Fixed; not varied; unchanged; permanent; immutable.
Fixed or firm in mind, purpose, affection or principle; unshaken; unmoved; as a constant friend.
Certain; steady; firmly adherent; with to; as a man constant to his purpose, or to his duties.
Webster's 1828 Dictionary
Lots and lots of people love our little Jaron Matthew! And though I don't know all the ways he's touched people's lives, I know he's had a significant impact on many. But there are certain "constants" in his life and I've been thinking a lot about the importance of those "steady, permanent, immutable, unshaken, purposeful" people. The way that he responds to each one is as unique as the role they play in his well-being.
DADDY : FUN
Mohawk
Feeling Daddy's face
Jaron has always lit up when Daddy comes near him. Even when he's been robbed of most emotions through raging seizures, you can see his eyes light up when Daddy plays with him! He knows the way his Daddy roughs him up and he's always ready and anticipating it. He's gone through stages of being very sensory sensitive and then Brian has to be more gentle. But he knows when Daddy's home and you can see it in his eyes and the way he starts moving his body when Daddy is around. Also, Daddy takes him to experience things he could never see, hear, and do on his own. Waterfalls, hikes, sand, snow, frosting, hair gel, bed forts, scratchy facial hair, video games, and his favorite, loud super hero movies! Jaron loves to stay up late and have a movie night with his Daddy! He lays in his lap in the dark, squirming, smiling and "talking" through the whole thing.
Behind a waterfall at Silver Falls
AUNTIE LISSA : BFF
My big sister Melissa was there the moment Jaron was born and has been by my side through every up and, more importantly, every single down. She is a NICU Nurse Practitioner so she has been invaluable to helping us through the horrible process of medical care that Jaron has had to go through. Any trouble or concern, day or night, Melissa is the one I call. She's shown us how to suction, change a g-tube, ask questions of doctor's, get more help, have courage to give him the meds or OK the procedures that scared us to death, been moral support for urgent care visits and routine hospital stays (and brought me coffee there more times than I can count), listened while I cried and told her, "I can't do this." Oh my, this list could go on and on.
G-tube surgery recovery
But for Jaron, she is so much more. I don't think that anyone has spent as much time holding and kissing on Jaron as Melissa has. And he KNOWS how much she loves him! He loves her that much too! Jaron goes through seasons of "alertness." We are really lucky when he is smiling but it was like winning the lottery when he started to coo (talk)! Without fail, Jaron ALWAYS "talks" to Auntie Lissa. I have multiple videos of Jaron "talking" to her. I even have one at the hospital during an EEG that I called him a Turkey, because he'd been so quiet all day and then when Auntie Lissa sat down to hold him, he just wouldn't stop "oohing" to her! This is why I call her his best friend, because every time she comes over to see him (which is often), he has to tell her all about what's going on. Its like this intimate conversation to "catch up" with his best bud. It is precious and I love that they have this special connection.
Telling "stories"
MOMMY : COMFORTER / GUARD
The funny thing about Jaron and I is that I have this magical ability to put him to sleep! Of course, I'm his Mom. But there's something so sweet and innocent and perfect about sitting down with my little Love and watching his eyes start to melt closed. It's almost like he can't help it. He is so comfortable snuggling in my arms that even if he wants to stay awake, he inevitably loses the battle. If Mommy can't calm him down, chances are, we will be making a trip to the ER because its serious. I cherish this bond, it's one of my great purposes in his life, to be his comforter! A gift on this earth that feels like heaven! He "talks" to me too and I know just how to tap on his chin to make him smile, but without fail, this boy likes to SLEEP most in his Mama's arms.
And as my little side-kick (he's been by my side for 3 1/2 years), I think Jaron knows I've got his back! This journey with him has brought something out of me that is fierce and maternal at the same time. Mama Bear is no joke! Sometimes this means I have to be the "mean one" in order to protect him and keep him healthy. 90% of the time, I have to suction down his throat and he hates that. (But I'm convinced that my "mad suctioning skills" are pretty awesome! I've got it down.) I have to hold him down to get his blood drawn. I have to change all his clothes and linens and wheelchair parts and surrounding walls and surfaces (while he screams bloody murder) to change a poopy diaper, aka Explosion. I have to take him to all his therapy appointments and keep encouraging him through his "hard work." Its kinda sad, I think I make him cry the most but I'm also his comforter and he knows that too!
Snuggling to get his first haircut
"MY HANNAH"
A little Mama at 3 years old
Jaron LOVES his big brother and sisters, they are his life! But there's something unique about his relationship with Hannah. I'm not sure if it's her intuitive nature, or her nurturing service, or her constant companionship, or her endless desire to meet his every need. There's this sense of unexplainable love and trust that they share. She has determined to be a nurse someday and she gets practice every day. Often she hears him crying and she'll say, "It's ok, Jaron, the nurse is coming." She always comes running to his side and knows just what he needs/wants. She is so patient with him and calmly reassures him until he stops crying or seizing, which can take a long time.
Diving over the back of the couch to hug her baby
She loves to just hang out next to him, hold his hand, or wiggle her way under him to snuggle. They have a deep connection that radiates when they are close. I think a big part of their relationship is built on trust. They somehow just truly trust each other and it is amazing to watch. She can do things with him that he dislikes, and he tolerates her tender care more than anyone else. Recently, I've thought about how their friendship is a lot like David and Jonathan in the Bible. "Jonathan made a covenant with David because he loved him as himself." 1 Samuel 18:3 Its like she values Jaron's life above her own, it is so self-sacrificial and pure. She makes my heart smile every time she says, "I love Jesus the most and then Jaron!" And I'm pretty sure every time she comes close, he glances over at her and thinks, "Oh, it's my Hannah!"
"Life change comes when we receive life with thanks and ask for nothing to change." Ann Voskamp
When you're crushed by waves of hopelessness...
Look for the gifts
Seek out the Light amidst the darkness
Because in oceans deep my faith will stand... Oceans by Hillsong (Just BEAUTIFUL)
I am desperate for hope and so I've begun a Thankful Journal for Jaron. Because when you feel crushed, you have to ground yourself with the LOVE OF JESUS!
He's our ONLY HOPE
So, Jaron says, "I'm thankful for..."
1. My family
2. My Mama taking care of me
3. Hannah shaking me around
4. Daddy coming to find me after work
5. Lukas reading me books
6. Haylee holding me standing up
7. My new glasses to see better with
8. Auntie Lissa giving me kisses and holding me till my cheeks turn pink
9. Great Grandma Creamer rubbing my legs and arms softly and quietly telling me stories
10. Seeing the world from my wheelchair
11. Vickie and Syd, my vision and hearing teachers bringing me fun new toys to see
12. Snuggles in the rocking chair every day
13. Being bounced on the bed by the big kids
14. When you shake my legs like crazy to make me smile
15. Nice people who say "Hi" to me
16. Being sung to in the hospital by a guy and his ukulele, "Count On Me" by Bruno Mars
17. All the doctor's around me in yellow gowns and masks, I can smile at them and they smile back
18. When people talk about how sweet I am, I like to "talk" back to them
19. My big brother and sisters always around to watch and play with me, I'm sure glad they are homeschooled
20. Taking a walk outside
21. Hannah riding on the foot rest of my wheelchair
22. A comfortable bed
23. Haylee and Hannah spiking my hair like Lukas
24. Comfy clothes
25. Red things to look at
26. Swimming in the bathtub with Hannah, it's so fun!
27. My pillow
28. Hearing aids to hear people
29. The suction to help me breathe, even though I don't like when Mommy uses it
30. Lots of kisses from Haylee
31. Good night hugs, kisses, snuggles, and wiggles from Lukas, Haylee and Hannah
32. When people get really close and talk to me and wait patiently for me to talk too
33. When my big brother and sisters come to my doctor's appointments with me
34. A baby in Mama's tummy, I'm so excited to be a big brother!
35. Rolling on the floor with Daddy
36. Watching and listening to the dance recital for Auntie Staci
37. Hannah chewing carefully on my fingers, it tickles
38. My sister's putting the superman cape on me and helping me fly
39. Oxygen when it gets really hard to breathe
40. Doctor's who can help me get better
41. Carrie telling Mom new foods to feed me so I can taste new things
42. Playing with my Early Intervention teachers today, I thought they were funny
43. Kelly even brought bells, I loved the higher one
44. Playing with my switch toys
45. Taking a really cozy nap with Auntie Lissa, it was way better than running errands with the family
46. Getting out of my wheelchair when I've been riding a long time
47. Hannah helping get my food and medicine ready
48. My new Timbers shirt from Daddy and Lukas, it looks like I'm running and kicking a ball
49. Not having seizures, I'm so much happier!
50. My friends with MDS, like Daron
51. Hanny snuggling with me when she gets an owie, I can help her feel better
52. Riding over bumps in the sidewalk at the Rose Gardens, big smiles!
53. A picnic in the rain with my family
54. I got a haircut
55. My little Lamb that makes sounds when I go to sleep
56. My Jaron Matthew song
57. Lukas singing to me when I couldn't stop crying in bed
58. My Mom or sisters singing and praying with me at night
59. Laying on Dad's lap while he watched a loud movie, I just looked at him and told him stories the whole time
60. My big brother always opening the ramp so I can get in the van
61. Swinging in my swing in the backyard with my family, feeding tube, oxygen and all
62. Tummy time on Mommy in the rocking chair, my favorite part of the day
Jesus "has never failed and He won't start now" from Oceans
Brian and the kids are off on a crazy adventure. They went to bed at 8:30 like normal. Then, Brian got them all up at 9 and whisked them off to a movie!
They were SO EXCITED!!!
Jaron and I get to stay in the quiet house!
I'm SO EXCITED!!!
I've sung about 20 songs to my boy and he is Mr. Chatty and Smiley tonight! Anyone who has had the gift of "chatting" with Jaron knows that it is like pure gold! A few have even been moved to tears because it is just so precious, sacred even. Obviously it is rare and not to be taken for granted. We ended on our favorite song, one my Grammy made up for her only son 40 years ago.
Jesus loves you my little son. You're a very special one. The Lord gave you to us one fine day, in a very miraculous way. Now its time to go to sleep, in your slumber He will keep. Jesus loves you my little son. You're a very special one.
I wasn't supposed to have 365 days to rock my little one to sleep but I have had several hundred instead! Three years of rocking almost every night makes me one spoiled mama!
I have been on a wild adventure of my own that I'd like to try to explain a bit. God is showing me new ways to be a Mom. He's actually showing me a new Him. It's quite clear that I love my children and they are growing a reputation for being very helpful and kind. Character qualities that a special little brother can uniquely teach you to build. My desire for them has always been to capture their hearts, to teach them to love Jesus, to love others, and to love learning. They love Jesus with passion, they are teaching and stretching Brian and my faith daily! But there was something missing and I'm on a mission to find it.
It's easy to say that all kids argue, disobey, ignore, disrespect their parent's and siblings. But I'm convinced there is another way. I don't claim that I can conquer these bad relational habits in my own strength, either in myself or my children.
BUT GOD CAN!
The Lord has led me, on several occasions, to Lifestyle of Learning. I am waist deep in studying and pouring through all the rich encouragement and teaching that they offer. I AM LEARNING and this is where teaching my children begins! I must allow God to parent me so that I can confidently parent my children. I want to be able to say with a clear conscience, like Paul, "Whatever you have learned or received or heard from me, or seen in me-put it into practice." Philippians 4:9
Because they will.
The good.
The bad.
They will DO what they learn, hear, or see in ME. Wow, that's a heavy responsibility God puts on parent's. But He backs that up with a promise to sustain us and teach us His ways, "Come to Me, all you who are weary and burdened, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:28-30
So, I'm learning. I have a lot of listening and obeying to do.
Homeschooling gives me a unique opportunity to speak truth and love into my children all day long. Or, I can stack text books and agendas and expectations in front of them and have only a harsh, negative impact on them all. day. long.
It feels like I'm strapping on a parachute and getting ready to jump into the wildest ride of my life! Lord, please mold me, shape me, and above all, show me your great love!
We are doing well! It's been a season of traveling that we never would have expected but are very thankful for. In September Brian and I, joined by his sister and bro-in-law, parent's and grandparent's, cruised majestic Alaska! Unforgettable! Dream come true! Saw the glaciers, bald eagles, a brown bear swimming, White Pass Railroad, world's best yodeler, mountains, trees, water and clouds like never before even in our beautiful Pacific Northwest!
Glacier Bay, Alaska
Then, in October we celebrated our 10th wedding anniversary, beachside in Maui! I told Brian, just send for our kids and I'd stay forever in Hana! A-MAZING!!! It was like the garden of Eden. We snorkeled, surfed, kayaked, zip-lined, swam with turtles and under waterfalls, luau-ed, and slept thru the night 10 nights in a row-MIRACULOUS!
North Shore, Maui
And I just returned from a whirlwind tour of New York City with 16 crazy ladies (Brian's mom, sister, aunt's and cousins). A dream trip for Auntie V's 60th birthday, I was much obliged to join in the celebration! We saw the Statue of Liberty, Wicked and Annie on Broadway, 9/11 memorial, Brooklyn Tabernacle, Times Square, Radio City Music Hall, Central Park in the snow... I have officially eaten my way through Alaska, Maui and New York. Food will never be the same!
Radio City Music Hall (Rockette stage), New York
The kids are doing great, wondering when they get to travel the world! I'm shocked and grateful to be 24 weeks through school, still loving Sonlight. Lukas has become a little bookworm and I never cease to be amazed by Haylee's creativity and Hannah's nurturing devotion to Jaron. I LOVE my kids! Hannah just finished her first experience with Ballet. I think this will be a well-suited passion for our little Princess Pea. Haylee and Lukas are in their second season of Kid's Choir. Lukas has one of the main speaking parts for the Spring Program and is a natural performer. Haylee has a solo that is so sweet, and she is so excited! She definitely comes from a family of singers, on both sides.
They each picked a theme for their bedrooms and we've been working hard to make each of their spaces unique and special for them. Lukas chose eagles (like his Great Grandpa Albaugh) and sports. Brian is working on an eagle's nest bed. You can't even imagine... I'll have to take pictures when it's all done! Haylee chose a beach theme and has lots of our Hawaii pictures framed on her walls and seashells on white shelves. Hannah is obsessed with flowers and she has an overwhelming amount of floral decor in her bright purple bedroom.
Jaron is having a rush of appointments again and transitioning into 3-5 year old Early Childhood Special Education. I believe the plan will be to homeschool him this year and we'll see about next year. At this point, with his brother and sisters at home, it is wisest to keep him away from exposure to sick toddlers and keep him entertained by the play, toys, music and action at home. I cannot believe his 3rd birthday is only 7 days away!!! Our little man is such a huge source of joy and I just can't imagine life without him! It's still like having a 3 month old baby in the house. On good days, he coos and smiles and occasionally sleeps through the night. Arching and stiffness have been his position of choice and after trying so many things, a Shriner's doctor told me it's probably acid reflux. So simple, yet more Prilosec has made a much more relaxed and bendable boy. His seizures were out of control 2 weeks ago, but after just 2 doses of Ativan, that made him sleep, he is very alert and happy (see video)!
Glad I could catch up, hopefully it won't take 9 months next time!
Trying something new! As in, we don't think anyone has made anything like it! Thanks to the creative minds of our awesome Physical Therapist, Stephanie, and Adam, an Orthotist at A Step Forward. I'm so excited about this and it hasn't even been made yet, but it is in the making! Stephanie got in touch with Adam and explained the difficulty we were having with getting Jaron access to his augmentative communication tools.
We just received the equipment funded by the Wheels to Walk Foundation including, jelly bean switches, a mounting arm for button positioning, and a computer switch interface. Basically, this means Jaron can play games on the computer that are created to be used with a button instead of the computer's mouse. Crazy!
The obstacle for Stephanie and Adam to overcome was to give Jaron the support he needed to sit up with complete support for his back and neck but also the ability to move his head. Stephanie gave very specific requests and Adam thought for days and dreamed up an original head/neck/torso brace. When we all got together at one of his phyisical therapy sessions, Adam whipped out this long white foam pad and two velcro strips. He measured, cut little armpit spaces and strapped it around Jaron's waist.
Stephanie and Jaron trying out the foam pad and velcro brace that Adam made.
He seemed to relax when he had good torso support. Now we just need to work on that neck control!
It was amazing what a difference that support around his waist gave. He was immediately more calm, not trying to arch, and allowing Steph to transition him from sitting, to laying and side-lying positions! Brian and I were excited about the idea of being able to hold Jaron with just the torso portion of the brace! Adam started brainstorming ideas about how he would separate the head/neck portion from the body portion. He mentioned some kind of flex-joint he can put in the neck to make it moveable and some disconnect-able parts for the head brace. This is all new ideas and we just can't wait to see what Adam will create!
Brian used some floor pad that goes under wood flooring to make a little brace to try out at home.
Today was casting day! Thanks Abby for keeping the big kids, this was quite an involved process! First, they pulled on a little tube-like garment with arm and face holes. He looked like a Teletubbie! Then, they wrapped the top of his head, down his neck, and around his belly with plaster of Paris. He wasn't happy but he didn't scream too loud. The water was warm and by the time it was hardening up, he felt well-supported and he just looked around the room. I wish I had a picture of this step of the process, but we were using my whole body and 6 other hands to support and wrap him and then hold him still.
"I am not thrilled about this."
And this is the cast! Looks pretty crazy but I am obviously very hopeful that it will make a great impact on the possibilities for Jaron's support and communication!
Jaron's brace will wrap around his whole mid-section from under his armpits to the bend of his hips, leaving a little hole for his g-tube. The support up the back of his neck and onto his head is the part that Adam is designing brand new! This support will allow him to play with his switches as they are mounted right next to his temples. He uses a very slight movement of his head to activate a jelly bean button to turn on a toy. Without any muscle tone in his neck, it is very floppy and therefore difficult to support. The switch toys are not only for playing but they will be his window into communication. Our goal is to find Jaron's "voice." And I can't wait to see what he will be capable of communicating through this extraordinary invention!
***And just as a side note to my family and old friends: This definitely takes me back to my childhood, wearing a back brace for scoliosis! Four, long years, 13-16 years old, sheesh. They actually had 2 braces up on a shelf in the casting room that looked exactly like my brace. Jaron's brace, Adam assures me, will be much more pliable and comfortable!***
Haylee trying on my back brace. I think this is the only picture I have of that dreadful thing!
Psalm 89:1 I will sing of the LORD's great love forever; with my mouth I will make your faithfulness known through all generations.
Two years ago, when Jaron was only 2 months old, I wrote this post. I decided to take on the challenge of writing down one thousand gifts from God. I could focus on the tragedy of what I felt my life had become or open my eyes fresh to what God had given me! I can't even begin to explain what a transformation and peace this process has brought me! Naming the beauty that God shows me every day is simply miraculous! I don't have to travel great distances or do great things. My life doesn't have to be put together, stable or even happy. My circumstances can be scary, depressing, overwhelming or downright horrific. I just have to look around me and see...
Photo by Staci Friant
God is good and He is the Father of Lights giving us only good gifts, and I have received. Not just in a passing, "yeah, sure, whatever" kind of way. But rather, in a STOP. SEE. BE AMAZED. And then, WRITE IT DOWN, way.
Photo by Staci Friant
Just the other day, I reached my goal of writing down 1000 gifts! My perspective has changed and I never want to stop naming the gifts! As I was finishing my list this week, I started reading the book again. I've recommended it to friends, bought it for birthday presents, lent my copy to sisters... It changed my life and I want to pay it forward!
One Thousand Gifts by Ann Voskamp
I'm a "journaler" for life. I have sweet childhood journals, silly teenage journals, traveling journals, wisdom for being a mama journals, journals to my kids, prayer journals, sermon note journals... And this most recent one is only the beginning, but I will cherish it and return to it often because sometimes I forget what God has done in my life. I get discouraged. I struggle to see the sunlight through the dark clouds. I lose my temper. I lose my hope. The winter is long. The bare trees expose the barrenness I feel deep in my bones. I feel lifeless, unproductive, unfruitful... Not because any of these things are true of me. I just lose sight for awhile. I need new eyes to see. Naming the gifts has given me new LIFE!
Sometimes I had to add some special pages to fit all 1000!
But usually it looks just like this.
"Life change comes when we receive life with thanks and ask for nothing to change." Ann Voskamp
"Something always comes to fill the empty spaces and this is what I've come to do with the white space. I invite thanks." Ann Voskamp
A few of my gifts: 6. Feeling peace when my world is falling apart. 17. My leadership team at CBS. They have carried me in prayer to the very throne room of Jesus. 25. Finally opening the windows again after the cold winter. 33. Hand-me-down clothes from friends for my kids. 37. Haylee fills our home with constant singing. 40. God's timing. Though He won't reveal His purpose, I know His timing is perfect. Psalm 33:11 49. Clean clothes. 64. Family and friends who show up to help when the ambulance pulls up to our house. 108. 3 months with Jaron Matthew. He is so precious. 133. God alone is God. Not the doctors. 255. Blue sky, white clouds and green leaves. 318. Pain and sorrow that makes healing and joy so precious. 328. Taking my thoughts captive to obey Christ and realizing it's not easy. 358. Courage to keep hoping when all seems lost. 415. Thankful children. 422. TRUTH, even when it's hard and uncomfortable and I'm afraid. 473. The moon. Wow! 534. A date night with my little girls. 787. Reading to all 4 kids OUTSIDE! Beautiful day! 827. Lukas working hard with his Daddy. 907. A cup of coffee, a book and a lap full of my kids. 959. Always going on an "adventure" with Brian and the kids. Learning it's ok to not know what's next....
So, go get your own spiral bound notebook to lay open on the counter or tuck in your purse. Buy the book because it is so inspiring. Begin writing down the beautiful, amazing, difficult gifts that God has given you. Your life will be changed. Not necessarily your circumstances, but certainly your perspective.
Please pray for Jaron to stop having seizures. And for my heart that stops every time I watch my baby suffer so violently. We need wisdom and peace from the Lord. He has guided us through so many unknowns and I know He will continue to show us the way. We have been loving that Jaron is more alert and sometimes even gives a smile! He is not on any seizure medicines right now besides the ketogenic diet. The decision remains in our hands whether we try another medicine. I hate the side-effects that such potent anti-seizure meds cause but if there is any hope of better seizure control, of course we desire that. Wisdom, we need wisdom.
