Full Disclosure

When Rolf and I dropped Max off at Point Loma last month, we were happy to be a part of the two-day new student orientation festivities but, I admit, it was hard to embrace all the parent seminars and “meet ‘n greets” as we were still pretty raw in the wake of Rudy’s passing.  Ironically, we weren’t  that emotional about dropping our big boy off at college…we were just so excited for Max.  He was so ready to be there and he jumped into the college scene enthusiastically with both feet.  It was really fun to watch.   So, it made for some awkward interactions with folks when waves of grief hit us at the most random times…like over a plate of pulled pork!  We got sympathetic looks from other parents and Rolf and I just wanted to jump onto the table and yell “we’re not crying because we’re dropping off our son at college!!  There’s a bigger story here!!”.   It was weird.  We had this strong compulsion to fill in the blanks because we felt a little disingenuous as well as misunderstood.  We had this need for complete strangers to know the whole truth.

We find ourselves in a similar situation this month.  Life is getting more complicated for our family and as we sit dumbfounded and in shock, we feel the need to say “Our grief is not just about Rudy.  There’s a bigger story here!”.

I was diagnosed with ALS a week ago today.  I have been feeling “off” for several months but it wasn’t until Rudy passed away that my symptoms came into focus.  Without the added stability of pushing Rudy’s wheelchair, I noticed a more pronounced limp in my left leg.  And because I no longer needed to use elevators and ramps, I attempted to climb stairs and found I couldn’t do so without pulling myself up with the hand rail.  There is no pain, just weakness in my limbs and subtle changes in my speech.  I saw the neurologist (who was Rudy’s neurologist too!) a week after Rudy’s funeral and submitted to a series of tests that culminated in a MRI a week ago last Thursday that did not show a pinched nerve or obstruction of any kind.  Dr. C is 95% sure it’s ALS but, of course, is recommending we seek a second opinion and we are doing so at UCLA pending insurance approval.

Rolf and I have decided to share our situation publicly before confirmation of the diagnosis for two reasons.  First, my symptoms are becoming more pronounced and people are beginning to ask what’s wrong.  Second, we would rather have our friends and family praying from the get go.  We are starting this next phase of our journey already worn down and fragile, the weight is crushing and if we’re going to do this “well”, we need our community.  How that will look, I’m not sure yet but if Rudy taught us anything, it was to live life one day at a time and we will figure this out as it unfolds.     What we are asking from our loved ones at this point is for prayer…prayer for mercy, prayer for wisdom, prayer for healing (emotional/physical), you name it, we need it.  Once we have our second opinion, we hope to have a better sense of where we are and what our practical needs will be.

My greatest concern right now is for Rolf and the kids.  Rolf and I told the kids on Monday.  The MOHD squad headed south on Tuesday, picked up Wilson in LA and joined Max in San Diego for the day.  It was a hard day but it was good to be together.  We had a candid conversation that ended with Max initiating prayer and I walked away so grateful for my family’s strength of spirit and faith.  That being said, we are all being forced to carry an intense burden ON TOP of our grief and I want to insulate my family from it all with every fiber of my being…but I can’t.  Once again, we find ourselves in a hard space to comprehend that is totally out of our control…and we miss our little boy.

Dr. C encouraged us to go home and “go about our business”.  I intend to do just that.  I have decided to not do any research on the disease or on local resources or do any specific planning for the future until the 2nd opinion.  I feel strongly that I am to take this time to focus on heart and family.  Rolf, Olivia and I will begin specific counseling later this week.  I have already begun taking the one drug that is available to me right now.  I appreciate the loving advise from family and friends who have personal or professional experience with this disease but ask that you hold off sharing it with us until after the 2nd opinion.  I’m feeling the need to pace myself and not jump into an ocean of confusing information until it’s confirmed this is the path we’re on.  For now what we need more than anything is your prayer and emotional support.

(No real comfortable segue into these pictures but I love my family’s ability to embrace moments of joy in the midst of hard life stuff…)

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When in San Diego, go to Belmont Park!…
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…and ride my favorite roller coaster…the Giant Dipper!!
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I love this family!

We will update as soon as we have new information.  Thank you dear ones!

Waiting in hope, Trish

P.S.  I have a Bible app on my phone that gives me a random verse a day…I was struck by the appropriateness of last week’s line-up.  Given the fact I can barely focus on anything, let alone reading, I appreciate God meeting me where I’m at…

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33 thoughts on “Full Disclosure

  1. Trish, my heart is breaking at this news! My prayer team just arrive at my church and we will be praying for you, your health, Healing, your family, continued strength, wisdom, discernment, comfort, rest and that the Holy Spirit will be your constant companion at your side leading and guiding. The scriptures certainly do bring peace. I love you! Thank you for sharing this. There is strength in numbers – “a joy shared is doubled and a sorrow shared is halved”. Also, please know that i hold each of your precious family members close to may heart!!!! Blessings and Peace!

  2. Sweet Trish and All.
    Yes, one foot in front of the other. Love you and pray for you and, yes, see you in a few days.
    Believe in his unfailing love, even if its hard to see at times.

  3. Geylings we are there for you whatever you need, prayer or any help of any kind. Love you guys and Trish I have been reading your Rudy’s Beat for a couple of years now. You are such a talented writer. Thanks for being so honest in everything you write. We are all pulling for you.

  4. Oh Trish. In my mind all I can see is your beautiful blue eyes and smile even in the midst of intense grief and uncertainty. You are the Lord’s my dear sister, and He loves you deeply and incredibly. Jerry and I are praying and wish we could come wrap our arms around every single one of you precious Geylings. Love you so…

  5. My heart is saddened at this news. You have been, and always will be, in my prayers my dear friend.

    “Lord, you accepted the perfect sacrifice of your Son upon the cross. Hear us during times of trouble and protect us by the power of his name, that we who share his struggle on earth may merit a share in his victory.”

  6. No words to describe my heart that grieves with you in so many ways. I am choosing to trust Him with His sustaining power, grace, compassion and love for you. It would be so easy to turn away and ask….what are YOU thinking! But I am reminded that His ways are not our ways and as I weep for you, there is an undergirding presence that drags me back on my knees (literally) to bring myself and your family in front of His throne for mercy. I am perplexed and dismayed by this news but come along side of you and pray, thru the Holy Spirit that knows exactly how to pray for you. And I promise I will do this with love and focus.

  7. Praying with and for your whole family. May God meet you in grief and uncertainty, and somehow join your suffering with his own. This is part of one of my daily prayers in this season: “I choose the awful agony of Christ, to charge my senseless sorrows with meaning, and to make my pain pregnant with power.” We Jensens love you guys.

  8. More prayers for you dearest Trish and to the whole family during this difficult times. God is with you. Please let me know if I can be of any help. Love you guys!

  9. Dearest Trish,
    Thank you for sharing and allowing us to come alongside you and your family in prayer. In the uncertainty of what lies ahead please know that I am here for you praying, pleading and seeking God’s live, grace, mercy and most of all His healing touch upon your life. Know that you will be in my prayers daily and that I will intercede on your behalf. May you find comfort in knowing that there are many of us that count it a privilege and a joy to be able to lift you and your family up in prayer. 💕

  10. Hi Trish,
    Praying for healing, peace, wisdom, guidance, rest, and repeat! Love to you. I’m so thankful for your candid honesty and vulnerability. Sending love to you and all the Geylings!

  11. Holding you and your family in prayer and in heart! Sending hugs and crying with you and for you. May the body of Christ hold and carry your family. You are loved and held. May our God carry you and hold you every moment of everyday.

  12. Oh dear Trish… my heart has been so full for you all. I continue to pray for you all following the loss of your sweet Rudy, and will of course be praying for you as you head into the great unknown of the future… possibly with ALS. We know “God has this”… more importantly, we know God has YOU. You are spot on to live in the moment, and to invite us to support you. What a privilege to pray with and for you, dear one. Much love and hugs to you and your precious family!! xo

  13. Sweet Trish- I am so very sorry to read this and we all will be praying hard for you. We love you and your family so much and hate that we live so far away. Please hang in there and know that you are so loved.
    Daniel Tatum Riley Cam and Mason

  14. There are no words Trish. I was just in SB and I wish I would have stopped to hold you tight. I am so grateful that you love the Father and can turn to him. It doesn’t make it any easier but the prayer that go up on your families behalf will make a difference. Rolf you are the right man for the job you love well and our loved by many. Feel his arms holding you. In his powerful name I will pray.
    Lynn

  15. I have shed many tears due to family tragedy in the past 15 months. I started reading some of your blogs after we met, sort of book ending them starting with the newest, then back to some of your earliest entries. It is a strange human condition to somehow feel better after having a good cry. And when it happens in response to another’s suffering, you hope it helped that person too. I hope that you and your family feel the deep and broad love and support brought about by your willingness to share. We all hope that be sharing the grief, it will lessen the burden for you. I know that we have felt the power of the love of community when dealing with our own family tragedy. We had also received rather dire prognosis from some of the very same doctors and specialists you are working with. Meaning no disrespect to these amazing and talented professionals, they are often wrong. And even if the diagnosis is correct, the effects on an individual can vary wildly. Even in our life altering situation, we have been blessed. A commitment to faith and positivity has sustained and elevated us. It did not come easily and it continues to be a sometimes massive effort, made somehow manageable by the prayers, love, and support of many. Our son and family have been on the lips and breath of people we have never met and will most likely never know. We were told that our son’s future existence would be in a persistant vegetative state. We refused to accept that, truly more of a defensive reaction to the devastating news than a true representation of faith, but then we were joined by countless family members, friends, acquaintances, and even strangers in a concerted rejection of this sentence. We are so fortunate to have our son back. Perhaps not completely whole as he was, but his essence, personality, memories, and most importantly positive outlook have returned. His rather severe physical limitations continue to improve and he has set high goals for himself in this regard. I hope that our continued struggle and successes can serve as a small inspiration as you move forward in your own miraculous life. Your family has blessed us more than you know and you have been and will continue to be in our hearts and prayers.

  16. Oh, beautiful Trish. The feelings I am having tell me how much I love, love, love, love you. I would like to give you a long hug right now. I have been reading the scriptures you picked out over and over again. They are just right. I have been non-stop praying for you to keep the good spirit and for love to wrap around and envelop you.

  17. Trish, Lisa just contacted me. I’m devastated. Can’t process this right now…I can’t imagine that any of you can. The Bible says that our Lord won’t give us more than we can handle, and for the first time in my life, I’m questioning it. But I do know He is in charge and He loves you more than ALL the rest of us put together are capable.

    We are praying for all of you, and want your insurance co to be cooperative NOW. Please let us know what, specifically, we can pray for, Trish. And know that our love, prayers, hopes and compassion surround all of you every second of every day.

    BIG love,

    Deni

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