Special Kids

The Blessedness of Bandaids

So as strange as it sounds, once upon a time, I was angry at a box of Bandaids.

A few years ago, My friend had sent me a wonderful care package, complete with food, fun, miniature animals…and a box of Bandaids for boo boos. They were cute and colorful and fun, if Bandaids can be fun.

It was one of the those boxes I looked at briefly then threw under the sink in my catch it all basket that got organized once a year and nearly never used.

And I thought to myself….’I never need to use Bandaids.’
And that made me sad.

I didn’t want to look at those Bandaids. Not because of the pain and boo boo it would cover, but because of the strange absence of boo boos.

You see, Kierra couldn’t walk, let alone roll over. She couldn’t pull things down on top of her (except for the mosquito netting that she managed to tangle in). She couldn’t pinch her fingers in the cupboard door or pull the cat’s tail or get a splinter from the wooden swing set.

Her socks stayed clean. Too clean. And there were not strays (except by my own making). Some days I would make excuses to get her a fresh shirt (and some days she would drool faster then I could think). Her shoes never wore out or had scuffed toes. Because she didn’t wear them. Her jacket was never torn from a hide out in the Rose garden. Even her mittens stayed way too clean and lasted for years.

While I didn’t want her to hurt or be in trouble or pain, I wanted the glorious normal of a messy life.

I wanted something other then boring sterile hospital Bandaids and gauze pads over lab draws for her.

I wanted dirty socks and holes in pants. Tonight, after we got home from an evening with friends, I was changing Kobe . His shoes were damp. His feet wreaked of sweat. And I delightfully changed them.

I will perhaps go down in record as the first person that delights in sweaty feet and holey jeans and dirty jackets. In missing socks and a child that screams bloody murder when I extract the tiniest splinter under the very first layer of his skin. And apply a gloriously cute puppy dog bandaid.

I love the dirt under his finger nails and the toe nails that are always stubbed short. The teeth that need brushing and the drinks that are handed into two tiny grasping hands. The very fact that he still wants me to give him bites of food doesn’t even bother me that much. Because I get to feed a child who TAKES BITES OF FOOD and CHEWS and SWALLOWS!!

Some times in the middle of the day, when he takes a tumble and is howling in my arms, I automatically check for broken limbs or bad ouchies and automatically think about dropping everything and heading for the hospital.

Then I remind myself. This is not Kierra. This is not an emergency. It never is with Kobe. And in the back of my mind, in some crazy way, I miss the adrenaline rush of totally focusing on a run to the hospital…(with a non life threatening emergency of course!)

So here’s my challenge to you this week when the dirty laundry piles high and the socks are all searching for soul mates.

Thank God. Thank Him for the miracle of a mess!!
It is a blessing.

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Special Kids

Silver Sandals

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In silver sandals she goes walking up those Golden stairs
And though we miss her so, we know she’s happy to be there!
She walks with us in memory. We see her all the time.
In silver sandals walking through our minds.

So many times we let our thoughts turn back to yesterday
To a little girl that could only watch the children as they played
She walks with us in memory. We see her all the time.
In silver sandals walking through our minds.

The grave in which she sleeps is cold but our thoughts of her are warm
And we cry as we both long to hold her in our arms
Each night in dreams we see her running to us, smiling sweet
With silver sandals on her little feet.

She asked for sandals from the time that she could talk
(I think she would have!)
And it would break our hearts when she’d ask us why she couldn’t walk
She’d say, “when I get to Heaven can I change my crutches (wheelchair) then
For a pair of silver sandals at the rainbows end?”

In silver sandals she goes walking up the golden stairs.
And though we miss her so, we know she’s happy to be there.
She walks with us in memory.
We see her all the time. In silver sandals walking through our minds.
-Dolly Parton

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I can’t wait to see you in your dancing shoes, Kierra!
Twirl and dance today!
I know you are so wonderfully happy living the dream we are all longing and waiting for!

This morning, the song Silver Sandals echoed in my mind over and over. I took her little dancing shoes from Christene outside into the morning light. It was just peaking over the old red barn across the road, and kissing everything with its gentle glow. It reminded me of Kierra. Pure and fresh. Soft and pink.

I dream of her a lot right now. Mostly I care for her in my dreams. No matter how much I wake up missing her, I know without a shadow of a doubt, that she is so much happier now. It’s very hard to get my mind around the fact that she is walking and talking. Dancing and singing. I always thought I had a big imagination, but when something so personal has changed so drastically, my mind just can’t reach it. It just shuts down for a bit. I like to surround myself with positive thoughts and images of what she may be experiencing, because although I know she is completely healed and happy, I just can’t quite imagine her running yet. Maybe someday…until then, I will stroke her little dancing shoes and believe in the dream!

I trust that God is good. That He is LOVE. Because He cannot be anything else. This life hurts. It is gut twistingly hard sometimes, but I hang onto the fact that even if God does not explain Himself and what He allows to happen, He leaves us a promise.
(Thanks to a message by Gary Inrig for inspiring me in these thoughts.)

“I will come back, and take you to be with Me that you also may be where I am.” John 14:3

“For the revelation waits for an appointed time…
Though it linger, wait for it!
It will CERTAINLY come.
And will not delay.”
Habakkuk 2:3

Whatever you are facing today….just know that although God does not give explanations ….He gives Promises. And since He cannot lie, we can trust that He is who He says He is. He will do what He says.
And He loves us beyond all doubt.

Special Kids

The Story Behind Our Wildflower Girl

For those of you who have not been following Kierra’s story and may wonder about ‘the wildflower child’ connected with her name, here is a tiny run down.

Kierra entered our world in the wee hours of a July morning, in Missoula Montana. She was perfection in the tiniest form.

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 I was wheeled into the recovery room, glowing with the satisfaction and elation and exhaustion of a brand new mommy. Outside the big hospital window, a brand new day was breaking. Bright against the brick wall, all by it’s lonely self, a wild flower lifted it’s delicate, brave, beautiful face to the sun. A little thrill struck my heart when I saw it and I thanked God for putting it there. For letting it grow out of bounds and be so uniquely beautiful. That wildflower never left my mind.

We brought Kierra home to the tiny town of Gold Creek, totally naive to everything she would face in her three and half short years.

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It wasn’t until three months later, that we discovered she was having seizures. This began her long journey of health complications and multiple moves. we are currently living in Pennsylvania.

Through it all, the wildflower stayed in my heart. Our daughter was our wildflower. Out of the estimated 7 billion people in the world today, she was diagnosed with a disorder found in only around 30 individuals that are currently living. She was Rare. And beautiful against all odds. This song expresses it so well.

(thanks to David and Sherri Phelps and apologies for changing a pronoun)

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She was like wildflowers in the springtime

She never cared too much about where she grew

Her time was brief, but filled with vibrant passion

Then she rode a breeze away

as wildflowers often do.

She was like a daisy in the meadow

A welcome smile that’s shared between two friends

kisses, hugs, and laughters were her petals

and she gave them all away

until her season’s end.

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 My family made tiny little sachets of wild flower seeds to pass out at the funeral. I hope they get planted in unlikely places…for another soul that needs a bright splash of beauty in their lives. Maybe, just maybe our little Wildflower Girl up in heaven can look down this summer, and see splashes of beauty across the country side.

{{My computer is throwing me an ugly fit, so the rest of the funeral pictures, etc. will come after my ‘more techy then me’ wonderful man that sits and chuckles good naturedly at my mutterings and rantings fixes this beast. 🙂  }}

Special Kids · Uncategorized

Kierra Runs

How do you pack love into 24 hours? Enough love to last a life time? It’s totally, 100% impossible. Every moment seems like hours and yet passes in a breathe.

Knowing that Kierra likely wouldn’t get better was horrible. Watching her die brought on a whole new meaning of unbearable.

The crazy thing about it was the peace and strength that held us up when our hearts and lives were totally falling apart. I know, without a shadow of a doubt, that the same strong arms that are holding Kierra are the same ones that held us together that last day and also the ones that are holding us now. Even when the coldness creeps into your heart and seeps into all the tiny cracks and you think you will never be warm again. Jesus, our Creator, is still there. Forever and always.

I really have no idea what to write about that last day because it all blurs together in my mind. I am so thankful we had it though. That we could hug our darling and kiss her and tell her she didn’t have to be afraid and that Jesus was waiting for her. My family got to come see her one last time, and friends that meant the world to her came and gave her sweet little face one last kiss.

On Tuesday when I took her to the ER, I was expecting to have a belly X-ray done to check the placement of her feeding tube. She was breathing very rapidly, but she has done that before, so I wasn’t overly concerned about it. I still can barely wrap my mind around why this time, she got so bad. so fast.

The ER doctors ordered a Vaportherm for her. She’s been on this before. It is a higher, more forceful, vaporized flow of oxygen. After being on that for a few hours, she seemed more comfortable, but was still breathing as rapidly as ever, around 80 breathes a minute. (yep, that IS super fast!) They tried several times to get an IV in, but her veins always blew for them. Finally, a nurse from PICU came down, and with an ultrasound machine, she found a vein, and inserted a line. We were SO thankful! However, it was a very temporary vein, and had the risk of blowing at any time.

In order to get her breathing stabilized, the Respiratory Therapist tried putting her on a CPAP machine. This is an oxygen type mask that goes over the mouth and nose to provide additional oxygen flow and ‘umph’. She absolutely HATED it and would under no circumstances tolerate it.

You know your child is critically ill when your room is suddenly teaming with Doctors from all over the hospital and medical personnel and your ears begin to ring and the room gets stifling hot and you grab hold of the last shreds of your mind power that remains and tell yourself firmly, “GET HOLD OF YOURSELF.”

All I had to do was take one look at the Doctor’s faces to see the fine tension lining them. When Kierra’s kidney Doctor that we have known since we began her care in Delaware, stepped into the room I saw a new sadness around his eyes. There were actually TWO kidney Doctors there. Both wonderful caring physicians who have been so supportive and helpful. My mind felt like it was about 10 leaps behind what my eyes were seeing. I was seeing reality in their faces, but my heart and mind were still way back the road,stuck at the yellow light of ‘she is just a bit sick’.

That red light was actually flashing steadily. I just wasn’t ready to admit it yet.

The Critical Care Doctors took over and Kierra was rapidly whisked up to ICU. I still honestly had no clue how bad she was. Steve had tried calling me in the middle of the hubbub and I wasn’t really making much sense to him and told him I would call him back later.

Kierra LOVED the ride up to PICU. Arms thrown wide out, little head turning happily from side to side, she was thrilled with the whoosh of air over her face. No one was messing with her face or poking needles into her arms and feet.She didn’t care that she was causing alot of rapidly flying hands and feet. She was a little Princess, snuggly with her pink blanket, having the ride of her life.

I even attempted a little joke about it. The hospital staff glanced at me sideways. They most likely thought i was one loco mommy.  🙂

When we got to the quiet of the ICU room, the Attending Critical Care Doctor took one look at her and shook his head. He said he has seen this before. When children this young are working this hard to breathe, they literally wear out. She may last for two hours. Or overnight at the most.

Six hours after her first x-ray, a repeat x-ray showed a total haziness over her lungs compared to a bit of haziness at the bottom of her lungs. The infection was spreading at a deadly rate.

We had a really tough choice to make. If we wanted to give her a chance of survival, we had to move fast. I left the room to give Steve a call. I tried hard to hold myself together. To at least make sense, but my mind was spinning so fast, and that awful ringing was echoing in my head again. Steve hadn’t been  planning to come down for the night, but those plans changed really fast! I asked him if the Doctor could please talk to him, since I wasn’t sure how accurately I could tell him what was wrong.

The Doctor, a social worker, and I made a conference call to him in a small family room. It helped to hear it all repeated, slowly, in comprehensive language. The Doctor did an amazing job of being clear and concise and not wasting words. We had two options. keep her as comfy as possible, and expect her to likely pass away by morning, or insert a more stable central line into a main artery and give her a chance to fight the infection. They made it very clear that she likely would not make it even with a central line, but by having that line, they would have much better access in giving her antibiotics, pain meds, and blood draws. In order to put the line in, she would need to be sedated. In order to safely do this procedure, she would need to be intubated. ( put on life support) They also warned us there was a very good chance she would not be able to successfully come off the life support. Her lungs may never recover sufficiently to breathe on their own again.

The social worker was so wonderfully supportive and kept telling me she would be here with us to support us no matter what happens. Once again, my brain was screaming at her “Nothing is GOING to happen! You don’t know Kierra. She is a FIGHTER!” But my face just tried to smile and said “Thankyou!” because reality was staring me in the eyes.

We decided to put the central line in, and give her about 24 hours , then remove the breathing tube. That central line sounded very attractive to us. We didn’t want her to have to suffer, and since her IV line was so precarious, we didn’t want to risk the chance of having no access to her for pain medication. I was DONE with having her poked and pricked. I was not having it ONE MORE TIME anytime soon. With a central line, we were hoping to give her the best level of comfort possible.

The Doctors set the wheels in motion. I cried a bit on Carolyn’s shoulder and told her she could take our van home. Steve was on his way down, and I had alot of ugly, hard calls to make. I wasn’t even sure I could hold it together enough to make any sense on the phone. I imagined how this news would ‘ruin’ so many peoples nights, and I felt sorry for that too. I wished I could just crawl into bed with Kierra and make this all go away.

I never did muster the courage to call my family. I think God knew I needed a call from them. My sister, Karen called to see how Kierra was doing, and I broke the hard news to her with much more calmness then I dreamed possible.

Steve finally arrived and we walked down the hallway to Kierra’s room together. She was resting so peacefully, her breathing regulated by the breathing machine. She looked so comfortable and relaxed and I immediately noticed her cute little nose that had been covered with an oxygen canula for so long. Even with all the tape and the tube in her mouth, she looked absolutely darling adorable to me.

That night, Steve and I took turns staying with her. We tried to get a bit of rest because we had no idea what was coming the next day. She kept trying very hard to wake up and they had to give her sedatives often to keep her calm and comfortable. She would squeeze our fingers, and even open her eyes and gaze around. I snuggled up as close to her as I could for awhile and she rested well. As soon as I sat up, she started thrashing around, and fighting her tube. She was still very much aware of what was going on around her!

Dads. Joe and Mona, Jason and Karen, and Warren and Dorcas all came up the next day. It was a very tough, emotional, precious day. We sang her favorite “Twinkle Twinkle Little Star”.

A repeat x-ray did not show much improvement. We had a conference with Kierra’s medical team around lunch time.  There was little chance of her recovering. We knew God could still heal her if He chose to, but we didn’t want to keep her on the breathing tube as life support. Now that we had a central line, we felt we needed to remove the tube. We decided to do it around 7PM. That would give Kobe and anyone else time to come to the hospital to say Goodbye. Steve and I took a little break after the meeting and tried to grasp the reality we were facing. We were strangely both starving hungry. So hungry we were light headed. (Isn’t that just weird!) We went down to the cafeteria with Dorcas and Warren and ate enough to keep us going.

Linda and her girls brought Kobe down in the afternoon. The Child Life Specialists came by and did some fun painting projects with the children and took a mold of Kierra’s hand prints.

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We all helped to make a big family tree with our thumbprints. Kobe was thrilled with the finger paints and I know Kierra would have loved it too if she had been awake enough to talk! Painting was always one of her favorite things to do.

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Kierra was sedated very heavily part of the time, and other times, she would move enough to let us know she could hear us. She always loved her Grandpa’s special whistle he had for her. She stirred happily when she heard it. Just like this picture of her and her night nurse… she is peeking her eyes open, wishing she could give a kiss back.

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Sadie sang her a song and talked to her. Kierra gave her a little wiggle.

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Then way too soon, we had to help Kobe tell her Good- Bye.

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Kobe did so well with all the tubes and lines, but I could tell, deep in His eyes, that he was sad and felt like something was wrong. He prayed for her often!

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Mervs took him home and tucked him gently into bed.

The next hours were the worst of our whole lives. Our family waited for us patiently in the family room. It was torture for them as well. I was hoping for some grand lifting or revelation or holy experience at the end of her life. There was nothing except the hard sounds of her labored breathing, and the soft flow of tears from our eyes. I think I heard our hearts breaking too.

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At first, she did OK with her oxygen. And snuggled into our arms.last days 043

But after awhile, she became very agitated. It got to the point where we removed the canual and just kept a ‘blow by’ there to give her little poofs to help her settle. The nurse gave her morphine at frequent intervals. We were so thankful we could be in the hospitle with a wonderful medical staff to keep her comfortable.

We told her how much we loved her and that she could go to Jesus and didn’t have to be afraid.

It felt so horribly wrong. Holding your little three year old, with a whole room full of medical, life saving equipment at our finger tips. All we could do is weep and tell her over and over how much we loved her. We were letting her go. Because no matter how much we longed to keep her, we knew she would be so much happier.

My thoughts went all over creation in those three hours.I felt like leaping up and running away. A whole world away from this painful scene. My head was screaming at me to do something, but my heart was reminding me of another scene.

A scene where pain and love met thousands of years ago. Where God turned His back on His Son. And let Him die. So that New Life could be born. Jesus loved us so much that He died for us, with all our human sinfulness. And God let Him.

That just blows my mind!

It’s  the only reason we can be in heaven with Him and our Kierra someday. Surely I could trust the heart of the One who watched His very own Son suffer to death. It didn’t make any sense. It felt SO WRONG. But at the same time, it was the only love we had left to give our daughter.

The love of freedom. For ever FREEDOM.

So we held her through the last hours of her life.

When the nurse came in to reconnect her silenced monitors, we asked her when we would know that she was gone. Her breathes were coming farther and farther apart. Just when we thought she was gone, she would breathe again. We could hear the fluid, rising in her lungs. The suspense was brutal. The nurse kindly told us that when her heart stopped beating, she was gone. (amazing how the simplest facts elude you at times like this).

I had given Kierra to Steve to hold sometime in the middle of the three hours. I could tell that she immediately relaxed when she was nestled in his arms. It was where she needed to be. Where she wanted to be. her daddy was her Hero!

Now as her breathing became farther and farther apart, I laid my hand over her little heart. I was amazed at that strong little pitter pat that played against my fingertips. It was beautiful. Just as a mother never forgets that patter of kicks in the womb, so I will never forget that delicate pitter pat against my fingertips. It literally felt like music.

Then suddenly, with no warning. It was gone. And I whispered brokenly. “Run! Run to Jesus!”

And He took her up in His arms…

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I know she is safe. Forever. Even if we miss that sweet cuddly little girl.

My family and Merv and Linda came in after she had flown to heaven and hugged us and held her and wept with us. They even managed to sing a sweet song before they left for their own families, who needed them.

We were so totally weary, we could barely put one foot in front of the other. We left the daughter we knew all tucked into a clean bed, her hands sweetly folded one last time. The hospital hallway seemed endless and each step away from her weighed a ton, but we made it. Down the elevator. Out to the car. And crashed into a hotel bed a few miles down the road. We were too exhausted to even think of going home until we had slept a bit. We did sleep, although the reality hit us UGH! in the face again in the morning.

So many plans waited our attention. So many comforting arms and caring hearts. So many people that were the hands and feet of Jesus to us. So many acts of kindness were showered on our bewildered hearts. We can’t thank you enough.

The hurting isn’t gone yet, but I think the healing has begun.

It will take until Eternity to be completely healed, though! Because we were created for so much more then all of this life.

 

Special Kids

Kierra’s Last Weekend

It’s so hard to believe that a week has already passed since Kierra left us. It seems like yesterday, and like a year all in one hazy jumble. If I repeat myself through my blogs, I apologize in advance.

Writing is usually a therapy for me but how can sitting at a computer, tapping at a keyboard make a body and spirit weary? It’s amazing to me how tired grieving makes a person. It is hard work. Sometimes I just want to say “Yuck!” and sometimes I want to welcome the pain, because it means I can still feel.

I want to go back a bit to the last days of Kierra’s life and give you a tiny glimpse. On Saturday, we decided to leave the kids with Mark and Sadie while Steve and I went on a little date. They had given us a babysitting coupon for one of the 12 days of Christmas. (I wish I had taken a picture of every one of those 12 baskets, bags, and boxes of gifts to share with everyone. I will forever remember the kindness and love poured out to us in the middle of the cold winter. Especially because deep in my heart, I didn’t really feel like Kierra was really doing OK at the time.)

Back to Saturday. There was a beautiful snowfall over night and the roads were rather treacherous as we crept our way toward Mark’s house.  The children were all excited about being out and about, and so were their Mommy and Daddy! We dropped them off, with instructions about when Kierra needed meds. It was so good to know they would be very well taken cared of and loved up while we were out!

We went to a Farmer’s Market and drank coffee and bought chick peas and veggys and fruit. Ate at Olive garden, browsed Barnes and Noble (and drank more coffee 🙂 and dreamed and planned and sat in silence.

This is how I found Kierra when we returned to sadie’s house.

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Sweetly resting in a lovely hammock. She looked so comfy, I didn’t want to move her! But we bundled her up, scooped up her brother, and headed home. I chatted with the children on the way home, asking them if they enjoyed their day. Kobe was enthralled with a fire truck he had played with and Kierra wiggled her head and gazed her pretty blue eyes up in that “I LOVED it!” expression.

A few hours later, after we had gotten home, I was working in the kitchen when I felt like I needed to check on Kierra. You know when you have this 6th sense that starts alarming and you know something is either wrong or about to be wrong? Well, that’s how I felt when I turned from the kitchen counter to glance at her sitting in her tumble form chair on the floor.

I felt silly, checking on her when she was sitting so quietly right behind me. She was just so so so quiet, though. Her cheeks were flushed. When we had gotten home, a few hours ago, I thought she looked pale. Now she was red. And her arms were tightly folded up on her chest, her eyes in a rather starey downward position. All signs that she wasn’t feeling very well. I hurried over to her and felt her head. it wasn’t just warm. It was HOT.

The thermometer read 101. This is very high for Kierra. She normally runs low, so even a fever of 99 means something is wrong. I took all her clothes off, and wiped her face gently with a warm washcloth. I was afar id I would cool her down too fast if I wasn’t careful.  I wrapped her in a sheet and gave her a nice big dose of tylenol. In a few hours, she seemed to be feeling better. I watched her closely until her nurse came at 10PM but she seemed to be feeling even better, and her fever mysteriously disappeared overnight. I heard her ‘talking’ with her nurse that night, telling her all about the fun day at Sadie’s house. She would go on and on in her sing song cooey voice.

We were hoping to all go to church for the first time in weeks the next day, but when I saw Kierra, I knew it wasn’t going to happen. Her fever had returned and she was very uncomfortable. I kept her on Tylenol all day long, and we had a cozy relaxing day in our house.

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Oh wow! how I wish to go back to this ! 🙂

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She had an OK night, but the next day, her fever still hadn’t broken. In fact, it got higher then ever. I called to The Clinic For Special Children and they worked us into their schedule so kindly. This is one of the last pics I have of her and I. We got to wear our matching scarves one time. It was so very very special.Crystal had given them to us when we were in the hospital a few weeks ago. They are so soft and fluffy.

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They checked her out very well at the Clinic, running several test, but finding nothing alarming that should be causing a fever. Her lungs didn’t sound too bad. They started her on an antibiotic to cover the bases of possible infection. We went home again,feeling relieved, but still concerned.

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I’ll never forget Monday night. Amos and Roseanna (a couple from church) stopped by with some soup and cookies for us. I was holding Kierra in the big recliner most of the evening. She was still feverish and kept gagging/coughing. When Roseanna went out the door, she told Kierra Bye.

Kierra lifted her arm up in little wave. Believe me, kierra can be very stingy with her waves ! 🙂 But this night, fever and all, she was waving. Roseanna turned around at the door, came back in, and exclaimed over her waving and told her Bye again. Kierra was very pleased 🙂 She wiggled and squirmed and waved her arms some more.

A few hours later, I noticed her breathing had become very rapid. I was exhausted from the day, so Steve took a turn holding her in her room on the rocking chair. I hooked her up to her pulse oximeter. This measures the her oxygen level and heart rate. She was barely staying at 90% oxygen. I kept turning her machine’s flow up, but it didn’t really seem to help.

I sat on the floor, weak and beat. She needed help. But what could the hospital do for her that we couldn’t? They could give her a higher oxygen flow, but would all the stress of bright lights and commotion and probably IVs and blood work outweigh keeping her comfy at home? She WAS on an antibiotic. She had oxygen. She had tylenol and a comfy bed. We decided to stay home with her.

The night nurse came and I explained to her that she was requiring more O2 and had a fever. Again, nothing was too alarming. She had been this way before, but my heart just didn’t feel right  and I forced myself to go to bed, close my eyes and sleep. I needed energy for the next day.

Around 8:00 the next morning, Kierra started gagging, and vomiting a bit. She did it twice, and since she is not suppose to be able to vomit, due to a stomach surgery she had over a year ago, I was quite sure that something was wrong. There was always the possibility that her feeding tube was in the wrong spot. Her belly had gotten HUGE overnight. It felt to me like it was full of air. It looked so wrong. As soon as the Clinic opened, I gave them a call. They advised me to take her to Dupont, in Delaware for abdominal x-rays to check the position of the tube.

I hung up the phone, and sat there, holding my little girl, and I cried.

There is nothing wrong with tears. I actually admire people who cry easily. (i don’t mean to be cheesy 🙂 But honestly, I don’t usually cry over going to the hospital. It’s just ‘the next thing to do’ usually. Oh sure, I get shaky in my hands and my heart starts racing. It always happens. No matter how often we go. Partly because I don’t know what the Doctors will find. Partly because I’m afraid we’ll have to stay. Partly because I’m afraid they’ll send us home and not help Kierra. Partly because I’m afraid she’ll never come home with us. It’s just like this little ritual of thoughts that subconsciously runs in my brain every time.

After I had my healing little cry, I dried my eyes, called Steve and yep, bawled a bit to him too. I was SO WORRIED. Then I called Linda to let her know Kobe was coming and what was going on. She offered that one of her girls could ride with me to help take care of Kierra on the hour drive. I sat on the couch and looked at my messy house. At my slpeeing Kierra in my arms with a bed head and no clothing, and at the piles of laundry to do.

Then I did something else I almost never do. I called the next door neighbor lady and asked if she could come help me get ready to go. I felt that overwhelmed. usually I like to do things myself. I just love dressing my children, putting on their coats, and going somewhere. When I have enough energy 🙂

She was over in no time with her two little children and lots of cheerful energy. She dressed Kierra while I piled our laundry together, threw some supplies in bags, turned down the heat, and grabbed Kierra’s med list that I had just updated the night before. In no time at all, we were in the van, headed to Deleware.

I’ll have to finish this in another post. Otherwise, you may be reading a LONG time. Not to mention that I need a little break 🙂

So see you round, my friends…

Special Kids

Cozy

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We are cozy by the fire today. Kierra is unfortunately a bit too cozy. She sprung a fever last evening and has had one all day today. She doesn’t seem too sick other to be very sleepy and not very talkative.

On Wednesday she had an appointment with Dr. S. at The Clinic. He was very encouraging. Instead of stressing out about getting all her calories in every day with her formula, we are backing off a bit, but still keeping her hydrated. The pay off has been totally worth it. Instead of crying most of her awake time with discomfort, or gagging and wretching, she is much more comfy. It’s a fine balance to choose between calorie intake and comfort. She has lost a bit of weight and does not have as many wet diapers, but so far I think she’s OK.

This fever seems strange, but hopefully it’s nothing serious. Thankfully, we got her off a few of her medications last week too, so her schedule isn’t quite as crazy full of meds.

Yesterday, we redeemed a free babysitting coupon from Mark and Sadie. The kids loved getting out of the house and Steve and I had a wonderful time eating at Macaroni Grill (we even had a gift card:), visiting Lancaster’s Market, reading and sipping coffee at Barnes And Noble, and dreaming and talking and enjoying the silence of the winter wonderland outside.

Hope you all have a very happy week!

Special Kids

At Least We Are Home!

 birdsong

(artwork by: Kierra with some help from Mommy:)

Life does not have to be perfect to be WONDERFUL!

Right now our days go from perfect to wonderful to stressful. It’s a bit like the weather right now. From clear moon warming the cold sky to mist hanging heavy like the Garden of Eden. From sunshine and birdsong to grey ceaseless rainfall.

We came home on Sunday with a happy little girl, a tired Mommy and Daddy, and an energetic little brother. It is wonderful to be home. In fact, it was so wonderful on Sunday that after we unloaded the van, we piled everything in rooms and let it sit quietly and roominate  🙂  We indulged in hot coffee and two children and the comforts of homey blankets and couch.

On Monday, Christene came over for a few hours to help out and watch Kobe while Kierra had Occupational Therapy . The nursing agency came to get all her paperwork caught up to speed, and I made a quick trip to the pharmacy.

On Tuesday, we did laundry and cleaned up and organized and did Vision Therapy.

It’s amazing how God plants thoughts in our heart and later, beautiful flowers tendril out from those seeds of truth.

On Tuesday morning, I had an article that was due and had no idea what to write about. It was one of those ‘well is dry’ moments and I didn’t really have enough energy or will power to even come up with a subject.

Something from the hospital kept nudging the corners of my mind. It had to do with watching ones you love, suffer in pain. Didn’t our God let His Son suffer to death for US when he could have stopped it with one word?  It was for a plan beyond our wildest dreams or imaginations. The same Jesus whose heart burst wide open for us is not going to let His children’s suffering on earth mean nothing. When it doesn’t make sense, and it seems so horribly cruel and unfair, He is hurting with us. He will make everything beautiful…in His time.

That was the essence of the article I wrote on Tuesday morning. i think I needed to get it out in words so I could handle the evening better.

About twelve hours later, Kierra started wretching and gagging. She has nothing in her stomach anymore since her new Jtube, so she didn’t get much up. 15 minutes later, her color was horrible. We honestly weren’t sure if she would make it. Her stats were good, but she was gasping for breathe.   I grabbed her oxygen and slipped it on just to try to help her breath better since it seemed she couldn’t get enough air into her lungs. She jerked and screamed in pain at intervals and acted like I had never seen her act in my life.

I threw open the door to the night to give her fresh air. The moist darkness slammed me in the face and I had a crazy sensation of danger curling through the fog that lay like a smothering, eerie blanket around the house. I wanted to slam that door shut again, but common sense quickly took over and Steve stood, strong and tall with Kierra in his arms, facing the moist curling tendrils of the night.

We tried everything we could think of, even giving her a relaxant and still she struggled to breathe. Steve sat on the couch and held her while I played Jesus Loves Me over and over on the harp.Slowly she calmed down and began taking easier breaths. Her rigid jerks relaxed, muscle by muscle until she was still, and fell asleep.

I could have kissed that harp.

And my strong husband . And my sweetly sleeping daughter. And my brave Kobe who nicely went about his quiet business and acted like this happened every night.

It took Kierra hours for her color to return. We suspect she refluxed and couldn’t breath past either her reflux or a pocket of air lodged in her airways.

Since then, she has been refluxing HORRIBLY. The nurse and I put our heads together and discovered she has not been getting her reflux medication put into her belly like she should have. Instead, it’s been going into her intestinal tube, totally bypassing her belly. No wonder her belly is such a mess.

So we don’t go far from her side right now. She is so miserable, wretching and bringing up stomach acid, since there is nothing in her stomach. Yesterday, Christine ran to the pharmacy to fill a new prescription that helps with wrenching and abdominal cramps. I think it helped some, but it feels like she has lost alot of ground on her stomach refuxing issues. She is passing old blood again and even brought up a tiny bit of new blood.

Hopefully, we can get it under control here at home! She is such a brave little trupper, gagging one minute, and sweetly smiling at us the next. I think I could take some lessons from her accepting sweet spirit!

Once again…that motto i saw in the drug store

Life does not have to be perfect to be WONDERFUL!

Enjoy the wonder in today.