Journal entry by Debby Larimer

1Corinthians 12:26 “If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.”
I have struggled with limited activities since I last typed. I am looking for answers, possible causes and pleading with God for any solution to propel me to more quality in life. I have not been bouncing back and my pain has intensified. It is greatly impacting the movements I try to make. My heart and head desire to make it through. I do not like the barriers and limitations that stubbornly do not flow me forward, upward and inward , No one likes setbacks. His strength needs to carry me through.
This above verse talks about the body of Christ, the church, but right now it reminds me of the struggle when any of us see a family member go through pain in life. Love hurts, BUT God gives us His strength when ours feels gone. This new year has caught me off guard.  I try to push away the worry, frustration, doubts and fear.  I express my feelings but even they can lead me down unnecessary paths.  I can’t quite bundle them up as nice as I would like so they creep into the silence and stillness of moments like this.
I want to start off with a request for Geoffrey. He had his sleep test due to his struggles with daytime sleepiness and needing more hrs of sleep in an attempt to battle fatigue. It has been hard to see both Geoff and Jenn struggle this past year. He originally started with  breathing testing this past Fall, but did not meet criteria to see a pulmonologist. When he went to his neurologist she helped him with much needed referrals not only for the sleep test but other areas that have been a bit of a challenge to get him these treatments, Fortunately he was very cooperative with his sleep test and it resulted with new information. The sleep specialist shared that due to his Myotonic muscular.dystrophy he is experiencing both central apnea and obstructive apnea. He needs to return for more overnight testing because he will need help at night with a machine to help ventilate his airway. The concerning thing is that CPaP may not do the trick. He may need BiPap or ASV. This may help him rest better. I have needed Bipap for a number of years but this news feels like a blow. Gaining this knowledge about my son hurts. The testing was done near my parents home so Chris took him Thursday night and they were available to bring him home. There has been a hard question that only God knows the roadmap, but when this question was asked, I’m not sure I was ready to has shaken me to the core.  Deep down I have watched the progression in both Geoff and Jenn and have known the possible reality but try to keep hope inside.  I do struggle with fears and worries but it’s hard to harness them in the face of the unknown. This question to his doctor was, Can Geoff anticipate  any improvement in their physical bodies with this disease????? The doctors answer was that it will be a gradual progression overall and will not improve. Addressing this, reminded me that “I don’t know” !!!! I can’t control, I can’t make it better. It’s one day at a time. I want t to treasure these moments and to hang onto the hope as best as I can.
Everything in me wants to be reassured that God has this! The only thing that I know for sure is my anchor has to be fasten to Him. ...But God, But Christ, and But when…When I consider scripture, it’s rich with stories of .....what was lost, but now it’s found. Someone was dead, but is now alive. A person was blind, but now they can see.. This is a day to day process for me to accept whether life goes the way I desire. These phrases are all throughout the Bible. I can’t lose hope, I can’t let my worries carry me. But faith in God and surrendering is relinquishing my plans for His....NOT my power but God’s strength.  My pastor has used this phrase “BUT GOD” for us to echo back with confidence.
This family is A PART of me. My blood does not run through their veins, but through adoption they are a deep part of me, an important, integral part of why I fight. As a mother bear, I love them ferociously. I weep when they weep. I rejoice when they do. I suffer when they suffer. My life has had purpose because a good God gave each of them as a part of this family. There are times when I felt vices trying to rip us apart but we came back together During very hard, trying times when each member may have felt displaced, God has brought a renewed sense of wholeness and yes abundance in life. He has used all different people to assist with this and I take my role seriously. I can’t help but inwardly feel strengthened even in times of great weakness.
Even on the hardest and weakest days, this family is trying, working and succeeding and getting through,  never alone. 
I really have been stubborn about returning to Hershey but God is paving the way, whether I like this trend echoing from my current doctors.  Because it is unknown and the history of treatment. It was good treatment but my history was hard. I want change. I want to graduate, more stability, more barriers in life and society removed. I want to minister, I want to plan, but ultimately as I lay down some of those desires or expectations, I can better move forward with the courage to accept what I CAN do or delight in.  I will not settle but my days are unpredictable and like us all, each day we attempt to battle forward.
Even when I feel shaken, or in too deep, and or I’m examining the struggle I need to be willing to go deeper with God. I expect the best and hope to see more joy in the future for each of my children but my perspective has been changed since they were little. When they were babies and toddler, my dreams were big. I saw them growing fast and conquering. I personally thought I could conquer and impact. I was proud of my positions and roles in life. I now see that my role was not to do these things, but to “let it go” and learn to soar along side them “into the unknown” (quoted because I hear Frozen 1,2 songs around this home). I still may need some more humbling. Who likes humbling? It hurts but it changes. I reflect on the stories of men and women in Gods word who may have been in a comfort zone and all of a sudden, God brought about a humbling change that guided their lives onto a complete new path.
Yesterday I met with my Palliative care dr, She has been part of my journey for almost five years. She relayed even more to me that I need insight from Hershey because right now my left lungs has more collapse (atelectasis) than a year or so ago. This can change but it is concerning because my current doctors are aware that the newest findings, may suggest progression of the neuro_sarcoidosis. These all could be inflammation and I do have systemic involvement. They have concerns that all this pain is possibly coming from my spine or somewhere in my nervous system. These are possibilities that could be unfounded but it will  be explored. There are new spots on my brain as well. I know this type of travel is dreaded. When Jenn was a baby I made this trip often because all her care was at Hershey. It felt like a blip in our routine. But now for me to receive care it involves transportation needs, it involves other people, travel that is hard on my body and strength. I went to an appointment this week and worked with therapy and it was pain that was at intolerable level as I tried to shift, bend or lean.  Ok let me get back on track. I do have a ride to my first Hershey appointment. One step, breathe at a time before I get ahead of myself.
Since the new year, the agency I utilize for home care has not been able to fill some of the attendant shifts. There have also been some hiccups with the brand new system of care management. Therefore gaps in care occur where I end up alone because family members may be a at work or unavailable.  My attitude with this scenario needs help and prayer.   A lot of factors pop up. Pray for the people who enter our home. Pray for patience on all parts and continuity in care. Pray that they will feel rewarded for their time with all clients. It’s hard to balance responsibilities with family members and accepting  some things that are too challenging for my adult children. I Pray that my family members would work better together so we can maintain a healthier environment. I actually miss my Friday cleaning days from what seems like days of old. I miss working, teaching and being out and about. I was finding ways to contribute from my level but right now I can feel awfully useless as pain and more restriction is settling in my body.
 I’m exhausted from trying to communicate or keep up with the responsibilities I need to with owning a home and the five of us living here. My children and I can not do basic repairs so It adds to challenges. I want my home to be a refuge for others. Many people would agree that it’s more comfortable to be helping others than needing help with activities of daily living. Its hard to embrace or accept the limitations and barriers for every day mundane steps or activities. It can be hard to find solution to accommodate . . Pray God works in my heart and that my adult children gain success with caring for daily tasks with greater independence. I try to relinquish my need to control.  
Thank you for taking time to listen to me.  Please don’t hesitate to share how you are enduring these days. I really care.

Thank you Lord, that you alone are my rescue story.  I bring to you my family and friends. You are greater than anything inside of me. I bring you what I can not control. Glory to Glory in your faithful steps. Forgive me for the hang ups and heartaches that lead me away.

Tomorrow is my 53rd birthday and I am glad that God has blessed me this year. I hope to celebrate this upcoming years. 

Right now I appreciate your prayers. I value your insight.
 2 Timothy 1:7
For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.”

Galatians 2:20 “I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself for me.”
James 4:10
“Humble yourselves before the Lord, and he will exalt you.”

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