Friday, October 20, 2017

My Inheritance

Prayer Teammates,
I have been going through the book of Psalms taking a close look at God's declared works and attributes. "The lifter of my head" was one such quality. The other that has been striking to me is the declaration that "God is My Inheritance."
That sentiment aligns so well with how Anna is doing, how i am doing. The very night i sent out the last e-mail of our enduring: anna's latest sickness, my fatigue and wishing to never suction again, God has taken over. Anna hasn't needed suctioning since that night. In fact she is well and needing minimal nightly intervention for the last four nights. Our wednesday night nurse was bored having finished her book ahead of pace because Anna has been such a good sleeper.
The Holy Spirit has been addressing my sin issues of pride and selfishness at work, i have found myself apologizing for my frustrations and rerouting my relationships in the Light of Christ's path. I have been repeating "in this world you will have trouble, but be of good cheer for i have overcome the world." -Jesus.
I didn't want my last e-mail to linger in your minds without an accounting for all the answers to prayer we have been seeing. Following Jesus with Anna amid a world of able children might seem like how the Levites felt when God split up the Promised Land among the twelve tribes and then saying to them: I will be your inheritance no land is set apart for you. we don't get what everyone got, we didn't get what we hoped to get when we first set out to become parents. God in His Sovereignty saw it fit for us raise Anna, ours is a hope in the returning of our Lord and Savior knowing that Anna will be full healed today, in the days to come, or on On that Day.

Whatever Christians go through: in need, wanting, or in plenty we have a life that depends on God for all eternity. We can do nothing on our own.
Thanks for waiting with us, for this in Chirst Jesus our Inheritance is Glorious  Him

Saturday, October 14, 2017

The Lifter of My Head

Dependable Prayer Warriors,

Praise God honor His worth behind the things that seem grievous and fruitless. I don’t want the struggles I face; I don’t feel affirmed in faith. But I know His Sovereignty and Mastery over me is awesome grace! I trust it as I know it is Jesus’ work and not mine that counts most in my life. Although I don’t see God’s big picture I do feel He has given me more trials of late still I will praise Him. Satan is trying me at junctions of past victories. That was then, Christ is now!

I have spent a string of days just working, sneaking in a nap, serving the family and sleeping again with little effort for Spiritual things, recreation and fruitfulness. I choose see Christ as the Lifter of my head amid the fiery arrows of a tired mind and body. Meeting with Jesus in the morning is better than coffee! As much as I wish upon in my best intentions and optimism to “turn things around” I become emotionally unavailable due to overload during storms. I’m mentally working to find the cure or a quick fix to the problems.  I can’t self-help, self-care, self-esteem. Nothing for myself, done in my power will work. Even at work I have failed at my witness recently by taking the reins and succeeding at being a jerk. Humility, peace, relenting, forgiveness -Christ-confidence is the way for me. I mess things up on my own; it takes faith and grace to remember that I am born of the Spirit still even now.

 This is our third month with Anna being sick for at least a week. It remains a battle of prayer not just for Anna’s healing but for my loving caregiving. It is so hard to wake to the sound of her coughing, knowing I can’t ignore it. I go to her room half asleep suction and reposition her. Her cries of discomfort and spastic quadriplegic stiffness climaxes as she fights to clear her airway after my abrupt but necessary intervention, I don’t want this for her, I don’t want this for me. It must become well with my soul because I have been entrusted with Anna, I love her, and she has it so much harder than me.

In times of sickness We have the unique vantage-point of knowing how miraculous blowing your nose actually is. Anna’s saliva increases so much from post nasal drip and her self-soothing “hand to mouth” chewing becomes insatiable. Her chewed knuckles are splitting at the pleats, bumpy red buttons appear from constant moisture and irritation. Anna’s face turns rash-red where her hands and jaw rub. Praise God that Lindsey has devised a chewing glove that has become a barrier. We need constant adjustments to Anna’s needs. Only God can steady our course and keep our hearts soft. By His grace and intervention we are not growing callus to her needs.

I realize that Jesus is the only person who can actually do anything for us in these trials. It’s a good thing He’s got the time, comfort, and a caring persona to help. My kids need me anchored on dependable-Christ, May the Holy Spirit remind me to talk to Anna during those throat clearing sessions, to comfort her before, during, and after. My wife needs me proclaiming God’s Truth in our home to invite the Lord and be alert of what spiritual thing are coming and going.

I am sharing not to moan about me or to shed light on the demands of a special needs sweetheart but to point to the Savior. He is the Good News amid my weakness! God is working and His strength is upholding me even though I may look “a hot mess”. Jesus is reeling me in and healing Anna.

Please Pray:
-For times of refreshing: "Therefore repent and return, so that your sins may be wiped away, in order that times of refreshing may come from the presence of the Lord”
-For faith in the storms: “You love him even though you have never seen him. Though you do not see him now, you trust him; and you rejoice with a glorious, inexpressible joy.”
-For spiritual refreshing: “And we all, who with unveiled faces contemplate the Lord's glory, are being transformed into his image with ever-increasing glory, which comes from the Lord, who is the Spirit.”
-For the binding of Satan’s accusations and schemes: “But You, LORD, are a shield around me, my glory, and the One who lifts up my head.”
-That we would always have a praise for the things that are going well with Anna.
-To be increasingly other’s centered: “Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves, not looking to your own interests but each of you to the interests of the others.

Bless you ,

Nic Lindsey, Anna, Simon

Tuesday, September 12, 2017

Treasured Up All These Things

Prayer Warriors,

Lindsey convinced me to fill our quiet, plan-free evening with a trip to the park. We were out on the playground as the sun was setting over the Rockies; Simon made a mess of those chow mien noodles we brought to eat at the park’s shelter. We had the place to ourselves for a while; I caught myself grumbling when the after-dinner-rush of kids showed up. They come with those random shouts and exaggerated screams as they go about their play. All of which can startle Anna. By God’s grace, I focused instead on our play, we jumped right in and got busy having fun. Simon was delighting so much he even let out a couple of squeals of laughter brimming over. Lindsey and I took turns rolling Anna around in circles, over the bridges, and down the corridors of the play structures.

There were these two boys maybe 7 years old that stopped to tell Lindsey something as they observed her running around with Anna. Sweet Anna pie couldn’t hide her smiles, drool, and her very unique sounds of laughter. Those boys told Lindsey: “I can tell she’s having fun!” That comment made a good night golden as we treasured it up into our hearts.

Those were kind words, words of perspective to us parents that try so often to please and comfort our daughter. We are often tempted to think either that our efforts are never enough, or that our efforts are too much. But those kids let us know that that night everything was just right.

There are many lessons and guides in the Bible about parenting. One that is most dear to me is a simple detail in Jesus’ birth narrative about a parent’s heart. In Luke 2:18 and similarly again in verse 51, Mary is “Treasuring all these things in her heart and meditating on them.” Contextually in verse 18 Mary was treasuring comments that the Shepherds made when they ran from the hillside after seeing the heavenly hosts of angels announcing the Savior’s birth and how “the glory of the Lord shone”. In verse 51 what Mary was treasuring up in her heart is a bit broader. Like the experience of parenting itself was of great worth to recall and to store in her heart. I read a comment about this verse speculating that Luke may not only have been inspired by the Holy Spirit to write it, but that he may have gotten the chance to talk to Mary and hear her account. So potentially those were Mary’s words to describe her rich joy through her Son. Phew, what gracious and challenging point of view to see your kid from.

So what am I treasuring up in my heart about Anna? It is when people speak life about her, when people offer a godly perspective about her condition, or perhaps a prophetic word, or a benediction. Or in this case its two young boys saying “I can tell she’s having fun.”  This aspect of parenting has become a vital source of joy overriding many hardships.

Please Pray:
-Tomorrow, (Wednesday) Anna has her sleep study. We have never done this before because she used to sleep through the night. Two of her specialists anticipate seeing sleep apnea. Regardless its no surprise to God who we trust in and lean on. We ask God for an accurate test, for good health going into the test, for Lindsey to aid Anna to rest. Anna will sleep in a room hooked up to a bunch of monitors. 

-We had a pre-surgery meeting with the GI surgeon to talk about the Nissin Fundoplication surgery. It reminds us of our stem cells crossroads. The door is open, but is it what God wants for her. We have found a huge reduction in reflux by doing continuous feeds into the intestine. But that means she is hooked up all day. It seems to be a quality of life thing, but the side effects of the surgery still spook. We are waiting, and need guidance and wisdom. 

-We have been looking into ramp vans that can anchor Anna in her wheel chair. They are complicated and more expensive. This is not an immediate need but it could make things so much easier in winter.  We are trying to decide what is the best for our family. It is a huge financial mountain as we still want to keep ourselves from debt. Please pray for creative solutions and a plan.  
-Pray for Anna’s schooling. We have decided to take her out of her school because of her persistent illnesses. We can reenroll anytime. The school will send a teacher once a week to our home. We enrolled Anna in a communication device program through Children’s hospital also to replace some of what she was doing at the school. We are looking for more social stuff too. We are shifting from a vision priority to a speech/communication priority in her learning.

Thankful to God for you! Y’all are MVP’s in the spirit world!

Nic, Lindsey, Anna, and Simon

Thursday, August 17, 2017

The Kingdom of His Beloved Son

Blessings and Greetings in the Lord Jesus Christ, Dear Prayer Warrior,

The content of these prayer emails ought to be God-glorifying and meaty in faith. However, it seems that my emotion can often overwhelm my words and deemphasize the Truth that anchors us in exchange for feelers. So now, I want to honestly display the full spectrum of God’s works in our lives as much as grace can reveal it to me. It will always include emotion but they are not leading they are following behind our faith.

As an unbeliever, I felt so alienated, alone, and misunderstood. Art was the only way to explain my inner content outwardly, but I remained prideful in my aloneness. In truth am never alone and never unloved. Anna’s needs have humbled me time and again to more clearly latch onto God. She has helped me discover just how interventionist and interested God was/is in all our lives. Praise Him that He is. The God of the Bible’s supreme intervening love and interest with us all came in the person of Jesus Christ in life, death, and resurrection, even though many reject Him.

One of my favorite verses of assurance is Colossians 1:13 “He (God) has delivered us from the domain of darkness and transferred us to the kingdom of his beloved Son,” I cling to the verb tense here! We are talking spiritual victory in Jesus no matter to situation. You see, Anna is sick again with a fever, stuffy nose, constant cough, and a thrush infection. We had to break out the suction machine, humidifiers and remember just how hard it is to see Anna go through this and how demanding it is on us. The domain of darkness still tempts me to think that life sucks, that pity parties are justified, and complaining actually gets me somewhere.  Or darker still, that Anna’s needs will tear apart my marriage, that I don’t have what it takes to father Anna, or that she might not see her next birthday. There is legitimate possibility to all of that. But I reject those paths because they are in the domain of darkness. I have faith in Jesus, He is living through me. I no longer live with current problems that give way to future fears. I have a High Priest that I look to for answers. Living in “the kingdom of His beloved Son” makes me focus on Him instead of myself for the answers and provision. I stand solution-focused on Jesus instead of problem-focused on me. It takes faith and grace to see things His way that is why clinging to the promises of the Bible is so helpful.  

God is so good because in the weeks leading up to this current sickness He has brought Lindsey and me in unified hot pursuit of Him. We are having much renewal by simply focusing on Jesus, experiencing the presence of the Holy Spirit, and praying our lives out to Him in utter dependence. Our medical discussions about Anna are more supportive and open to each other. We are always encouraging one another in the faith. Lindsey has been so intentional to talk about what our day has been like abiding in Jesus. We discuss the spiritual strongholds Satan has been using to wedge into our relationship, then we go onward in prayer and in the Scriptures to find the biblical too needed to enter into battle equipped as a soldier of Light. We are finding obedience to be fruitful in things like fasting and prayer together. So this intensity of Anna’s new illness does challenge our sleep and new found gracious harmony.  

God will make a way and show up as we stand our ground and fight for the faith!

Please Pray:
-For Anna’s full recovery from this illness, ASAP. that God will keep her airway clear.
-For patience in enduring because none of this is without a purpose, may we glorify God through this.
-For more reminders in our everyday that we have been taken from the domain of darkness and placed into the kingdom of the beloved Son. May we ponder richly the implications of this as we go about living for Jesus.
-For continued unity in our marriage, household needs, and mutual diligence in seeking the Lord.  
Thank you,

Nic, Lindsey, Anna, and Simon

Sunday, August 6, 2017

The Spiritual Waiting Room for Medical Decisions

What a sustaining! I want to praise God for his grace in activating our CES waiver through Medicaid. This was nothing short of 2 years in the making. I have asked you frequently to pray for this. Many new benefits come from this for Anna and us. $10,000 for a home or van ramp modification, horseback therapy, music, massage, and housecleaning! We have a cleaning crew that helps us once a week. I didn’t know how badly we needed that until after their first visit. What a humbling thing they do. I’m so impressed with Medicaid to recognize the “stress of messes” and include housekeeping in their provision for Anna.

Anna has been tremendous in showing us patience and grace. She is full of effort which is so encouraging to us “keep on keeping on Anna”. She appreciates things so obviously, Anna can’t hide it when we address her one on one. It means so much to her. Two weeks ago she underwent a different kind of intensive therapy which was very encouraging to us as well. It was a trifecta of Speech, OT and PT. There was much to be said about the team they assembled for Anna. She was working on her drumming skills, Weight bearing on all fours, trying out communication devices, and tracking objects with her eyes.

Unfortunately, all summer long Anna has had a hard time sleeping every night. She hasn’t been falling asleep easily.  She wakes up coughing and needs repositioning usually 4 times in one night. She’s coughing right now and it I just don’t know what to do because previously she only acted like this when she was sick. This has led us to inventory what decisions and medications we have done that could be causing this hardship. We have found that the Flovent medication does cause side effects like what Anna is going through. So we are going to try and do without for a while and see.  

God is in control! He opens doors and answers prayers. We are not left alone in these decisions for Anna. But also, just because the medication is prescribed and we prayed about it doesn’t automatically mean that it is the way we should go. (This applies for all treatments that anyone recommends be it eastern, experimental, old wives tale.) What God would have for Anna isn’t as simple as obeying the medicine list. It’s a question of waiting a beat, then counting on guidance from Anna’s Maker. Being in step with God, knowing Anna, and remaining unified as her parents seem to be critical non-doctor factors that help the most. The Spirit has helped us see times in our past where our obedience to God and abiding in the faith was a distant second in our medical decisions for Anna. We acted in haste because we were told to, or because the waiting room was uncomfortable. Lately we have learned to read and collect all info, place our choices before the Lord and wait. 

Please Pray:
-A clear path and the appointed God-ordained time regarding the Nissen surgery, the eye surgery, and tooth pull (all needs to happen under general anesthesia).
-Should we even get the Nissen? This surgery is currently in the waiting room of medical decision right now as we wait for a Word from God. It’s not doctor recommended but it has helped many others.
-For the Lord’s will and grace to be at work for Anna’s betterment, that she can sleep through the night again and we can find the source of struggle; that peace would be covering it all.
-For Anna to be able to communicate yes/no choices using buttons or iPad.
-For Anna’s full healing with perfect vision, intelligent arm and leg movements, etc….
-For secretion management, increased swallowing and throat clearing ability; For no more saliva pooling in her throat while she sleeps.

Many thanks,
Nic, Lindsey, Anna, and Simon

Saturday, June 24, 2017

Hand to the Plow, Looking to Christ

Dear Prayer Team,

Thanks for praying for our visit to the Neurologist regarding the PMG diagnosis. It was a meeting that we were so prepared for that he didn’t tell us much we didn’t already know, he referred us to a Geneticist for further help regarding PMG. The problem Lindsey and I have is looking at Anna’s medical needs in harmony. We differ on what we think the causes are what it will mean for Anna’s caretaking, what interventions to take, etc…

We also had a rough visit to our rehab doctor who is in charge of assessing Anna’s cerebral palsy. She checks the range of motion, flexibility, and tone management, all things muscle, bone, and joint. Our doctor did not like what she saw. The ball in Anna’s hip joints is drifting out of the joint. Anna is in the early stages of hip subluxation. Her previous x-rays of the past 3 years were showing the ball in place, but not this one. It’s always hard news when something we thought was good and healthy becomes problematic. I recall thanking God for the blessing of Anna’s hips because we were praying for another kid who had surgery to deal with hip subluxation. I don’t withdraw my thanks, as I’m writing this I am reminded that the Bible tells me to press onward, I cannot put my hand to the plow and look back, so onward then in perpetual thanksgiving.

By God’s grace, we are one of the few families that have had almost no human error in Anna’s birth, surgeries, and treatments. Many HIE families have malpractice lawsuits and extra bitterness from unforgiveness. God has spared us from all of that. There was one hardship we encountered when Anna’s first rehab doctor prescribed Baclofen when she was a year old. It was a mistake because all the core muscles we were building on in therapy (for head control and reflux mainly) crumbled under the effect of the drug. It’s a strong drug meant for people with persistent high tone, Anna did not meet the criteria according to two PT’s. So we moved to discontinue the drug and got a second rehab Doc (her peer) who said that Anna could use topical intervention not a full body muscle relaxer. We had to bring this prescription error before the Lord and forgive the doctor; Anna was notably disadvantaged from her hasty prescription. That was two years ago, now on this visit our doctor suggested a muscle relaxer because of Anna’s increased tone. So we started Anna on a low dose of a different drug last week. This was heavy too because we want betterment and progress.

The last bit of hard news from the rehab doctor was that Anna is developing a scoliosis in her spine. Spines need to be 10% out of bend for it to be scoliosis, Anna is at 1%. For a healthy person 1% is not much to worry about, but for Anna who has head control issues, who can’t sit unaided nor walk this is not to be ignored. The direction for fighting this is positioning. Anna’s wheel chair is the best. The biggest positioning issues to fix are the car seat and the bed. This means we will be looking for a ramp van with anchors so Anna can stay in her chair while in the car. We also applied through our insurance for a special sleep lounger called a Peapod. Lord willing these will come before her back would get worse.

I don’t want to paint the picture that it is all bitter vinegar to drink. Medically maybe, but we are having one sweet summer. Anna has a gentile spirit and is glad so often. She is feeling better, free from nearly all of her respiratory ills. God has blessed us with many family days with much goodness. We have enjoyed an increase in sleep now that Simon is sleeping through the night and Anna is not sick. There has been enjoyable food, walks, time on the porch. We moved our family devotion times up to right after dinner and we have found that to be a greater time together for reading the Bible and singing than at the end of the day. Thanks for praying.    

Please pray
-for our unity in medical decisions because we count on Him for Anna’s best as well as a wedge-free marriage.
-for all our equipment needs to be met, for a ramp van and the Peapod lounger
-for an improvement of Anna’s hip joints, for relaxed muscles and for a better spine.
-for the activation of the CES waiver that we have been accepted to but Medicaid hasn’t processed yet.
-Lindsey’s mom coming out to be a support to us, pray that she would be able and blessed to care for Simon and Anna. Pray for Lindsey and I to seek the Lord as we spend some time together just the two of us this coming week.  

Nic, Lindsey, Anna, and Simon

Thursday, June 15, 2017

We Call This to Mind

Dearest intercessors for the faith,
Please read and pray through this, I have been short on words about Anna's latest diagnosis, and so Lindsey who grasps medical things better than I took the time to write her heart into this entry. Here are her words:

The past few weeks have been difficult for us. A recent MRI confirmed our Neurologist’s suspicion that there is more wrong in Anna’s brain than what was diagnosed in the NICU.  At birth, Anna suffered HIE (Hypoxic –lack of oxygen, Ischemic – lack of blood flow, Encephalopathy – affecting the brain) along with bleeding and swelling in the brain. These are considered an injury to an otherwise healthy brain.

The new diagnosis is Polymicrogyria (Poly – many, Micro – small, Gyria – folds of the brain). This is a big deal. This is a malformation of the brain tissue, not an injury. It means Anna’s brain wasn’t healthy to begin with, even if it didn’t have HIE. It means that even if we could heal the lack of oxygen, we can’t do anything to fix the structure of her brain. We still don’t know much about it. We don’t know why she has it, why they didn’t find it in the NICU, if it was caused by the HIE, or if it was the cause of the HIE, or what the statistical odds are of having both PMG and HIE independent of each other. We know it means that Anna probably won’t develop many new skills. The scariest thing it means is that she is a risk for developing untreatable seizures and her life expectancy is shorter. This has been tough. We thought we were done learning about everything that was wrong with Anna, and here comes PMG.

Day-to-day life goes on. PMG doesn’t change our therapies, or feeding schedule, or what makes her smile, or when she needs a bath. We just keep on going, loving our little girl. On another level, it rocks our understanding of what we can offer Anna in terms of treatments. When we thought we were dealing only with an injury, we thought we had options. Western medicine would tell us to capitalize on the brain’s ability to create new neuropathways through therapy, to retrain the brain through the body. Eastern medicine would tell us to take supplements that promote cell growth and acupuncture to increase blood flow to the brain. Experimental science would say hyperbaric oxygen chambers can reverse the effects of HIE and stem cells can regrow dead brain cells. And what can we do to fix PMG? The answer is nothing. Western medicine cannot retrain her brain; Eastern medicine cannot promote restoration in her brain; Experimental science cannot regrow her deformed brain.

Our hope in all of these treatments is gone. There is no recovering from PMG and that feels devastating. It feels like all the therapy, specialists, medication, and equipment that are aimed at improvement are pointless. All we can do is try to manage the symptoms of this terrible condition, however imperfectly, and to make her as happy and comfortable as possible for the years she has left.  There is no hope for healing for Anna. Except from one source – Jesus.

We are reminded of the words in Lamentations 3: “He has walled me in so I cannot escape; Yet I call this to mind, and therefore I have hope…” And here is what we call to mind, and this is why we hope: Our Jesus created the universe. He created Anna and her brain and saw her in the womb, fearfully and wonderfully made. He healed a blind man, a bleeding woman, a paralyzed man, and lepers. But those things aren’t worse than PMG. So we call to mind that he healed a man possessed with a legion of demons and a boy foaming at the mouth while seizing. But the only thing worse than PMG is death. So, we remember that he raised Jarius’ daughter from the dead, Lazarus from the dead, and a widow’s only son. And if He has the power to control life itself, Jesus is able to heal Anna’s brain.

Whatever God did then we call to mind because He can do it now. He hasn’t changed and He hasn’t gone away. We don’t pretend to have all God’s plans figured out. God works in mysterious ways. But we know that His power and Presence are still available for us on Earth. We know that He is good and loving towards all His children. We know His name is Healer. We know He hears and answers prayer. We know His character and the testimonies in the Bible, therefore, we know He is willing. We know that He will wipe away every tear. We know He tells us to ask, and to keep on asking. -We call all these things to mind.  

We cannot think anything other than that PMG is a temporary condition. It may be gone tomorrow, or plague her till the day she sees Jesus face-to-face, but what a glorious day that will be – free from pain and struggle and in the presence of Savior and Healer. Our job is to be faithful in prayer and extravagant in worship and let God decide how it is best to answer prayers. Lamentations 3:26 says, “It is good to wait quietly for deliverance from the Lord.” And that’s what we are doing - waiting. Deliverance is coming. We are waiting for the moment when Jesus says, “Anna, get up.” Because her healing is not a matter of IF, but of WHEN and WHERE.

Prayer Requests

-Pray for our meeting with our neurologist Dr. Miller on Monday at 11:30 to talk about all things PMG. Pray that we would come prepared with a list of questions, that he would be given wisdom and utilize the skills he has to best serve Anna.    
-For Anna to get into the Assistive Communication program at Children’s Hospital; there is a waiting list.
-For paperwork to be done correctly so that Anna can start Medicaid services under the CES waiver
-For Anna's full healing at the perfect time
-For financial grace as we look to invest in a ramp van with anchors to keep Anna in her wheel chair.
-Praise for our church families that help us out regularly, this week was particularly notable with a dishwasher install and a fence for our patio.
-Praise God for Anna improving in her throat and while she sleeps. She is wire free, sleeping through the night.

Bless you,

Lindsey, Nic, Anna, and Simon