Nature Awakens You

Our Bleeding Heart Snowman :)

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

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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 🙂

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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!

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

Kierra’s Last Weekend

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So see you round, my friends…

Special Kids

Cozy

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

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

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

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

Hope you all have a very happy week!

Special Kids

Two Little Wildflowers

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Kierra met another little friend today that is diagnosed with the same disorder that she has. Kayla is 2 yr. old, almost three, but she easily held her own beside Kierra 🙂 Her parents traveled from Indiana to do some very informative testing at LGH here in PA. She had just returned from an MRI when we got to the hospital to see her, but she still smiled and wiggled and blinked her eyes coquettishly…just like Kierra 🙂 They even locked their arms together for awhile and lay there happily beside each other, while we parents visited and loved watching them.

There is a marked difference between the two little girlies though.  Of the 27 known cases of Yoder Dystonia, this little Miss Kayla  has no kidney disease at this point. Not even a trace. Last year, The Clinic Dr.s and scientists met with more Dr.s and scientists that were discovering more children with Yoder Dystonia, but were calling it Hershberger Syndrome instead. They pooled their knowledge together, and discovered that little Miss Kayla had a different mutation to one of her genes then any of the other children did.

To make it all a little easier to understand, good Dr. S. explained that while Kierra and every other YD child has a mutation in  genes that affect the kidneys and the brain, Kayla only has a mutation in the gene that affects the brain. These genes are right beside each other in our gene pool, so he described it like shuffling a deck of cards. Sometimes the cards stick together. That’s what happened to all the children except Kayla. The kidney gene and the brain gene both became mutated or ‘stuck together’ and were affected. Kayla’s gene  broke off before it reached the ‘kidney mutation point’, so her kidneys look pristine.

Isn’t that just amazing!?!

Now they need to find a child with only the kidneys affected and not the brain! 🙂

So I’m not sure what all this means in finding help for these kids, but it is WAY ahead of where they were a few years ago. Knowledge is power. At least I hope so in this case 🙂

These children’s Cerebellum in their brain deteriorates at a very high rate of speed. Kierra’s may perhaps be at the deterioration stage of an 80 yr. old. An MRI would likely show more, but this is an estimation from other research. Maybe that is why she has trouble sleeping 🙂

They are hoping to have a reunion for all the Yoder Dystonia children this summer sometime. I am very excited about it! They also hope to have more information to share with all the families. Maybe I will discover then if my memory served me well or if I got it wrong in my brain’s computer as i listened to the Doctor’s knowledgeable explanations 🙂

The more medical term for YD is called NCS. This stands for

Nephr (kidney)

Cerebelo (brain)

Syndrome.

That makes more sense to me as well 🙂

So maybe technically we would say that Kayla has Cerebelo Syndrome and Kierra has Nephr Cerebelo Syndrome 🙂 Either way, they were very much alike and very much different. Two lovely little sweetie pies.

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On the way home we picked up a bunch of medication refills for Kierra including her upgraded brand of pepcid. She is still having problems with a GI bleed and is still spitting up blood sometimes. We are still waiting on some test results. Poor girl. Her stomach muscles must be getting worse, since she is vomiting 3-4  times a day. Thankfully, it’s not more then a few mouthfuls, but it’s still traumatic and uncomfortable and yuck for her.

We are hoping to change to a different style feeding tube that will bypass her stomach and take her feed straight down to her intestines so she doesn’t have to vomit as much. She is loving her bed and her new Bird and Flower bedding very much these days!

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Mom Life

The Family I Want To Be

It’s a place to come home to. A love that engulfs. The familiar comfortable bindings from years of growing and learning and laughing and hard times. The forgiveness for mistakes and misunderstandings. It’s what makes family special and loved and irreplaceable. It’s what makes us homesick for Heaven and that destination that will actually and truly resonate with our inner most being and we will know we are actually, truly, forever HOME with our Father, and the family of saints.

We took a quick trip to West Virginia last weekend for my cousin’s wedding. I hadn’t seen most of my cousins in a very long time, so I was very excited. It made it even more wonderful to visit the old ‘stomping grounds’ of my girlhood best friend, and “partner in crime”. That old farm-house is literally saturated with memories. From totally embarrassing to hysterically funny to  teenage heart breaks. I could write a whole series of books on our stupendous and epic moments. Maybe another day I will begin that project 🙂

Now we  are supposedly ‘all grown up’ with husbands and little girls and  boys with happy or sad faces 🙂

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Our girls are actually close in age, and just like us, they can wear each others dresses and hair bows.

Carly wore Kierra’s dress and we watched her quietly as she scooted all over the house on a trike, munching an apple.

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Isn’t she just beautiful!  My heart was all mixed up watching her. Thinking of how Kierra would  look doing the same things she did.  It was special. sweet. inspiring. and heartbreaking all together.

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Two adorable little girls. Two totally different paths in life. Two mommys that love them fiercely  and tenderly and wholly. Isn’t life just incredible?

Aunt Betty held Kierra for a long while. They got along very well 🙂

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Everyone needs an Aunt Betty. She’s got a kind, thoughtful lovely heart that reaches out and makes you feel comfortable in your own skin…whatever type of ‘skin’ that is in life at the moment 🙂

The wedding day was lovely and the happy couple literally beaming with love and hopes and dreams.

The day after the wedding, we slept as late as our children did 🙂 then we ate steaming delicately crisp waffles smothered  in favorite toppings, mine being peanut butter and syrup. (See, I still have part of that little girl in me somewhere 🙂

It was so refreshing to see happy faces and brave smiles and family warmth. To feel  that we are loved and cared for. No matter what comes our way in life. That’s how family is meant to be. That’s the kind of family I want to raise. The kind of person I want to be.

Love your family  today. They really do need it. And so do you!

Special Kids

We are packing up to head home again. Can’t wait to be in our little apartment house and watch Kobe play and watch him scarf oatmeal down (something I didn’t do at his age 🙂 read him books and hear him say things like he did the other night at Linda’s house. “Pee. Bubbles. Bath. Bed. ” In that order 🙂 

Kierra seems back to her baseline. We are thankful and praising God! I always forget how the adjustment of getting home is so good it’s almost overwhelming and my emotions are all over the place usually. So pray for all of us 🙂 that we could ease into the daily routine again.

My favorite verse of the morning that I hang onto like a lifeline and ask God to create in me…

“I do not live anymore. It is Christ who lives in me. I still live in my body but I live by faith in the Son of God who loved me and gave Himself to save me.”

Cheers to the weekend!!!

Special Kids

Hello January

Our Wild flower child….

Just as the subtle fragrance

and the strong vibrance

of the wildflower..

reaching for the sun,

waiting for the rain.

So you entered our lives.

face turned upward,

lovely. delicate.

but feisty against all odds.

shedding your gentle

life altering fragrance over our hearts.

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Hello Friends…Since Xanga and I seemed to be clashing more often then was necessary  I decided to try a new blog space….So we hope for the best. (Which would be that i would be smart enough to master WordPress. LOL!)

January came with a sigh of relief to me! I was tired of last year 🙂 and all the changes it brought us.

Then on new Years Day, I was afraid of 2013. It looked like a dreadful monster, waiting to pounce, wanting to wreak havoc in my life. What an AWFUL way to start a year!

After some conversations with my long suffering husband, some honest chats with God, and ..tears, I came to a sense of Peace.

God is already in our tomorrow.  Just as when we expect guests, we prepare for them, so God is preparing for us. When we get there, we will have EVERYTHING we need!

Kierra had pnemonia in November of last year. She recovered, except for needing oxygen around the clock. That isn’t a problem, but her little face does get sore from the tubing, especially since she rubs it in frustration. We have taped it on, which seems to help, but then her cheeks get tape sores. She’s doing well with it right now, which we are so thankful for!

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Two weeks ago, I got a very bad virus from Kobe 🙂 Awful aches and a dead head weight in my sinuses. Kierra seemed to catch at least a touch of it. I had her to the Dr. because of a fever, and breathing very rapidly and hard. They suspected pneumonia again, so we got her started on antibiotic, and turned up her O2. She slept most of this week, believe it or not.

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I love when she can relax and not fuss, but sleeping so much isn’t too healthy either. She is retaining fluid again from her kidneys not functioning properly. Any virus that attacks her body also seems to make her kidneys a little more sluggish for awhile.

Her lab work on Friday did not show any critical levels, although she still seems to be extra puffy and not losing weight the way I was hoping with her raised levels of Lasix. Pray that she could improve and be able to open her eyes, enjoy life, and show us her lovely smile again.

The past two months have shown an amazing change in her! her personality is slowly emerging and we have so much fun hearing her ‘talk’ to us. She smiles and coos and acts so grownup.

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She loved her cousin’s visits when we were in TN over Christmas. it was such a gift from God to have her healthy enough to travel. She did better then i ever expected!

Kobe loves playing with her. he tries to imitate the therapists and stick toys in her mouth. He tries to take her temperature and play peekaboo and gives her kisses. She loves the attention when she’s feeling well.

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Kobe got to make his first snowman recently. he was so amazed to play in the snow and cried brokenheartedly when he had to come in.

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and one last shot….just to remind us that our God who is so much bigger and stronger then any circumstance has us cradled safely in His arms…

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