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 Administration of Reconciliation

By Tawna Wilkinson

    

The other day, I had a hard and messy conversation with an individual regarding their dissatisfaction with the church, and what they felt was wrong with it. The truth is I was hurt and very frustrated, as this wasn’t the first time I’d been approached with the same thing.

However, after I allowed myself the shabby process of sorting out my raw emotions with God and my husband, the Lord reminded of II Corinthians 5:17-21:

“Therefore, if anyone is in Christ, he is a new creation; old things have passed away; behold, all things have become new. Now all things are of God, who has reconciled us to Himself through Jesus Christ, and has given us the ministry of reconciliation, that is, that God was in Christ reconciling the world to Himself, not imputing their trespasses to them, and has committed to us the word of reconciliation. Now then, we are ambassadors for Christ, as though God were pleading through us: we implore you on Christ’s behalf, be reconciled to God. For He made Him who knew no sin to be sin for us, that we might become the righteousness of God in Him.”

I realized if things were the way He intended in the beginning, there would be no need for our administrating reconciliation. For when things are reconciled, they are back to the way they were created to be.

When Christ was here He waded through enormous dysfunction with people’s perceptions of what He needed to do to make things right – in the synagogues; with the Pharisees and crowds; with the twelve men He hand-picked to journey with Him; even with his mother and siblings. And though Scripture doesn’t give much detail about His childhood, I can’t help but think there was a lot of muddling He had to endure just being a kid and teenager.

We want things to be neat and tidy; to be okay. And more times than not, I think that means, the way I want them to be. We hate the groaning our spirits, bodies and souls experience when we perceive things are not the way they’re supposed to be. And the last thing we want to do is stick around and engage in the hard work of restoration.

 Several years ago, a wise young man said to me, “Relationships are messy, and no one wants to get involved in them.” He was right. It’s obvious. When things don’t go the way we want, our first reaction is to bail…. don’t stick around and muddle through the mess and confusing in-betweens. It hurts. It’s hard. We have no promise that we’re going to see resolution. And what’s worse, we have no control over the outcome, let alone another’s choice.

I completely understand. I’ve bailed more times than I care to admit. I’ve thrown my hands up in frustration umpteen times, “knowing” for certain things are never going to change. But if that is true, then this passage of Scripture isn’t.

So today, I am actually thankful for the individual approaching me. For although the issue was not resolved, I now see I was presented with another opportunity to use my “ambassador muscles.” God, and this person, trusted me with part of the messy process of bringing a piece of reconciliation to this beautiful, broken and messy world. And I am glad I chose to engage in it.

A Walk In The Dark

By Tiffany Bleger

Have you ever taken a walk in the dark? 

I'm not talking about a stroll downtown under the street lamps. I'm talking pitch black, middle of nowhere, only the stars and moon as your light dark? It's intimidating. You don't know what's out there. It's really hard to see your path. It's easy to stumble and fall. 

The Bible tells us that each of us made this walk before Christ entered our hearts. We were stumbling in the dark, desperately searching for any path that worked. We tripped and fell. It was hard, it was scary. It hurt. 

And then He came. The Word Made Flesh invaded your personal darkness. 

And He brought you light. His light shined in your darkness. It lit your path. 

Do you remember that feeling, the first time you felt like the darkness would not consume you?

If you are anything like me, that light gave you a thrill like no other. You felt like you could fly. You felt like there was nothing that could hurt you again. And so you began to run. In the dark. You had the light now, nothing could stop you. 

But there was a learning curve. That light didn't shine on every corner of your darkness, did it? It didn't illuminate every crack and crevice. It didn't make the world around you as bright as day. You could see the path in front of you, but there was darkness beyond that circle of light. It was like a flashlight, and you began to learn an important lesson. 

Do you notice what Father revealed to the psalmist? A lamp unto my feet and a light unto my path. I picture coming down a hiking trail at night. You have a flashlight to illuminate your next few steps. You have the lights of town that reveal your destination. But, in between, there is darkness. 

In this journey called life, we have a guide. His name is Jesus. He will, if we ask, illuminate the next steps we should take. We can see the pitfalls and avoid them. He also shines the light of our destination with Him, that dream or vision He planted in our hearts. But the in-between is darkness. 

He doesn't light the whole path. 

This fact, to me, is frustrating. I struggle to stay within that small circle He has illuminated for me. Boundaries annoy me. Not knowing annoys me. And so I wander outside the circle, into the darkness. And I trip. And I stumble. But when I call out, Jesus is right there to pick me up and dust me off. And we start again on my path. 

If I am diligent to stay on the path He is lighting, my walk is easier. It's not easy, but it is easier. There are still things to avoid and obstacles to overcome, but it's not nearly as hard as when I stumbled by myself in the pitch black.  

It is possible, this walk in the dark. He promises to walk with me, to light my steps. And I can choose to trust Him and stay in His light. And I can look forward to His promises, to my destination He has chosen for me. 

Can I trust that the darkness in-between, the parts of His plan I can't yet see, are not as scary as my imagination tells me? Can you?

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!

Flowing in Grace

By Nancy Turley

"The clearest evidence that God's grace is at work in our hearts is when we do not get into a panic."  Oswald Chambers

“Learn the unforced rhythms of grace.” Matthew 11:28-30 (The Message)

The word I felt God gave me for 2015 was “Grace.” I love that word. I love the concept. My name, Nancy, means gracious. It’s a trait I am growing into. I wondered if one of the reasons God gave me this word for this year was not only that I needed to grow into it–to be able to give it more–but also, that I might need to receive it. For my birthday my sister Carol gave me a necklace with a swan on it because it was indicative of grace. Part of the description of the swan said that they were graceful. Though that applies to the swan much more than me, I do want to be "grace-full."

Recently a friend replied to a special request for prayer from me that she would listen to the Spirit as she prayed to “simply move to the unforced rhythm of grace.” It came as a hopeful admonition to me as well, as I loved this translation of “Come until me all ye that are heavy laden and I will give you rest…” in Matthew 11. 

This was a new take for me to think of moving in the “rhythm” of grace, and more so, unforced rhythm. One never knows what is around the corner, both good and bad. I wonder how the rhythm of life connects with the unforced rhythm of grace. 

There will be many times where we need to flex, where we need to flow like a river that navigates slow curve bends—those longer stretches of life. We long for answers and movement but do not get immediate replies.

There are other situations where we feel like we are pushed into a narrowing canyon while in a fast current and are suddenly just dropped down a waterfall chute. Where then is that unforced rhythm of grace when we feel we are out of control? How can we flow with the rhythm of life, and yet be in an unforced rhythm of grace?

Perhaps it is like being thrown overboard while canoeing or rafting. We point our feet downward, life jacket snug around our chests, and are navigated around the rocks by hands of grace. Instead of being forced out of control, while we are in the current, grace gently guides us around obstacles. We are buoyed by grace as we flow with the current.

I was actually in that situation once where a friend and I capsized from our canoe as we went through Class III rapids on the Colorado River. I remember being guided by others still in their canoes to go with the current’s flow and put our feet downward. About a half mile later, we moved from the fast moving water to slower water. As we flowed with the current, knowing others watched and guided us, we felt we would be safely rescued.

Perhaps that is how we accept God's grace and allow it to work in our hearts...instead of panicking, we choose to rest during those times we feel so heavy laden. We flow in that unforced rhythm of grace.

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"?

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.