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'