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My Story

In June of 2004 Ryan and I fell in love with the movie “50 First Dates”.

With money tight and 4 kids we rarely went to movies so this was a treat. We agreed that it would be awful if that were to happen to us but we’d still find our happily ever after.

Now we live the Stephen King version of “50 First Dates”. There will be no happily ever after. This is FTD. This is our life.



June of 2004 was a big month. Ryan was promoted to sergeant with the Lee County Sheriff’s Department, we spent a week on Ft. Myers Beach as a family and we found our new favorite film, starring Drew Barrymore and Adam Sandler. Ryan and I are huge Drew and Adam fans. Life was going just as we had planned, finally. Little did we know what awaited us.

I sometimes wonder what we would have done had we known. We always talked about taking a cruise, just the 2 of us. Would we have done that? We always talked about going to Australia. Would we have done that? We always talked about taking the kids on an RV vacation to the Grand Canyon. I wonder if we would have braved it. Some things are givens: we would have planned better. We would have watched money closer. We would have made legal arrangements. But the truth is, by the time we knew what had happened to Ryan it was too late for cruises or trips to the Grand Canyon. It was too late to make legal arrangements the inexpensive way. And Ryan had spent every penny we had, and then some. By the time we knew what was happening, Ryan was already gone.

FTD is short for Frontotemporal Dementia. In the elderly, its numbers pale when compared to Alzheimer’s but in the young and middle aged, it is a near match. From the research we have now we know that for some there is a genetic link. We know of no certain link for Ryan, putting him in the category with 60% of FTD sufferers. It is believed to be caused by a mutant protein, the same mutant protein that causes ALS, better known as Lou Gherig’s Disease. There is no treatment, there is no way to slow or alter the progression and there is no cure. FTD is always fatal, an average of 3.5 years after first onset of symptoms. Ryan began showing symptoms shortly after we saw our favorite “date movie”. I first really noticed the changes in the fall of 2004.

What are these symptoms? Unlike Alzheimer’s, which first robs memory and only later personality, FTD robs first personality and then memory. Clogged by the mutant protein the brain cells in the frontal and temporal lobes slowly die, taking with them everything that made the person who they were, for it is in the frontal lobe that our personalities our housed, our likes and dislikes, our beliefs and opinions. Long before an FTD patient physically breathes their last their personality disappears.

Some of the behaviors are bizarre. For a complete list of symptoms please check out ftd-picks.org. Temperament changes, often causing the patient to become volatile, as it did with Ryan. They become apathetic, even laughing when one of their children is hurt. A once caring father that coached little league and loved to play with the kids at the park, Ryan became an irate recluse that the children feared. I began to fear him too.

Fear drove a lot of our responses to Ryan. Ryan lacked personal insight, common with FTD patients, and therefore refused all medical help until he could no longer refuse. He was diagnosed with a long line of psychiatric issues, none of which had ever shown up on the extensive evaluations given by the sheriff’s department or the US Navy. This misdiagnosis process is common too, because most doctors simply do not understand the disease.

In the process Ryan lost his job, we lost our home, we lost all our money, we lost our cars and nearly everything we owned. The world turned upside down and no longer made sense to anyone.

Finally, in January of 2007, long after Ryan had lost his ability to engage in meaningful conversation or care for himself independently, we received the diagnosis. I had thought that diagnosis day would bring relief and for a brief moment it did- until reality set in. There was nothing that could be done. There was no way to retrieve Ryan from the deep recesses of his mind. I would never again see his smile, not a manufactured one, but his, or hear his laugh. He would never again hold me in his arms or tell one of his boys how proud he was to be their dad. He would never again hold his baby princess high in the air and spin her around. Ryan was gone.

It is too late for Ryan but there are many more as of yet undiagnosed FTD cases that it is not too late for. We need to take action. We need to raise awareness about this devastating illness so that we can get research. We need research so we can find effective medications and eventually a cure.

And so it is for others that I stand to be counted amongst those who demand more for those with FTD. As I said, it is too late for Ryan, but it is not too late for you. Not one more family should be devastated by this disease. Won’t you join me and stand too? Together we can change the world. And who knows? The world we change just might be your own.

Welcome to our journey.


Journal

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Sep 19, 2009 10:43am

The time has come to end this journal.  It’s hard to believe that this portion of my journey has come to an end.  There are still moments that I forget he’s gone.  It will take awhile to settle in, I suppose.  I’ve valiantly fought urges to go to the library and cross out every single paragraph in every single grief book that makes reference to “pre-grieving” or “anticipatory grief.”  So far, all libraries remain safe.

One hard part about Ryan’s death has been that others really seem to believe I’ve already done the majority of my grieving, since we had so long to prepare.  I thought that I had; I was wrong.  I miss him as if he was just here yesterday.

One thing that does make this much easier is the knowledge of where Ryan is right now.  I find myself occasionally looking at the sky and smiling, knowing Ryan is now with God.  I saw an amazing cloud formation today and wondered how God did that.  Then I laughed.  Ryan doesn’t wonder those things anymore.  I wonder if he got to help pick out the colors.

Nate and I had an interesting conversation today.  At the service, Nate chose to speak.  He became very emotional and so I decided to save him.  I now wish I hadn’t taken the microphone from his hands.  He told me what else he wanted to say.  He shared how hard it was to not have a dad to come home to, to never hear your dad say, “I love you, son.”  He said he also wanted to share that his dad was his hero and that now, every time he plays football, he will imagine his hero standing on the sidelines, cheering him on.  We talked about that a bit.  I shared my belief that now, his dad will never again have to miss one of his games.  I told him that now, every time he makes a good play, he can think about his dad, hanging out in heaven, calling all his new friends over to see, and calling out, “That’s my boy!”  And I told him that every time he messes up, I know exactly what his dad will be saying: “That’s okay, son.  I’m still so very proud of you.”  My kids and I have the strangest conversations, don’t we?

But it’s good, and God is good.  As I wrap this journal up, that’s what I want to express most: God is good.  I know, who can read about our journey through FTD and say, “Look how good God is!”  But I say, “who can’t?”  The goodness of God is overwhelming today, as I sit typing this with Ryan’s ring on my thumb.  He has carried us, hasn’t he?  I have to think of Ryan’s favorite Psalm, the one read at his service, most specifically the verses we had printed on the prayer cards.  “Come  and listen, all who fear God; let me tell you what he has done for me.  I cried out to him with my mouth, his praise was ever on my tongue…  God has surely listened and heard my voice in prayer.  Praise be to God, who has not rejected my prayer or withheld his love from me.” Psalm 66: 16-17, 19-20

Ryan has been healed.  He will never be sick again.  God has answered our prayers and showered us with his love.  One day, we will all be healed.

I know that there are those that read this blog that don’t believe this.  I know there are those that probably feel pity for me, that I would need to rely on this “fairy tale.”  I know there are those that believe faith in God is just a crutch for the weak.  I never argue this last point, because it’s true.  Faith is a crutch provided for those who have the wisdom to know that we humans are weak.  I know that not everyone has come to the realization that they are weak.  For you I pray that God would be merciful and show you your weakness, so that in Him you may be made strong.  It is not human strength or fortitude that has carried me through.  I am NOT a strong person.  It is Christ in me, that is the strength you have seen.  It has been his grace, not mine.  I am not a faithful person, I only serve a faithful God.  He pours into us exactly what we need for each step in our journeys.  I just poured out what he poured in.  I am not a hero in this story, nor a tragic victim.  He is the hero.  May His name alone be praised.  He is still worthy.

For those that don’t know, there are a few things I want to be sure to tell you before I close out this journal.

1. God loves you and has a wonderful plan for your life.  I know, the plan he had for mine kind of looks sucky at the moment, but I am convinced that all things will be worked together for good in my life and the lives of my children.  The truth is, control is the most harmful illusion known to man.  We control nothing.  I was sharing with Madelyn the other night my secret to sleeping alone, something I’ve years of practice at.  The secret is understanding that absolutely nothing will happen to me that God does not already know about, that he has not made plans for.  He alone is in control.  This doesn’t guarantee that nothing bad will happen to me; it only guarantees that nothing outside of his plan for me will happen.  In the end, it is all about His plan.  If I could change things, I would.  Since I can’t, I will surrender to this plan and look forward to seeing Ry again one day.  At least I have the promise of eternity!

2. You have screwed up.  Yep, I said you.  None of us are perfect.  None of us can say that we’ve never done anything wrong.  If the goal is perfection and I lied about stealing a cookie when I was 10, then I’m never going to be perfect.  I wish that was the only thing I had ever done wrong!  Truth is, I could build you a laundry list of imperfections.  The better truth is…

3. Jesus paid for all our screw ups on the cross.  When we come to him and surrender our lives to him, “he remembers our sin no more.”  We can keep lists, but he’s not.  Once we’re covered by Jesus’ sacrifice, we’re all good.  That’s not a license to continue screwing up.  Rather we find that when we surrender our lives to him, accept the payment for our sins he made, there is born in us a desire to please him.  We’re not perfect.  We claim progress, not perfection. 

4. God’s gift is free and easy.  Romans 8 tells us, “If you confess with your mouth that Jesus Christ is Lord and believe in your heart that God raised him from the dead, then you will be saved.”  Period.  That’s it.  That’s all there is to it.  If you are sincere, God knows it.  You don’t have to tack on a trip to the holy land, or 5 million dollar donations, or join a monastery.  All you have to do is confess him as your Lord and believe. 

That is the most important message of this journal, the message Ryan would most want you to know.  It is the only message that makes any of this worth it.  It’s all about Jesus.

I expect to miss Ryan for all my days on this earth.  I do not expect to miss him forever.  I can’t wait until I figure out how to get his video montage onto youtube.  (The link to that will be added to this journal update as soon as it happens).  There is a picture on there of Ryan on our wedding day, waiting for me at the altar.  That is how I imagine he’ll look the moment I enter the city.  I suppose as I come down the path to my forever home, he will be standing, waiting.  I imagine that the moment he sees me, his face will break out into his biggest smile.  I will miss him no more.

I know that some think that this journal is an odd place to explain my faith.  I want to assure you that there was no other way to explain this journey, except in matters of faith.  My prayer is that you saw Jesus here, that you were drawn to him, and that God has been glorified. 

So this is it.  For those still interested in following our journey through life, I have started a new blog.  I process life best through writing, you’re welcome to continue the journey with me.  My new blog can be found at http://www.howtofindyourlifefordummies.blogspot.com.  You’ll understand the title once you get there.

Thank you for taking this journey with us.  May God bless you and keep you as you continue your own journey with him.  May his name forever be praised!



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