Redeeming Hardships, Pressing On

Praying Warriors, 

In crisis everyone is rocked with the devastating news, everyone helps. There is great testimony during this time. The comfort of cards, meals, and money all make a difference as the dust settles. It's only natural that the world around moves on, they don't live in the crisis context, nobody stays there but to those whose lives are forever changed it’s a hard road to adjust to the “new normal”.

Thankfully there have been many helping hands as we welcomed Anna Elizabeth almost 3 years ago. Our way of life is amended to care and serve Anna, mountain after mountain the trials come and go. We want to do all we can. As parents the learning curve is steep and life can storm. Honestly I’m amazed that people still read these and want to keep up and pray with us. People I haven’t seen in years even. With Anna there is much repetition of issues, slow progress, and our faith sounds parched and raspy at times.

Lo-and-behold we made our first visit back to Anna’s NICU hospital Evanston North Shore. Lindsey and I did date night at the hospital cafeteria, the line cook still hollers “what’s yer cheese!?” We asked security if we could sit on the couches outside the entrance to the NICU. Those were our “living room sofas” where we greeted all our many visitors for two months in early 2014. As we sat and took in the setting, we were moved to tears of thanksgiving and of memory. We prayed in thanksgiving and shared our testimony of God reviving Anna with a nurse there who came to check on us. We remembered her faintly, she was blessed and broken to hear how Anna is doing now. She was so comforting to talk to. I notice one theme in my life is God returning me to the hardest, darkest of places and times to write a renewed story. He wants me to know that it doesn’t hold me captive, but that Christ in me has redeemed those memories and pressed me onward towards His goal for me.

The church that upheld us during Anna's birth left us humbled. We knew that they loved us, encouraged us, and prayed for us when it mattered most urgently in the crisis -the revelation we found is that they still love, encourage, and pray for us 3 years later! We as parents felt the love. More surprisingly, it made me feel purpose for Anna. I know God has a plan for her, but now I saw it unfold. On this visit, she was an encouragement to many, her smile and joy was new to these faithful prayer warriors who only remember a 4 pound 9 ounce baby.  People marveled at her height, her goldilocks, and her sweet-soft personality. Before each well-wisher was Anna the girl who is recipient of answered prayer!

God impacted us so much through the hands and feet of that church. To God be the glory! how beautiful God is to utilize His children to meet our needs when He could have done it all solo. God employs “the middleman” to show His love and we are a family well aware of that. Isn't that what eternity will be like?

For our family, what outlasts our best efforts as parents is the love of God.  Lindsey and I can attest how God unified our marriage through His gift of prayer. God’s gift of the Scriptures spoke to us in uncertain times letting us know that no matter what we are never alone. The love of God has so much mercy that every tear is accounted for and every sin can be washed; a desperate heart crying for help will always have rest in Jesus Christ.

Please Pray:

-For God to open doors for us to attend the Institutes for the Advancement of Human Potential in Philadelphia for one week. They specifically teach Doman therapy. which isn't something covered by our insurance.

-For approval of our second request for the CES Medicaid waiver as we as still waiting to hear back. There are many added benefits to this waiver that i have already mentioned including a help to pay for installing a ramp in a minivan,

-For the continued health of Anna, for all her coughing to stop at night, for the administration of all her medicines, for her reflux to stop as she strengthens her core, for better ability to track objects with her eyes.

-For more triggers to bring her to laughter, we have been delighted in a surge of laughter from her lately.  

-For our night nurse Carroll who started this week (two nights). That she would develop a bond of care and lightheartedness with Anna that causes Anna to progress across the board. That she would have wisdom and resources to notice things Lindsey and I haven't considered.

Holding the Scriptures up to see My Reflexion

At the Burning Bush there's a side of Moses that I often latch onto because of my role as a special needs parent. I find that I have many of the same answers that Moses did.  In light of what God is calling Him to do, Moses is pretty sure God is talking to the wrong dude.

God: "therefore go. I am sending you to Pharaoh so that you may lead My people, the Israelite out of egypt." Ex 3:10
Moses: "Who am I that I should go..."
God: "I will be with you..."
Moses: I if I go how will the Israelites believe me
God replies by telling Moses the summary of everything that will happen.
Moses: "what if they don't believe me?"
God then shows him some of the signs Moses is to perform like the staff changing...
Moses: "Please Lord I have never been eloquent... because i'm slow and hesitant in speech.
God: "Who made your mouth? Who makes him mute or deaf, seeing or blind? Is it not I? Now go! I will help you speak and i will teach you what to say."
Moses: "please Lord send someone else."
God burns with anger at Moses but finishes by giving Aaron as a spokesman

God graciously is patient, clearly present because of the burning bush, He is prophetic in describing the events, and God even offers Moses and understanding of His perspective. God's point of view is offered when Moses comes up with the excuse of being a bad talker. "Who made your mouth?" Dang, I would not want to be Moses then and there. I think Moses was looking at himself rather than on God.

God is not asking me to lead his people out of Egypt, I'm pretty sure. But He is asking me to lead my family. I resonate so clearly with Moses' reception of God's information. God gave me a perfect peace the day Anna was born, amid trauma and tears there was God holding us together. But I was certain that I could not withstand a brain injured daughter. "Who am I that I should have a medically complex kid?" I work at Target and go to seminary what in the world do I know about Hypoxic ischemic encephalopathy? As the questions unfolded and decisions were needed we presented our circumstance to God kinda like the promise He made to Moses "i will be with you."

At times I contemplate with the fear of man similar to Moses when he asked God twice about others "what will people say?" I often wonder how others will treat Anna and my family. It's hard to navigate flippant remarks or see loved ones not know how to respond to Anna. Growing in God has helped me give grace to others that hinder and unknowingly tempt us to be upset or sad. If I was my old self I just know I would snap on some defensive confrontational rant. But God is with me He knows and therefore I rest my case on Jesus.

God responded to Moses' concerns about Israel accepting him with prophesy and equipping. I can say that God has not prophesied to me about what town or job is in my future, however God has promised much to me through His Word about Anna and i will always hold Him to that. For example He has a plan for her, God loves her, Anna is no mistake or surprise to Him and God is most definitely working through every detail of this with us. God is good.

As for equipping i feel that God has shown the miraculous to our family time and again. From gifts, meals and volunteers at the church, to Medicaid, United Healthcare and my condo; we are not in need in fact we received Anna's first wheel chair recently. It sounds weird being grateful to God for a top of the line wheel chair when He has to power to cause Anna to walk. But what about the kids like Anna born in a third world country? This equipping gives me courage for the future. What have I to fear when past fears he quenched exceedingly well.

As I continue the creative paralleling  Moses progresses his dialog into excuses ("I am slow in speech...") and ultimately asking God to choose someone else. Anna's birth and the ensuing months were way too much for me to handle. "Pick someone else" came across my mind too because I have a history of mental illness. But that was Satan talking trying to exploit my past weaknesses. In truth, so much faith came from calling upon the Lord with my wife then. God was so steady in shepherding us moment by moment. It is by God's grace that I can say that have always wanted to be her father and am privileged to be that for her though it isn't always easy.

 There are times when I do grumble about stuff like the reflux, the sacrifices, the medical needs, the progress, our space, and therapy blues. God knows I get emotional, bi-polar, weep, and think everything is gonna fall apart -that's not very often anymore because Jesus calmed my storms and then looked to me asking "where is your faith?"  Faith to see God in the circumstances that cause me weakness.

Finally God was provoked to anger and gave Aaron to grow Moses into leadership. Though I  anger God with my appeals because I'm looking at myself rather than on Him, in His loving-kindness he gave me Linddsey a person to be companion through this journey. To grow me into fatherhood, what a gift Lindsey is to remove my excuses and constantly  go far and wide to where the Lord leads us.

Please pray:
-Anna was diagnosed this week with a reactive airway disease. It's has similarities to asthma, she has coughed every night for the last three months needing repositioning while sleeping. They think saliva is seeping into her lungs slowly while sleeping. Pray that we remember to give her three medications for this. And for our appointment with pulminology next month to have a strategy when Anna gets sick. Please pray that we would qualify for the chest percussion vest, this would ease our home therapy.
-In three weeks we will have a night nurse helping us two nights a week. Pray for our relationship with Carroll the nurse to be built on a foundation of care for Anna and trust.
-Please pray for a greater surrender to God on our parts, Anna is pushing 30 pounds and is tall. It's wonderful to still be able to transfer her ourselves. But she is getting heavier, her diapers need changing, her care will become more challenging. And so we have to double check that we are still in that spot of trusting God will strengthen us and give us all we need to willingly serving Anna. Help us to ask God for a servant's heart that is greater than Anna's greatest need.
-Pray for a ramp for our van because the new chair is too heavy and odd-sized. there are several options. We are also asking God for an adapted minivan in the coming two or three years.  May the Lord have a testimony for these needs too.
-For Simon to rid himself of his sickness.

Amid Ability and Disability

Dear Prayer Warriors,

Christmas is a time of thanks for the gift of Jesus. He is the gift of grace, redemption, healing, regeneration, and eventually glorification to sinners. Alleluia

I will drag my index finger across a row of chimes carefully to engage Anna in sound and then Simon attempts to repeat my gesture, after about fourth chime he grabs them all and starts tugging. It’s a grace to see Simon explore the ability of his fingers. Simon is exploring the octaves of his screams too; Anna’s left quiet, teary, startled. My son will crawl straight to the toilet bowl because he has the ability and memory of every water exposed place in the house.

There is this interplay in my home between the constant activity of Simon and the immobility of Anna, ability and disability, independence and dependence. It may be heartbreaking to outsiders, it certainly is a demanding dynamic, however all this is a grace opportunity to see the Almighty more clearly. I’ve never had to open a book to grasp the neurological complexity of the human body and mind because Anna and Simon show me. I’m filled with wonder about God’s infinite wisdom to create a brain that commands thought, able hands, legs, and feet. Even more miraculous is the minimal training and equipping it takes to teach an able bodied child a motor skill.  

We are currently teaching both kids to walk right now. Simon is on auto-grow compared to sweat-and-tears Anna. There is progress in both kids and joy to behold. The teaching part with Simon is more external, making our home safe, giving him an assist, and a smiley target to walk to. Then on his own he can stand up, boldly wiggle his legs and laugh about the fact that his legs are working. With Anna the teaching is at first internal we need to break the tone/spasticity, stretch, put on her equipment, and then from routine to remind her that it is good and normal to be weight bearing.

I recently revisited a book (on tape) about the biblical model of parenting. The thrust of the book is how parents are actually accountable before God for the gift (their kid) that He gave us. “Train them up in the way they should go.” It made a whole lot of sense when I was thinking about Simon, I have to guide his choices, call out sin, impart wisdom, and show him what it looks like to abide in Christ. This is teaching by example and explanation. Then outta nowhere it hit me I started weeping; I know Anna has excellent cognition however she is currently non-verbal and immobile. All the application points of the book seemed null and void until the Lord furnishes His full healing. So I asked God “What are you asking me to do with the gift of Anna? Tell her not to play with matches? To look both ways before you cross the street?” I don’t often get sarcastic with God but this thinking just surfaced -it’s not funny to Him.

As I rested my case, calmed down, waited, and asked God for what I’m accountable before Him for regarding Anna. The book continued on with the passage in Deuteronomy 6 about how parents need to remember, explain, and share God with their kid when they stand, walk, lay down, on the road, in the home. It was the walking that struck me. Perhaps because Anna recently spent three weeks trying to learn to crawl and walk. I thought of those neurological connections she doesn’t have, the ones that gives a sense of balance, the ones that intelligently show Simon that alternating feet is way better than walking two lefts then one right.

So a vow is in order. I think a valid application for me to fulfill Deut 6 with Anna would be for me to show Anna the way she should go, meaning that I should show her how her body should go. I need a greater personal pledge to Anna’s PT, OT, vision, and speech. Not aligning paid professionals but becoming Anna’s servant intentionally.

Please Pray:

-For grace to fill our hearts, make things possible, and bring joy to our family

-For progress for Anna in crawling and walking and head control.

-For health, a week ago Anna became sick again, waking up coughing, needing repositioning, and struggling to keep her throat clear

Praise God for:

-Christ with us!

-For a nurse we interviewed and will help us two days a week!

-For Anna's wheel chair that was once denied being accepted for purchase through insurance.

-For the CES waiver re-evaluation that went well.

Joyeux Noel,

Nicolas, Lindsey, Anna et Simon

God's Timing is Perfect

Dear Prayer Warriors,

On Anna’s bedroom wall I nailed a woven hat with a ribbon on it. I bought it with full fatherly affection around Easter last year. It’s lovely. When I eagerly came home with it, it dawned on me that Anna could not wear the hat because it has a protruding rim for the whole circumference. Anna’s head has to rest on something almost always. I felt stupid for a second, like duh, I just want to chuck it like a Frisbee. By God’s grace after that moment of being heartbroken about it God gave me hope. I chose to see the hat as a symbol of waiting on the Lord for His healing of Anna. I placed it on the wall in wonder until Anna could wear it because she will have gained head control.

At the center of these Prayer e-mails I want to be honest about my relationship with God and my family. I have found that honesty drives empathy, which compels prayers.  Then together we surrender and lay down Anna before God.

Truth be told, my faith isn’t mature its maturing. So it’s normal that I share imperfect incomplete understandings of faith and God as I try to better grasp His Word and not carelessly handle Truth. God’s healing has left me confused; I also sense some personal fears that may confuse my mindset. I want to work through and explain a bit about Anna, Panama, and Portland. What is God asking me to believe Him for regarding Anna?

I’m not grumbly or feeling like God miss led us because He is in control. Both trips were met with much grace and help. It’s more the fact that my faith tells me that He is healer, so what’s holding Him back? Perhaps I’m appealing to Him about the results. Truth be told there has been healing/progress that originated from these travels. You have to be around Anna often to see it. Anna’s therapists have noticed a decrease in tone/spasticity, praise God. Wrists that were unwilling to rotate a certain way now do so without resistance. Most noticeable to me are her eyes that are working to grasp their surroundings -much more than ever before. They are much more engaged and intentional. Thank you Lord.

As you well know I have wanted her core muscles to really spruce up, that her reflux would end and the head control would be mastered... As if to say that I would be ok with the other issues still existing. Why isn’t it enough for me to recount how God kept her alive in the early days, how she has been spared of seizures miraculously, and especially how God meets us every day to empower us to care for her?

I’m confused because healing Anna is an easy and little thing for God. He also has a stunning track record of healing even today. Prayer warriors, we prayed out of expectancy, fervently. So I humbly ask “Lord, where is the healing?” To clarify: I’m not asking this to guilt, scold, or demand God do what I want for Anna. I ask because I know He is able, why wouldn’t He? I trust His reason is good. My role is to wisely say “It is well with my soul.”

Anna is a gift no matter her degree of handicap. I think the best prayer we can pray is “God be glorified through the healing of Anna in Your time in as much as it pleases You.”

Please Pray:

-For Anna to qualify for the Medicaid CES waiver, we first applied in Febuary and were turned down. Anna is being reevaluated tomorrow. This would enable increased therapy hours and options as well as a fund for things like a van ramp.

-For reflexes, she has no defenses like when she is being attacked by Simon. She'll take the hit and cry. Lindsey is trying to train her arm and legs to activate when Anna is attacked.

-Praise God we have hardwood floors! Pray that we would now do our part and use them by placing anna in her crawler daily. 

-For God to take away her reflux, that Anna could one day feed herself and eat something more solid than purees.

-For my heart to be yielded to the Lord's will and trusting in His call for me to father Anna.

-For a RN to provide the needed relief of care that is heavy on Lindsey. We have a two companies looking but no match yet.

-Praise God for Anna's health returning to her, no more congestion and coughing, she is sleeping through the night.

-For the ability to roll over on her own

-That I would be gentle and attentive to her needs and the person she is becoming. Often i forget she is changing and growing just like Simon.

Thanks for working through this with us,

Nic, Lindsey, Anna, and Simon

Latching onto Jesus

Dear Caring Prayer Warriors,

It has been at least a double fortnight since my last entry and for that I am sorry. I know you are always interested for news about Anna and how to better pray for my family. Thanks for your commitment, that is worth its weight in gold to me. I can't believe i used to live without ever asking anyone to pray for me. O how desperate I always am for a touch, a word, a hug, a direction, a smile, an encouragement from God -He chooses you all frequently to administer those. God is so good.

I know God is doing great things and is bringing His strength our way because we are all enduring various weaknesses. Most pressing would be Anna. She has been ill for three week, ever since our return to Denver. There is much to thank God for: 1 she has a strong cough and fights to clear her throat. 2 she has a g-tube so we can easily give her the nourishment and medicine she needs. 3 she has a wonderful large bed fully adjustable so that she can be positioned any which way. 4 she listens well to stories to preoccupy her mind as she remains slow on the go.

We've delighted in Simon's crawling and standing milestones recently. We eagerly await the sleeping through the night milestone. I know people say it goes fast, but i must add that we are enjoying the evolution of his quirks and gestures. This boy has given me a deeper sense of wonder about God's plans for him/me/mankind. O and praise God he has remained healthy.

Lindsey and I are finding ourselves worn thin. I've been sleeping in the living room these three weeks weeks so i can tend to Anna and Lindsey can tend to Simon. I was sick now Lindsey seems to be on the verge. Sleep deprivation, interrupted sleeping, not sleeping enough, it is all challenging for my character.

We look to install a flooring for Anna's crawler and walker next week. How wonderful to think that our prayer requests are a "yes" in God's time. We may push that back. Toys line the furniture and walls everywhere, the dirty dishes are backed up like a friday night at Denny's, and the cars need a wash.

All this to say, Please Pray:

-For Anna that she would be healed from this sickness, have a clear throat and patience for al the discomfort. That we can have a routine again surrounding therapy.

-For our family devotion times to be a time of peace and focus on God's Word, singing and prayer. With all the discomfort going on its hard to concentrate and enjoy this time of family discipleship.

-For Jesus to be our all in all regarding this storm, that he would be the Savior, healer, protector, and friend. so that we would not believe lies, or give into temptations, or hang onto bad attitudes or unforgiveness.

-For Simon to eat and sleep better.

-For Lindsey to have time away from our dearies to sleep and rest and shop at Joann's

-For peace and rest given our full schedules.

-For Joy (who administers the intensive model of therapy) to be Anna's new Physical therapist,

-For Anna to qualify for the CES waiver which would allow more benefits and activities.

-For An RN to work here to lighten our load.

-For the flooring to be beautiful, well installed and for God to be glorified, the Church is stepping up to help us of their own initiative. We are so blessed.

-For me to be Christlike at work given the busyness, a new boss arriving, and stuffing to sell. May God be glorified in my work.

-For time to express our gratitude to the many, helpers on our "thank you " card list.

 "Let us not lose heart in doing good, for in due time we will reap if we do not grow weary." Galatians 6:9

Thanks,

  Nick, Lindsey, Anna and Simon

Celebrating God for Stuff

Thank you for upholding us through this time in prayer. We are vulnerable to so much. Yet we hear our Shepherd chilling us out, helping us stay the course, and keeping us from harm. We desire to be home but still have half of Anna's intensive therapy sessions to go. Believe me when I tell you: all of this has been well worth it and certainly blessed by the Lord. 

Anna's Physical Therapist Jeni has a PhD in Physical Therapy. It seems like a contradiction in terms, she doesn't respond to Doctor,  one thing is for sure she knows what Anna needs. She brings great intensity, observation, and evolution into the treatment. What a great experience so far, from 9 am to 1 with her every day. Her heart is dialed in with these kids too. Fun fact, she roller skates to work and is on a roller derby team. 

Jeni sees so much ability in Anna; Given how much time she spends with cerebral palsy kids that is great news. We cheered and made their web page because Anna propelled herself forward 6 feet using no help from us, just her feet. Anna was in a wheeled contraption that promotes crawling. We thank God for the head strengthening going on its obvious!  

We have had the privilege of sharing our faith walk and our "real" family moments with our hosts. It is literally one of those situations where they are blessed to be a blessing to us. They have a very routinely, clean, and peaceful house used throughout the week for small groups. Simply put, we are unable to exude that same harmony. They are gracious hosts and so accommodating. I feel loved by the Lord that He would arrange for us to stay with them free of charge for three weeks. They make me wonder if there is such a thing as a stranger in the Body of Christ? 

Please pray: 

-For our PT Jeni to build on what Anna has been doing. For wisdom as she commissions us to care for Anna at the handoff. 
-For vision what a motivator sight is, she is engaging her eyes more and we are overjoyed at seeing all of Anna's efforts to see and grow. What work 
-For miracles, we are going to put Anna in a walker next week! 
-For Anna to be healthy (she is still congested) and strong. 
-For progress so that Anna can work to do things on her own. 
-For our marriage to be rich in good communication, so we can better bless Anna as her parents.  
-For Simon's health, he has had stomach issues. 

Thanks for praying, 

Nic, Lindsey , Anna and Simon

O for a Thousand and One Tongues to Sing

Hello Prayer People,

My brother has this image of Anna running through a field and dancing because of the Lord’s healing. My brother never came up and told me this; it pops up when we pray together for Anna. God has given my brother an image of grace for his niece and it is like a promise for him.

I don’t have such a time and place that I see Anna miraculously able. However I do frequently wonder about Anna’s voice. This girl has the prettiest coos and elementary sounds but she is nonverbal, unable to tell us anything outside of her use of volume, tone, and frequency. So I have often asked God what her voice and singing would sound like, how pleasing it must be for a father to hear his daughter singing to the Creator in worship.

Before Anna I would have thought these types of believer’s visions to be improbable at best. Now I see that these yearnings of healing come from believing with the heart before the head. God always wants our hearts first.  My head doesn’t grasp that Anna could one day sing worship to God but my heart does. Anna will be healed, should it be here, gradual, partial, complete, in heaven?

Sorry for the long intro.

One of the reasons Anna cannot eat solid food is because her tongue has never learned how to move from side to side. She has only been able to use her tongue in a forward and backward motion. The natural use of her tongue is limited neurologically. If food were to get pocketed in the sides of her mouth she cannot retrieve it. For the last year and a half we have tried with the feeding therapist to stimulate this ability with a vibrating brush, creative spoon feeding, massaging… but with no result.

Then two nights ago, Lindsey was brushing Anna’s teeth and asked me to come quick. Praise God! Anna was trying to locate the toothbrush on the sides of her mouth with her tongue. She was nearly rolling the sides of her tongue, showing us that she can move her tongue to the side.

Let’s Pray:

-For increased grace to make new neurological connections through therapy and new cells bringing ability to Anna’s tongue

-For visions and dreams that are a “Yes and Amen” in Jesus

-For Anna’s current sickness to pass swiftly. Pray for her ability to clear all excess mucus from her throat. Her congestion is causing her to wake up frequently and/or causing her to gasp for air. She cannot roll over, or go onto her side to be more comfortable without us rotating her. Also, may the Lord help us as we suction her it is tricky and often triggers reflux.

-We noticed little reflux in Panama throughout our trip, however back in Colorado the reflux increased again, may God take away her acid reflux

-For Traveling mercies for the upcoming road trip on Friday to Portland for Intensive therapy. 

O For a Thousand Tongues to Sing has been on my mind ever since that toothbrushing night especially this verse:

"Hear Him, ye deaf; His praise, ye dumb,
Your loosened tongues employ;
Ye blind, behold your Savior come,
And leap, ye lame, for joy."

Nicksters, Lindsey, Anna Pie, and Si-money