I was the opposite. I knew it was difficult and would take some practice to understand. It would also take patience and persistence - as well as good handwriting :) I was fully prepared to be going over many problems with him.

Somehow he didn't believe me though. He was still thinking he should've gotten everything right on the first try. Eventually there were tears and storming off. And I just stared after him in awe, wondering what had just happened.

While I stood there, jaw dropped, I felt the Lord say to me, "Does this seem familiar to you at all?"

As I thought about it it was absolutely familiar. My son was acting like me. And I was feeling how God feels. Boom.

How often has God given me an assignment, a calling, and because I didn't get it right away or succeed in the way I thought I should have been able to, I've stomped off in frustration with disappointment all over my face? Too many times I'm afraid.

And I feel like God has quietly stood watching, thinking "I know she can do this. I know it will be hard but I believe in her ability to accomplish this. It will take some hard work and some perseverance but I know she will excel. Why does she think she has to be perfect right away? I've never condemned her for her set backs, never yelled at her failings. I've only encouraged and trained. Why doesn't she believe me? I am fully prepared to walk through this with her and help her along the way."

I am blown away at how God takes a situation with one of my children and overwhelms me with His heart, His love, His tender kindness towards me. In a way that I can totally relate. He's so patient with me, His often-stubborn, doubting, smart, capable daughter.

                            

There is Power in Vulnerability

By Jen Kline

I am writing today about this word because I believe it is about to change my life. Let me explain.

Growing up it has always been very hard for me to be vulnerable. At some point in my childhood I made a decision that the world around me was not safe and that I needed to protect myself. Protecting myself meant I could not be vulnerable, especially around people. So for years I found ways to avoid being in a place of vulnerability.

I would ignore conflict. I would suppress feelings. I would avoid certain relationships. I would distract myself with being busy and producing and being very involved in anything I could get my hands on. I worked hard and often. I filled my social schedule with anything I could put in it. I did everything big. I even filled the air with my own voice, talking so much in the hopes I could drown out anything that would tell me it was OK to slow down enough to be in a vulnerable place. Sounds exhausting doesn’t it? Well, it was, but let me tell you that what I did as a child and the things I did to protect myself were healthy for me. It was a natural way for me to process all that was happening around me and I’m thankful for it. But 43 years later, it’s exhausting. I’m done. Cashed in. I can’t do it anymore.

This is a new season of facing the vulnerable parts of who I am and this life I have and it’s time to move forward in a way that is good for me. In a way that is real to the people around me and in a way that is honest about my journey with God.

With this journey I am on The Lord is revealing so much to me as I’ve slowed down. He’s spoken beautiful things, brought back precious memories and allowed me to feel a wide range of feelings I was avoiding for all of these years. Often when I am in this place I look to Jesus to see His response to the very human things we deal with, the very hard things on this earth. And I had this thought; When I watched my husband play Jesus in The River Church’s production of The Passion Play, the hardest part of that story for me was when Jesus the Creator of heaven and earth is standing before Pilate and every one is yelling at Him and there is this question as to whether or not they should pick Barabas or Jesus.

My heart aches at this moment every single time. I’m thinking to myself, JESUS! You are GOD! Stand UP! Fight! Do some kind of amazing miracle to save You from this awful fate. Stop them. Change their minds… yell at them! Hit them, run away, and tell them why they are wrong. Tell them who you ARE! Do whatever you have to do to defend Yourself! But He doesn’t. He actually never does. He’s vulnerable. One thing I know about Jesus is His absolute confidence and connectedness to the Father. And I realize the two ingredients Jesus had to always be in a place of vulnerability.

The first is that He was never ashamed of Who He was or what He was there to do. He was present in every moment on earth. He wasn’t distracted or confused. He knew exactly why He was healing, speaking against the Pharisees, challenging the law, and doing things on Sabbath days. He had no shame.

The second is that He knew He was not alone. Even when He begged God to take this cup from Him I believe He knew that God was with Him. He was fully aware of God's presence with Him each and every moment.

If there is power in vulnerability, imagine what that would look like in our families, in our friendships, in our relationships with friends. What if our language and our conversations with our kids were more compassionate and vulnerable? What if we could actually tell our kids that we were having a hard time feeling some emotions, or even cried in front of them? What if we told our husbands the parts of our hearts we’ve been hiding? What if we could tell our friends that we are having a hard time with our finances or that the thing they said to us the other day hurt us? How would we impact each other? How could we impact our community? We wouldn’t have to win all the time; we wouldn’t desire so much control over other people. We could “name” what we were struggling with and let people know what we are about to say to them is very hard and difficult to our hearts. We could listen and we could love people despite their inability to know how to love us well.

It would change our lives.

It wouldn’t make life easier, but I believe that as we really pay attention to the sadness and the difficulties, we would also experience a richer, more vibrant joy in powerful vulnerability.