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.