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"

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?

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.

Stand

By Kim Beach

  “Stand on your feet.”  

                                                             Daniel 10:10

I am a soldier. I am part of an eternal army. The Commander says, "Go!" I go.  And when He says,"Stand," I also obey. 

Standing gets wearisome. My muscles ache for action. The sword gets heavy. My biceps long to stretch out and lash the air. My thighs struggle against the weight of my body, longing to spring into action and sprint into battle.   

The small of my back seeks to stretch, bend, push against the weight of the world. My arms quiver under the weight of the shield. The helmet of truth is hot and heavy and my tongue pushes against my teeth, longing to shout out in a righteous war cry. My feet are wrapped in readiness to run into battle.

But I stand. Fully dressed. As the Commander as decreed in the Battle Plan of Ephesians 6:13, I take my stand.  

Silent. Fighting against my will. My flesh. Battling the very nature that the Commander has placed in me; He requires self control.  

The enemy roars.

From his battle line he paces, spewing vile defamation. Accusations. Curses against my leader. Baiting me to battle.

I stand.

The enemy draws closer. I can feel his spit on my brow as in desperation he curses me.

I do not move.

The enemy begins to tremble. The tried-and-tested tactics of the Bully do not work. I am not baited.

I wait for the Battle Commander to blow his trumpet! With sweat in my eyes, the iron taste of blood on my tongue, muscles primed to strike, I wait for the enemy to draw near.

For the Commander is nearer still. And His whisper is greater than the shouts of the accuser.  

Nothing frightens the enemy more than an army he cannot predict, manipulate or conjole.

I stand. Ready. The enemy will be defeated in the timing, on the day the Commander decrees if I obey His battle plan.

The enemy I fight most resides in my helmet - my mind. That tells me I am alone. Everyone else has fled. No one stands with me. My vision is obscured from my helmet but I dare not look left or right. I steady my mind with this firm resolve - I will not run from battle nor will I run before I am called.

I am a soldier in the army of the my Lord. I do not stand alone.  

He stands with me.

Drawing Back the Bow

By Tiffany Bleger

My oldest daughter has spent the last year or so slowly learning the sport of archery. Never having shot a bow either, I found myself in the position to learn a completely new skill in order to teach it to my daughter. It has taken a considerable amount of grace and patience on both our parts, but she is learning to enjoy this new sport she has discovered. 

A few months ago, I was reading in Psalms and stumbled across these verses:

I could see in my mind's eye my daughter, grown, releasing arrows into the sky with skill and confidence. Releasing her destiny. When children are ready, they will be released from our homes like arrows from a bow, full of power and strength. They have the capability of flying straight and true to their appointed destiny. 

As I was mulling over this image, Father asked me what it takes to release an arrow properly. He and I discovered together four aspects of an excellent archer: patience, concentration, strength, and tension. All four are required for an arrow to fly to its greatest potential. 

Patience:

It takes time to place an arrow in the string, to line up the target. It takes composure and self-control to wait for the wind to blow in a favorable direction, for your heartbeat and breathing to settle down. An arrow shot out of wildness or agitation will not fly as consistently as one released from calmness. 

Concentration:

A key component of archery is laser-focus on the target. You have to be able to see exactly where you want that arrow to hit, and nothing else. Your arrow follows your eye - if your attention is pulled to anything but your target, that is where your arrow will fly. 

Strength:

It takes tremendous muscle strength to draw the bow back and hold it steady while aiming. Even a child's training bow can weigh 20 pounds. You do not build that strength overnight. It takes consistent repetition to train your muscles to pull the bow back to its optimum tension. And that optimum tension is what gives the arrow its speed. 

Tension:

Oh the tension! The facet of archery most would like to forget is the most essential. You can have the other three aspects, but without the tension, the arrow will not fly. The speed at which the arrow will fly is directly proportional to the amount of tension with which the archer draws back the arrow. Little tension equals little flight. Full tension equals full flight. 

We were in the midst of a difficult situation with one of our daughters when Father taught me this lesson about archery. I found such hope in the realization that all four, including tension, were necessary for my little arrows to fly straight someday. It gave me such courage to continue to persevere with the girls, that the hard work and training would see a reward. 

And then Father stopped me dead in my tracks. 

"My daughter. What of the situation I've placed you in now?" 

The "situation" is a struggle we have been battling in my husband's business for the last five months. Some aspects of this struggle have come about as consequences of our choices. But other aspects have been completely out of our control. And it has been incredibly difficult to get up every morning and continue fighting. To continue hoping and believing the promises in spite of the struggle. 

"My daughter," He said to me, "I have allowed you to remain in this situation. You have dreams and passions that I have given you both. But those dreams will not be realized to their full potential unless you allow Me to draw back the bow. Will you show the patience, concentration, and strength needed to release your arrows? Will you allow Me to extend the tension to its tightest, and release only when I know you're ready? If you are done, if you truly no longer want this, I will allow release. But know that when you make the choice to release, your arrow will not fly as I have calculated. The arrows I've designed for you will fly their best when you allow Me to hold the bow, when you allow My strength to draw back the string, when you allow My patience and concentration to focus on the target, and when you allow the tension I have designed to hold the arrow back until I decide to release the arrow."

And here we find the crux. We each have dreams, arrows we want to see fly. Are we willing to let Him hold the bow? Are we willing to submit to His strength, or are we trying to pull back the draw on our own? Is our concentration solely on Him, or are we allowing distractions to pull us away from our target?  Can we be patient and wait for His timing? And are we willing to feel the tension? 

By Faith, Not By Sight

By Jill Palmer

There was a time that my daughter, Kate, and I were at one of the several therapists we have seen over the years for her sensory issues. This therapist was fabulous and we learned a lot from her. The fact that she was a believer was even more of blessing because she helped us to see how God had created our bodies and how He was at work healing them.

One of the things she shared with me has had such a profound impact on what I understand about my life with Christ. She was working one day on Kate’s hearing and her sight and explaining how they work together to interpret the world around her. She then said that if she ever had to lose either her sight or her hearing and she had a choice, she’d rather lose her sight.

It startled me at first to think about that. I admit that I’ve pondered that question before but I’d always picked my sight as something I’d wanted to keep. Mainly because the thought of going around in the dark scared me and made me feel less in control. Why would I want to lose it?

She went on to explain that our eyes can only see what we’re looking at. You don’t really see what’s in your peripheral until something draws your attention that way. You can’t see what’s behind you either. Only what is directly in front of you. Your eyes alone don’t tell you the whole story. It’s very limited.

 

Our ears, on the other hand, can tell you where you are in a room. It’s truly amazing. For example, without looking (I can’t close my eyes because I’m typing but I can tell you what I hear and where it is) I can say that my washing machine is running just off to the right of me and slightly behind me. It’s fairly quiet to my left. My dog is snoring at my feet. My keyboard is clicking right in front of me. My home phone just rang but I can tell it’s in the other room. I hear my kids every once in a while laughing from downstairs. With all of those sounds I can tell exactly where I am in my house – at my computer. 

If I could block out all sound and rely only on what I can see in this moment, my world would consist of a computer screen and nothing else. My sight is very limited.

The same is true in the spirit world. If we only rely on what we can “see” then we are left with a very limited view. We need to close our eyes for a moment and “hear” what is around us, what is true, what God is speaking. And when we do this we will be able to “see” where we are and know that we are in the midst of His hands.

The Bible says to walk by faith and not by sight. Physically and spiritually, walking without sight is difficult. It can be scary. It takes getting used to. But it can be done.

Oftentimes we become so overly focused on what we see that we forget to listen to what is around us. Instead we need to close our eyes and listen intently. I believe when we do this we can hear God more clearly. We can pay attention to His still, small voice and marvel at the exact place He has us. 

Have you felt like God wasn’t speaking? Are you overwhelmed by what you see in front of you? Take heart. Close your eyes and hear the Lord’s whisper. Close your eyes to what you physically see – not out of ignorance but out of trust. He is there reaching His hand out to not only guide you, but to comfort and shelter you as well.

Be a Tree

By Tawna Wilkinson 

 

One morning, late in spring, during a very dark period in my life, I was blankly staring at an apple tree just outside my dining room window. The morning sun had just peeked over the mountain and was glistening on, and rustling, the leaves. 

But I wasn’t focused on the tree, or the beauty of the morning, as much as I was fixed on a raw, painful thought: What does a person have to do in order for transformation of the heart to actually take place?

A couple of months prior, I had been on staff as the children’s pastor at the church I was attending. I loved the children and the ministry, and was zealous and passionate; working many long hours in order to bring about the vision God had given me. In fact, that was the story of my life, in and out of church, as long as I could remember. 

My family of origin’s motto was work hard and do a hundred percent at all times, carrying with it the connotation that hard work brought about one’s value. The denomination I grew up in taught that if Jesus had really transformed your heart you would do, do, and do for Him, because that’s what loving Jesus looked like. 

And I did love Jesus. I had come to Him at a young age, and wanted very much to please Him.  So, my modus operandii was full throttle, no matter what, especially when the kingdom of God was involved.

But deep below the surface of my hardworking zeal was a yawning, cavernous void I kept trying to fill with all the activity. I was desperately trying to muster a sense of worth. I had no idea I already had value…intrinsic value, simply because God loved me and created me; that my worth had never been contingent upon any activity; and that transformation of my heart was a simple, yet extravagant transaction: God sending His love to me, and me receiving it. 

So, I stayed with what I knew until I burned out and drove the ministry in the ground.

Needless to say, the next months were spent in a counselor’s office unearthing all kinds of ugly, pain, confusion and disillusionment, while wrestling with the belief that I did have value, and learning how to love myself enough to receive the love He was sending right where I was at.

So that morning, pensive with the question and vacantly staring at the apple tree, God spoke out of the quietness: “What does a tree have to ‘do’ in order that photosynthesis takes place?”

“What?”

“What does a tree have to ‘do’ in order that photosynthesis takes place?”

Refocusing my gaze on the sun rustling the tree’s leaves, I intelligently replied:

“Uh…receive light?”

“Exactly.”

Boom.  I knew I had heard.  My mind and spirit were racing with the information welling up in me.

Photosynthesis:  “The process by which chlorophyll-containing cells in green plants convert incident light to chemical energy and synthesize organic compounds from inorganic compounds, especially carbohydrates from carbon dioxide and water with the simultaneous release of oxygen.”  (The American Heritage Dictionary)

Bam.  Photosynthesis: The miraculous process that transforms the light the apple tree’s leaves receive into food energy, instigating internal assimilation, and vitality throughout its system, and then, as a mere consequence, releases oxygen into the atmosphere.

In other words, life happens inside the apple before life emerges from it.  And the only thing it has to “do” for that to take place, is receive light through the chlorophyll-containing cells in its leaves.

He spoke, again.

“Simply be a tree, Tawna.”

In that instant, I realized my value was innate, simply because Love loved and created me. And that all the activity I would I ever need to “do” in order that genuine transformation of my heart take place was simply receive Light through my “chlorophyll-containing leaves”… my love-designed, heart, mind and soul.  Then He would miraculously do the “doing” in me…as well as outside of me.

So, my encouragement to you?  Be a tree.

God's Beautiful Reminders

The heavens proclaim the glory of God. The skies display his craftsmanship. (Psalms 19:1 NLT)

 

Everywhere you look it's beautiful, white, clean, pure, still, calm....

Trees take on new shapes. Their bark contrasts so vividly against the brilliant white snow that outlines their delicate branches. 

If you go outside you may notice the quiet that comes with the stillness of the snow. It muffles sounds so it seems even quieter! It's a gentle, peaceful, soothing quiet.

Much like the Creator of the snow. He comes and blankets us with His righteousness. Covering us with His sacrifice, we look pure and beautiful. 

His Presence brings a gentle, peaceful calm. A stillness unmatched by anything this world can offer. We look different. We feel different. We are different. All because our Savior comes and makes us new.  

And then He reminds us of this through the physical world He's placed us in. Truly the heavens declare the works of His hands.