Pressing into God

 Dear Prayer Warriors, 

The Bible shows God in relationship with His children. A personal relationship means He is knowable, trust is established, and through experiences we bond and grow fidelity. Nicknames and inside jokes naturally surface.

 

God was God to Abraham then one day, because of one trial Abraham called God Jehovah Jireh. Abraham attached the specific characteristic of Provider when God provided a sacrifice (Gn 22). Hagar observed that God is the God Who sees during her trial, she realized His omnipresence in the remote place where the Angel found her (Gn 16). God revealed to Moses the attribute Him being Healer (Ex 15) and Our Banner (Ex 17) amid his struggles to lead Israel. Gideon built an altar to God because God showed that He is Jehovah Shalom (Jdg 6). King David called God Jehovah-Rohi the Lord my Shepherd (Ps 23). The prophet Samuel declared God to be named Our Helper (1 Sm 7). To name a few. 

 

When I read the Bible it’s easy to see God and His many attributes all at once. But these Truths about God were given one at a time or more certainly one trial at a time. The pitfall in knowing God and His many attributes from Sunday school comes in my prayer life. In my struggles, I can look at my situation like the trauma of Anna’s birth and tight-fistedly declare “God you are Jehovah Rapha heal Anna. it will bring You glory.” The Bible makes it clear that He is healer, it's not too difficult, He can do it and He has healed many times immediately, and His Word promises complete healing in Christ eventually. But God hasn’t healed Anna. I need to move on from the "No" or more accurately "Not yet."

 

Looking back on that trial, I remember a specific night shortly after Anna’s birth, Lindsey and I were returning home from the hospital because they did not allow the parents to stay the night if their newborn was in the intensive care unit.  I dropped Lindsey off at our Apartment complex after another long day of learning new diagnoses and constantly laying down what we thought life would look like with a healthy kid. 

It was dark and snowy, Chicago cold if you know what I mean. The only parking spot I could find after circling the neighborhood was three blocks away. I couldn’t have imagined carrying more burdens on the three block walk home alone. So I prayed aloud in my puffy coat with tears turning into freezing water on my face “God you don’t make mistakes, please heal. It’s a small thing for you to do.” Amid the crunchy footsteps and the frozen air, a peace came over me. I stopped bewildered for a second. I quieted myself, looked around and up at the street light. In that darkness burdens felt lifted, and I humbly confessed in sadness, in faith, and in gentleness “I know that if You don’t heal now, You will equip us for this life with Anna and she will bring us into Your Throne room. She will cause us to come to You. I need faith for that.” That night and the years of faithfulness ensuing, I found the Lord to be the God Who Equips.  

 

Equipper, it's what He wanted me to know Him as then and there. I felt a personal relationship with God that cold night.  To my surprise since then, His equipping has made me see Him as the Alpha and Omega, the One who knows the beginning from the end. He knows the time and place for Anna’s healing. I learned to trust Him more as Sovereign and good in every moment as He calls me to live as a servant to my daughter. Her care is consuming at times, but what a gift and a joy my first-born child is including her disabilities! I am aware that God my equipper sounds very much like Jehovah Jireh. That name was already taken though. This amazing relational grace with God is afforded me because of Jesus crucified. I have assured forgiveness from God according to His Word (Rm 5). I have reconciliation with God the Father and a personal relationship as His child; so when I am in trials, He shows one of His attributes to cling to. Instead of me telling Him what Attribute of His He ought to show me.

Praise the Lord for:

-stories of His glory.

-How He welcomes vulnerable conversational prayers. 

-Family pictures, it was hard without Simon but God has given us a beautiful family to reflect His glory. no matter what it looks like. I remember when I lived for myself I thought I would never marry. so praise God.

Please Pray for:

-Restoration. Today a dear brother led me to the last chapter in the book of Job and my heart exclaimed Restoration! May we come to know God as the restorer of our family like Job did.

 -Further courage from the Lord as we return to Hippo (horseback) therapy. My son Simon was learning horsemanship there and loved everything about it while Anna was taking her horseback riding therapy. Pray for Lindsey to be encouraged at God renewing our commitment there.

-the Lord to bless Lindsey as she develops a relationship with a counselor

Nic for the Currats

Honor to Our King

 

Dear Prayer Warrior,

 

Of all the medical fields relevant to us Neurology brings the most honor to God. Talk to any Neurologist and they will tell you how frustrating and confusing the human mind is and that they surrender constantly to the idea that no one knows. For me, that brings great glory to the Creator. Within me it draws out reverence and the fear of the Lord. God holds the scientific boundaries that these very smart doctors keep running into.

 

In our experience, the field has few treatments, or remedies for the problems it identifies. Neurologists remain in research mode classifying and considering variables with each person. In Anna’s brain Neurology has identified: 1 Brain Damage to multiple cortexes and the basal ganglia, 2 Neo-Natal seizures, 3 Periventricular Leukomalacia, 4 Hypsarrhythmia, 5 Polymicrogyria, 6 Electrical Status Elipitcus in Sleep and 7 clinical seizures. None of these conditions have a cure, although with time Hypsarrhythmia is outgrown.   The truth that every Neurologist sees but has yet to confess is that a person with those labels ought to be seizing constantly and/or be 6ft under. Their brain wave readings seem to describe a person plagued with a monstrous brain; I assure you Anna’s appearance is pleasant, beautiful, full of God’s mercy and grace. Why does Anna seem so free and absent of seizures? It’s for the glory of God. She has, and always will bring people to the Lord in one way or another.

 

In our experience, our Neurologists have rough bedside manner. What they know to be black and white, we don’t automatically see as black and white. They introduce terms and explain things that are so accepted by them and foreign to us.  Usually, it’s a team of three that spend time rewording each other’s thoughts until the listener either stops trying to understand, thinks they understand, or the neuro team cannot find any other way of explaining. All questions will be answered. Neurologists are perfectly clear and there usually is lots of silence as I try to understand. They leave before I want them to. That happened today. Which catapulted me back to the longest most difficult conversation in my life which was to understand what it meant for Neurologists to diagnose Simon as Brain Death (not brain dead) and the legal implications that come with it.   

 

In focusing back on Anna, it’s my turn to share what I think they taught me. Her sleep was deep and long, she revealed much more than any of her previous EEG’s. This one showed consistent levels of spike-wave discharges in her awake state and sleep state thus removing the diagnosis of ESES and not qualifying her for the Valium treatment. For about 30 seconds I thought this was great news, then they shared that her brain is now showing excessive neurologic activity, 80+ spike wave discharges per minute during her awake time as well as her sleep times whereas before it was minimal while awake. Their catch phrase they kept on coming back to was “we treat the person not the EEG.” So that means that on paper Anna should not be able to have much cognition, concentration, and even pay attention. But if you know Anna, that girl is with it.

 

The temptation to be anxious about this is so strong. Like trying to figure out what I should do differently because of the heavy new info. Or worse, images of Anna seizing in my head. This is when I wept and called my bride with the news.

Shortly after I took the discharge papers and walked out of the hospital feeling defeated. As I paced quickly to the front doors, the deja-vu moment was felt. I remember heading to those same doors after losing Simon with great speed too. Once outside, things changed. God brought the song “Turn your eyes upon Jesus” to me at that moment, I sang it in a shaky voice. Next came what seemed as a righteous anger towards the godless & hopeless ways doctors talk to me about Anna’s condition and how I wish I would have been less sheepish about offering them the remedy I know of in Christ. I kept on kissing Anna’s head as I loaded her into the van. I said, “Anna, it doesn’t matter what they said. You are a gift to me and am going to take the best care of you I can.” I had a good cry and prayed before I left the parking lot.

 

By God’s grace Anna may never show the things Neurologists expect to see just because they got a peek at her brainwaves.  I realize I have been sharing some frustrations toward them, I don't mean to pit myself against them. I've been hurt. I know they want to help and be on our team. Also, I'm sure that there are God-fearing ones that know the Bible as truth. I appreciate that doctors can make our prayer requests more specific. I know the Maker of the brain and He gives love, mercy, grace, hope, compassion, comfort, and righteousness in the hardest of things to live through.  

 

I want you to know that last night God’s providence for me was a magnificent victory! I sat alone peacefully watching the snow fall from the 6^th floor of the hospital while eating Sushi with full knowledge that in doing so, I am helping the gospel reach the oppressed, poor people of Myanmar granting eternal hope and a solid Rock to stand on.

 

Thank you for going to God and praying for us. We are home. We had terrific chicken and dumplings for dinner and sang some more in worship. It was wonderful being reunited with Lindsey, Victor and Renee.

 

Enjoy the celebration of Jesus’ resurrection, I’m so looking forward to it. There is nothing better to focus on in the world!  

 

Nic

God's Help

 

Dear Prayer Warriors,

 

Thanks for praying and believing God's best for us.  

Medical Update

Things are going OK. Part of the problem with this hospital stay is that neurology is complicated and I wasn’t sure I had enough medical “chops” in my special needs dad brain to hang. By God’s grace and Lindsey’s carefully written list of questions we are underway.  Essentially, we are here because Anna has about 80 “spike-wave discharges” per minute that distract her brain from utilizing the time of sleep most useful for amassing memory and learning. Also, I want to holla at The Epilepsy conference of 2022 that posted their hour-long session on ESES to YouTube.

 

Last night’s EEG served as a baseline evaluation to confirm the ESES diagnosis from a year ago. A key difference maker is that Anna has been on anti-seizure meds since July. Should there be a reduction of spike wave discharges (to the tune of less than 40 per minute), then they may send us home without engaging in the Valium treatment at all!! Unfortunately, last night was a horrible baseline sample because she was up nearly all night. It's so hard sleeping in a strange room, a strange bed, with many probes on your head. Anna moved around so much they had to reset the probes 3 times which takes about 30 minutes each time. Add to that, Anna had a middle of the night vomit because I over fed her.

In spite of all that, the report this morning was still favorable, the doc’s liked what they saw but it was inconclusive because she never got to the deeper sleep cycles. So, we are going to try another baseline EEG tonight with a harder bonding agent for the probes.

 

A New Thing in Light of the Past

On the highway approaching the Aurora Children’s hospital, what came to mind was the last time Anna and I were going there. We rode in the back of an ambulance because she needed hospitalization at the same time as Simon. My thoughts started rapid firing, funneling into the dark memories of arriving at the hospital with Anna and being whisked away from her to have a talk behind closed doors where the Neurological team declared Simon as having the same brain damage as Anna, only he was still suffering brain swelling. As I was driving, I cried out for help knowing that Jesus already carried me through that therefore I wasn’t forced to relive it if I didn’t want to. God quickly reminded me that He is writing a new story, healing came into focus not death and destruction. God reeled in the memory, slowed my feelers, and I prayed to my heavenly Father in tears to have pity on us, mercy on Anna, and grace for a victory.

 

Once at the hospital, God rolled out His welcome mat for Anna by arranging the Build a Bear company to be on site giving away an irresistibly, cuddly stuffed cat. God further welcomed us with no insurance snags, we were expecting some! Then He gave me a calm nurse practitioner that helped clarify all my questions and assured us that she had never seen respiratory complications during the Valium treatment that Anna may undergo. All this while Lindsey was having a great day at the park with Renee and Victor.

 

The Lord knew that I was slowly becoming a shaken-up soda bottle with building pressure. The sights and sounds recalled the death of Simon. Before bubbling over, The Lord provided Chaplain Josh to stop by. He works in the mental illness wing full time. “It just so happened” that the Chaplain over the Epilepsy wing needed yesterday off and Josh who is a Bible believing Christian helped out. It was just what the Dr. of Heaven ordered for me. I debriefed with him a bit about the sentiments and memories. He offered encouragement by repeatedly insisting that God isn’t done writing the story. That Satan strikes destruction and death quickly, but life and healing are written on a longer timeline of incidents to the glory of its Author.  

 

Next came EEG Tech Valentina who overheard Anna’s Scripture Lullaby music and wondered about it. She shared her story of being a single mom and knowing her need for God’s help but not having a clue about how to receive it. A few years back she started going to a church that taught the Bible and invited people to receive God’s free gift of salvation through Jesus. Then the story turned into a praise report about how different her life had become with Christ as her King and hope she now has for the kids she treats at the hospital. I encouraged her onward and prayed for her. I let her know that many of the children she served including Anna would one day thank her in heaven. Praise God.

 

The providence of God’s nearness to me today came through Nang Sang. I first met Nang when I worked at the Super Target in south Denver close to 5 years ago. He was our sushi chef, dreaming of owning his own sushi company. I have a natural curiosity for people who stick out and come from other places so we quickly became work friends. Nang is from Myanmar. Through our work interactions we found out that we both loved Jesus and wanted to see Him glorified. One day, he told me he was leaving to go work at Children's hospital and I moved to the Springs. Well today. I was in the lobby waiting for the cafeteria to open, making the most of Anna’s EEG tech “hot gluing” on those probes. As I looked down at my phone minding my own business, a short little Nang bumps into me with a smile of a troublemaker to get my attention. He is now the owner of Seven Star Sushi; they make all the sushi for Children’s Hospital Aurora. My jaw dropped as I said, “praise the Lord.”

 

We didn’t waste any time with small talk. He wanted to testify. He told me what God has done with his little life. When I knew him, he had 17k in immigration related debt, and little English skills. But now he supports over a dozen indigenous missionaries in Myanmar with the excess his business makes. Wow, I told him he could have kept the money here and lived a comfortable life, but Jesus compelled him to bring hope to his unstable country. That got me excited! I told him about Simon and Anna but also that he made my day.

 

Please Pray for:

-          For Anna to get a deep and prolonged sleep tonight. So that the Doc’s would be clearly informed about the best and wisest recommendation for Anna moving forward.

-          Heaven’s truth to ring and cause wonder in Anna’s and my soul as we have been reading Randy Alcorn’s Heaven for kids book at great lengths here.

-          Hospital discharge tomorrow because the spike-wave discharges have become minimal or even absent in her sleep! To the credit of the Lord’s grace and victory.

-           Lindsey to be strengthened as Renee has had a resurgence of meltdowns daily.

   

Thanks for praying,

 

Nic for the Currat’s