Mom Life

Two Year Olds In Tiny Places

Today was good.

And sad.

And healing.

And stressful.

And hilarious.

It’s no wonder I am so very, very tired tonight.

We had quite a bit of formula and medical supplies and equipment that needed a new home since Kierra doesn’t need all that earthly stuff any more. (I wish I could sit for one glorious day (even in the hospital) and just hold her.)

I had contacted The Clinic where we did most of her primary doctoring. They were happy to share her supplies with their patients.

This morning, Kobe and I packed up and headed over to Strasburg for the day. I offered to sort through their donated supplies and label boxes etc for them. It was a tiny way to say ‘Thanks’ for everything they had done for us.

It also was a great way to be able to sift through all the familiars in life that have so suddenly stopped. I felt like breathing in the scent of tape and oxygen canulas and feeding pump bags. Yep, losing someone you love like crazy, makes you a little crazy too 🙂

I felt like those bags of syringes and feeding supplies were my good friends. They were familiar and comfy and soothing.

Quite a different story when I first came home from the hospital with Kierra two years ago and it would take me forever to get anything done and I would spend many precious (rather frustrating) minutes, pushing beeping buttons and staring at the tiny pump screen trying to comprehend what ‘flow’ and ‘volume’ and ‘rate’ meant.

Even the hard things in life can become beautiful and the things that made you ‘unusual’  tendril their way  into your system and suddenly you woke to the fact that they had invaded your whole life and become your friendly, faithful side kicks.

It was comforting and peaceful going to the quiet, low lit, spacious room upstairs in The Clinic. To sip coffee and sort boxes and organize thing in nice ship shop shape. To speak with Doctors and nurses who knew and loved Kierra.

It was healing.

Kobe helped me tear tape, played with play dough, made an escape/ dash down the stairs and all the way to the office, played with toys, and was a typical little two year old.

I love him so much.

It is really hard to know how to handle him right now. His personality has changed more then I was hoping it would. I have a feeling it’s a mixture of new, grown up independence and also the confusion of having his little world rocked. He needs lots of love and attention and positive words since he gets into LOTS of trouble. It’s hard to get the affirmation in between the instruction and correction.

His fun spirit is still there, it’s just a bit lost right now.

Today on the way home from the Clinic, we stopped at a tiny second hand boutique store. I was trying pants on him in a tiny secluded back hallway, since I noticed someone was using the only dressing room. (the curtain was drawn, so that means ‘in use’) How hard can it be to try pants on a two year old? His sock came off, so he had a fit about that, because his toes would get too cold. Then, he twisted around enough to see that he was standing next to a bathroom that I never knew existed. “PEE!” he squealed, lurching toward the open door. I grabbed two armfuls of things as I quickly tried to follow his streaking little self. Of course he easily beat me and was happily putting the toilet seat up and down, saying “there? or “there?” I tried not to notice the grossness of it. shivers…and gingerly put it DOWN. “There“. Then I Sat him on it and scrubbed his hands very well afterward.

Since the store is too tiny for carts, it was a challenge to keep him corralled in my vision (seriously! ONE 2 yr old?) I had to do repeated laps around the two narrow, long racks of clothing to keep track of him.

I looked up from a clothing rack to see no little, yellow jacketed boy close by. The store was very quiet. I stealthily, quickly, whisked my way to the back. No Kobe. I turned the corner to the changing room with a sinking heart.

A blushing stranger held the curtain back and there was my little boy, hiding behind her legs.

“Thankfully, I was dressed,” she smiled bravely. “I told him to go find his Mom and he informed me he was ‘hiding’.”

I am very thankful for the kind graciousness of that girl. She could have yelled really badly.

What could I do but apologize? And tell Kobe that it was very impolite to walk in on people behind curtains and help him apologize. His little ‘sorry’ really was just heart melting though!

You guessed it, I headed for the register really soon.

But Kobe wasn’t finished yet. I didn’t dare set him on the floor when I paid for fear he would streak off again. (seriously, he has a major attention span/energy/hard of hearing/disobeying problem here. did you catch on yet?:)

He wrestled with my wallet because he wanted to pay with money. “No, Kobe. I am paying with the credit card. I didn’t bring money today.”

So he lunges for the hand held price scanner. Two year olds have REALLY strong fingers!

I finally got it away from him. He was laughing hysterically like it was the best game ever. He immediately lunges for the little tagging gun that I had never noticed and wrapped his tiny fingers into knots around the tiny delicate plastic ream of tags. (an odd picture of a fish spine flew through my mind in that awkward detangling moment). I may have shivered.

I left with a whole new level of Mommy Dignity. I’ll leave it to your imagination as to what that means.

I think we will be having some guidiance/obediance sessions in the next days.

You know you are the Mommy of toddlers when you see a bill board that reads “Fully Trained and Obedient In 4 Days” and your heart does this queer little WOW! YES!!!! thing. Only to see the adorable dog smiling happily beside the brazen promise.

I would much rather have a lively two year old ANY day. Even if it takes a life time of loving and exasperation and laughter!

P.S. I forgot to mention the ‘trying to be helpful’ man at the hardware store. I stopped by on a chance that they would have blank stretched canvas (like artists’ canvas). He didn’t think they had any but directed me to the buggy shop close by who might ‘just give me big piece of canvas’. I didn’t have enough patience to rexplain myself so I had to leave before I laughed out loud and ruined his goodwill. There are such different ways to understand words in life!


Because Life is NEVER Bigger Then God.

We took a little trip down to the hospital to pick up the artwork that we did on the last day with Kierra.

It was nostalgic to say the least. I felt like I was walking in a dream until Kobe broke the silence with his enthusiastic, “See Kierra!” when we pulled into the driveway.

Little children look at life with such simple acceptance and faith. We told him Kierra wouldn’t be here. That she is in heaven. That was OK with him. He didn’t fight or try to reason. He just calmly moved on.

Now we as adults can’t do that as easily. Our questions are so much bigger and broader and deeper. They affect everything in our lives and run through our minds in waves of volume. We are these battle weary, hurting souls that spin a cynical twist to pain. We throw heart tantrums and play ‘not fair’ and ‘get you back’. We aim our frustration and fear and hurt and insecurity at a supposively loving God who we were taught to honor and respect.

It would hurt me very much if Kobe would never ask me “Why?” (or rather, “huh?'”:) If he would never mention Kierra.

If instead, he would go around, raking me over the coals behind my back, questioning every thing I told him that is true.Even that I love him. If he would blame me for all the pain and loneliness in his little life right now. If he would put big black marks on his chart against me and show everyone that I am a scam of a mommy who doesn’t care about him. If he would embrace that chart until the lies become his life.

It would hurt worse then him pounding on my chest, crying out his frustration from a hurting, weary, lonely, confused heart.

Perhaps that’s one reason Jesus said we should become as little children. It’s Ok to ask why. To be alone and sad and hurt and to not understand. To cry out to our Heavenly Father and let Him comfort us. It is not His fault that life hurts right now. Just as Kobe fully believes that we love him and what we tell him is true, so our Father wants us to trust Him.

Kobe could have spent the whole day and all of his energy on a search all over that hospital for Kierra. Instead, he let us pull him in the little red wagon.

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We can do the same. Running ourselves ragged trying to find the meaning to life and questions and that real evidence that we think we HAVE to have. Or we can simply trust God to take us to the answers in His own time and His own way. We can rest in peace that He knows what He is doing. That life is NEVER bigger then Him. We can relax and try to find joy in the little things in life.

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We had to wait for hours until they located the artwork for us to bring home. It was locked away in an office on a weekend or something weird like that. But it was worth the wait. Now we have our fingerprints all over the canvas. It is still waiting on a frame. But, good things take time, right?


Nature Awakens You

Our Bleeding Heart Snowman :)

This snow we’ve been dumped with reminds me of my New York girlhood.


Maybe part of the reason I never made many snowmen was because we were so accustomed to snow, we didn’t appreciate it for what it was 🙂 Anyway, snowman crafting was never my greatest talent, so when I bundled Kobe up and set out to make a snowman, it went about as usual 🙂 I am always glad when a kid helps me so I can at least pretend that a kid built the snowman.

  On a whim, I grabbed the red food coloring in hopes of making a valentine snow man. I went a bit wild with it, and afterward realized if I had used an art paintbrush, it would have turned out much neater. Needless to say, we made a heart that immediately began bleeding. It was actually quite appropriate 🙂


By the time Steve came home from work, the head had fallen off, and the whole front was one solid pink snow hump. He was hoping there was not a drive by shooting involved 🙂 (No, that would honestly NOT be funny!)

Since we had SO MUCH snow, Kobe kept getting stuck. Since it was his nap time, he was tired. Since he was tired, he was grouchy. Since he was grouchy, he cried. Since the snow and sun were extremely bright together, it hurt his eyes. I’d say he was doing pretty good at giving me a kiss! 🙂

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We miss you, Kierra.

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Making valentines cookies wasn’t the same without her. This was last year.

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And this is this year. Some good friends came over and magically created lovely valentine cookies for me. it did my heart good!

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I’m sure Kierra has lots of beautiful, lovely, girlish, valentinesy things in heaven right now.  I bet it’s like valentines day all year round up there. I JUST WISH I COULD SEE IT!


Kierra’s Funeral

So many kind friends came to show their support and love the evening before Kierra’s funeral.


Even the sunset was a lovely pink. It was perfect, since Kierra’s favorite color was pink. Although her vision was very limited, it always seemed to catch her eye more then the other colors.

The church house was open for friends and family to come and linger.

A table of with a few of her favorite things was set up close to the guest registry.


The day she passed away, two of my siblings gave us a little figurine from Willow Tree- ‘Angel’s Embrace’. I think her angel that bore her away on wings to Heaven is still watching over her right now.


Since harp music soothed Kierra’s restless evenings, we asked The Marinis ( ) if they would be so kind as to play throughout the evening. I will always be amazed at how much music helped calm Kierra. We would often play CDs all night for her to help her relax. I can just imagine her thrill at the lovely heavenly music she is soaking in right now.

The harpists were so gracious and kept soft music  in the air.

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Thank you, Emily, Katrina, and Mark!

The following day was the funeral. So many people helped us make this day possible. We wanted to close Kierra’s last chapter in her bodily form with love and music, flowers and sweetness. Through the grief, the beauty was rather lost on us, but we still felt it deep in our hearts and I look back on that day with the feeling of warmth and strength and love and pink. So much pain and so much beauty all combined made a day of immeasurable grief and the peaceful pureness of a child.

Mark and Sadie spent hours on her slide show and memorandum. My family made tiny wild flower favors to pass out to the guests.

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Shawn King led the congregation in singing “Children Of The Heavenly Father” and “Safe In The Arms Of Jesus”


Merv Fisher and Amos King, the pastors from church, shared also. They both brought comfort and healing to our hearts. It means more then I can say to have these kind folks who we have only known for about two years, pouring God’s grace and their love into our lives. I hope we can somehow pass on all they have given us to others, and that God would bless them beyond their imaginations!

It felt so unreal to be the family on the front bench, mourning the loss of their family member. I felt like pinching myself to see if it was real, but the big hole in my heart assured me of that.

We had an open time of sharing. Everyone that spoke helped to put a chunk of love and peace into my heart again, although the hole will always be a Kierra sized one. Thankyou, all of you!! We won’t forget your kind words!

Steve’s father spoke first. They were missionarys in Honduras for most of Kierra’s life. When they heard Kierra was not well, they prayed for healing. When they learned her diagnose, they prayed that God could be glorified through her life. Over the last year, their prayer changed. They prayed that if God would allow it, they would have a chance to connect with Kierra as a granddaughter before she left us. We traveled to Montana for Thanksgiving and their prayer was answered. Kierra was happy and feeling fairly well.


I truly think this was Kierra’s time to go. We wouldn’t ever be truly ready, but Stephen and I both felt like it was time to say Goodbye this time when she got sick. It was honestly the first time in her life that I felt like I was ready to open my hands and let her go. I had often given her to God, but a part of heart always begged God to let her stay. This time was different. She had Heaven stamped all over her sweet little face.

Mark and Sadie shared a bit. They were some of Kierra’s favorite people. Sadie wore her beautiful hot pink dress especially for Kierra.


Our wonderful night nurses both spoke a bit. Kierra loved you ladies!


Dr. Strauss, who has done a phenomenal job at keeping Kierra comfortable and is still working with other Doctors to research Yoder Dystonia, spoke as well. He is truly an amazing man.

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My father closed with a few poems and the Obituary.


Then came the heart wrenching part of kissing our daughters sweet hair and face and saying Goodbye to the body we poured so much time and love into. Our brothers carried the small white casket out to the cemetery behind the church house.


There were wildflowers passed out to the children and friends to place on her grave.


And now, I can’t resist posting just a few pictures of the children at the service. Their expressions speak volumes.



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After they had lowered the tiny bit of whiteness into the grave, Steve placed the first shovel of earth into the hole. It was his way of giving his daughter back to God, who loaned her to us.


Kobe wanted to scoop a bit too, so Steve helped him. I will never forget the picture in my mind of my two guys, the brown fresh earth,and the chill in the air.


It felt like my heart was buried in that dark hole with our little Kierra.


I am so blessed to have these two guys in my life though.


We also have a whole host of friends and families to pray for us and love us and support us. Thankyou…each of you!

Kierra’s grave was sprinkled with lovely bright splashes of wildflowers. As I watched the children come up and place them eagerly on the grave, I could imagine how Kierra would have LOVED to do this.

It brings hope.

“The bud may have a bitter taste,

But sweet will be the flower!”


We are still in the dream, Kierra…

but you are SO ALIVE in Heaven!

We love you.

See you soon sweet one.

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!


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…


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.


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.


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


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.


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.


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…


Kobe Misses Her.

last days 051

We miss her so much. Those precious little hands. I turned to look for her today, to check if she was OK. And she wasn’t there. My heart feels like it had a dose of immunizations. It is so incredibly sad. But it just keeps beating and life just keeps going on.ImageGoodbye Kiss.

He misses her so badly. Today, especially, he is so sad and wants to be held and cuddled and read to much more than usual. He cries about the tiniest things. ImageAnd stares out the window.

ImageTheir hand prints will always be side by side in our hearts…even if Kierra’s are in Heaven.

ImageWe got a few smiles out of him today. His cousins came by this morning before leaving for Montana and he laughed hysterically over bubbles.

ImageThey sat on his beanbag with him and kept him company.

Because he misses this…


Then Rocky came to play awhile.


And these two lovely ladies drank coffee with me and did pedicures and talked and sat and were so kind.


We survived our first day after the funeral. That is a milestone! Thank you for all of you for your prayers and love and kindness! I slept better last night then I have in a very long time. That is a miracle.

Please pray especially for Kobe. It hurts to see his sad eyes. I know God will help him through this too! Because He LOVES the children!