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Learning to Thrive after ALS

John was diagnosed with ALS in January of 2014. Throughout his disease, we were overwhelmed by God's provision of love, encouragement and physical resources, which He so[...] read more

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NYC Legacy Retreat - Purpose Revealed

Tuesday marked the end of my 10th Legacy Retreat, the first I enjoyed as a participant, and the other nine brought joy through volunteering.  On the last day, volunteers and staff share some of their experiences on the retreat with each other, this time, through summarizing through one word and a few sentences to explain it.  I wasn’t able to be a part of debrief this year (and truth be told, a few sentences is not enough for this one), but I do have a word to share, so I thought I would do it here. 


In January of 2014, John was diagnosed with ALS, and eight months later, we were given a Legacy Retreat.  I didn’t want to go.  We were already firm in our faith and had hope in Christ, and I was overwhelmed by John’s untreatable illness and was dreading the risk of being weighed down even more by the burdens of others.  What we received was the exact opposite, though.  God showed us the hurt and despair of facing a terminal illness without Him and putting hope in doctors and medicine, rather than Jesus.  From our seat of struggle, we could encourage others in a way that many couldn’t because it was obviously genuine and not based on our circumstances.   There was purpose in our pain, and that was only the beginning.   When we came home, we had a new perspective and countless opportunities as faith was not only something we believed, but something we lived out in front of others. 

After John died in 2016, I quickly learned that being a young widowed mom was lonely and challenging, but I wasn’t actually alone.  God was still with me to comfort and teach, equipping me for what was to come next.   I now realize this was really a break, a chance to invest in my relationship with Christ and my boys….and a chance to serve others.  Seasons changed again, though.  As Tom and I approach our 1-year anniversary, I look back at the year and see our four amazing, but challenging boys and a wonderful man who cares deeply for us all and is working so hard, but I also see a lot of hurt.  Tom, Jakob and Tae are adjusting to new expectations while still struggling with their own losses while Erik, Jason and I, complete with our own losses, left everything we loved and knew to move into a situation that quite honestly is laced with negativity, fear and resistance.  As a result, anxiety, bitterness and pain overwhelmed the three of us, and I began to realize that their grieving process required more intentionality on my part.  I was desperate for support, from grief camps and local counselors, to literature and memory objects, to implementing memorial traditions and healthy grieving habits.  They are coping better and although it seems like we take 10 steps back for every step forward, that isn’t really true.  God continues to provide for us, including the strength, wisdom and grace Tom and I need for each other as we work through all of the challenges of blended parenting.  Please don't get me wrong.  I am grateful for all I have, especially for Tom, our boys and our new life.  I have so much more than I could ever ask or imagine. I have no doubt we are exactly where we are supposed to be, and I trust completely that God is going to bring unity to this broken family, but we aren’t there yet.  There is still so much to be done, and it is just so draining. 

Monday morning Tom and I were faced with this reality yet again as we addressed issues with boys from afar, and just the word “family” flooded my heart with discouragement.  I was surrounded by people who care, though, and when I was given the chance to just take a break, God reminded me to turn to His Word.  I found myself in Romans 15, and though I have studied verse 13 intently and know the God of Hope, this time I was directed to verses 5 and 6, which says, “May the God of who gives endurance and encouragement give you the same spirit of unity among yourselves as you follow Christ Jesus, so that with one heart and mouth you may glorify the God and Father of our Lord Jesus Christ.”  This is my definition of family and what I had that I miss so much.  I am constantly in need of endurance and encouragement.  Thankfully, God is faithful!  The family I was assigned to on this retreat is an ALS family I referred - a beautiful, sweet, special family.  Their humility, gratitude, strength, love and compassion touched so many of the other families and volunteers, and they were just so grateful to be a part of it.  I thought to myself, “if John didn’t have ALS, I wouldn’t have known about IoH to tell them.  God, that’s so cool that you are still working through that struggle.  It would be really nice if you would do that again and show me all of this we’re going through now matters.”  In that moment, God humbled me, because I realized I was missing it.  You see, I met this ALS family at one of those support camps for Erik and Jason, a place we would not have been if it weren’t for our hardship this year.  So yes, living with ALS was a big piece that was required in this plan, but it wasn’t the only season of trial God used.  What’s more, we found out about that camp through another IoH ALS family. 

God is into details, and His plans are full of purpose.  He does work for the good of those who love Him and are called according to that purpose, and He can bring beauty and meaning from any pile of ashes.  My experiences have allowed me to encourage a lot of hurting people, and though my new family does not glorify God with one heart and mouth now, I believe He brought it the first time and will do it again in His timing, and He will continue to give me encouragement and endurance until then.  How awesome is that?!

As we approach giving Tuesday, please consider giving to IoH.  You will no doubt be giving with purpose.  Click on this link if you’re interested. 

And don't miss this Great song; great reminder!

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