Special Kids

Wildflower

Newborn.


She was lovely so lovely.

Her black hair fell straight

Across her forehead.

She was strong. So strong

Her head raised steady off my shoulder.

She was feisty. So feisty.

Her bright eyes showed intense intelligence.

She was tiny. So tiny.

She fit perfectly in his forearm.

So suddenly, and yet so gradually, things changed.

Her eyes became clouded by seizure.

Her head dropped to her chest.

Her tiny feet did not straighten

And her smiles were infrequent.

We cried and prayed and bounced

Her wailing little self though the days and nights.

A mouse ran across the bedroom floor

Late one night.

And I closed my eyes, and pretended I didn’t see it.

Because I was tired. And my baby took up

All my brain space.

The heart hurts when life changes your child.

When chromosomes stick and genetics happen.

When Doctors have no answers and Heaven is silent.

When your child chokes and drools and seizes.

When hospital beds become comfortable.

When Enya becomes a lifeline of music to calm the restlessness.

When you lose so much sleep, that you can’t sleep.

When life has question marks stamped all over it.

When Goodbye is the hardest word to say.

Three years later, I thank God for allowing the pain and hard to slowly

Morph smaller then the joy.

The beauty of blue eyes.

The snuggles and giggles and hand clasps.

The Kierra head turns and coos.

My body will never forget,

But the edges of hurt are softened.

The slash of pain less raw.

Because while I miss her wildly….

The wonder of HER, our Wildflower Child,

holds the trump card.

And that is enough.

That I got to hold her.

Kiss her.

Love her.

Be her Mommy.

It’s what will have to be enough.

Until I reach Heaven.

Special Kids

Kierra Raine-the Three Year Old Who Changed My Life

It’s been six years, six months, and nineteen days since I held her, a beautiful tiny miracle of feisty spirit and dark hair. My life began changing in a way I would never have imaged since that day.
It’s been three years since I held that beautiful girl. Three years since I looked into her blueberry blue eyes and lost myself in their beauty. My life has forever changed. I’ll never be the same.

While part of me goes back and feels the pain of that night all over again, it can’t find any beauty in her actual death. It was hard and not pretty and heatbreaking and helpless. And yet, there were metaphors of beauty surrounding us that awfully dark night and I choose to cling to them. Because that is where Hope lies and that is where in the deep, dark, ugly place, the seed began to push upward toward the sun.

She laid in her Daddy’s strong arms, the only place she felt like she could truly relax that night, her little head snuggled against her Daddy’s strong heart, feeling safe and secure and so loved. (Just like our Jesus Daddy loves us and holds us close.)  I laid my hand over her heart, and I felt that steady beat, like the steady tiptoe of angel wings, brushing in rhythme and my body relaxed just the slightest, because there was a steadiness I was hanging onto in that dim room of grief, and though her breath slowed down, her rythme stayed the same.

Until it stopped. No shuddering. No agonizing prolonged warning. It simply STOPPED.

And I whispered, “Run! Run to Jesus!”

And you, my Darling Kierra, You Ran!

There was nothing beautiful about your death, my dear. But there was so much beautiful about your life. The life you embraced HERE. And the life you embraced when you RAN.

And though  my core still  feels empty, washed out and lonely without you here to care for, talk to, and love up, and even the birds outside my window make me miss you, and I don’t know why, ….You RAN my darling! you ran and that is enough for me. Because you ran straight to Jesus!

This three year old, she changed my life. And even as I type this, I know that GOD really changed it, but He used a fair skinned, snuggle cheeked, Princess Wildflower Warrior to do it.


You taught me that true patience does not always count the minutes or the hours but it is a fragrance that blossoms in beauty in a world of time…knowing that nothing lasts forever. That holding on one more minute is all that we need.

You taught me that true bravery sometimes suffers silently in lonely places instead of boldly standing on the front lines.

That true love is unconditional and expects no returns. One can  never repay the magnitude of it all. Love reaches past convenience and expectations. It loves fully and wholly and at exactly the place we are in life at this very moment.

You taught me that solitude is golden. That beautiful music, seclusion , and rest, are sometimes exactly what the heart needs most.

That every day is a special occasion when you have your family around you. That  life is meant to be lived NOW in exactly the time and place you find yourself in.

You taught me about God, Kierra. New pathways of my heart opened to Him and His love.

His acceptance of me became overwhelmingly beautiful. That my performance will never win me Heaven or favor. That we are divinely  loved and cherished and that there is so much more to life then living in fear of failure and not getting it right. That He brings freedom and life and hope. That He invites us to walk in that amazing place of beauty.

Being. Just being. That’s all I wanted from you, my little Kierra child.

And I hear the words echo back into my heart.

Be. Just be.

Be genuine. Be alive. Be the light. Be the one who runs to Runs to Jesus. Just Be!

When you don’t know where to start or how to be, then you are at a wonderful place my friend. It’s a place to simply believe that God will show you how to BE. He is good like that. He created your heart and knows it intimately, even when you don’t know it yourself.

I’m on a journey of the heart. A journey of Hope. A journey of understanding more of the person God created me to be. A journey of Running  to Jesus.

Special Kids

Christmas Muse


Because tonight I’m missing Kierra. Five years ago this was us. Snowy Christmas was here  and we stayed warm by our fire and played with babies and fed bottles and changed diapers and drank coffee. I had no idea that Christmas season how life would change in the next year. I had no clue that just around the corner was looming some pretty hard, life changing events. It was a season and it’s gone. I miss it. Kobe was only 4 months old when Kierra became a ‘frequent flyer’ at the hospital. 

Now he’s five and Kierra has been in Heaven for nearly three long years. 


Call me a pushover mom. That’s what I feel like with my little Kobe sometimes. When he begs for one more candy this Christmas or one more game, I have a really hard time saying No. Its those blue eyes and the logic he always throws in . I have a really hard time setting boundaries and telling him to play by himself for awhile because I remember how I felt when my older siblings wouldn’t play with me when I was little. I remember my little girl that would be 6 and I wonder what she would like to play right now. I remember all the days I missed watching Kobe grow and all the times I missed playing lighthearted baby games and talking gibberish to him. I want to love  him and hold him and cherish him.

 Can a mother drown a child in love? 

And then I wonder if my tolerance has made him soft. For instance, while his taste buds are quite amazing and his critiques of my cooking make me laugh, there’s also a point where you eat what’s on your plate and don’t make a fuss because there is less sugar then one remembers. Take for instance, this amazing rolled pancake at Paul’s Pancake Parlor in Missoula. 


He’s still remembering it and wishing for another one 😉 And do mine taste like that? No way …because I don’t see the point in making a sugar loaded pancake for a sweet tooth  🙂 except for on very special occassions. So when I use heavy whipping  cream and raspberries and don’t add sugar, it’s such a disappointment because it DOESNT TASTE THE SAME! lol! But now I’m way off subject. 

I find myself wanting to lavish on him partly because I can’t on Kierra. I wonder if he’s spoiled. 

Now don’t get me wrong. I get frustrated. Seriously. And then he goes through his list of questions which doesn’t always help my mood. “Mom, are you frustrated? Are you angry? Are you disappointed? Are you sad? Are you happy?” Seriously. It’s not always fun to be interrogated by a five year old when your not sure exactly how you feel yourself. But yes, I am thankful he’s talking about feelings and dealing with them 😉 

When he finds fault with every item I cook it’s a bit too much 😉 sometimes.  I told him today that he didn’t like anything I made today (except candy. Lol) and he looked surprised and a bit embarrassed and promised to eat the rest of his food without a fuss. 

He came up to me and told me he has the best gift yet and he gave me a kiss on my cheek. See why I love him?  😍

Now where am I going with this? 

I rocked him to sleep tonight. Seriously. Would  I do that if I had three kids under 5? Most likely not. But I did because I could. He filled up my lap and the rocking chair and even if it wasn’t too comfy on my expanding belly, I couldn’t help myself. He was so cute and cuddly and Kobe. He was so delighted to be cuddled. His face is taking on a young boy look. His baby chin is getting square and his grin more handsome then cute. And I know in a blink he will be too big to hold. So I love him the way I know he wants to be loved. Cuddling and songs and snuggles against my soft Christmas sweater. 

I’m still trying to find the happy medium in gently pushing him a bit toward independence and still loving him as my little boy. (For example, He went to sleep on his own for years when he was younger and he still does many times. But I know time doesn’t stand still and we are not promised tomorrow night so tonight, i rocked) 

I’m not exactly sure of all the dynamics of what healthy independence looks like but I do know I am so blessed that he is ours. To have a child that I can tuck into bed at night. To be called ‘Mom’ and to be loved. 

I miss my little girl tonight. I sit and dream about holding her again. I dream about gifts for two children and hugs and snuggles with two and the happiness and joy I got to experience with two babies for three Christmas’ in a row. I’m so privileged to have another small one, nudging inside me, reminding me that what I think isn’t possible can be real and alive. 

Death cannot take our memories or our love. 

It can change us but it can’t extinguish the flame of hope and peace that Jesus brings. And though ‘a spear shall pierce thine own heart’ was prophecied to Mary, so long ago, she still loved. She still gave. She still believed. 

No matter what spear has pierced your heart this year, my friend, my prayer for you is that the healing of this Christ -who became Flesh AND DWELT AMONG US… will be upon you. That it will run straight over the wounds this life has left. That it will bring mercy and grace and beauty will rise out of the broken. He came for us, you know. Us….who need a Saviour. 

Thank you, Jesus! 🎁💞💝

Special Kids

To Moms Of Wildflower Children

I know. You don’t want to be called out here and made to look like some freak show. You don’t really want to even have other people know you are secretly reading this. 

Because that would make you different.

That would make you special.

That would put you on this pedestal.

All you want is normal and to be treated normal.

But you also want understanding. 

Because your life is so different then you ever imagined.

Normal means nothing to you because you can’t relate. It actually makes you a bit angry. 

You  don’t even really want normal either. You just want healing.

You want genuine care. Engulfing hugs. Encouraging smiles and gestures of love.

And the scale is never balanced. 

Not that you want it to be…..because who in this life ever has a perfectly balanced life? Yeah….I know. That friend that seems to have it all together. Well, let me tell you a secret. She’s human too. She’s walking the same planet you are. Perfection will not be reached until Heavenly Eternity, so relax and refocus. You’ve got a story in life that is uniquely yours and no one else can play it out as you will. You’ve got Gods fingerprints all over your life and His engulfing love. 

I have a little story to share with you and it might get a bit messy and hard.

I was there. I was the mother of a child with multiple medical complications. We called her our Wildflower Child. She was beautiful. She was fiesty. She was anything but typical. 


This photo was taken just after her diagnosis of NCS, a genetic disorder with no cure. She was in the rare ‘ sleeping mode ‘ and slept through mostly all the different poses we tried. She was 9 moths old. 

I was naive. But that was OK. You cannot comprehend what you do not know. And God is gracious like that. Showing us through each day, meeting us where we are and leading us so gently even when life slams us face first into heartbreak.

I have so much admiration for all mommies, but Mommies of Wildflower Children are especially on my Super Hero status list. You have one of the hardest jobs given to women. 

Mommies are created with Hearts to love.

Mommies of Wildflower Children love fiercely. But love is not returned in typical ways.


I know how much it hurts to not have eye contact with your baby. I know how hard it is to hear the cooing and see the smiles from across the room but they stop as soon as you come near and talk to them.  I know how much your heart longs for little arms to reach up and ask for embrace. I know how helpless it feels when nothing quiets the wails and you feel like you have no control. I know how it feels to have someone else hear the first giggle and you wonder what you are doing wrong that the giggle didn’t come at your house. And yet, you are so happy that there was a giggle! I know how you second guess yourself and doubt your own instincts and wonder if you are a good mommy. I know how hard it is to decide if you should pursue therapy or enjoy the time you have together. I know how confusing all the IFSP questions can leave you feeling. I know how you don’t even know how you feel yourself. I know how it feels to watch your child interact better with the therapist then with you and while you are wildly glad, you also feel rejected, and that makes you feel vulnerable and ‘bad momish’ and miserable. I know how hard it is to do the therapy sessions in the thick folder left on your kitchen table. I know how easy it is to kinda stretch the truth when you report on how much home therapy you are getting done. I know you feel maxed out and sad and yet like therapy is one thing you can actually DO to help your child. 

I know about hospital days. And nights. About bossy nurses and sweet angelic ones. About Doctors that listen to you and Doctors that have other important things to fix. About feeling like you can never totally relax, because there may be a medication missed, or a dosage confused. I know how it is to watch your child with a Hawks eye for the first flush of fever or weird rash or rapid breathing. I know about ordering oxygen refills and formula and perscription refills. I know how you sit in the hospital and marvel at the night shift nurses with kids at home and wonder how they do it. How they must be so much more capable and resilient then you, who after nights of missing sleep (though you don’t give yourself that credit) collapse on the hard portable cot and don’t hear your daughter cry that night. (Just for the record, I currently work night shift and I am not nearly as exhausted as I was while being a mommy in the hospital:) I know how your child’s birthday is tattooed across your mind like drinking water. How it feels rolling off your tongue when you can’t say anything else coherently anymore. 


I know how you wonder if you can even be a regular mommy,or if you are turning into an adrenalin induced mirage of a mom. I know while you take things in stride and with grace, or helplessly fall apart and can’t seem to breathe, you never feel like you are quite enough. I know that you want to spend more time with your other kids and family and husband, but the choking noise from the bed has you grabbing for suction and everything else has no choice but to wait. 

I know you love what you do in an odd way. You hate it and you love it and you think you’re a bit crazy to feel two such powerful emotions streaming in your own body. 

I know that bond that develops. The gestures and glances and cries only you can interpret. The thrill you feel when they snuggle close and you know they feel so loved. And so are you.  (Tears)


I know how thrilled you are when a nurse or therapist connects with your child and there is that amazing feeling of having a true friend for your Mini You. 

You are your child’s voice, your child’s eyes, your child’s mobility. You are on high alert….all the time. While you sleep or wake. You are a 24 hour, 7 days a week always on call Mommy. 

You are a super hero even when you don’t feel like one. You are amazing with bleary eyes and a breaking heart. 

These words are for you, my friend. 

Be gentle with yourself. No person is perfect. Mistakes will occur. You will make a ‘bad call’. It’s OK. You may feel like the mastermind of your child’s medications and health, but you don’t have to do it alone. You have a fortitude and wisdom at your fingertips that comes from God alone. He is ultimately in charge and you can relax and rest your case and your child’s case into His hands. 

You have what it takes and you are doing a fantastic job. Gods strength is perfected in your weakness.

” For when I am weak, then He is strong.”

 Your biggest strength….the things that bless others the most and minister the most for God , can be in your weakness. Because in our weakness and brokenness, glory shines from God and that beauty outplays any we could seamlessly do ‘without trying ‘. ( we can do nothing on our own, because through Him everything was created and exists) 

Your weaknesses and strengths do not define who you are. You are defined by what God says about you. 

“I have loved you with an everlasting love.”  

(even when in your total tiredness you snap at your husband, you are not less loved by God. But I hope you apologize 🙂 

“A person’s days are determined; you have decreed the number of his months and have set limits he cannot exceed.” Job 14:5 

(you can do everything In your power to keep your child healthy, but God numbers each of our days. Our times are in His hands, and His plan is ALWAYS good.)

“For the LORD your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah . 3:17 

(you can simply rest in the one who delights in you. whisper little concerns and fears to Him. He is not a distant God but has given His Spirit to minister to us and comfort us in our weakness and needs. ) 

I heard that an air control tower specialist, and a soldier in combat are two of the most highly stressful jobs a person can have. The first one has the lives of hundreds of people ‘in his hands’. The second may die with one mistake. 

I heard that a mommy of a special needs child faces the same amount of stress. I know….that life and death are in the Lord’s hands. My head knows that, but my heart is off beating in my child’s body, and that’s where the stressor lies. 

You, my Mommy friend, are stronger then you know! You are facing obsticals no one has proper words or etiquette to broach. And here I have muddied it by trying. But hear my heart through the ‘dust of cumbersome words’. I have struggled and failed and gotten up again and tried and cried and despaired in all these areas, but God has never left me. Never turned His back or thrown up His hands in despair. He steadies me with His love.

 Even when we kissed our daughter for the last time and she ran to Jesus….He still steadied us. 

I know how hard it is to follow my own well meant advice, but  please…..

Take a break. Breathe fresh air. Take time to cry. Laugh out loud. Allow yourself to be silly. Find your own blue sky every day. Give yourself some slack. Gentle your thoughts and words. Get some rest. Accept help. Keep your marriage a priority. And of course….have conversations with God ( even when they feel like one sided rants).

And always remember….when you have God….you have what it takes. No matter how insufficient you may seem. 

Beauty thrives in hard places!



Even the devastating fire cannot destroy the brave wildflowers.

Because our God is a God of miracles and He is shaping “a diamond out of dust” as the beautiful song goes…
Diamonds
Hawk Nelson

Here and now I’m in the fire, in above my head
Being held under the pressure, don’t know what will be left

But it’s here in the ashes

I’m finding treasure
He’s making diamonds

Making diamonds

He’s making diamonds out of dust

He is refining

And in his timing

He’s making diamonds out of us
I’ll surrender to the power of being crushed by love

‘Til the beauty that was hidden isn’t covered up

It’s not what I hoped for

It’s something much better
Oh The Joy of the Lord

It will be my strength

When the pressure is on

He’s making Diamonds
I won’t be afraid to shine

I won’t be afraid to shine

I won’t be afraid to shine
‘Cuz He’s making diamonds out of dust

Making diamonds out of us

Special Kids

To That Mom At The Rest Stop

I saw your little boy’s feet first. Under the metal side panel of the restroom stall. I noticed him because my little boy’s feet were on my side.
I heard him go to wash his hands and I soon followed with my own son.

The first thing I noticed was his delightful red hair and wide eyes. While I helped my little blonde wash his hands I saw you keep a restraining hand on your own child’s arm.
There was an aura about you that seemed familiar and when I looked a bit closer …from the corner of my eye…I saw the comfy thick sweat pants and uncomplicated soft tshirt on your child. No coat even if it was cold outside.

I headed to dry my hands and you had already cranked out paper towels for me. Plenty of them. Before I could stop my own son he had thrust his hands into the super sonic loud hand dryer and at the same time I heard your child start squealing and jumping and I heard you say ” I know. You don’t Like that noise.”

I grabbed my own son and the terrifying noise stopped and so did your sons squeals.

I turned to face you and saw in your eyes the exhaustion and pain and constant battle of life and I knew your child was extra special.
I apologized for the loud noise and said I understood and above my own child’s crying at having to stop the dryer I wanted to tell you to keep on.

To keep choosing comfort for your son over cute jeans. To choose a dash in a tshirt through the cold over the battle of a coat and its textures that cause meltdowns. To keep using your two word instructions like “hands up” instead of my long ” don’t touch the toilet ring please.” To keep cranking out towels for people in hopes they won’t use the super sonic dryer.

I didn’t ask you but I think I know because I have done bathroom marathons before in slightly different situations.

Your beautiful son is autistic.
And you are doing a wonderful job!

Special Kids

Kierra’s Birthday 

It’s already August. That magical month between the glorious July of summer and the autumn tones of chilly September.

We packed our July so full I didn’t have time to catorgize all the memories but they are stored safe and sound in my heart. 

July 10. The day, 5 years ago that our Wildflower Girl looked into our eyes for the very first time and we were never the same. We celebrated her fifth birthday in our hearts and her second birthday in Heaven by traveling back to her birth town, Missoula, MT. It’s one of our favorite places in MT, full of vibrance and life and beauty. 

  
We took our camping gear, and pitched our tent in between the July drizzles. The town was full of folks from all over America for the Missoula Marathon and Half Marathon. (We got to watch our good friends finish strong…more on that later;) Most of the motels were full as well as the campground. They had no actual camp sites left but they let us set up in their ‘overflow space’, so we still made out just fine! Hot showers, bathrooms, and a laundry made it very comfy and the all night rain was actually nearly as delightful music as a lullaby.

We bought a bouquet of balloons for our Princess and hiked up to the “M” on the hill that overlooks Missoula. It’s made out of huge slabs of poured concrete , painted white. It’s quite a climb with  11 switchbacks and a gain of  620 ft in elevation from the starting point to the top of the trail. It still amazes me that folks RUN up and down as part of their workout program! That’s serious stuff 🙂 

Kobe loved the climb and did better then I expected. Of course the adventure of releasing balloons at the top made it all more exciting! Every one on the trail assumed it was his birthday, so there were birthday wishes the whole way up 🙂 

We stopped and rested occasionally and Kobe rode his Daddy’s strong shoulders for awhile.

  
Yep! It’s steep! The hill behind Kobe is typical….so there’s no wonder they carved in switchbacks 🙂

We got to the top and although the skies were grey and drizzly, it was still a gorgeous view.

  
  

The journey uphill is always worth it!!

We sang Happy Birthday to Kierra and Kobe launched the balloons. 

  
They floated lazily out across the town and eventually caught an upward eddy. We could still see them an hour later when we got down to the trailhead. Just a speck way way up in the heavens. 

  
  


Kobe and I made some special things to send to Kierra’s grave. He painted rocks and made a birthday card.

“Momma, are there mailboxes in Heaven?” He asked as he poured over his little card. Oh how I wish, my son! How I wish!

  
Steve had the great suggestion of a bouquet of silk flowers for our Princess. I had fun arranging them . I can’t imagine the glorious colors and intricate blossoms she is running through today! 

   
 
Our little Wildflower Girl. We send you love!!

  
I have been listening to some amazing talks on suffering recently. One of the things that stood out to me…. Suffering WILL come to every person on earth. It’s not IF it comes….but WHEN it comes. It may look totally different in my life then it does in your life. Suffering has many faces. But one thing it has in common….it hurts like mad. It’s inevitable but it is totally NOT too much for God to handle. 

No situation is too hard and broken for His grace. No fear is too great for His assurance. No past too marred for His new beginning. Even the faintest spark of an ember will be fanned into a profound blaze by His  gentle love and nourishing. 

I am praying to God for His eyes and His heart. Eyes that look beyond the ‘outward appearance’. That look beyond the physical things like names and clothes and cars and houses and incomes….or lack of them. I beg God to give me eyes that see His seed of potential and greatness that He created in every person born. That soul that will never die. That child hiding in the deepest recesses of the buffest. 

That His grace that has ransomed me would flow through me…giving me a fresh vision, a fresh perspective and the love of God spilling out of my life to others. 

Because this life….it’s about IN HIM and THROUGH HIM and TO HIM that we exist. 

Not about my hurt or my fears. When I have the courage to face them head on and name them for what they are, their power takes a beating! When I claim HIS power that Is FAR beyond anything we can imagine….

I have HOPE. 

And this hope will not lead to disappointment. For we know how dearly God loves us, Because He has given us His Holy Spirit to fill our heart with His love. Romans 5:5