telling the story again…

hello, friend. xo
I found myself in another part of the world this past weekend. It’s an experience that has become quite familiar the past couple of years, as our wedding work has turned primarily to travel weddings. I was in the company of a very dear family and had the honor of being their shadow as they gave away their daughter in marriage. This family took such an interest in our story, and particularly in the part of our story that has involved zion.

I found myself telling them the story from the beginning and at every turn in the journey they would marvel at what God has done for us. I found myself saying things out loud that, five years ago, I never thought or could have imagined would be a part of my story. things like,

“his birthmother didn’t know she was pregnant…
he was three months premature..
he suffered two serious brain bleeds after birth and that lead to hydrocephalus..
he had been left in the nicu without a family for a month when we met and adopted him and he was only three pounds..
the doctors told us he would very likely never walk, talk, laugh, crawl, see or hear properly..
but we knew in our hearts he was our son and we were made to be his family.
when we finally brought him home to normal life, we realized he couldn’t hear.
he failed his hearing tests, our pastors came to our house and prayed for him and immediately it was clear he could hear…he passed his hearing tests..
we took the kids to colorado with us for a workshop and zion’s heart stopped..I did CPR on him in the back of the car while jeremy ran all the stoplights, getting us to the closest hospital within seconds of us losing zion.
workshop: cancelled.
he needed brain surgery..two days later he was strong enough and went in and out of surgery with no complications. a non-programmable VP shunt valve was installed in his brain.
he functioned much better after that surgery, and the strange thing about the shunt is that, while it keeps him alive, there is a certainty that one day it will break or malfunciton or he will outgrow it. the scary part about that is we have no control over the time or situation in which that happens, and we are told it could look similar to our experience in Colorado..we live in the tension of fearing the possibilities, but trusting God..
He has overcome so many of the odds. He has Cerebral Palsy, which mostly shows up in his legs with spacticity and tone problems, so he wears orthodics to help with that and will be undergoing botox and casting in just ten days to try and prevent him from walking on his toes and needing surgery ..
He has learning delays and tested out at a 14 month old level at the beginning of the year, but he is in a special needs preschool two days a week where he is growing and challenged and helped by specialists and therapists.. it’s a very expensive school and the only way we could ever have him there is because dear friends and strangers from all over the world gave to a fund to help pay for zion’s school…
and he is the. most. beautiful. boy. on the face of the earth.
he has changed us.
he has shown us what really matters and what really doesn’t.
he has been one of God’s greatest gifts to our life.”

And it’s true. It’s all a true story.
I just sit here and marvel because – yes, zion is a beautiful spirit living inside of a broken body but – God has shown himself to be near, beautiful, creative, powerful, loving, and faithful. He has shown us that his love and care are better than any kind of false control or security that we spin the earth on our index finger. And I, for one, really thought that I did most days.

I just want to say, to whoever of you dear few friends read this – if you have had any, ANY part in this story we are living out with zion – whether that is praying for him during his surgery, pastoring us, bringing us meals, visiting us in the hospital when he is in there for another asthma scare, or giving very sacrificially and generously out of your own pocket to help us put zion in the special needs preschool, THANK YOU THANK YOU THANK YOU THANK YOU. If we could, honestly, we would sit down with each and every one of you, look into your eyes with tears in ours, and tell you that it made a difference, it is making a difference. You have changed our lives, and you may never fully know or see how, but you have.

We go into the next phase of zion’s CP treatments with botox for the first time in ten days – October 24th. The doctors will inject botox into his calf muscles to temporarily deaden the muscles so they will be able to stretch and cast his feet at the angle where zion could have the best chances of learning to walk and run properly, without doing long term damage to his joints. It’s a temporary fix, but all of his doctors have been pushing for this for a long time and, as one of them most recently said, “botox could mean the difference between zion not being able to walk the length of his high school when he is a ninth grader, and being able to walk around normally without other kids even knowing he has CP.” so, we are going into uncharted waters again, and would love your prayers and love and support in a time when we will most likely be dealing with a very confused, big, baby boy who doesn’t understand what is happening to him and why.

Again, thank you. really. I know most of you who will read this and I love you dearly. And if I don’t know you, I love you for reading this far and caring for our family in seen and unseen ways. We are strengthened and hopeful that God has given us all we need in Him to walk these paths with joy and purpose. thank you for walking with us.

ash (and jer and the boys)

show hide 10 comments

Erika Chapman Hey! We are walking a similar journey:) Our forth for we appts and she has cp and cortical vision impairment. She had had botox and we are in the throes of double hip surgery. But what a blessing she is and has taught us so much about God’s faithfulness! I’m @erikaivory on Instagram, but I use FB more often:)November 8, 2014 – 12:50 am

Esma Hello, Ash! I have come across your website through your instagram. When i saw your photos, I initially said, “such a beautiful family.” Then after I read about your journey with Zion, my respect and sympathy skyrocketed. My mother has been diagnosed with cancer twice: once I was in 5th grade and second time was 6 months ago. When I was talking to my father about it, he told me he has never had a greater burden in his shoulders in his entire life but also has never felt closer to God. I think the best thing about being a believer is the strength it gives you even when you are faced and tested with the hardest: knowing that, as you said, this is not all there is to the menu and it gets better. I am a follower of Islam, so I turn to my script for hope and solace when in times of distress. So I wanted to share some verses from Quran with you and hope it brings you and your family as much inspiration as your story has brought me:

“Have we not opened your chest for you? And removed from you your burden, that weighted down your back? And exalted your name? Verily, with the hardship there is relief. Verily, with the hardship there is relief. Then when you are here, devote yourself to the labor of worship and turn to your Lord.” (94:1-8)November 6, 2014 – 10:29 am

Tina Thinking of you guys today as you begin Zion’s botox treatments. Our God is good and He promises to arm you with strength and keep your way secure (Psalm 18:32). Your story is one filled with SO MUCH hope and I can’t wait to hear the testament of what God continues to do in your lives – working all things together for the good of those who love Him!October 24, 2014 – 5:37 pm

Christine I am a friend of one of your friends and have been following your journey for a couple of years now. I have a dear friend who adopted from Ethiopia and their daughter has faced MANY of the same struggles your Zion has. Their daughter has had several botox treatments for her CP (our DS also had a round of botox about 5 years ago for CP like symptoms with success). I would be more than happy to connect you with the family if you should desire to hear about their experience. Perhaps there is something you can share with one another??October 20, 2014 – 9:45 pm

Katie In sorrows and in triumphs, God is good. Thanks for reminding me of this truth. We love your kids from afar and are praying for many more triumphant milestones ahead.October 16, 2014 – 6:19 pm

Laura sweet zion!! we are praying for you and this procedure! your story is one of telling about God’s great mercies! we love you, parsons!!!October 15, 2014 – 10:48 pm

Alisha First of all, when did he get so big!?!? Holy moly. Second, what a beautiful story and a BEAUTIFUL testimony. Thank you for sharing!October 15, 2014 – 5:46 pm

Dev Wow, really amazing to hear the story from start to finish now. It’s hard to imagine that Zion is the same baby that fit in one hand and couldn’t open his eyes more than a squint. He is life personified. I’ll be praying about the Botox. I’ve heard miraculous things, but I know it will be scary just the same. Love you all.October 15, 2014 – 1:50 am

Gian Carlo Hi Ash and Jeremy
I will be keeping you and Zion in my prayers. This botox surgery will be successful. I believe it in my heart.I love you both and I know God is blessing you though Zion amazing future destiny.
hugsOctober 15, 2014 – 1:50 am

Kristin Beautiful, beautiful boy. Much love and prayers to you guys as you walk through this next phase with Zion.October 15, 2014 – 1:13 am

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