Glorious impossible

As we navigate the confusing messiness of grief during the holiday season, I found myself looking back through my journal at this time last year… Christmas 2015. As we were gearing up for the Christmas season, I remember Danny and I saying to each other that we both felt it was going to be Titus’s last Christmas. Of course, I questioned my gut instinct and wondered if I was just being dramatic. After all, many kids with CLN2 live to 8, 9, even 12. Titus was only 5. That year I was so very aware and eager to make everything perfect. The complicated thing about holdays and family is that things rarely go “perfect”. But it became a Christmas to always remember. I want to take you back to December 24th and my journal entry that day. I was going to post it last year, but there are times I just freeze and cannot share my heart. But today, I can and will.

December 24, 2015 journal entry:

Each time Christmas comes around I hope I go through it slow enough to have what I call, Christmas moments. Some years I feel successful at this, other years I’m drowning in the schedule. This year has been crazy and I’m tempted to create these moments just so I don’t feel guilty about missing Christmas. However, one such moment snuck up on me last Sunday and it is not one I could’ve planned or scheduled. (And aren’t those the most real, anyway?) It was a moment I needed to allow into my heart to sink in and flood my soul. It caught me off guard. I was sitting in church and our worship leader begins playing a song I’d never heard before. The words told of the birth of Jesus. I let myself  seriously consider exactly how this all played out.

A virgin got pregnant and still remained a virgin. Wow!

Jesus, our Lord, came in such a humble and vulnerable state as a baby boy and his first bed was a manger. Wow!

Mary raised “God with us” and didn’t screw him up! Wow!

Jesus walked on water, healed incurable diseases, loved EVERYONE. Wow!

He took on the most brutal death, a very final deed to release the foothold evil had on this world to unleash even greater powers- Grace and hope and love! Wow! It’s all such a glorious impossible!

And as I listened to this song being played, tears flowed down over my cheeks. At first I was embarrassed. I cry way to easily at things sometimes. And then I felt Him nudge me. “Sit in this.” He echoed in my heart. “I am meeting you here. I am flooding your heart with enough… with glorious impossible.”

There is a lot of impossible going on in our lives right now. Simultaneously, there are a bunch of Christmas moments too. Many volunteered to make these moments happen this Christmas for our family in a BIG way. One church in Illinois purchased plane tickets for family members who couldn’t afford to get here so they could get here! Another generous donor from Illinois sent enough funds for us to make accomodations for our entire family! And a wonderful, new friend helped us land incredibly close accomodations to us (ya know, like 4 doors down). Our California church family stepped in the gap in a big way and provided food for all of us while everyone was here celebrating. A family whom I’d never met beforehand came by to love on our family through the gift of 2 Disneyland tickets. Just a few days later our church family surprised us, yet again, with annual passes to Disney, allowing us to use the 2 extra tickets to treat Gramma Cindy and Grandpa Eddie to an experience with the boys there. Our boys’ rehab team decided to put together a “southern california christmas” to remember and treated our whole family to a duffy boat tour of the harbor, all lit up beautifully, and with delicious food to boot.

The desire in my heart to have everyone here for Christmas had looked quite bleak and, well, impossible! Nothing is as life changing as what happened in Bethlehem all those thousands of years ago, but this year we truly have experienced the glorious impossible through the generosity and love of so many others!

But still the heaviest thing on my heart is the disease my boys fight against on a daily basis. The insane amount of pressure, guilt, and fear that can take over in a finger snap without warning… and I have to talk it back into its little corner. The timeline on a drug that looks to be truly helpful to our boys but is unavailable at this time as it begins the long journey through FDA approval. It’s an impossible situation. Desperately impossible. For me. And in that moment, sitting in that chair in the sanctuary on that gifted-to-me Sunday, I was reminded – No, not desperate impossible… Glorious impossible. 

-End journal entry

Here I am, again facing the holidays with a whole bunch of desperate impossible. At least, that’s what many would think, and often how I feel. The 17th of this month marked 3 months since the last time I held my oldest baby, my 6 year old. That miracle Christmas I journaled about really was his last Christmas. I consider it a gift that God gave us the hunch. And as I watched death swallow him up on this earth in one final breath the night of September 17th at 10:52 pm, I felt the glorious impossible that was the confident hope that our Lord already conquered death and Titus could now fully live the way He was always intended to.

We also find ourselves now 7 treatments in to that treatment I referred to in my journal entry last year. It is still moving through FDA approval, but Ely was graciously granted access to an early access program. The Ride for Ely campaign made it possible to accept the offer for his spot and not have the travel expenses swallow us whole. Glorious impossible.

Now we take on a new chapter. The one where we balance grief, pain, hope, reality… it’s not easy. We have seen first hand in our story and so many others that life doesn’t always end easy. We don’t always land on our feet, but rather curled up in a ball crying out, again, that we simply can’t do this. It’s all a desperate impossible.

And don’t we all have those? Those desperate impossibles? We are a broken people. But my prayer is that as you experience Christmas this year, it won’t be just about the tradition, the food, the family get togethers, the drama, but rather all about the hope and grace this glorious impossible has to offer you this Christmas.

See the Virgin is delivered
In a cold and crowded stall
Mirror of the Father’s glory
Lies beside her in the straw

He is Mercy’s incarnation
Marvel at this miracle!
For the Virgin gently holds
The Glorious Impossible

Love has come to walk on water
Turn the water into wine
Touch the leper, bless the children
Love both human and divine

Praise the wisdom of the Father
Who has spoken through His Son
Speaking still, He calls us to
The Glorious Impossible

Hallelujah
Hallelujah
Hallelujah
Glorious Impossible

He was bruised for our transgressions
And He bears eternal scars
He was raised for our salvation
And His righteousness is ours

Praise, oh praise Him, praise the glory
Of this lavish grace so full
Lift your souls now and receive the
Glorious Impossible!

-Glorious Impossible lyrics

 

Merry Christmas and thanks for listening…

Bekah

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4 thoughts on “Glorious impossible

  1. Thank you, Bekah, for taking us there. My heart is warmed by the memories of last year–the Duffy boats, meeting all of your family, meeting you and Danny. My heart also breaks with sorrow and grief. Last night I participated in a “Longest Night” service for those who are grieving losses in 2016. I was holding you and your family in my heart as I placed a candle for Titus at the foot of the cross. I had a sense of his well-being as I listened to the musicians sing the Aaronic blessing over us. His candle was clustered with 5 others I placed–6 precious souls with whom I travelled to the edge of death as they crossed over this year. Waves of sorrow rolled over me, I couldnt contain my tears at times. I had a sense that I was grieving with you, for you. And with Jesus, whom I sensed was there too as I brought our brokenness to Him–in a kind of priestly way. I guess I’m just trying to say that we are walking this tightrope with you. I want you to know I haven’t forgotten your effervescent, joyful, strong and courageous Titus. I will not forget him. ever. He has changed my life.

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    • That is so special. Love you and Cathi so much… You’ve become family. Thank you for remembering our Titus and for taking time to be with us in his last days. I will always remember what he looked like in your arms as we all said our goodbyes. What a year… Thankful for you to be a part of it.

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  2. Hello. Your journey has been so moving and humbling to me. Your strength In our Lord is such a testament to who you are as a person…Titus was an amazing little boy who made such a difference to so many in his short life…
    I’m praying for your son,Eli that he will do well in this new trial.
    I live in Canada and have just met a mom here who’s son has just been Diagnosed with Cln2 . Unfortunately, the drs here at Sick Kids just told her to take her son home because there was nothing to be done. I would love for you to speak with her if you can… I will be glad to give you her I messenger info.
    Thank you for your courage.
    Blessings,
    Leslie Cox
    Kristen Gray’s Aunt

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    • Leslie, please feel free to send her my way! I’d love to connect with her and help in any way I can. Oh those words are so hard to hear. I hope soon no cln2 family will have to be told that ever again! Thank you so much for your words of encouragement.

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