Upping the Quality

 

Dear Prayer Warriors,

 

I hope this letter finds you faithful in the mission God has for you, filled with thanksgiving and worship to Him who atoned for us. Sometimes life’s needs and hurry can get in the way of taking the time to write to you, particularly when things are blessed and good.  This has been our season of late, praise the Lord. When I write these things I am aiming high in faith and there are days I feel far removed from the spiritual aspirations I convey in these emails. It is the Lord who graciously challenges me to onward to stay the course even if it's not as pretty as my words. I am at Simon’s camp enjoying unseasonably nice weather and the peacefulness that comes from slowing down, enjoying the view, and resting. For me, I have found that the lack of trials is often when inner holiness is compromised. It seems easier to walk in the flesh and desire the treasures on earth when things are good. A message reminded me that I ought to pray for a challenge, maybe to create a goal to reach, a gospel to share, or hard things to do with excellence. I’m not asking for more trials to refine me but for holiness, mission, and righteousness to compel me in personal growth. “Lord help me walk in the Spirit.” The command to love and to consider the interest of others as more important than my own are the first things I can pursue when things are good. As I evaluate my life it is really through my kids and wife that I do 90% of my other-centeredness. What usually happens is that I seem concerned for the interest of others so long as they are in my inner circle. Can I challenge myself to compassion beyond those who love me, maybe turn up the lovin’ at work? Even so, it is God’s call for me to take care of the needs of my family ahead of the outer circle. As I think and write about this, I am convicted about my prayer life. I feel I am pouring into the needs of others when I pray for them! I may not have time for others but I can plead to the Lord for them. Sorry if this seems like faith 101 here, especially because you guys have developed the pattern of praying and reading over these emails, praise God for your example to me.

 

Christmas and New Years were hard from a mourning perspective. This year it was as if I underthought my son in heaven and developed a guilt from it. What is the right amount of observance of grief for the fourth Christmas without Simon? It’s unnatural to acknowledge his absence and move on; it’s also wrong to ignore it all together. The non-talking about him came to head on Christmas day when my sister-in-law gifted us a letter she wrote to Simon. It was full of love, wonder and grief. I read it aloud among the trenches of torn wrapping paper and new gifts in hand. During that moment I desired the gift of holding Simon again and listening to him. O how my heart feels frozen in time holding him and prizing how Simon used to make me think and feel. Praise God for a pillar of faith that allows me a selah, for Jesus who grants me a reunion and a future with him knowing that God continues to make it well (enough) with my soul. One thing I have done very little of in my journey of mourning is to talk to Simon like he is right there in front of me. Largely because I have a faith that knows he is not here, and his disposition is glorious as I grieve. However, it was the letter from my sister-in-law on Christmas day that helped me see the beauty in writing a letter to Simon as if he is going to read it, to talk to him for a second as if he was still here. It showed me of the intimacy that relationships carry when love is in the middle. By God’s grace I know I am far better off to have loved and lost, then to not have had this son to love at all. Yet, I have learned to be the most satisfied, most honored when I hear of the good things coming from his absence and our grief journey. God is good, so I look for the good in the giving and the taking away, blessed be the Name of the Lord.

 

One last note on the evidence of sorrow in my family is Renee’s teeth. What has become apparent is that the depth of sadness and loss she has felt from Simon’s absence gets miss-applied to not wanting to obey or go to bed, or not wanting to go to school. She will make an emotion appeal way past a proper response akin to the depths she experienced when her brother died. So, in the moments when Renee’s insisting on mom to tuck her into bed it becomes as big of a sadness as losing her brother in the moment. I know she clings to her blankie still; I know she loves every recollection we have of Simon and I pray God will meet her in her times of inner thinking, to heal her use of emotions, anxiousness and hesitation. The other day, Renee asked me to wiggle her front baby tooth to see if it is loose and the tooth has become so small from grinding as a subconscious soothing to her that I couldn’t grasp it. It’s the size of half an Advil. I’m no dentist but I did have two kids before Renee with baby teeth and those teeth haven’t endured the grinding crucible as much as Renee’s. Let’s keep Renee covered in prayer because she continues with emotional struggles about other things because of her experience in trauma and loss.

 

One of the last prayer requests I asked for regarded Anna’s Medicaid evaluation because of the changes to Medicaid from the top down. many other families have dealt with reduced hours etc... Much to my surprise have been blessed with more approved caretaking hours for Anna. This will be a blessing to us, to her therapists, respite and nurse providers. Out of this spawned a sort of realization that my bride helped me see. Anna is so complex, challenging, and increasingly unable; yet I treat her every circumstance with blunt confidence or downplay how hard and heavy caring for her can be. It’s like I've grown insensitivity because I have accepted her “as is” for so long. Lindsey continues to serve Anna so well and I do my best when I am home for sure. However, Lindsey models the longsuffering that comes with 12 years of caring, praying and longing for the miraculous. Lindsey is the one callused from all the appointment setting, diaper changing and mess cleaning far more than me. This increase in hours has opened my eyes to see that I need to do more for Anna, obviously her needs are increasing, and I need to give Lindsey more support and space for other things. Please pray for God to show us to what extent I need to step up. It's time I stop assuming “we got this” and start pleading “Lord equip us and help us as Anna’s disability continues and the needs don’t stop coming.” Praise God for the perpetual willingness shown by a mother to sacrifice for her daughter. I am humbled by what I witness everyday if I just take a step back.  Please pray for a nurse to take our case three days a week to lessen Lindsey’s load and/or for me to step into those spaces.

 

Another point of bragging on Lindsey I would like to make is her scrutinizing our doctors particularly in their prescribing. Rather than a gullible trust that I so often have towards doctors, Lindsey always searches the "why" and "how" of everything. To showcase this, allow me to show you a recent “flip-flop” Anna’s neurologist has made. For the last 6 months, we have been going with a new neurologist who wanted to revisit the previous neurologist’s dismissal of the ESES diagnosis and treatment three years ago. Anna continues to have about 80 seizure-triggering “sparks” in her brain every minute while she sleeps. Without a 3 day stay at the hospital, our new neurologist started treating Anna with a high dose of Valium nightly for this first month. On February 2^nd we will assess its effectiveness and choose to continue or stop it. There have been great gains in cognition from past participants even though the results vary greatly. From my impression Anna seems to sleep more deeply. Pray for Jesus to use this treatment to bring healing to Anna’s neurological injuries. In other Anna news,  she hasn’t had any Urinary Tract Infections this winter. She is doing great and continues to be such a joy to be around. We need prayer for our ramp van to get fixed; the ramp has a broken wheel making it risky to use. The repair place seems more interested in selling ramp vans than fixing old ones. Pray for progress with this. We’re pausing horseback therapy for a season to do in-home physical therapy for Anna. Also, Anna’s last Cerebral Palsy evaluation from the CP clinic showed good things, no further development of scoliosis. We still blend for her and supplement her formula, praise God she is at about 80 pounds now. Oh, and praise God we received all the medical equipment we were asking for including a tricycle for Anna!

 

Thank you for praying and happy New Year!

Nic for the Currats