January 26, 2015

Start of Ride on East State Street Athens.

The word has been put out and the preparation is done. Today I ride to raise money for the Birth Circle pregnancy loss resource fund. It is 25 degrees, with snow on the ground;  not exactly what I had in mind when I planned this event but not surprising for January in the midwest. I had planned to ride on the main roads but they are too slippery for cars or bikes so I will make my trip on the Hockhocking Adena Bikeway path that winds alongside the Hocking river from Athens to Nelsonville. My goal was to ride 40 miles today. Under conditions that I have not rode in before I will see how it goes. A little snow can make a lot of resistance. There have already been pledges made towards my effort. - thank you for your support of this venture.

I made a stop at the Pregnancy Loss Memorial at Sells Park. This bench was created by Matt Cooke of Stalwart Construction to provide a quiet spot for visitors to the park entrance. We held a memorial gathering for Jesse at this site in 2011.

The ride continued through snow and wind out of Athens.  A stop at the Eclipse company town in the Plains was needed to rest and rewarm. After continuing,  it was very slow going on the way to Nelsonville. One or two walkers were all that I passed as I pushed through the deepening snow and crusted slush from the day before.
The drag on the bike felt a lot like when I would pull the kids behind me in their little buggy on this same path. Maybe our little angel was hitching a ride with me today. 

The Road Behind

The Road Ahead

       
Mile 19 - Robbins Crossing. Nearly halfway to 40. This is the environmental education intepretive center of Hocking College, I made an extended lunch stop, but the wind and chill shortened the stay. After breaking loose a real wheel and chain frozen with snow, I turned back towards Athens, with a slight tailwind and downhill grade to assist. 







Not long after getting back onto the bike path, two things forced a decision to shorten the ride. The trip to Robbins Crossing had taxed my energy in the snow - my pace was half of what it should have been but the effort was the same to get the first 19 miles in. The second issue was that the snow was becoming soft, and was building up as slush between my fender and wheels, acting like a brake on the tire. Obviously this was going to slow my 
 progress and increase the effort more make the full ride. It was time to call it a day. 





 The total distance was 29 miles in 5.5 hours. I am happy to have been able to work for the families of pregnancy loss now and in the future will need support to aid them in their own journey of adversity and unknowns. 

 





An unsightly but introspective bit of graffiti on a fence along the bike path caught my attention as well: 

The Brave Don't Live Forever, But The Cautious Don't Live At All

Inspiration For A Ride - By Dan


January 17, 2015

         In one week, we will have reached Jesse's 4th birthday. It was hard to imagine making it through even one week after his passing, much less a year or years. But we have all continued with life since that day, and have made Jesse an integral part of our family. Myles and Garrett routinely draw pictures, make little gifts, create cards, talk about and ask about their little brother that they did not meet. They know that they will get to meet him, but they also have sadness and frustration at times - just like their parents do. Nicole is still some time from grasping the story of her third brother's life, but that will come in time too. In all, we have to say that we are living without Jesse as best as we possibly could. Yet, there will always be a desire to find more meaning in his life and passing than we currently understand.
        Hanna and I were asked to meet with a couple that had recently lost a child before birth, in their third trimester. Sitting with them, I felt almost useless to provide anything to help ease their sorrow and clear their confusion. Every family is different, and every loss is very personal. I have no doubt that our willingness to listen to their story and to share ours was helpful - yet I also recognized how far yet I need to go in my own journey of understanding.
       A few days later, I received an assignment in an MBA class to launch a small entrepreneurial venture. With $5, I was to pick  a product or service to provide, promote it, and see what happens. My first thought was to buy a paint brush and advertise myself as a painter. Certainly doable, but not very inspiring. My thoughts wandered around and found their way back to the day with the couple we talked to a few days earlier. I had to do better than to simply sit and listen the next time; there needed to be some concrete resources available to the next couples that face this event in their lives. So, that was the inspiration for the fundraiser bicycle ride that I will take on Monday, January 26th to raise funds and awareness for a bigger support resource that would be provided through the Athens Birth Circle, a non-profit organization for couples in our community that are starting their own families or currently have young children. Despite the frequency of infant and child loss, those in our community who experience this event have limited resources to turn to for information and support that is so needed by parents, loved ones, and friends alike. Unlike the loss of a loved one later in life, the loss of an infant or child is difficult in ways that are unique, and often requires a unique response. 

                  To begin to address the need for more resources for families who have lost a child, I am asking for pledges for each mile that I travel by bicycle on the roads of Athens County. The planned route is below; my goal is to ride 40 miles to mark the four years since Jesse's birth and passing. The funds that are raised will go towards the founding of a resource library for pregnancy loss, and also to support the costs of accessing professionals that work with these families.

          At the completion of the ride I will post highlights and photos from the ride on this site. If you would like to make pledge, you can do so directly by using the Paypal link at the Birth Circle website: www.athensbirthcircle.com. Donations can be made until January 31st. 

 

Ride will begin at 8:30 AM at E.State Street Pepsi Lot. End at West Union Park Playground 

Our "Hope"

I know it has been a while since Dan or I have posted. The summer has passed and with it, lots of time to think, to question, to heal, and grieve Jesse's death. It has been so hard to celebrate small things, but we now have something real to celebrate.

Our "Hope".

I didn't think I would ever get to the point where I would be okay (much less excited) about looking at baby clothes. They all reminded me that Jesse was not here, not able to go into the sling or wear little shoes!

But, now I have "HOPE". I am now 20 weeks pregnant with our little "HOPE". Healthy, active, beautiful!

Jesse was just as God wanted, and now our 4th child, also just as God intended!

OUR HOPE!

The Ups and Downs of Life without Jesse

Four months have passed since Jesse's BirthDay. There have been many ups and many downs during these past four months.

Myles and Garrett continue to amaze me by their honesty, their caring, and their reality of who their brother is; an amazing part of our family.

It seems the world has kept going just as fast for so many people, and other have had the chance to totally stop (in their tracks) and consciously decide how to go on from this point.

Dan and I have changed. You cannot give birth to a beautiful son, look into his eyes, and then say good-bye and not change!

We are not sure what God has planned for us from this point on, but we do know that we are blessed. Blessed with love, blessed with amazing children, blessed with now knowing what is truly important in life and the ability to see how strong we really are!

A Diagnosis...

We have a diagnosis for Jesse.

Thanatophoric Dysplasia Type I...Thanatophoric Dwarfism...

---a rare (1/50,000) lethal dwarfism that is caused because of a rare "autosomal dominant mutation in the fibroblast growth factor receptor 3 (FGFR3) gene"...TD1 is due to "de novo" mutations". In other words Jesse's condition is totally random and could happen to anyone.

Thanatophoric Dysplasia (TD) is characterized by short limbs, large head, short neck, short and small fingers, bowed extremities., short ribs to name just a few.

Here is a link for more information: Genetics Home Reference

How does it feel to have a diagnosis? Mixed.

1/50,000 (maybe more!) The question of why us-WHY Jesse? So, in that regard - Angry!

De Nova: not inherited-relieved, but again then WHY!!?!?!?!!

There is still no answer WHY? But when I stop and pause I know why. Because Jesse was suppose to have TD1 . He was suppose to change the world by his absence, not his presence. Is this easy to swallow-NO! But Dan and I are trying to adapt, trying to find the new norm, trying to pick up the pieces and move forward. Some days are good. Some days are not. And no day is the same. It seems like Dan and I have been re-wired. We are no longer the same to people that we were 9 weeks ago. We are changed. Now we are trying to figure out what it all means.

~Hanna

A Glimpse of Meaning

The memorial mass that was celebrated for Jesse on February 26th was 15 years to the day that I stood at my own mother's funeral mass. I could not have possibly known that I would be marking the passing of our infant son 15 years later. We are all prepared for what the future holds by our past and present experiences, and I know that Jesse's story has and will continue to prepare us and everyone who knew him for the joys and sorrows of the years to come. This is a good thing - and faith is the key that unlocks our ability to experience all that life has in store for us.

The homily delivered at the memorial mass captured so well a glimpse at what I believe Jesse's life was meant to show us. Here is that glimpse, in the words of our pastor:

Human life is precious. Indeed, it is sacred.

There are passages in the scriptures that indicate that Jesus, even in while in the womb, was already influencing others. When Mary, carrying Jesus in her womb, made the trip into the hill country to visit Elizabeth, who was also pregnant, Elizabeth was overjoyed. She was “filled with the Holy Spirit” and remarked, “Who am I that the mother of my Lord should come to me”. Not only was Elizabeth touched by the presence of Jesus, but even the child in her womb (John the Baptist) was aware of and reacted to the presence of Jesus. Elizabeth went on to say, “the moment your greeting sounded in my ears, the baby stirred in my womb for joy!”

Today we have come to remember the life of Jesse Jo. He was born on January 26 and lived for less than an hour. But his life really began 8 months earlier when he was conceived in Hanna’s womb. And his life too affected many people in those 8 months and continues to affect many people today. He obviously affects the lives of Hanna and Dan, Miles and Garret. And I know that he has had the attention of many people beyond his immediate family; there are all those other extended family members, grandparents, aunts and uncles and cousins; there are the doctors and nurses who became involved; there is the birth circle; there are the friends of Dan and Hanna; there are all of us parishioners and everyone else gathered here today. Didn’t Jesse Jo get all of us praying more? And praying more intently? God is likely saying to him now, “Good job, Jesse!”

After Jesse’s birth I had the great privilege of seeing him, touching him and baptizing him. That means I saw, I touched, I baptized a saint!

It is our firm belief that after his death Jesse went straight to heaven, that the words of Jesus in today’s gospel, “Let the children come to me,” applied to Jesse in a special way!

The readings we have just heard, assure us that, as Hanna provided for Jesse in the womb this last 8 months, God is now providing for him in heaven and that, for him, there is rejoicing and happiness there.

Is Jesse’s influence or work finished after such a brief life? I don’t think so.

It has been 2,000 years since Jesus’ death. And we still pray, asking him to help us, guide us, heal us, and to intervene in the lives of our family members and friends.

So, too, because of our belief in the communion of Saints, do we turn to those saints in heaven and ask them to intercede for us, to bring our needs, worries and anxieties before the Lord. After all they are much closer to Him than we are.

So while there is certainly grief in our hearts because of Jesse’s death, let us realize that he is very much alive; that he cares about us; that he is present with us today spiritually; and that he is ready and willing from his place in heaven to intercede with God on our behalf.

Today is a good day for us to take a moment to consider what are our anxieties now and for what might we ask Jesse’s intercession as we celebrate his entrance into eternal life.

"Our Family"

"Mommy, Daddy, Myles, Garrett, and Baby Jesse"

by Myles D. Vorisek

Age: 4 (almost 5)

March 8th, 2011