A Bountiful Crop

Ahhhh, to sit on my bed wearing frumpy clothes, drinking coffee, eating more than my share of Good & Plenty, with only 1 of the 3 kiddos at home to make me crazy:) Quite the Monday morning right...wait, it's almost noon. Anywho, a few days ago while driving the kiddos around town and running all sorts of errands, my ever oh so inquisitive 8 year old asks me, "Momma, whatever happened to our Poka Dot Ports?" I confess, it took me a second to even recall what she was talking about. Funny, how life just keeps happening around here and we forget about all sorts of things including lost passions, favorite shirts, goals we set a month ago, reordering make up supplies ect. I'd like to call it living but deep down I know there's more to it than that. 

Let me back up a bit. 

June 11th I went in for my first set of spinal epidurals. Not at all a fun day but in my case, pretty necessary. 4 shots of steroids with crazy long needles were injected into my spine in  hopes of easing the gut wrenching pain I struggle with daily from mild scoliosis, nerve damage and degenerative disk in my low lumbar.

June 25th a steady growing begin tumor was found on my right ovary and the next thing I knew, I was having a hysterectomy done. Soon after I was diagnosed with severe RA to accompany the fybro already having a party within my body. Lovely.

August 7, I turned 31, a happy day indeed:)

September 5th, I had my 2nd round of spinal epidurals done for all the same reasons. It's an awful process but one we had to endure again after the hysterectomy wiped out the effects of the last set.

In between, Riley had surgery #11, another G-tube surgery with a new and improved tube since her last one had broken off. Yep, broken off indeed. We haven't had the most luck with g-tubes but the positive of it is that I'm now a pro with all things feeding tube related:)

In the time of my bed rest from the surgery, God really spoke to me and to Port. We saw many of our truest friends and most loving family rally around us to support and love us during a super hard time. Meals, flowers, cards, calls, FB messages, visits and more kept us afloat. But it was in this time, when all of the our world came to a near screeching halt that we realized what God was calling us too. There was and still is so much in our lives that  must change. 

We were getting comfortable, too comfortable in our walk with Him, in our prayer life, even those we held as close friends. Suddenly it was as if God shown a bright light into our lives, showing all that needed changing while forcing me down to heal. We knew that in order to truly honor God, to really and whole heartily seek Him, we needed to walk away from certain things and even places. It's a rugged process, one filled with turmoil and sorrow. But as His word promises, our joy came with the morning. Even in the midst of opposition and trial, we began to experience such blessings in so many aspects of our lives. Prayers we had been praying were being answered, peace was given, our hearts and spirits restored. Isn't God good?! 

I encourage you today, to pause this rat race called life and sincerely seek Him. Take a minute and inquire of the LORD what He may have you do next, what area of your life needs changing, what bright light needs shining for you. 

"Take rest; a field that has rested yields a bountiful crop." ~ Ovid

My Mommyhood:)

"Who did not pick up their dirty clothes?

Who made this mess with the toothpaste?

Everyone go potty before we leave!

Time for school big kids!

Please bring me your dishes!

Why are you screaming?

Why are you crying?

Where are your underwear?

Did you brush?

Why in this world did you do that?!

Have you lost your ever-lovin' mind?!" (everyone's favorite saying of mine)


My days are filled with such, many deep breathes, prayers said silently and aloud. Some days we cry more than others. Some days we laugh more than others. Most days are spent in the car heading to one appointment or another. Leea's history book is in one hand, Riley's passie in my pocket, Carson's backpack on my arm, Riley's blanket on the other arm, the diaper bag, hospital bag, water bottles, snacks, keys, extra clothes....you name it and I'm armed with it. 

As Mother's Day approaches, I've been reflecting much on how I am as a mom, what I can do more of, a better job at, and most importantly, am I showing them the love of Jesus enough? Along with all of these thoughts, I am reminded of how blessed I am.

Leea was part of triplets, naturally. We miscarried 2 at 8 weeks and she went full term to be born in 2004. She turned 8 in February, was baptized this year and is almost done with her 2nd grade homeschooling year.

Most of my pregnancy with Carson in 2006 I spent in ICU and on bed rest. Every day I thought may be my last and I have never been as sick since. Everything from my heart to my thyroid was out of whack. Carson will be 6 later this month and just finished his K year of homeschooling.

At 10 weeks, we cried as Jesus took our sweet Hannah to be with Him on April 30 2008. My heart was torn right out as it never had been before. Little did I know Hannah going to be with Jesus would make the way for Riley and change our hearts forever. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away. Rev 21:4.

Half of my pregnancy with Riley I was on bed rest again and we were told she would be a miracle if she made it full term. In 2009 we welcomed our sweet Riley girl into the world and praised our Father in heaven for another sweet baby. We had no idea what we were in for, that God has chosen us to be parents of a special needs baby. She just turned 3 in April and though she has trisomy X syndrome, a dozen other diagnosis and no evidence of a paternal gene in her genetic make up, she is indeed a miracle. Every doctor she has ever seen tells us the same, "I have never seen a child like her."  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14

I am undeserving, so unworthy of the gift, the privilege of being a mom. It's the hardest job in the world, one that brings tears, laughs, worries unending but I wouldn't trade it for the world. After turning 30 last year, I began to really find myself, determine the kind of mom and wife I want to be. God has never ever stopped blessing me.

There are surgeries and hospital stays for our girl that I wish weren't needed. Too many appointments on the calender. Too many specialists that most parents don't ever want to take their child too. Tears from our big kids as they worry and wrestle with anxiety for their baby sister. Two 15 month deployments and one 4 month deployment taught me how to be a single mom.

I know far too much of grief, more than any one mother should feel.

Now my days are spent juggling Riley's care and appointments with our brave and amazing big kids. Yet I look around me and can't believe I am so blessed, so loved. God has given me such favor in allowing me to be a mother. When friends leave you hanging, when they walk away and call it quits, when the world has left you in the storm and there is not a soul around, my babies and my husband are there. We cry together, pray together, school together, cuddle together, laugh together, conquer together. Each family has their share of hard times and trials. What our family has come thru together is nothing short of God's amazing grace, mercy and love.

I pray that I am reflection of Christ to them. I pray that God's word is imprinted on their little hearts that are so full of love and wonder. I have my share of regrets, should've, could've, would've. I wish my big kids didn't see their baby sister lay in a hospital bed so often, endure more than any child should. I wish that their extended family cared enough to know them and birthdays were not forgotten. I wish their best friends hadn't moved away a life time ago. I wish they didn't know just how cold and hard this world can be.

However, I rejoice that they know Jesus. I rejoice that they thrive in their schooling, that they love the church they have all been raised in. I rejoice that we are all so close and forgiving of each others faults. I rejoice that they have mercy for those in need and hurting. I rejoice that they hold doors open for others, that they love to help other kiddos doing therapies, they love to cook and bake, that they know their daddy's family and love them so much. I rejoice that they can recite scriptures, that they can understand Riley better than I some of the times. I rejoice that they are healthy, that they love the army, that their daddy is their hero. I rejoice that they have all I never did. I rejoice that they understand what a budget is, that they will give so freely. I rejoice that when I see them and feel their tiny arms around me, asking if I'm hurting or if I feel ok, that I see Jesus in them.

This Mother's Day I take nothing for granted. I praise that we are home and not in the hospital, that we are together, not separated by an ongoing war.  I praise that they love me as they do. My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever. Psalm 73:26

Happy Mother's Day to all mommas out there. May this weekend and this day remind you of your many blessings, that you would remember them today and always!

Nichole


Children are a gift from the LORD; they are a reward from him. Psalm 127:3

A Dark Night and A New Promise

I've been praying for weeks asking the Lord where He wants for our blog to go, who He intends for us to reach. Our blog has been a sort of intense and private journey that in many aspects, we've made very public. Our hope has been and still is, to reach as many lost souls as possible, to encourage fellow brothers and sisters in Christ by keeping it real and honest. Lastly, to reach out to parents and families that have special needs and disabilites.

Already this new year of 2012 has been off to a rocky start to say the least. After 2 weeks with a very sick Riley, it took 4 procedures (a stomach scope, biopsy's of her stomach and esophagus taken, another PH probe test, many labs and a gastric emptying test) and one night in the hospital to get her back to solid ground. 3 stomach ulcers, a loose nissan and a small amount of reflux were discovered landing us on Riley's 4th daily medication.

Upon the direction of the Lord, I made an appt with my doctor to discuss somethings I felt needed to be taken care of. On top of the fybro, degenerative discs in my back and scolosis, I have been diagnosed with clinical depression and OCD. This, I am still wrapping my mind around.

I was so discouraged. I had hoped 2012 would be an amazing year for us of new hope, progress for our Riley, learning and making things happen for our big kids and I know in ways that it still will be. Every single day and every single night I cry for our Riley, for my own pain. I cry tears that have no end in sight and I cry out to the Lord for His direction, His healing, His wisdom and His mercies. It's so hard to stand when the waves of this life just keep knocking you down before you can catch your breath. And yet just when I thought I was in fact catching my breath, I became so distracted. Those I thought I would be life long friends with, sisters in Christ, prayer warriors, were no more. Suddenly Facebook had become and acceptable means of working through feelings and withering friendships. Acceptable to some but not to me. Godly? Just the opposite if you ask me. Before I knew it, words were twisted, ill intent showed its ugly face and Facebook was a hiding place for some to lash out and be hurtful without having to actually hold a conversation. Puts a new meaning to being a coward. I hit my knees as I have so many times before and gave my broken heart to the One and Only who can make it whole. I researched His truths verses the lies being thrown at me.

Sometimes all that we can do is believe. I believe that Jesus never leaves or forsakes His children. I believe He counts our tears and uses everything in our lives for His good purposes. I believe that He has good for me and for my family. I believe that I will one day see the my 3 babies that are in heaven. I believe that Riley is fearfully and wonderfully made. Then it hit me...

In reading of the book of Psalm, I came across the following Psalm:

Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up. Psalm 71:20

That's my promise. Yes, I've read this Psalm many times over the last 4 years of chaos and turmoil but today it brought new meaning. The Lord has allowed all of these hurdles, hardships and heartbreaking times. I gain encouragement today knowing that He is going to one day raise me up again. From the depths of the earth, He will bring me up. It may not be until He comes back for His children, but He will.

We all have a story to tell. Not one of us truly wants disease, calamity, heartbreak. I know I don't. But then I am reminded still that this life isn't about me. As I prayed to the Lord, asking why, seeking His plan, broken for all He continues to allow, I am reminded that if depression, fybro, pain of all scales in this life, the trials my sweet Riley endures, wars and so on will win others to Christ, if others will look at my family and see the love of the Father, if one more woman feels a little less alone with a baby she can't make well or even take care of as she so badly desires to do, then it's worth it all. If depression and disease are looked at as blessings in disguise instead of a weakness in our faith and in our walk, then it's worth it. I'm here to tell you that a Christian CAN struggle with depression. One can visit dark days you once never knew existed and still see Jesus as The Light. What is even better is that Jesus can and does still love you in these most awful of places. These trials do not define me as being weak, not walking closely enough with the Lord, missing something or of sin. These trials show that He has something grand for me. He has a plan to use me and all of my broken pieces for His glory, to further His kingdom. It wasn't my plan, my way, my desire or my wishes.

Slowly in all that I don't understand, that's ok with me:)

Nichole

A new year!

I can't believe it's 2012! Boy did 2011 fly by! It was very roller coaster year for our family between all of Riley's health issues and a deployment. The Lord has blessed us with the most amazing family and friends we could have ever hoped for. I am so blessed to have the friendships I've had since high school, since our kids were born, combined with the ones we have here in CO.

I've been reflecting a lot on the year 2011 and what God has for us in 2012. It feels as though we've been stretched to our limits. We've learned all about everything from G-tube feedings to autism. I confess, there is much I wish I didn't know and have to learn. Our hearts have forever been softened to kids and families with special needs.

Leea began her 2nd grade year in homeschooling, Carson began K here at home. Riley had braces put on, 2 g-tube surgeries and a slew of different diagnosis. We began our 3rd deployment and really started a new chapter in our lives when Port was brought home. We have met some of the most amazing friends that I know will be lifetime friendships. It is because of these precious and amazing people, that we were able to devote and focus on our Riley during surgeries and hospital stays. Family really stepped in to help and bless us from many miles away. Through them, God has made a way and continues to provide for us.

Me....boy do I have ways to go. I am so thankful every day that God isn't done with me yet. I am a work and there is hope for me in Him. I am far from where he wants me in specific areas, I am being molded and shaped into His image.

I've never really made New Year's resolutions before but I am this year. I have quite a few and with the help of my Savior, I can make them happen.

The year of 2011 has brought to us the darkest of times that we have known but it has also brought to us the brightest of times that we have known.

I pray that 2012 brings you closer to Christ, that you see Him more and more with every day. I pray that healing is brought, that peace is felt..that which only comes from Him.

We thank each and every one of you for standing with us this year. We thank you for your heartfelt and constant prayers, for your support, for loving our Riley, for friendships, gifts of provision, for your service to our family.

I thank my God every time I remember you. Philippians 1:3

This crazy life:)

Goodness, it's been some time since I've blogged! Life has been beyond crazy so here's an update for our family, friends and followers!

In March Riley was diagnosed with PDD by one of our top hospitals in the nation, National Jewish. PDD is an autism spectrum disorder, meaning that in all major milestones and development, she is significantly behind (by about a year to 15 months) and often digresses.

In May, Riley had her G-tube put in. However, after several issues with the tube and tube malfunctions, we had a G-tube replacement surgery done in June. We also received Riley's trisomy X syndrome (the presence of an extra female chromosome in her genetics) diagnosis with genetic testing being done. We also learned of a seizure focus (a seizure spot on the brain) that is associated with her genetic disorder.

We started PT, OT and speech therapies in addition to the feeding therapy we had already been doing weekly.

In September, Riley was diagnosed with SID which is Sensory Integration Disorder. Basically, her brain is unable to relay to her body the appropriate times in which her senses should work. For example, Riley is unable to break a fall because her brain doesn't tell her she's falling. Her body awareness (what's going on around her, a sense of fear or danger, falling ect) is nearly non existent. She continues to pinch, hit, bite ect partly because she doesn't have a sense of touch as most of us do. In order for her to feel sensation, she needs to be aggressive to do it. We are currently using ankle weights at 3/4 lbs for 20 min intervals twice a day and are starting with a benik vest ( a weighted vest to wear). For kids with SID, and for Riley in particular, weight is a huge comfort when done correctly. Weight for kids like Riley provides comfort by making them feel compression and hugs without having to hug a person or sit with a person, something that is often times very very uncomfortable and unsettling for Riley. Weight brings her down from a rage, a tantrum or being very spacy and unable to settle and is a great alternative to medication.

Port was brought home from our 3rd deployment due to Riley's health and put on as XO for Rear D in September. The job change has been an adjustment but I really feel like we are thriving on Rear D because of our amazing command staff. We work alongside people that truly care about Riley and Port is at all appts with me, helping and covering down when I need him most.

In October we began hippotherapy in Black Forest. The natural movement of a horse has been shown time and time again to greatly benefit people with brain and neuro dysfunctions. I have seen Riley catch a ball, sign and do things that she is unable to do on land at this point. It is not covered by any insurance along with her ankle weights and vest but God keeps providing as the expenses pile up.

In November we saw the #1 doctor in the nation for trisomy x syndrome. She has been a huge support and a great encourager. She is our first official genetics doctor and has been very aggressive in Riley's treatment plan. While there is no known cure for any of what Riley struggles with, I am learning ways in which to improve her care, be her voice and give her more of a chance in this world. We are currently undergoing additional genetic testing to try and explain other symptoms and issues that Riley is having upon advice of her genetics doctor.

We also began with an in home nurse for Riley in November. What an unreal blessing it has been. Our services are provided by our insurance and we pay a portion each month to keep our nurse on board. It's been a bit rocky in the start of it all, a huge adjustment for me and very emotional but it's worth it and I know God is still molding me to be the mom He has designed for me to be.

Now amidst, ultrasounds for her organ check ups, clinics at Denver and daily therapies, God is working. It's all been made possible by Him!

I have my good days and my bad. I have my days where I don't need to question God, I'm ok with where Riley is, this crazy life is mine and we're making it. I also have my days where I can't stop the tears from coming, I'm mad at God, I question Him on everything, I fight those I love most, I am angry, so so angry. I keep my circle of friends close and tight. They along with Port, are the ones who see what goes on behind closed doors, who take my meltdowns, my episodes, who pick me up when I just can't take another step. They get Riley for who she is and love her as their own. I am so so very blessed by these friends. You know who you are.

I am so thankful that I am still a work. That in my grieving for our girl, my heartache, God gets it and in it all, I am still more blessed than I could have ever imagined:)

Faith Enough

There was once a time I stood very guarded. I was a social butterfly, playing nice with everyone but keeping my heart under tight wraps. Very few knew the real me and those that did I kept very close.

Life happens and the Lord brought my family to circumstances that forced me to reach out, to ask for help, to allow others in. Those that once protected me, that made up my inner circle were gone. It was time to reach out, to try, to let others in.

Over time it seems the darkness has shoved more and more of the light out until there is very little left. Maybe just enough for the step I'm on. I have cried to the Lord with all that is in me. I have begged, gotten angry, pleaded with and fallen into the one and only who can carry such pain. The enemy has no cares you see. There isn't a part of your life he won't touch and try to bring to ruins.

Looking back over my childhood, he hardened me to physical pain. I don't believe that it is coincidence that today I live every single day with gut wrenching pain. I am totally dependent on medications to allow me to move my legs, to bend without crying out. Words however are a different subject. They cut right to my heart, rip open my soul and leave me with pain that outweighs what I feel physically every day.

Today I write with such a heavy heart. I feel sorrow that threatens to overtake me. There is but a glimmer of light left in this very dark room that I call my heart. Words have been used to cut and cut deep. Some from those who seek to destroy me. Some that show me his pain, his anguish, desperation and frustrations. Words that fill me with the weight of what he too carries.

So we are at a crossroads. We can walk away or push thru.

But we have Jesus.

That's where it all becomes bearable. We have Jesus. We have a Redeemer, a Counselor, a Mighty King who has given His life to save us. He has paid the ultimate price that we may live. He has promised to never leave or forsake us. We has Christians, as believers don't have the option to walk away. We don't have to choice to call it quits. When our circumstances make us sink, we have to look up.

This morning, on my knees, praying and crying out I felt the Lord say to me, "Love, your faith has to be enough. It has to be enough for you both. He can't go on. The next step is too much. You must carry him as I have carried you by your faith."

"How Lord? How can my faith be enough when it seems so little just to me? It seems we recover from one report only to get hit hard with another. Those I have trusted have done what baffles me. It has been one punch in the gut after another and I can't breathe. Those I have called on and confided in have let me down. My heart is in my hands, my soul bare for the world to see. Lord it feels my faith is so weak itself. But I will obey. Lord, I will love him enough to let it be enough. I will keep fighting when he can't anymore. I will stand firm with my armor on, my heart protected so that I may take the brunt for my family if need be."

Let the insults come. Let the speculation rise. Let the rumors stir. Let the conversations flow. You are my Defender, my Rock, my Strength and Refuge. Brace us for the storm Lord. Lift him to higher ground. He is yours Lord. May my faith be enough for us both.

Nichole

Life:)

"Life is hard
sometimes-
crazy, mixed-up,
messed up.
And there you are,
in the middle of it all,
just doing your thing...
being strong and
brave and
beautiful
like it's
no big deal.

But let me tell you, girl,
it is
Not everyone can do
what you do.
Not everyone can handle
things the way you can.
While you wonder sometimes
if you're doing ok...
the rest of us are just
watching in
WONDER.

I received this card a few weeks ago from a very special and dear cousin. I've had it hanging in my kitchen since then. I cried and cried when I read it. What a treasure it is to me now. I'm sure she wanted to bless me, to encourage me....I wonder if she knows just how much she did;)

Random Yumminess

There was a time I thought I knew something, I had it all figured out. Life will change that!

I wish for beautiful green grass instead of the "trees" growing in our yard.

In 3 months we have said goodbye to our 3 best friends and daddy.

My life feels like a top secret story at times, constantly guarding what I say and to whom I say it too. Thank you dear army;)

I'm more for caution than for throwing caution to the wind.

I think more of discernment and discreetness than for my life going on FB in constant status updates.

I used to work with special needs kiddos in middle school. I was drawn to them. Never did I imagine that we would have one of those precious angels ourselves.

Riley is in a "booooo" stage in her life. Everything she eats must be blue. Oh joy.

I can't believe I'm almost 30.

Homeschooling sucks right now. I think it's safe to say we're in a valley of sorts with it.

I have read 5 novels (300 pgs +) since the deployment began. I sit up all nights some nights reading.

My pet peeve: when parents bring themselves or the kids out and to church sick. Someone's cold is someone elses' nightmare, a trigger for worse to come.

I am terrified of cops...as in can't talk, the words won't come. I'm such a dork.

I'm totally ok with being removed from someone's FB friends list and even more ok with being blocked. I do not suffer a broken heart here.

That being said, I don't deal well with people quoting scriptures or putting a status up instead of just saying what you need to say to that someone. Grow up.

I am so in love with my husband:)

My best friend is someone whom I thank God for every...single...day.

I won't ever buy the book, "A Fish Out of Water" by Dr. Suess. Carson sits with me every single time we visit the train table and insists I read it to him. I adore this this time with him. If I buy it, he may not sit with me, asking me to read.

I operate by visions and dreams. This is how the Lord speaks to me most clearly.

I miss my life at the ocean but wouldn't trade my mountains for it all:)

My Prayer

How great is our God that we can go to Him with all things? We have the freedom, the approach, the time and ability. We can take it all to Him, we can be as raw as we need to be, we can lay it all out with boldness, confidence and mercy. (Hebrews 4:15-16).

With every passing day I am learning more and more that this world is not my home. The Lord is coming back someday for His children and every knee will bow, every tongue will confess that He is Lord. (Romans 14:11)

Port and I have never needed a diagnosis of any sort to know that there were things going on with Riley. When I was around 17 wks pregnant with Riley and on bed rest for complete placenta privia, the Lord spoke so clearly to me. He told me then that Riley would be different, that she wouldn't be normal according to the standards of the world but not to fear for she is fearfully and wonderfully made, just as Psalm 139 tells me. He told me that she would teach us and show us things we had never known before, that she will lead others to Him by what she endures. We knew then, that whatever lay ahead was God's will for our lives and what a roller coaster it's been since then.

Funny how once the Lord Almighty confirms something to you, leads you to a divine moment with Him (and I've had many of these since Riley's birth) the enemy will come in to tear you down, causing doubt. I have struggled for months, more so now, that I have given Port a sick baby, a baby who is not normal or well, one that I cannot make well for there is no cure. I carried her for 9 months, she grew in my body. I did something wrong.

Since then, maybe I didn't fight hard enough. I've learned that with some doctors, not all, but some you must fight and fight hard. I fight like hell for Riley with each doctor that comes our way. I treat them with respect and try hard to show them that Christ dwells within me, but I fight.

After an entire week of no news on her brain MRI, I threatened to go to the neuro's office until he would see me. This approach is one I've used several times in the past with other doctors who don't feel Riley deserves their time. Still with no help I waited one more day. I left 9 messages over the course of a week. I then called back and said I would be at the office in the morning to take Riley's records and results, that JAG would escort me if I asked them to do so.

In the meantime I called Riley's Ped, knowing she has access to test results ect. I asked her to read them to me and explained that the neuro was too busy, unwilling to help. She read to me what maybe we expected but hurt beyond what words can express. There is an abnormality on Riley's brain that represents seizures. We do not know that Riley has or hasn't had seizures because they come in so many different types and forms. But there is a spot there. It looks as though it has been there since birth. My heart hit the floor.

"How will I tell my husband Lord? Am I to prepare for seizures, has she been having them without me knowing? Lord, has she suffered with this and now 27 months later we know about it? Why do the reports keep coming, why after Port is away? Why didn't the doctor call?" While many say to be thankful for answers, we are weary of them in ways.

"Lord you made her but nothing appears right; her lungs, her feet, her legs, her throat, her stomach, hear ears. She has tubes Lord, in her ears and stomach. She has braces on her feet Lord. She is in more therapies a week than I can make possible. Her brain. Her genetics. What else???? Forgive me Lord for questioning you. Forgive me for looking at your work as "not right." Forgive me for making it about me...how I feel as a failure in carrying her, how I could be doing so much better with my husband away. It's not at all about me but all about you Lord."

I don't understand this fallen world. I don't understand why doctors play around with the brain of a human being. I don't understand that lack of compassion as the neuro finally calls back to say, "we have something to discuss with you but it's no emergency. Can you come in to talk in 2 weeks?"

"Bring my husband home Lord, I need him. Bring him now. Take us to doctors that are filled with you. Bless those who pray constantly for us, who help us faithfully by serving and getting out of their boat. You make all things beautiful in your time and Riley is beautiful. She was made by the Creator, knit together in the secret place. Strengthen your people, that those who do not know you will. Forgive us. May we praise you and show thanksgiving in all things, may we bless your Holy Name in the midst of unbearable heartache. It's ok if you don't heal her, it's ok if you choose not too....but please give us the strength and courage to take the next step, whatever that may be."

Jesus, Jesus, Jesus, Jesus, Jesus, Jesus, Jesus.

I'm Just Sayin'

God is good! Amen? Amen! He is still in the business of miracles, healings, providing and moving mountains!

Port and I prayed healing and recovery for our finances and we got a deployment. Deployments though, mean extra income aka "deployment pay."

I expressed a need for leotards for Riley and 3, yes 3 were purchased from others as a gift to her!

I asked the word be put out that we need a crib. Riley was in such need of a safe place to sleep with enough room to accomodate her height and medical supplies that have to be in the bed with her. We were gifted a brand new crib this week. Yep, brand new! Not only that, but my awesome friends spent the entire afternoon here today putting it together and rearranging furniture so that all the bedrooms are open and fully funtional.

Two weeks ago we were sent a monetary gift from a precious family member, making it possible to stock up on groceries, put the big kids in a sport and buy bandages/gauze/tape that our insurance doesn't cover for Riley.

At that same time we were gifted with numerous gift cards from a sweet sweet family, making it possible to make purchases like fans (we don't have AC and it's in the mid 90's), onesies for Riley, summer clothes for the big kids along with numerous purchases to allow for more storage of Riley's medical supplies, toys ect.

Family and friends have been outpouring their time, money and resources to my husband. He's been receiving mail and boxes regularly. It's so important to keep moral up but also lifts some of the burden off of me when others send what he's needing.

My father in law, my dad, was here for an entire week. Though the visit wasn't exactly what we had planned, he was here to celebrate Carson turning 5. He was here to spend time with us, give us a few fun outings and share in all it takes to get thru the day around here.

Recently my 3 best friends in CO have moved. One is actually in the process of PCS'ing now. My entire close knit inner circle is leaving, my husband is already gone. I have prayed for a new friend. I now have quite a few... Alicia, you will never know this side of heaven what you do for the rest of us military wives. You are ALWAYS there, ready to pitch in and get your hands dirty with me. You are constantly showing us just how Jesus loves by your acceptance and your servants heart. Tesia, you have filled such a hole in my heart with your love and friendship to me and my family. There are no words to thank Nick and you for standing in the gap, for doing what my own husband would if he were here. I have laughed more with you than I have in so very long. I love you both so very much, more than you know.

We have answers for our sweet girl. It's not what we wanted but we are trusting in God's plan for us. We know His plans are better, His ways are more than ours.

A few girls from my church have gathered to help me with childcare for my big kids during Riley's appointments and therapies. What a relief and blessing it is for us all! Tiff, thank you for taking every single week faithfull for me:)

I could go on and on...I just may in my journal. It's so important to remember that in the midst of life, we have to count our blessings. We have to recall what the Lord has done for each of us every single day. This life can throw what it wants my way. It's ok really, I know how it all ends and victory is the Lord's.

God is so good, I'm just sayin'

Riley's Road: Who She Is

This post is about our Riley girl and who she is.

Last Thursday I received a call from our Nero doc to bring Riley in first thing in the morning that next day. I knew something big was about to happen. Worried, anxious and full of dread, I hit my knees and prayed that Port would be calling soon. When he didn't, I wrote him to let him know I was taking Riley in and why.

After sitting in the Nero waiting room for 20 min a nurse came to tell me our doctor was running an hour late due to some emergencies at the hospital he was dealing with. I asked her why we were here, explained the call I had gotten and one look said it all. "Come with me dear, let's get you in a room for some privacy." She handed me form after form with Riley's name and birth date but I could understand none of them. They were full top to bottom with medical terms, one after another, doctor lingo. I cried from fear which seemed to be taking over quickly and then pulled it together to go back to the waiting area so Riley could play while we waited for the doctor.

I don't know how much time passed before our doctor came into the waiting room, gave me the same look the nurse did and escorted me into another room. Sitting there, in a cold and sterile room, without my husband, holding these forms was one of the hardest things I've ever had to do. For nearly 26 months Port and I have prayed without ceasing for answers for our girl, that someone could make sense of what she deals with. Finally it was coming to that but I was terrified.

I felt like I was in a fog, I could understand nothing, I could hear nothing. Until suddenly it came together and began to make sense. I asked the doctor to repeat to me what he was saying numerous times. I was mad, I was so very mad. Why Lord? Why our girl? Why after so long of fighting do we find this out just after our 3rd deployment has started?

"A long road ahead of her, time will tell, there is more testing to be done, more therapies, I can no longer treat her, you will get thru this, I can't give false hope, I don't want to alarm you, we're going to fight for her." All things he said to me. I only wanted to know if I did it. Did something happen in the pregnancy I should have seen or noticed? Did I miss something once she was born? Did I not fight other doctors hard enough when I told them all something was wrong? I know that "it" isn't my fault but haven't totally understood it either.

We don't want Riley known for a diagnosis, for her struggles, therefor, we will continue to give and respect her privacy as best we can. Those closest to us know what needs to be known.

Riley isn't going to just get better. There is no therapy, no surgery, no specialist that can take this or even ease it. Perhaps that's the hardest part of it all. I took the best organic prenatal vitamins we could afford during my pregnancy, I was on bed rest for much of it. She is fully vaccinated as are all of our kids, she's never been to childcare outside of her church class and a very few trusted friends/family. She was breastfed exclusively for 13 months and has taken an organic liquid vitamin for infants and other supplements to help her tiny body since she was far younger than she is now. I am extremely cautious about who is allowed around her, who she plays with and the kids in her classroom and have no problems removing her from situations and others when I don't feel she is safe or that she is at any risk. She gets sick like any other child but we take extreme caution in keeping her well as best we can. She has seen all of the best doctors in CO, she has been in the 2 top hospitals in the nation. She wears the best diapers, eats the best groceries and the best medical care money can buy. That being said, it doesn't matter much when your child isn't healthy. It's hard to know that very little to nothing you do can or would change anything you deal with now.

We've taken the last week to grieve and praise at the same time. We've let it sink in though some days it doesn't seem real. While we are so heartbroken at what can't be fixed, that all we've done hasn't helped, we praise our Father in heaven for His answers. For such a time as this, He has chosen to allow us to know. We have answers and I'm sure many more are to come but we have some answers. We have a diagnosis and we have the attention of the military and some doctors.

Riley is fearfully and wonderfully made just as Psalm 139 tells me. The God that I love, I live for and serve doesn't mess up. He made Riley just as she is for a divine reason. She is perfect in His image and quite perfect in mine as well. While she has had to endure much more than any 26 month should have too, I know that it could still be so much worse. It isn't terminal or life threatening, we just have to fight different. It doesn't change who Riley is and who we are. She belongs to the Lord and she is a precious gift to me, one that I don't deserve. Our faith doesn't waver but strengthens as we see that we are equipped for this. Our love for her and each other doesn't shrivel up but takes over and pushes us to fight harder.

It would be so easy to feel abandoned in this. It would be so easy to blame God, to blame doctors for what has been missed until now. I could even blame the lab results that came back, changing our lives with the same proof over and over. I can blame the symptoms, people, you name it. But there is no peace there for me.

We are so blessed to have Riley just as she is. We are so unbelievably blessed that God has chosen us to be her parents. It's hard at times, but on the hard days I try hard to remember this. Raising a special needs child is hard. It's no cake walk. People don't get it and some don't care. They don't take the same precautions you do and they lack at times in consideration for our child. But that's ok because in the midst of this storm I can see Him. I know that my God has a tight grip on my hand and He is leading me every single day in Riley's care, in parenting our big kids and in every other aspect of my life. He is gracious to me to give us wisdom, He is blessing us so much in meeting our every need and granting us peace when we want to panic.

She's Riley and God is doing great things thru her:)

A tightrope of Sorts

The last 10 days have felt like a tightrope walking exercise of sorts. Someone lurking around the house, seeing I was 1,500 over for an oil change, the internet going out, the fence nearly falling on one side, Riley's tube coming out TWICE, finances in the toilet (a deployment in the beginning stages will really do it). My doctor insists I'm depressed, Leea was up throwing up last night, every single night without fail Riley's pump malfunctions and I'm up with it, 7 appointments for Riley last week...and the list goes on.

I've told God I can't do it so many times over these last 10 days. I've told Port this can't be what God has for us, I'm done with deployment and it's hardly begun.

I try really hard to remain in a CONSTANT state of thankfulness, no matter how bad it seems at the time, no matter how hard it is to do. Truthfully, I have more blessings than I can even count. It blesses me that our kids see it too. When they pray before a meal and before bed, their prayers are forever long and getting longer. Each line starts with a "thank you Jesus for...".

It's God sense of humor I guess...what I've told Him I can't possibly do, is exactly what He's had me do. I had to put Riley's tube back in myself at 3 in the morning a few days ago. I cried and cried, doing it by flashlight, begging God to direct my hands and speak peace into me. I've burned tissue off her G-tube sight myself, praying that I didn't overdo it. I've taken cues from my husband when he's called that are hard to take, so hard to absorb. We speak in code and I must be careful to listen to every little detail so that I know what's happening with him.

After putting Rileys' tube back in myself I cried out to the Lord in anger. I was so mad that I had to do it, so mad that it's been one thing after another. So mad over a lot of things. He met me as He so faithfully does and reminded me to keep my focus. I literally looked up the the heavens and felt His peace. The events of a day are never what I think they might be, I am in a constant struggle not to be emotional and offended in my flesh but to see things from the persepective of Christ.

It's a tightrope really. I don't have time for the drama of life, to explain where I am today. I hardly have time to shower and can't remember what appointment is when despite my huge purse calender the size of a notebook. The Lord gives me peace as I need it and tells me to keep my focus. I walk the tightrope, keeping my head up, my eyes lifted to His face, keeping my balance and trying hard not to let the things of the world, the tactics of the enemy cause me to lose my balance, to wobble too much. As soon as my eyes are off of Him, I nearly fall. I can't fall because 3 sets of eyes, hearts and smiles depend on me. I am so careful of my time, making sure that what I do doesn't take my eyes off Him, that I'm not caught up in what I shouldn't be. I have to keep my focus.

I encourage you today, as the storms of life rage on, as the world pulls at us from every direction, to stay the course on your tightrope. Hold your arms out on both sides, let Him lead you. Keep your head up as not to look around at the distractions. Keep your eyes on Him and only Him. One step at a time, one wobble at a time, my eyes are lifted up and nothing else matters.

His Great Name

"My God, how can this be what you have for me?" I've asked that very question so many times over the last few months. I've pondered, tried to figure, understand, wrestled, panicked and fought it all.

I debated on sharing but I feel the Lord has led me to do so. Just 2 nights ago I woke from a sound sleep in total panic. I couldn't breath, speak, think or even pray. I stayed this way for near 2 hours while my husband prayed for me, loved me, walked with me, let me cry on his shoulder and tried to talk it all out with me. I know that panic does not come from the Lord, such anxiety that I can't move is not from him. He is a God of order, peace, strength.

In a matter of days, the reality of the wars going on overseas will hit all to close to home for my family yet again. "My God, how can this be what you have for us?"

Riley's tube feedings have now been increased to day feedings, longer night feedings and followed by the finding of a severe dairy allergy. 10 days on antibiotics have done nothing to control the raging infection at her G-tube site. For 2 weeks straight, we have managed 4 appointments a week. We have 3 all in one day, tomorrow, they come on the heels of 2 prior appointments this week. "My God, how can this be what you have for our girl? Will it ever get better? Can't you see I'm already stretched so far? How much more must our hearts break? What are you doing?"

My grandparents who disowned me long ago, still refuse to see their grandchildren, haven't seen them in nearly 5 yrs and have never seen Riley or have any contact with me at all, even in the midst of an incurable cancer that has struck their lives in such a tragic way, I still have no idea what I did. "My God, how can this be what you have for me? What did I do?"

Pain I thought I would never feel, a conversation I never thought I would have to have, happened indeed and has left a huge hole in my heart. "My God, how can this be what you have for me?"

Then I realized, it's all at the sound of His name. I don't have to resort to panic or anxiety. I don't have to understand or figure it out. I just have to call on His name. I just have to look up towards Him. I just have to choose to keep praising Him in the midst of this never ending heartache, this nightmare I am stuck in. I just have to choose to point others to Him as best as I can.

God has such funny ways at times. A box comes from a dear and very loved friend at the most perfect time. Yet another message on our FB telling us what an inspiration we are, how much we reflect Christ, how we said something or shared a verse and personal experience that made such an impact on someone else's life, how hearing Riley's story has given them a stronger walk, more to be thankful for. He so mercifully chooses to give me such amazing people who love us, to get us, who in such obedience to Him, show us how much we are cared and prayed for.

Just practice saying His name for yourself a few times....right now. Jesus, Jesus, Jesus, Jesus, Jesus. You are high and lifted up. Every fear has no place at the sound of your name.

He is it friends. He is all there is and all that we need. Lost are saved, find their way at the sound of your great name. All condemned feel so shame at the sound of your great name. The enemy, he has to leave at the sound of your great name.

Listen the words of this awesome song and sing of His name for yourself:)

Q&A and Riley pics

So in the last week we've had tons and tons of questions about Riley, her care, how she is, what has to be done for her now ect. So, I decided to try and answer them all on our family blog! In searching the internet for pic's of feeding tubes ect., I found it really hard to find them....so we've decided also, to include some pic's of what goes on here....to inform others and give you an idea of what goes on in Riley's life now.


(this is the pump used for Riley's feedings on a stand. The formula bag is attached at the top of the pole, the tube comes from the bag, to the pump, to Riley's stomach. The pump runs all night from 9-5, giving Riley an all night feeding of 80z. 1 ounce runs per hour.)


(The bandages you see cover her 3 incisions made during surgery, marking where different tools were used to perform her surgery. The port you see, poking out of her stomach is the actual G-tube. Because surgery was only a week ago, she still has redness and a lot of tenderness. The G-tube opens with a small lid feature, allowing me to insert the feeding tube. The formula goes directly into her stomach thru this port.)

Riley can have whatever she will eat by mouth during the day. This is done to keep her from being dependent on the feeding tube, to encourage her oral eating and to help her poor mouth motor skills. If she gains some weight, eats enough calories during the day, we will only have to do night feedings. If she continues not to gain weight and thrive, we will have to incorporate day feedings as well.

Riley no longer sleeps in a bed, but a pack n' play now. This is done so that she is unable to get up in the night and move from her bed to ours. If she were to try this with the G-tube in, she could seriously hurt herself, detaching her stomach or worse. This way, she can't get out of bed while getting a feeding and ensuring her safety.

We have a special back pack that can be used for feedings on the go. It's great for her because she can be up playing or at an outing while still staying on her very strict feeding schedule.

I have to log every single food she eats, keeping a calorie count, making sure that she's getting the calories she needs and being sure that her formula dose she gets is exactly what her body needs.

She is tolerating the formula perfectly.

Leea and Carson pay little attention to the actual G-tube but understand well why Riley has it and what it does for her. We spent a lot of time talking to them before the surgery, reassuring them and educating them on what was happening. They are very careful with her but don't worry or get upset about the tube at all.

Riley will likely have the G-tube for 2 yrs.

I can cover the G-tube site with gauze when we go out to ensure her safety and to keep the site clean and protected from others.

She is not able to do things on her stomach because she could really harm herself here too, causing damage to the site.

She will see the surgeon in 2 weeks to have the stitches removed. Her recovery time is 6-8 weeks.

We are doing well, learning of this new life, of what Riley needs and how to do it. Port has been nothing short of amazing, helping and stepping in. We've been a real team with her. I'm slowly coming to terms with the G-tube, seeing the good it does and will continue to do for Riley. It's a very emotional journey.

The hardest part for me, has been to see and understand that some people aren't comfortable with Riley,that she will be treated differently by some, that people we love don't understand and clearly don't want to understand, so they stay away and are afraid to visit or be around her.This reality became just that during our hospital time with her. It is beyond difficult to accept that normal isn't what God has for our family or for Riley anymore. I'm slowly allowing Him to remove the desire for normal, and accepting with joy what He does have for us. After all, we're all works and I truly do love these days. I will take and love Riley for who she is, regardless of what tubes, procedures, therapies ect she has to endure. She is our miracle, our perfect gift from God to show us how much He loves us:)

48ish hours after surgery

I'm sitting in the hospital room unable to sleep and thinking that just maybe my thoughts are gathered enough to type them out.

We are 48ish hours out of the surgeries we have been waiting for, for a long time. Let me start from the day of: Surgery was at 8:30 because the doctor decided to take Riley back a bit early. Though Riley has had a few surgeries before, I never get used to handing my baby over for an operation of any degree. The surgeon, whom we met 2 wks prior looked at me and said, "It's ok. I will take care of her as though she was my own." I cried and handed Riley to Port, who would be with her in the operating room until she feel asleep from the anesthesia. The next 2 1/2 hours were a blur of text messages, phone calls, tears, fears, hand holding and desperate prayers. I wondered if we had made the right choice by fighting for these surgeries for so long. I was haunted and still am, that there is no turning back.

The nurse came to get us and take us to Riley after the surgery was over. Just as they woke Riley, she yanked the tube going to her lungs out and nearly got her IV out of her hand as well. We met another nurse who handed me Riley and ushered Port and I to 2 chairs in the PICU unit. I cried and tried my best to comfort Riley. She has always had such a hard time coming out of anesthesia and is so afraid when she wakes. Nurses were everywhere, untangling cords, taking down numbers, hooking her to oxygen, taking her temp ect. I asked to see her stomach. Port looked at me as to make sure and I nodded yes. The nurse lifted Riley's gown and showed me what there was to see. I fell apart and cried as I never had before. I begged for the surgeon to come out, take her back to the OR and remove the tube. I begged Port to have it taken out. I cried more and pleaded with Riley that one day she would understand the choice we had to make, that one day we would see the benefit from the G-tube but even I wasn't so sure. For now, it's a scary monster that has invaded the tummy of my beautiful baby.

In the 2 wks that we had to prepare for the surgery I looked all over the internet for pictures of a baby with a G-tube. I thought maybe if I knew what to expect, I could deal better, encourage Riley more and generally educate myself. While I didn't do much reading on feeding tubes, I knew a little but never was able to find pictures.

The surgeon came out, I kept my cool as best as I could and listened to his orders for Riley for the next 24 hrs. He assured us that the procedures had gone text book, she looked excellent and even told us of her bright recovery. He told me we would need to of course continue her asthma meds but that she no longer needed the reflux meds. "She's not refluxing anymore", he said. I have dreamed of hearing those words. For Riley, it's so much more than reflux. It's killing her lungs, bringing constant pain to her ears, preventing her from eating, literally torturing her tiny body. I knew it was a step in the right direction and that our fighting had been blessed with favor from the Lord.

The next 24+ hours were a blur. Many texts, calls, FB messages,dear friends, doctors and nurses filled our tiny hospital room. Lots of checking her sites, monitoring pain, morphine, trying to get her to respond to our voices and more desperation. I was desperate from a sign from God that we had made the right choice, though I knew we had. I watched her every moment, never leaving her bed side, waiting for her to wake, to show me a sign of pain or comfort. Being clueless in all of it left me feeling pretty anxious for anything and nothing that she would show.

She slept well the first night, heavily medicated. We opted for every dose of everything they would give her to keep her comfortable. We held her hands and cried over her as she slept. I would look to Port's eyes for reassurance and comfort. I begged God to send His peace.

The next afternoon we began to stretch out the morphine doses from every 2 hours to every 3. We sat her up in the bed when she would wake and supported her on pillows when she slept. I held her for hours in my arms taking comfort in every next breath, every squeeze of my finger she gave. She would look at me, look at those talking to her but remained expressionless. There was no emotion on her face at all, no hint of her comprehending even our voices for the first 2 days. It was the most heartbreaking ordeal I have ever been thru as a mother. A dear sister in Christ came to see us, and I knew it was safe to break down with her. We spent much time crying at Riley's bedside for what our child must endure, trying to find God's plan and purpose in it all.

I still don't understand it and I may never. Though many go through so much worse, seeing a tube coming from my child's stomach is the harshest thing to me. I don't understand why she hasn't been well, why it must be so hard for her. Her ordeals don't seem morally ok to me, they don't seem to fit for our beautiful girl. I hear others talk at times about not wanting to vaccinate their kids bc of shots, of allergy testing being so invasive, how anesthesia can be the worst, and I wish it were that simple for our girl. I guess it's been somewhat of a grieving time for Port and I. We've had a lot of time together that I'm so grateful for. We've had privacy but the love from others who have come to visit at the same time. I've asked God why many, many times. How is it that the world we live in is in constant war and babies have tubes coming from their bodies to perform what they own body can't, to sustain them? How can that be?

Most recently Riley began to sit on her own. She has stood twice for several minutes with our help. With this surgery, the internal organs go numb and so the recovery is long and slow...6-8 wks actually. She's smiling and saying mama and dada. She reaches for our hands each time a nurse or doctor enters the room. She has become alert enough at times to watch Elmo or watch the bubbles we blow float around her bed. She is happy to see Leea and Carson when they are here to visit and likes to look out her window. We've done slow wagon rides around the Peds ward, visited the playroom briefly, blown bubbles, played with a pinwheel, done puzzles and sang songs. I've seen tiny glimpses of our girl come back. She shows others her stomach when they enter the room as if to say, "Hey, look at me now. It's going to be ok, see what I've come thru and how strong I am."

Nichole

Riley's Road: g-tube and reflux surgeries

Lately, I can't remember what I've blogged about and what I haven't. I'm tired to put it mildly and life is about to get much more hectic for us.

2 weeks ago we saw a feeding therapist, who is amazing, compassionate, can finish my sentences, and seems to get it better than any other doctor/therapist thus far. After an hour and a half of meeting with her and 3 of her other respected colleges, she shared with me that Riley must have a feeding tube. She feels Riley is a huge red flag for a severe dairy allergy. Dairy, because on most days, it's the only food group Riley actually consumes anything of. Riley has very poor mouth function, meaning that she is not able to properly chew and swallow her food. The severe reflux (that most doctors haven't felt is severe enough) has eaten some enamel off of Riley's back teeth. If that isn't severe, I don't know what is. 55 acidic reflux episodes in 24 hrs seems pretty severe to me. Wait to grow out of it? You want me to WAIT??? I'm not the most patient of people to begin with, but what these "doctors" have failed to see is that in the process of waiting to see if she will grow out of the reflux, Riley is the one who suffers. She is the one who pays by constantly having reflux, aspirating to her lungs and ears.In the meantime, as we wait, doctors tell me it will take at least 6 months to get her lungs fully clean, strong and functioning after the reflux is gone. Thanks, but at this point, I decided to keep pushing for a doctor with warm blood running thru their veins, who could care a bit.

Because of the severity of the reflux, the severity of Riley's lung issues, she needs a g-tube, otherwise known as a feeding tube. We need to bypass her lungs, get nutrition into her tiny body and take her off dairy totally.

Several people who see Riley often have offered me their advice that they don't think a g-tube is the answer, it's too soon, she needs more time to grow, it's so drastic, there's no going back ect. Well in one respect, they are right. She isn't growing and that's the problem. Riley has gained less than 1 whole pound since January. What she is consuming is going up and down her poor throat a million times a day, coming all the way to the top of her throat and staying for as long as 3 minutes at a time, going into her lungs and to her ears. I have to find a way to get nutrition into her body, bypassing her lungs. I've got to find a way to help her grow, to feel better. I'm convinced that Riley doesn't know what it's like to feel good, to be full. She eats random bits of food, usually 2 bites 3-4 times a day. It's not enough to ward off the hunger pains she feels.

Truthfully though, it sucks. I can't believe we are having these talks with therapists...and why are the therapists the ones moving on her behalf and not the doctors???? I am so very saddened that there is no other way than to put a tube thru her abdomen, that I will have to tube feed her. On May 6th, there will be a tube used to feed my daughter. A tube. A tube.

During the same operation, the surgeon will perform the reflux surgery, attempting to correct the reflux issue. I'm told he can take up to half of her stomach to use for this operation. Half??!!

I wish I didn't know words like MRSA, g-tube, reflux surgery, PICC line, in home care nurses, leg braces, ear tubes, staff, therapies, mental disorders, high developmental delays, chronic....

I'm terrified of the the surgery. Terrified to put it mildly, again. I know it's what is needed. I know because the Lord spoke it to me months and months ago. I knew it was coming and have had a peace...until it has actually started to happen.

What if Riley hates me? What if I've done the surgeries and therapies and all else to her? What if I've caused her pain and being uncomfortable? What if I can't care for her properly? What if I can't keep homeschooling? What if I drown once my husband deploys AGAIN? What if people treat her harshly because she's different? What if people don't get us and our life? What if no one helps? There are a million what if's that I just keep trying to fight.

Please pray for me, for my focus, for my peace. Please continue your prayers for my family. We leave this weekend for 10 days to the East Coast to visit family. Traveling is so SO hard with Riley. Please pray for my husband. It hurts his heart in ways that hurt mine, that his baby girl must go thru so much. Please pray for our marriage, that is becomes stronger in what tears most. Please pray for our big kids. They try hard to understand and show love and compassion but I fear they are drowning in appointments, in Riley's care and I don't want to miss them, to overlook them. Please pray for our Riley girl. There is so much she doesn't understand and I know she's tired of appointments and testing. Please pray she knows how loved she is, how perfect in Him that she is, how it's going to be ok...one way or another.

Nichole

Faith Choices

Bitter, angry, disgusted....my feelings for doctors. They have come along side of me so many times, offering to help, promising solutions only to let me down, drop our case, and just disappear.

I cry. I cry while driving, while in the shower, while folding laundry, while cooking dinner, while lying in bed waiting for the next day to come. I am angry, I am so mad and I cry. I cry for our girl. It doesn't seem fair that she would go thru so much, that her road be so long.

I stress. I stress over each appointment. I stress over the latest report, over the deployment that will be taking my husband far from home when I need him so badly. I stress over surgeries, over many ?'s from loved ones, I stress over every aspect of life for our life isn't what I thought it would be....it's no where near it.

My doctor says I'm depressed and handed me a bottle of anti-depressants faster than I could say, "no thanks doc." I don't agree.

I say that I have the freedom to approach the throne of Christ Jesus with ALL things (Hebrews 4:16). That means, all my emotions, all my fears, all my worries and what if's. That means I can ask Him questions I don't have the answers too, I can talk to Him of the most intricate details involving Riley's care. I can bring it ALL to Him. His shoulders can bear the load far better than mine. He's not worried of the latest report, of the surgeries coming, of the deployment. Nothing shocks Him off the throne so why do I then carry it on MY shoulders instead of allowing Jesus to take it on HIS?

I'm reading this amazing book called Faith In The Night Seasons, by Nancy Missler. The book challenges and encourages you in the midst of your "night season" to see Jesus at real work in your life, to learn how to handle the hard stuff we deal with in life while being able to truly praise and glorify the Father. Nancy Missler, reminds you that everything in life comes from the Father, including the pain and hardships as our lives are God- filtered. Every time I pick it up, I'm so thankful to my dear friend who suggested I read it as she placed it in my hands:)

I'm reading now about "faith choices" and "emotional choices" and how I have a choice in which I will choose to act upon. Faith choices mean that in the midst of the yuck, in my tears and fears, I'm choosing to trust Christ and His plan for my life (Jeremiah 29:11). I recognize that Riley is His and that He has gifted her to me, trusting me with her care. He has a mighty plan for Riley's life and has planned for every event thus far. I can trust Him, I can choose to turn my eyes to Him, I can put my faith and confidence in Him, rather than in doctors. I can choose to do my best with her care, giving my all to glorify Him by serving my family.

Emotional choices are what we feel as human and any action that involves our flesh. When I stress, freak out, melt down, fall apart, throw my hands in the air....it's all emotional choices. None of these glorify the Father, none show my faith in Him to others but rather allow me a pity party.

I encourage you today not to be ashamed of the emotions you feel but to really ask yourself in the moment what kind of a choice you are making. Are you looking to the Father, making a faith choice? Are you choosing to give Him glory, thankful that He is in control(James 1:1-2) Are you praising Him, looking for the positive in it all? Or....are you lashing out and giving up? Are you giving way to fear and allowing the enemy a foothold? Are you choosing to be idle, not serving, not giving of your time and resources to help others? Are you shaken by your circumstances and unable to see clearly (Psalms 16:8)?

We have a choice...one moment at a time, one day at a time to make a faith choice. We can choose not to give in, but to persevere in running the good race (Hebrews 12:1, James 1:3). I encourage you today to make every choice you make, a faith choice:)

Riley's Road: The Unspoken

I will first ask your forgiveness and understanding for what I write today. In a great attempt to protect the privacy of our Riley girl, I will refrain from being awfully specific on certain things. I pray you can understand and continue to just love her, just love her.

For the first time ever, we gathered enough sweat in the suctions yesterday to perform the CF test. I think it was daddy's touch....he held her and loved her for the entire very long process and it worked:) Thankfully, he was able to come to this appointment. We will know on Friday what the results are. I'm praying that lab techs and doctors at Denver Children's and National Jewish will have clear results and be firm in whatever the outcome is.

Riley has a feeding eval very early next week and speech, OT and PT evals the following week. After all evals are completed we will know what types of therapies (the intensity of them) and how often she will need them. As of now we are looking at 6 different therapies at least twice a week. I have no idea how it will work and am even more unclear as to how it will work once the deployment has begun. I truly believe her doc's are working hard to help. We are still waiting on her genetics appointment as well as her neurological appointments and the reflux/voice box surgery to be scheduled.

We are dealing with some neurological issues, heavy ones. The behavioral health therapists really heard us yesterday, she understood better than any doctor thus far, she really put some pieces together for us. Sadly, her news makes such sense to us. Our hearts are broken, so broken today. Why did I pray for answers? Would I be better not knowing? It seems I do ok for a few days and then something more awful comes about. The appointment with the behavioral health therapist was one I debated on canceling for a week but really felt the Lord speaking to me to keep it, that there would be connections made, and there was. There are no true tests, but rather watching Riley and knowing her, being an expert in this field, a fellow believer and we finally have some answers....yet there are many more we need.

Our girl is so much more than an opinion, a diagnosis, an appointment. She is a child, a very loved child, a child who has been thru so much in her 2 yrs of life. A child of strength who radiates the love of Christ. She is a picture of perseverance, of determination.

Please continue your prayers for her, for us. As I usually say, we need them more than ever.

They had a ball!

As most of you know, this weekend was the Father/Daughter dance at the Crown Plaza this weekend. Last year Port and Leea weren't able to attend because Riley was in the hospital. But THIS year they were able to go!!!! I've posted a few of my fav pics:)



we started off the day getting Leea's hair done by a fellow army wife friend


daddy gives her a beautiful corsage


a true daddy/daughter team



our beautiful girl


hand in hand

:)

Riley's Road: It's back?!

I've learned a valuable lesson once again this week in terms of our Riley girl's health. While doctors and nurses make mistakes as we all do, nothing they do for a patient is 100% guaranteed...I still place trust in what they tell me, I value their opinion's even if I don't agree or they are hard to hear.

Several weeks ago we were told by a nurse that Riley's CF results were negative only to be told later that day, that the nurse had made a human error and read us someone else's results. It rocked me in a big way. I was angry but trying hard to forgive.

Last week we were told by one of Riley's doctors that her CF results had come back and are indeed negative. We were told the CF could finally be put to rest and never have to deal with it again. Until yesterday.

I always struggle with Riley's doc appointments bc it seems they just get worse. The news, the ups and downs of it all. Yesterday, while at one of the top hospitals in the nations for year after year, I was told that once again Riley's test results for CF had been misread to us. Struggling to control my fury, I listened to what was being said.

1) "We are not out of the woods" as her doctor shared with me. The Delta F508 gene had been detected after all. This particular gene is the most common gene found in those who have CF. The test was done 3 times to confirm that the gene is in fact present. As of now Riley is a carrier for the gene (she can potentially have CF children someday as a carrier of the gene.) She must have a high powered sweat test done next week (never mind the 6 sweat test she has had in the past with no valid result) to get either another positive to confirm she has CF or a negative to combat the gene found, making it so that she doesn't have CF.

2)Our ENT did in fact send his notes to her docs at National Jewish but failed to mention any of the news about the cleft in her voice box he found. He states she needs the reflux surgery ASAP and then we can work more on her ears. Her doc's at National Jewish feel he didn't mention such vital information bc the only way to detect something of this magnitude for sure is to take a camera probe down her throat. Since he didn't do that during her appt, he simply didn't mention it.

3)Riley's pediatrician has apparently turned down the need for the reflux surgery that all of her other doc's say needs so badly to happen. Without the pediatrician's go ahead, it can't happen. We are baffled as to why she would turn something down that we've been told Riley needs so badly, something that seems to be making the rest of her body so sick.

The doctor's God has placed on our path can't seem to agree, to make a move on Riley's behalf. In the 5 weeks since her last appointment we have not received one phone call of a series we have been waiting for (frm genetics, therapists ect). Unfortunately, with active duty military insurance, once you have been referred to a specialists, you can't call and make the appointment yourself. You must wait for that doctor to call you, once referrals have been processed and the doctor is ready to see you.

I'm reminded once again that I must be oh so careful for the amount of trust I put in these doctors. Our hearts seem to stay in a constant ache for our girl. It's so hard to be the parent here, feeling like you aren't doing enough, feeling like you've messed up somewhere along the way.

I ask God why CF has come back again, for the 3rd time. While the doctors clock out and go to take care of their own families, Port and I wrestle with the what if's, the room for human error, the heartache. I have felt fury like I have never felt before. I feel the closest to giving up that I ever have. So what if my giving up results in us not knowing? I have questioned the amount of sanity or sound mind I really have.

I am haunted at Riley's pediatrician's view on the CF issue. She has felt Riley shows CF symptoms since she was 10 months old.

Once again, a turn we didn't see coming on Riley's road. God promises He will never leave. We cling to that today with what is left.