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;)