eating my feelings, loving our baby, and trusting God with it all…

I’m not gonna sugar coat this, the past few weeks have added up to this being a difficult season. It’s a season of eating my feelings, and unfortunately for the first time in my life, those feelings taste like sugar and come in the form of mexican cokes (made with real sugar), ice cream sandwiches, and a bowl of golden crisp late every night. I recently turned to Jeremy around 11pm on one such night and asked, “so I guess the fact that the mascot of this cereal is actually a “sugar bear” means I might be making the wrong choice here…” He looked at me as if to say “um. what’s my line here?” and then avoided eye contact. I still ate the cereal.

I’ve found myself not only eating my feelings, but numbing them. Sometimes, I just don’t want to be a grown up and I want all the grown up things about life to go away. Remember peanut butter and jelly sandwiches when you didn’t have to eat the crust, little thermos cups filled with hot soup in your school lunch, and no bills? I do! And I want to go back! ok, maybe not really. I didn’t wear my braces and scrunchies as well as I thought I did. But oh my goodness, this grown up gig is really hard sometimes, and – despite a big piece of artwork hanging in my living room telling me we can – sometimes I just don’t feel like I can do this. Jeremy shares my sentiments often, and we both sit there giving each other “this is hard” type glances.

Don’t worry, we aren’t sitting around in my house with the blinds drawn, listening to iron and wine and writing in our journals about the dark nothingness. we don’t own blinds and who has time for music when you spend most of your free time watching Brooklyn 99 (actually hilarious), Downton Abbey (re-runs), The Following (oh my gosh so intense, we can’t hardly get through the first season!), 24 die another day (OMG, Jack is SO back), Moone Boy (amazing), and playing 2048 (the commercial for this game would go something like “don’t feel like you’re wasting enough of your precious life away on social media? well, then PLAAAYYY 2048!!!!”). Get it? numbing. numb. ing.
because in the past few weeks, we have learned a couple of things that change our lives:

Zion has officially been diagnosed with cerebral palsy.
Zion’s brain is testing out at a one year old level average. He turns three on monday.

There it is. The cursor is flashing here waiting for me to type something really brilliant here, but I can’t help but just let it flash and read the words, let them sink in.

We had two very opposite reactions to this news in the past couple of weeks. The first came in the form of something like “ok. well, you knew this was probably going to be his diagnosis, so does this even change anything?” the other in the form of “Oh my gosh! This is huge news! We will be praying for you and for him in this time.” To the first, I said something like “yeah, it doesn’t change much at all.” We have a son who is in 3-4 therapies per week and whose regular routine includes Children’s Mercy Hospital. We have a son who has been keeping this schedule ever since he could participate. We have a son who suffered a traumatic brain injury at birth and has been through two brain surgeries and is looking at the promise of more in his future and frequently has MRI’s and visits to his neurosurgeons office. Yeah. No big deal. LOL, whatevs. This doesn’t change a thing.

But the truth is, this is a really big deal. It’s a big deal to me because I’m his mom and he’s my son and I am reminded once again that my son is not well. And if you are a parent, you know that changes some things. And sometimes, it’s just nice to hear someone respond in a way that shows me they have empathy, that shows me that they get that this would really hurt sometimes if they were having to watch their baby face so much opposition just to function and progress semi-normally. It’s nice to have someone give us space to recognize that, although zion is a little walking miracle, he still has a very broken body and brain that will not function “normally” in the way his older brother’s or his dad and mine does. It’s nice to have someone acknowledge that this is a big deal, because it feels like a big deal to me lately. And I’m talking hours of hulu+netflix and boxes of the sugar bear’s magic potion big deal.

Jeremy said it well a few nights ago… “In the course of the past two weeks, I feel like we have been thrown into the deep end of a pool and have realized we don’t actually know how to swim.” With the diagnosis and the test results came the full time jobs of parent/advocate – many more meetings, trainings, phone calls, letters written and battles fought – all trying to get our sweet boy the care he needs and deserves to have, the care that might make the difference of whether or not he grows up to function well in his world, and the care that the state / school district really doesn’t want to have to pay for. You guys, this stuff is a lot of work. And it’s more evidence reminding me of the real reason I am eating my feelings via calories and streaming megabytes:

We have no control here. We don’t hold the cards. We don’t get to call all the shots. We can’t predict the future or change the past. We can’t even change the hearts of the social workers so they want to help our son instead of just win the money battle. We can’t make $700 appear magically each month so we can send him to the school where his therapies would continue and he could be around other kids like him. We look at the sign on my wall and realize it’s not completely true. because We can’t do this. The only way we are going to keep zion alive, parent zion well, and see his needs met is if God does all of this for us and through us – moving mountains we can’t move, and giving hope we can’t find within our own efforts. Or, as we say a lot in this house:

We can do this…with God’s help. and maybe a bowl or two of golden crisp.

if you are reading this, it means you love us and you know us / our story well. we would love and ask for your prayers –
1. for zion to continue to heal and progress after his surgery this past week.
2. for the school district to miraculously change their minds and agree to contract with the special needs preschool that zion’s doctors have all said he needs to attend. (we are trying to schedule another meeting and have letters from his doctors and therapists to help our case).
3. if they won’t change their minds, that God would provide the money for zion’s tuition.
that we won’t lose heart, and will be able to see the beautiful and always gracious hands of God caring for us, here and now.

thanks for listening and for being here, it means a lot to me and to us.

show hide 8 comments

keri bryant Jer/Ash –
I have been swooning over your photos and your sweet family for years, now. I had no idea that Zion had this diagnosis. I am so very sorry. He is such a cute boy and your family is so very full of love. I will pray that you are finding a way for him to get the best care and you will have peace.
I have told you before I am already counting on you guys for my 3 daughters’ weddings. I also regularly (and tonite!) share your work with all my friends. I am hoping that new clients and income will come your way. The Lord will provide, but your biggest fans can do our part, too.
Thinking of you guys and keeping Zion in my heart,
KeriOctober 5, 2014 – 3:34 am

Emily Sims I just happened upon your site via our good friends, Jade and Kyle Pierce. Just want you to know my heart is aching for you and I’m praying.June 13, 2014 – 4:32 am

sharon I don’t have words but my heart is with you and I am praying, crying out to God to meet all needs. It’s been New York Super Fudge Chunk ice cream over here 😉 and this has been my verse, I hope it comforts your hearts too…

“The Lord your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with His love, He will rejoice over you with singing.” – Zephaniah 3:17

so much love for previous Zion and your whole family xoxoJune 6, 2014 – 3:48 am

Kim I don’t know you or your family personally, and I don’t have kids of my own… But this post brought me to tears. I’ll be holding little Z in my heart, thinking the warmest of thoughts for his healing process. Best wishes.May 24, 2014 – 4:26 pm

Megan Gielow Ash + Jer!
You two have some of the most beautiful, open hearts. I’m sure it can’t be easy to hear the diagnosis, even after years of tests and therapies. Zion is a special boy, one that God loves SO much. He knew that the two of you are strong and have these HUGE hearts to love him and be his parents. He is such a blessed boy–his story is and will always be a miracle and reflective of God’s grace. We’ll keep praying for all of you and the school situation.May 24, 2014 – 6:00 am

Michelle Ruetschle Dear Ash and Jeremy, prayers are spoken over little Zion and over you all. Thank you for articulating the grief in all it’s bereft and mundane reality, a grind of doctor’s visits, therapies, letters and cereal boxes. It is so true, the grind, the hard work of it that shines through your words. Acknowledging and sharing it is so precious and beautiful. May hope arise in that bleak place, small yet colorful sparks that reconnect you with a life worth living. Sending hugs for this hard journey. You are brave indeed, mama! Zion is fortunate indeed to be so fiercely loved. XoMay 24, 2014 – 5:48 am

Anna Bonick Oh Ash & Jer… I can’t help but go back to the beginning… When you first saw Zion’s tiny image and you knew he needed a family…and you felt called to him. This truth doesn’t change any single bit of all the strife you’re facing on a daily basis. But it validates that you are fighting for Z just as hard as you said you would when you said YES to him. I wish so much that I was local. I feel pangs of survivor’s guilt that our own preemie is hanging in there and trying like Zion to beat the odds…but do remember that we lost our first daughter to hydrocephalus even more profound than Z’s. I feel tangled in your story and think of you so often. You aren’t alone and I am totally okay with you eating your feelings. Because every feeling has a beginning, a middle and an end. And there will come a point one day that you don’t feel inclined to buy another box… That you can take a deep breath and feel your way through in a different manner. You’re never alone. You know God has you in all of this, but those who love you do as well. I miss you both terribly. xoxoxoxoMay 24, 2014 – 4:42 am

Natalie Norton Bless you and your tender heart for sharing such a personal piece of your puzzle with us. This kind of openness is transformative in all our lives. Thank you for sharing this gift of genuine connection. It matters. I’m praying for your family and for your beautiful little boy. I love you. xxMay 24, 2014 – 4:22 am

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