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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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Posted 2020-03-12T15:40:00Z

Announcements, Update and Anniversary (Oh my!)

I recently loaded up my car with Inheritance of Hope supplies and headed off to Florida once again, but not for a Legacy Retreat.  Instead, we were serving families after the diagnosed parent had passed away at a special C.A.R.E. Retreat, which we now offer to families who were all signed up and ready to go on their trip with their loved one, but that parent was too sick to travel and passed away before they could attend.  C.A.R.E. is an acronym, and stands for Celebrate, Acknowledge, Remember and Embrace.  On the retreats, our focus in on teaching the families tools for healthy grieving and also trying to help them have some fun and enjoy their new normal.  (Sidenote, even though it is so accurate, I despise the phrase “new normal.”)  Anyway, this retreat was incredibly special, and seven families not only enjoyed the magic of Disney and opportunities to process their feelings, but we also got to share with them the hope of Christ.  At the closing ceremony, I had the privilege of telling a bit of my own story and experience.  I’ve included it below for those of you who would like to read on.  (I’m long-winded as usual. 😉)

Before I lose some of you, though…

1) 4th Annual Hope Marathon is coming up March 26th – so many ways to join in!  You can of course walk we me some in Brevard, but you can still participate from far away, without walking, and even ahead of time.  I would love to have pre-recorded prayers to share on the walk and people posting their stories of God’s faithfulness and/or messages of encouragement throughout the day.  Let me know if you want to be involved and/or Click Here for More Info

2) Spring Picnic at Sycamore Flats in Pisgah National Forest, NC – if you can make it for lunch, fellowship and an Easter Egg Hunt on March 29th, please join us! Click Here for the Potluck Sign Up

 

Closing Story:

“My name is Heather. I'm the Office and Supply Manager for Inheritance of Hope, but my first connection with IoH was much more personal than a job search. My late husband John was diagnosed with ALS in February of 2014. One of our coworkers had been friends with Kristen and Deric Milligan and quickly told us about this thing called a legacy retreat. We experienced ours with our two boys 6 months later. It was such a special gift in so many ways, but most importantly, we made incredible memories and friends, and God used the community to really teach us that He gives good gifts.  He is the One worthy of our faith and hope, and that He had purpose for our pain and plans to work in, for and through us in big ways during John's illness. And that is exactly what He did. When John died on March 26th, 2016, I of course, became a young, widowed, single mom, facing the challenges of raising unique grieving boys, but I had peace and hope because God had been so faithful in the most difficult times. I started running for and volunteering with Inheritance of Hope later that year, and the team quickly realized they weren't going to get rid of me.  😊 At my 4th retreat volunteering the following year, I met Tom Dodd, another volunteer who had come on a retreat with his two boys and late spouse. Everything changed. After a lot of hard work, counseling and serious prayer, we got married, and my two boys and I moved from NC to SC (more different than you know!) to start this new life. Brady Bunch happy family, right?! Not so much. (That is so not real!)  Tom is wonderful, and we definitely have good moments and are seeing more and more glimpses of unity and "blending," but we have found that combining two complicated families doesn't make one simple family. Go figure. So why is it so hard? There are multiple factors at play for sure, but the biggest challenge for me since John died is understanding how to hold on and move forward at the same time and even more difficult is figuring out how to help my kids do the same ....to be able to Celebrate, Acknowledge, Remember and Embrace.  I have not figured it out, but I’ve learned a few things I wanted to share.

Initial thoughts of what CARE means to me:

  • Celebrate
    • John and his legacy
    • the family we used to be
    • the family and friends who supported us
    • the laughs we had together
    • the gift of his love and his sacrifice for our family
    • the ways God showed off in the midst of the unknown
    • the purpose in the pain and the peace in the outcome because of the hope we have in Jesus
  • Acknowledge
    • the loss
    • the change in our family
    • the need to make decisions for us on my own and deal with being judged for them alone
    • every relationship would change (3rd wheel anyone?)
    • my love for John would inevitably be questioned because others couldn't understand
    • things would never go back to the way they were
    • my faith couldn't keep me from hurting
    • I couldn't be everything my kids needed, and I didn't really know how to help them grieve
    • they needed me to be intentional in helping them process their loss and finding resources
    • I couldn't fix their hurt
    • I couldn't expect others to take John's place but yet I needed some to help
    • my story outside of the one I shared with John
    • even still God gives good gifts
  • Remember -Not just John. How could I ever forget John?! That's part of celebrate for sure. What I had to learn to remember was:
    • God's faithfulness
    • His purpose
    • His power
    • His love for me
    • How He has provided in the past
    • How He alone can bring beauty from ashes
    • He isn't done with me and the boys yet
  • Embrace
    • the future and all of the NEW
    • the CHANGE and seek out the good when it's hard to find
    • the support of others
    • how God plans to work in our new life
    • the hope we have in Christ daily and seek to follow Him instead of dwelling in the loss
    • the power of the Holy Spirit and let Him work through us
    • Embracing has always been the hardest for me.  The thought of it has made me the most tired, overwhelmed, and even bitter.

A year later, embracing is still hard, but what I'm learning now is that if I'm not celebrating right, all the other tasks are much more difficult. Celebrating John and the life we had (and even the tendency to "worship" that), rather than celebrating them as a gift is a trap. One way makes us stuck comparing, which causes discouragement, despair, and resentment. The other helps us acknowledge the change and God's sovereignty, remember all that He has done for us and embrace what He is doing because the focus is on Him. I can't help but compare, even though I know better. I know the importance of fixing my eyes on Christ, and I try so hard, but in my desperate attempts to preserve John's legacy for myself and my kids, I think I too often focus my attention on the gift, rather than the giver, yet God is the one who does not change like shifting shadows, who will never leave or forsake me, who makes my paths straight, is unlimited in power and knowledge and full of mercy and compassion. God is the one I need now, not John.  The gift was good, but the best thing about my gift was how it showed me the love of the Giver. So now the challenge is being intentional in my thoughts. To take them captive, to not be deceived by the philosophies of this world, but to choose to remember the Giver when I long for the gift.

A few weeks ago, I had the chance to try this out in a real way. John's birthday weekend:  Saturday we drove to Dupont State Forest and hiked out to the place where we scattered his ashes.  For the first time, we struggled to find the right set of trees because the land has changed so much, which was disappointing, but also a great reminder that everything changes...except for the One who created it all, of course.  We each told some stories about John and things that were special about him.  Then I followed up with acknowledging how much life has changed, but also reminding us all out loud that God never does, and He is the One who gives good gifts like John, which means He is still giving to us in this new life we have (even if the gifts don't seem good in the moment, like ALS).  I also pointed out that He has so much more in store, too.  They nodded.  Then Sunday, the three of us had a chance to watch the slideshow movie I made for 2014, full of videos and pictures of our life with John (including our Legacy Retreat).  After that, Jason wanted to go right into 2015, but I told him I wanted to watch 2018 instead because I wanted to be sure we remember... and he finished my sentence with "that God still gives good gifts?"  (Sweet!)  I confirmed the reasoning, and we watched.  With smiles and laughter, we watched.  What a great way to see the good instead of dwelling in feeling the hard!  We had fun commenting on good experiences we wouldn't have had before and the positive things about these new relationships.  We celebrated and remembered a sweet life with John, but instead of ending the night with a feeling of loss, we walked away grateful for some of the new. We walked away with hope. 

God gave me a wonderful life with John, but more than that, He gave me Jesus, His perfect Son, who died on the cross for my sins, so that regardless of my circumstances, I would be able to experience the gifts of peace, comfort, companionship, rest, strength, power, purpose, hope...etc. that are benefits of walking with God.  Because He has done this and so much more, I can say with confidence that He is faithful and is still going to do more than I could ever ask or imagine.  When this new life overwhelms me, and I am tempted to get caught in the comparison trap, God rescues me by reminding me that He was the one to give me that life with John, and He isn't done yet.  That is what gives me hope to embrace the new...holding on and moving forward one day at a time.”

 

Back to today, March 12th, 2020… 11 years ago, John and I secretly drove off with Erik to Virginia and got married.  This anniversary, though, I want to be intentionally grateful for the gift of marriage to John but worship only the Giver by recognizing His continued presence and gifts in this “new normal.”    My wonderful husband:

  • Rubs my feet
  • Brings me my medicine each morning
  • Takes care of things at home when it works out for me to serve at retreats without him
  • Helps me with groceries and cooking
  • Goes with me to appointments and meetings
  • Prays with me
  • Takes the lead with Jakob and Tae in hard things
  • Helps Erik with math and science
  • Helps Jason with Scouts and Kuk Sool Won (Korean Martial Arts)
  • Stands up for me (which is huge because he’s a pleaser)
  • Walks marathons with me
  • Makes family time a priority
  • Supports big changes if needed to support our family
  • Does evening kid pick ups and drop offs as much as possible, so I can work and run
  • Goes to counseling with me
  • Is growing in emotional intelligence!
  • Apologizes (usually before I do)
  • Drove the whole way home at once from New York when I needed him
  • Supports using a good bit of our house for my office and IoH supplies
  • Texts me during the day to tell me he loves me and is grateful for me
  • Stays awake later than normal to spend time with me
  • Makes me laugh
  • Hugs me when I cry
  • Pursues resolution when we fight
  • Helps my friends, even if I’m not around
  • Tries to remember to clean up after himself
  • Stays close to me at gatherings where I’m likely to feel different and alone
  • Listens to me as I over-analyze every concern 

These are just some of the ways God cares for me through Tom.  In his unique way, he also shows me the love of God as he sacrifices for me and our family.  It doesn't make John's way of loving me any less special or important, but it does remind me these are all gifts and that God is still giving.  Of course, the best gift is Jesus.  Unlike even our best earthly gifts, He will never change, disappoint us or leave us, and He will guide and comfort us as we navigate the loss and the new normals.  If you haven’t received Him yet, I hope today will be the day you do.

 

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. – James 1:17

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