2

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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6

Settling West

I know. This is way overdue. I have written this post countless times in my head and every time it says something different. I have so many thoughts and feelings and little moments of Aw. that I’m not sure where to begin.

Let me introduce you to our new surroundings a bit first. We arrived here in Fairfield, MT at our house on a Tuesday night. Traveling had gone excellent with clear skies and no flat tires. There was a cold nip in the air that night. Of course we had forgotten to keep proper jackets/coats out when we packed , but then again, no one expected it to snow, even in Montana, the beginning of September! We shivered in the sharp night air as we unloaded just a few things, digging for our air mattress.

My good friend Meghan had been over earlier in the day to freshen the house up. Her kids made this sweet sign for us. They even included Kierra in our family picture. I LOVE it! I still haven’t taken it down, because almost every day, Kobe happily goes up to it and points at each person and tells me who it is. Daddy, Mamma, Kobe and KIERRA! And hearing him say her name is so good, I just stand real quiet and watch him in his delighted glory.

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We crashed out on the bedroom floor that first night and tried to get some sleep for the big unloading day on Wednesday. Steve’s family lives about 2 hours from here, so they came over to help us out.

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Kobe was very happy to have some little cousins to play with! We got the trailer all unloaded into the house by lunch time, even with the unusual skiff of snow that welcomed us :) After that it was sorting and organizing and putting things away.

Our house was built quite long ago, but is newly remodeled.  It’s a two bedroom, one bath, with a full basement that could be converted into a bedroom with some love and time. So give us a bit more time…then stop over for the night when you come west :)

Our front door.

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This is from the street. We are right across from a commercial building. It’s actually a fairly quiet street during the day. Much, much quieter then Pennsylvannia  when it comes to lots of traffic :)

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These huge grain bins are just down the street from us. Fairfield  is surrounded by ranches. It’s very open country in this part of Montana so there are lots of huge grain fields. That means there is lots of wind as well! Here in town, we are much more sheltered then out on the ranches. That part is nice, but we don’t have the lovely views of the mountains from our house.

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This is our kitchen/dining room. These photos were taken over a week ago, so we have done more settling in :) Like buying a stove :)

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Our living room…still a bit unsettled here,

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and some lovely outdoor scenery for you :)

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One day soon after we moved, we were taking a little lunch break out at the old picnic table when a lady from church stopped by with a whole load of free puppies! They were looking for new homes. I am AWFUL when it comes to strays , puppies or kittens. Just ask my poor husband . We gladly took one. I even wanted two ;)…you know, so one won’t get too lonely.

Meet Griffin.

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My biggest grievance is that he howls. What could I expect from a beagle mix????? At least my son has a puppy! He is thrilled with him :)

We have been staying super busy. Setting up house is LOTS of work! Trips to town, changing addresses and phones and becoming residence. Setting up with a new bank, and a new internet company and starting a business. The things to do and see after are quite endless. Steve is working part time with construction right now. He wants to do snow shoveling, lawn care, window cleaning, landscaping, etc. We worked on a few jobs the last two weeks. We trimmed a ton of dead branches and shrubbery out of one back yard and transformed another neglected garden. It was HARD work, but so rewarding to see the wonderful difference!

Before… there was no dirt visible. This was part way into our clean up :)

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and after..

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I still can’t believe this is me in Montana going to work with my husband and taking Kobe with us.

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Where are the days of sitting in the hospital for a week, holding Kierra, talking with Doctors, chatting with nurses, meeting new people, and missing my little and big guys?

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 While I am so very thankful that Kierra is healed, today  i just wanted to go back. Maybe it was the cold and snow and overcast forenoon.

I got out my big photo book of Kierra  while Kobe  slept, and paged through it slowly. I lived in those pages all over. I remembered buying my little red tea tin at Ross one day on a hospital break when I was aching for soothing herbal comfort. It said the famous , “keep calm and carry on” in white lettering. I loved that tea tin. No matter how scary or hectic life got…i wanted to remember to Stay Calm and Carry On.  With God’s help that’s what i’m still doing. Carrying on. My tin is in my new kitchen, reminding me of my brave little girl who carried on when things got really tough in her little life.

We’ve been so busy unpacking and organizing and working, canning apple filling, and celebrating a WONDERFUL adoption (Meghan and Kenton adopted 4 wonderful kids last week!), spending time in Idaho with family, and buying a couch and oven and curtains for our windows. i think of Kierra countless times, but the sadness  doesn’t often hit me until it’s dark outside and the lights are low and I am tired.

 Today was just hard, though. I felt so much better after I took time to sit down and think about all the good times,all the smells and snuggles and things I miss about my little girl.I wanted to brush out her lovely hair and try one more time to create a braid from their impossible sleekness. I wanted to hear her telling stories at night in her bed. I wanted to draw up her 12 medications. I want to change her feeding pump bag and rip open  new oxygen tubing. Sound weird? Well, this is REALLY weird then!

I want to sit in a hospital room. I want to watch numbers on machines and listen to Enya on You Tube and hear nurses walking down the hallway. I want to see silly simple things like the oxygen and suction mounted on the wall. I want to drink bad coffee and nearly gag. I want to stay awake all night in a hospital that never sleeps. Then i want to walk out of those doors, so excited about going home and being a family again. Amazing. How you miss even hard things when they were such a huge part of your life.

Maybe That’s what happens when part of you dies.

Maybe I should be a nurse :)

On a different note, one of these days, I am going to write about some things  that are no fun when they happen to Kobe but i love them anyway because it means he is OK. and HEALTHY and ALIVE….so stay tuned :)

So long, my friends!

 

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This is an article I wrote for a magazine recently. I thought I would share it on my blog as well.

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I am writing from the valley today. It’s a place each of us will walk though in life, sooner or later. The degrees of darkness in the valley will be different for each of us, but we will all face a valley. I am hoping to send a message out from humans groping through this valley to other humans who are traveling through sunshine.

As you read, my friend, remember that everyone’s valley is different. Whether it is a valley of death, financial set backs, loss of home, best friend moving away, or any traumatic, stressful, life altering experience, it is a valley. These words are not written to place people in boxes. They are not written to excuse those who are in the valley. They are written so you can get a glimpse of how it looks and feels from the darkness and loneliness of the valley.
One of the first things I would like to shout from those in the valley is that we are very fragile. Physically, mentally, and emotionally.
Physically, this makes us very tired. The smallest things like grocery shopping can leave us exhausted. Being in even a small crowd  of people seems to amplify into grandstands of humanity. We do not always sleep deeply or well. The tired, exhausted feeling still clings to us when we open our eyes in the morning. We are weak. We need to sit down and rest more often then usual.
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What you can do:
Go slowly. If we need to have some quiet time by ourselves , do not think we don’t like you! We only need to organize and rest our overtired mind and body. It would be very helpful if you would clean up our house or mow our lawn or even take care of the children while we rest.
Mentally, are brains move extra slow. We say things we don’t mean and mean things we don’t say. We get facts confused. We may forget to tell you an important tidbit of information. We may make statements that mean one thing to us, and something totally different to you. We may forget to return your phone call or text message or tell you thank you for a kindness. We may even keep your best set of dishes for weeks and simply forget to return them. You see, our brains are super full right now. It’s like this gigantic life issue is taking up all the predominant thoughts and space. Some items and people and events get lost in the current swirling around the great vortex of our life. They may resurface later, weeks down the road, or they may get lost in the tide. It is not even a matter of which ones have more value then others. It is just that the stuff that makes up thinking and remembering gets cumbersome at times.
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What you can do:

First of all, please do not be offended or take things personally when we forget to clarify ourselves. We do not mean to hurt you. Your acts of kindness, no matter how small are like a salve to our thirsty hearts. The kindness rubs in quickly, because our hearts are parched for kindness and gentleness. It is gone from view in no time, but it has made a tremendous difference on out lives! Every layer of salve you put on, no matter if we remember to thank you or not, is a layer of healing for our wounds. The end results at beautiful.
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Be patient with us and do not judge us harshly if we do not always have the best judgment. Give us time to think through new ideas. We are usually not good at snap decisions. Keep it simple. Whether it’s bringing a meal in or planning a small gathering or setting up a schedule to help us out, please keep it simple. If we are bombarded with too many options, we get totally overwhelmed. Often we may not even care about the details of how or when or where.

Emotions are our trickiest companions. This is where things can change really fast. We may tell one friend that we are having a good day. Four hours later, everything has changed. We are struggling with questions and bombarded with fears and ready to melt into a puddle of despair. This does not mean we were not honest with our first friend. It just means that our emotions are swinging all over. We do not mean to be lying. It’s like being on a  teeter totter. You may catch us, up, down or fairly level all in one day.
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What you can do…
Once again, do not take it personally. If your friend can’t talk about an issue right now, that’s ok. Give them the freedom to have some space. Perhaps you considered yourself a close friend, and suddenly feel very distant. More then anything else, this may be because you are at two very different places in life right now. Let the ones in the darkness know it’s OK to be where they are. Once again, it is likely not you. It is the enormity and overwhelming situation that makes both of you not know how to deal with the other person. Give each other grace and time. Always, always give grace and unconditionally love.
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I read an article recently by Susan Silk and Barry Goldman on how to help those who are hurting. I give them all the credit for this idea I am about to present . I feel it is very accurate and helpful.
Imagine a circle with a bull’s eye, surrounded by a circle around it, and a circle around that circle and a circle around that one and on and on as many as it takes. The bulls eye is the person most affected by trauma in life right now. Maybe it’s cancer, or death of a loved one, or a broken heart. That person in the center is hurting badly right now. The circle surrounding this person is labeled spouse, or children. The next circle is labeled close family. The next circle is close friends. The next one just friends. The last circle is associates.

You may change the order of the circle around to fit your specific situation. Perhaps your friends are closer then family or you have no spouse or children. The most important thing is to put the ‘trauma’ in the center and go out from there with people affected the most from the situation.

Now think of giving positive thoughts and kindness to the people inside the circle from you. In other words, if a family member dumps all life’s problems on the spouse, it will most likely not help the spouse a bit. Instead, the family should use encouragement, sympathy, prayers, and strength to encourage the spouse. The friends should do the same for the family. Instead of expecting the family to hold up the friends and be strong and always positive, the friends should strengthen the family and not dump all their troubles and worries and concerns on them.

So simply put, if someone is closer related or better friends with the ‘trauma person’ then you, then by all means, do not add to their burdens with burdens of your own.

This is a beautiful picture of us bearing each other’s burdens. We look out for our brother. Our other brother looks out for us. It’s a strong chain of strength that can flow with positive thoughts and prayers and encouragement right into the heart of the trauma.
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The other extreme is being so careful with every word you say that you are not even real. It does folks good to know they are not alone in the darkness. That others have been there and survived. That life is not perfect or totally uncomplicated for folks around them. It’s when folks dump too much darkness into folks already walking in the valley that the valley can become even darker.

Everyone likes a good story. Some people like to tell good stories. If they hear about a traumatic event, they nearly always have a bigger one to share. This frankly, does not help. I know I have been guilty of this in the past. If you are on the outside, looking in, do not share other sad or similar stories unless they have an encouraging moral to them. It is overwhelming sometimes, to hear of other peoples trials while you are in the valley yourself. Having someone tell you a worse story then your own seems to make you feel like they are minimizing your pain. It feels like what you are going through shouldn’t be hurting so badly because someone else had it so much worse. It makes you shut down and crawl into your shell when you actually need the healing that comes from grieving your own loss or hardship.

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Perhaps you are looking in from the outside, longing for ways to show you care. You think of a kindness and offer it to the person in the valley.  The person in the darkness turns you down. That hurts. You wonder if they don’t like you. If you offended them. If you are not good enough for them.

All these things are most likely not true. That’s how Satan rolls. Using fragile situations to amplify misunderstandings and plant seeds of lies. Most likely, the person in the valley was too overwhelmed that day to say yes. Perhaps  they were too tired to even think about it.Perhaps they were embarrassed of how needy they are right now. Perhaps they felt like a project that everyone was trying to fix. Perhaps they simply didn’t think or were distracted by something else at the moment.

Don’t give up if this happens. You can think of other creative ways to help. When people in the valley feel like those in the sunshine are ‘fitting them into their already full schedule’ it can be very intimidating. Random acts of kindness can show that you truly love them in a more gentle way sometimes.
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Having been in the darkness has changed me. The knowledge that God will bring us into the light again has held me through the valley. Prayers and kindness and wonderful friends and family that surround me have given me the courage to write these words from the dark side in life. We were treated so respectfully and with so much love in our valley.  I apologize to anyone I hurt unintentionally in my own valley.  You were all so very kind to me!
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Now that I see glimpses of sunlight and rainbows, I wanted to share a bit with others who are basking in the full light of day. Be gentle. Give grace freely. Do not judge. It may be your turn to walk through the valley soon. Then others can extend the same grace to you that you extended to them!
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0

Goodbye To The East

A week ago. Only a week ago that we said Goodbye to our friends in the east, and the big farmhouses and winding roads of Lancaster County.

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I knew moving was a huge amount of work and a pain in the back. This was our seventh move in seven years. I just forgot, again (when I was SURE I wouldn’t!) how NOT FUN it is.

We arrived home from Montana the previous Monday night and collapsed into our own wonderful bed. That week was full of packing, organizing, tying up loose ends and farewells. We advertised our van on Craig’s List and another online websight on Tuesday. We prayed it would sell. Sure enough, the day before we left, we sold it.

 We had quite a bit of interest in the van online. One lady especially, grabbed my attention. She was a single mom with 4 kids and in desperate need of a vehicle. I think God just held other people off until she could come see it and make us an offer, because I think she really truly needed it. The night she picked it up, her Mom told me that their church was having a time of fasting. The last day of the fast was that very weekend that our van showed up for her daughter. Isn’t that amazing? We signed the title over to her on Saturday before we moved. Don’t you just love how God works!

(I apologize for the poor photo quality coming up. I didn’t take time to really look at the pictures until tonight and realized my camera was obviously not on proper settings. The images are more important to me then quality in this case, so please be gracious:)

Linda and her girls came over to help me pack the kitchen and pantry one day.

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Joanna and Alisha tackled the big bookshelf.

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Kobe was very glad to have someone to play with and read to him.

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Otherwise, he got into lots of tight spots and hollered for me to come find him. Moving and two year old emotions aren’t the greatest combination.

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My family came on Saturday to help us load our tailor. It was an unusually muggy, humid day for September. Steve and I had to run to Leola to sign paperwork yet in the morning, so all the hard workers got a big chunk of the house hauled out before we could even help. The brave guys sweated buckets as they arranged and rearranged everything.

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The children had lots of fun playing together cooling off at the pump

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and listening to the empty house echo when they sang.

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We got the last pieces loaded around lunch time, then relaxed while we ate subs and ice cream. After that, came the goodbyes and the waving and torrential down pour of rain that brought flashfloods but broke the heat. Jason’s truck needed a new starter put in before they could go home. Thankfully they found a store that was open and had one on a Saturday afternoon.

Joe and Mona stayed for the weekend. Since our whole house was boxed up, Merv and Linda so kindly made room for us and Joe and Mona both at their house fro the night. We all had one more good time together.

Goodbyes are never easy, but with no goodbye, there is no new beginning. Goodbye is not forever for God’s Family. I’m so glad we can be part of that everlasting family of His sons and daughters!

I really don’t have words for all the emotions of that last Sunday. While part of it was familiar and comfortable and funny, other parts seemed so final and tear jerking and sad. I sat in church, unable to sing most of the time, memories of the last 2 1/2 years overwhelming me. Wishing we could sit on the back bench with Kierra in  her chair beside us one more time. Remembering the kindness of all the folks that would help lift her chair up and down the church steps or just stop and stoop down beside her to say Goodmorning  and that they were so glad she could come today. Sitting in the nursery with her when it got too loud in the auditorium, or turning the lights off during Sunday School so they wouldn’t shine in her eyes and drive her crazy.

After church, we went out to the grave for one last Goodbye. I had stopped by myself earlier in the week and had my little heart broken cry fest. As I turned from her grave that day to leave, the sun broke out behind the overcast clouds and literally spilled all over me in warmth. I think it was straight from heaven.  I was so glad, because I felt so much more calm and hopeful since I had let out the pain and farewell to this little spot and our beautiful daughter’s life. Her memories will go with us anywhere we go. She is so safe now.

One of her little friends from Montana had asked me to buy flowers especially from her for the grave, so I found a nice bright bouquet that I thought Kierra would have enjoyed. Kobe quickly claimed possession of them.

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They looked beautiful. Vibrant and so Kierraish.

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The happy faces of Kobe and her cousins were a tiny reflection of the joy she is exuburating right now.

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We miss her. So very much.

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But our goodbyes are not forever!

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Because we have this promise.

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(*thanks to it all began with paint  for this lovely hand painted sign. I have it hanging in my kitchen to remind me…goodbye is truly NOT forever, because the Love of my Saviour will welcome us into His everlasting joy some wonderful day!)

6

God’s Got This

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It’s all part of the Journey. Life can be so difficult to understand. Circumstances so unchangeable. Emotions so beautifully tangled. But when we hold onto the fact that God is working for our GOOD, then we have hope, and often hope is the best thing to hang onto in this life.

We packed our car, shut up our house, and picked up our road map several weeks ago. We headed out for the sunny south. Destination. Florida.

This morning, we woke up in Montana.

What a journey it has been! Giving up our dream to live in Florida, for our dream of coming back home and living in Montana. We loved being in Florida, but something didn’t seem quite right. When my friend, Priscilla, got married in Trout Creek, MT, it seemed like God was choreographing everything together to allow us to return west and nudge us in a different direction.

We drove from Florida to Montana in around 40 long hours of cross country highways and interstates. The closer we got to Montana the more excited we got. We were coming home. Believe me when I say I was THANKFUL for that feeling! Soon after Kierra died, the last place I felt like going to was Montana. It felt like we had been wrung out and hung up and forsaken by that land. That is a prime example of how emotions work. Because Montana was actually wonderful to us. People cared about us. Doctors did their BEST to help us. We had wonderful , kind, friends. We had family close by. I think part of my heart died along with my dreams for my daughter in Montana a few years ago. It hurt too much to go back and face that dream again.

I could write a long epistle about coming here, and how things fell out of and into place for us. How discouraged we were at times,like yesterday, our last day here, with no house nailed down for us to move into. Like questioning if this is even where God WANTS us. Like wondering if He even CARES what we do or where we live. I mean, we hadn’t had a burning bush or  voice from heaven blossoming in our faces. It seemed the right thing to do right now in life, but could we trust ourselves? And most importantly,could we trust God?

To make a long story short, we got a text from a friend who had contacted a friend who might have a house available for rent. Since we aren’t financially set to cash off a place, :)  we were looking for a rental at least until we can get settled if not longer.

Then things started happening. I couldn’t believe it. At 6:00 PM, a few hours after I wanted to cry in discouragement, we had a cute, affordable,newly remodeled house that had our name on the rental agreement.The funny thing is, we didn’t even sign the agreement yet.It’s a Rancher’s word for it and our own honest word that closes the deal until we come out and sign ‘ some kind of papers that he’ll write up’.:) He of course wants us in it a year, which is OK with us since it is very reasonable and the best thing we have found yet :) It’s a small two bedroom house just a block or two down the street in Fairfield where we lived a bit over 2 years ago.

Maybe that’s what you call God coming through in the 11th hour. I like to think of it as God coming through on time. Although it looked pretty sparse and discouraging yesterday afternoon, I had these moments of feeling like the great wheels of God’s workings were turning and He was going to come through with SOMETHING.

I wouldn’t even care if He had written “I told you so.” all over the sky :)

So here”s a big Thanks to our Father who cares about us, and a BIG THANKS to our family and  friends. Each of you who prayed for us, or gave us a meal, or  a bed, or encouragement, or laughter, or kindness, or assured us that God would work things out….THANK YOU!!!! Did you know you were the breath of God in our lives?

Today we head out on a new adventure with this rig.

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Steve’s uncle and family are moving from MT to IN this weekend. (another God plan the way this works). Since we didn’t want to drive our car all the way back to PA and all the way out here again, it made sense that we haul a load of their stuff back and leave our car parked here. The best thing is that since it is outrageously expensive to move west with a UHaul. (over twice as much as moving east) this is an answer to another unprayed prayer! :) Isn’t it amazing how God looks out for us! Johns and us are renting this truck and trailer from kind folks out here, and loading it with John’s stuff to haul to IN. Then we unload, and head the rest of the way to PA. You can guess the rest :) I think it will PLENTY big enough for our things. Steve even claims he could fit the van into the back of it yet too. LOL!! (the van is for sale, actually, if anyone is interested:) We hope to be back home by Monday sometime, so I’m not sure how long it will take to pack and say Goodbye to the East. I dread that part :( But I guess it is also part of the journey. I’m going to miss you guys in PA so much!

Prayers for safety and Praise for a God who ALWAYS comes through!

 

1

Embracing Life

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So here we are. The third day Of another adventure or crazy crossroads or whatever you call it. Back to driving around the streets and roads of a strange town. Navigating through strange grocery stores and watching out for old folks crossing streets. Snapping pictures of houses for sale on my iPad out the car window. logging info and numbers and options.

Hanging out at hotspots for WIFI. Scouring craigslist and papers and online sights for a job that catches our eye, or that we would actually qualify for. Wondering if we are totally loco and if we are using the brains God gave us properly.

We can’t forget that we felt like God really, really wanted us to check Florida out. That we felt it was time to move out of Lancaster. That He has all the power and holds all the pieces to the puzzle in His hand. That He will delegate them out in His time and His way.

Montana still holds a big piece of our hearts and minds. It’s where our hearts can return to and immediately feel a connection, and that Home feeling. Whether it’s wise to move back is still a question in our minds. Whether God wants us to is also a question.

The fear of making a wrong choice can easily cloud my enthusiasm. Why am I so afraid we will get it wrong? After all, we serve a loving Father who has promised to guide us with His eye! Why do I fear the unknown when He has never let us down in the past?

No matter where we live, what we do, or who we come in contact with, our God is never going to let go. I need to firmly remind myself of that!

So I am writing to remind myself of my commitment to my Father
To BELIEVE!
Believe God will work out our future.
Our today.
Our tomorrow.
That He knows our yesterday.

That He knows that we are only humans, doing our best to follow our all-knowing Father.
That we can only do the best that we can do.
That when we do make a decision, we can rest in knowing He will work it out for our good.
That He will bring us to a place of knowing and peace.

Last night, we watched the sun set at the beach. It was so glorious and it made my heart ache in all kinds of places. I wondered where we would be if our life had been written with a different story. If Kierra’s ending would have been different. If her beginning in Heaven had not come yet.

On Friday, we were at a wonderful meeting at the Clinic in Stasburg. It was a special day for families of children with Yoder Dystonia. I came away, feeling overwhelmed and encouraged and totally amazed. The science of the cells dividing. the amazing surgical injections being done with the tiny babies inside pregnant rats. The beautiful cerebellum of the brain that has a distinct leafy appearance. The fact that is even more beautiful in these kids, because it is extra tiny and totally unique. The questions that surround from the time of conception until the time of their Heavenly beginning.

They have come so far. But still have so many really important questions that need answering. The term Yoder Dystonia for these children has been changed to NCS. Which stands for Nepher Cerebellum Syndrome. There. I hope I got it right.:)

There were six Dr that shared about their findings and treatment options. It was so very educational! From the Clinic Doctors to the older gentleman with the wonderful London accent!

So far, there is still no cure for NCS. Their quest for understanding exactly what is happening should give them more specific answers as to how to treat it best. It seems like when one of the specific cells divide there is extra trauma then usual. This may cause a host of complications. WD73 is the gene that is affected in this process. Even having the cell divide a fraction of a centimeter different then ‘usual’ can cause amazing differences. And this is only 1 cell in the enormous world of your DNA. Think of paying off a loan with 3% interest over 30 years versus 3.05% interest over 30 years. Now imagine the difference it makes in a human if the cell divides even a teeny tiny fraction of a difference then usual. Over the course of time, it will make a BIG difference!

So questions that come up are things like, does the mother need an extra protein or amino acid during pregnancy? Is the baby fine until late in the pregnancy when it lacks something that would effect the way the brain develops? Are they born with this or do they develop symptoms after birth?

Research is still in progress. NCS is taking longer then nearly any other disorder they have experienced to unwrap. I see God’s awesome creation all over this amazing search to understand NCS. We are WONDERFULLY created!

And all these sweet children….well, they are the handiwork of God too! Because they cannot breathe without His touch on their lives! All the parents that were there…whether they had lost their children or not, were living examples of love. Love that reaches beyond the normal, and embraces the gift of life!

So once again, in a totally different way, I choose to reach beyond the normal of an expected life and embrace whatever God has planned for us. In Florida. Or somewhere else….You show us, God…we’ll do our best to catch on and follow!

Will you join me? Whatever you are facing…embrace it, with the arms of our Father bracing yours!

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Beauty In The Dry

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Remember me like a dry flower,
It may not have any fragrance,
But it will remind you of my existence
Forever in your life.

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They say roses fade…
I think they just deepen.
Into a stronger beauty.

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It was the delicate strength of the tiny blossoms
That brightened the room even when their season
Was gone.

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Thank you,Christene for helping me create beauty out of dry brittle flowers! A bit like my heart.
It is a gift…..
this beauty from Kierra’s life left for us…
Even after she is gone.
Peace.