Thursday, October 23, 2014

Six months post diagnosis

Today marks 6 months since we received Ryan's diagnosis.

I have written so little on this blog in the past 6 months. I have so many thoughts and words in my head...but they rarely make it onto this page. 


I love this blog. I have poured countless hours and energy into the words written here. I am thankful for the opportunity to share our story and God's plan for our family on this page. And I hope to write again more regularly...someday.

For now I am parenting and working and caring for my husband and adjusting to our new normal. And I'm writing updates and prayer requests on this page for our community so they can be praying for us on this new journey.

Today I wrote a thank you for the love and support and prayers that we have received during the past 6 months. For all of you who have shared in our story and the miracle of our children and walked with us through a season of unemployment--and have reached out to me recently--this thank you is for you as well. I have not responded to your emails due to limited time, but I have read them and I am grateful for your words and for your encouragement.

God is good and He is always faithful to His Word. We cling to His promises. We trust in His plan. And we believe that He will make this, yes even this, beautiful in its time.

Tuesday, September 2, 2014

The big yellow bus is waiting for you



Written Monday, August 25, 2014...



Dear Samuel,
This week you’re taking a big step onto that yellow bus Wednesday morning and beginning a whole new journey in your life. As that day approaches, I’m thinking about the letter I wrote you on February 5, 2009, as we were about to head off to the courthouse to make you an official member of our family. My heart was so full then and it’s full now.

In 2009 I cried tears of joy as your dad and I swore before a judge to care for you to the best of our ability. I brought you home and snuggled with you and celebrated you. I was in awe of how God brought you to us and made you a miraculous part of our family.


This week I again cry tears of joy and disbelief. Today I am in awe of the incredible boy that you are and the privilege it is to be your mom. You are going to get on a bus, walk through those school doors and become your own little independent person.  


You are moments away from losing your first tooth. You are days away from starting Kindergarten. You are weeks away from turning 6. These are big things and busy days and it’s all going by so fast. Too fast for this mama’s heart.


I don’t want to forget these moments. I want to treasure the little person you are Samuel and the big steps you are taking. Huge steps. I’m praying for you dear son, for God to guide you during your days, for the desire to choose wisely, for the courage to become all that God created you to be, for good work habits, a love for learning, a kind spirit, a courageous attitude and a compassionate heart. Of course I want you to learn and receive an education, but even more I want your character to reflect your Creator. My prayers are endless. My love is constant little man.

I worry about silly things like whether or not you’ll remember to wash your hands after using the bathroom and if you’ll get too hungry before lunch and will you be sure to notice the kid who is alone and be brave enough to introduce yourself?


We’re sending you off with hugs and prayers and tears of gratitude to God. We’re anticipating a great year, in a fantastic school, with a new community of people to teach you and grow you and challenge you. I feel like we made the right decision about your school and that feels really good. I’m taking comfort in that and trusting that God is opening up the right doors for our family in this season.


Lydia’s going to miss having you around all day to tickle her and hold her and make her laugh. Lauren’s going to miss her playmate. You’ve always been together you two. Since you were 11 months old. But Kindergarten is just for you. Lauren will stay back, watching and waiting for her turn next year. She’s your very best friend Samuel (whether you realize that or not) and she’s excited for you too.

Every day when you get home your sisters will be there to greet you. And mom and dad will pester you with questions about your day and your classmates and recess and your favorite subject.


Here we go. It’s time little man. The big yellow bus is waiting for you and a whole new world of adventure welcomes you.
 

Love you,
Mom









Sunday, July 27, 2014

3-months post diagnosis



Written July 22, 2014:

Today marks three months since we learned of Ryan’s diagnosis. In many ways it feels like a lifetime. So much has happened in three months and nothing has been left untouched by MS.

I read these words by Eleanor Roosevelt recently:

“You have to accept whatever comes
and the only important thing
is that you meet it with courage
and with the best you have to give.”
—Eleanor Roosevelt

I think there is a lot of wisdom and truth in her words, but I would also add grace. Accept what comes and meet it with courage, grace and with the best you have to give.

That's what I'm trying to do these days friends. I'm nowhere near accepting or embracing Ryan's diagnosis, but I'm working to meet each day with courage and offering my best. Sometimes my best isn't much. Some days my best means just surviving until bedtime.

But getting out of bed each morning requires courage and strength. Walking through our days with an ever-evolving 'new normal' requires the utmost courage and grace.

There is not one piece of our life that has been left untouched by MS and I am reminded of that daily, sometimes hourly.


When I go to grab light bulbs or extra batteries or Kleenexes, I see medical supplies in the hall closet.

The bathroom cupboard also contains medical supplies.

Bottles of vitamins and supplements line the hall closet shelf. Ryan has a large pill container in the kitchen to remind him to take pills every morning and evening.

My fridge has a little blue box with Copaxone-filled syringes.

I open the mail and there's information from the drug company inviting us to a dinner or lunch on an MS-related topic or paperwork from the disability lawyer that needs to be filled out and returned.

The answering machine has a message from the home health nurse checking in to see how Ryan's injections are going or UPS is asking if we received the delivery of supplies they sent last week. In ONE day Fed Ex dropped off two deliveries and UPS left us a box. Ryan thought for sure our neighbors were going to think we were running an illegal operation out of our home.

Our finances are a constant reminder that we're trying to live on one income now…my income. The burden and responsibility of being the sole provider for our family will take me months, if not years, to accept. I’m slowly working to accept that it will always be necessary for me to provide for our family.

I open my email and the MS Society has sent me something.

Our fridge is filled with an abundance of fresh veggies...things like kale and spinach and chard and broccoli and cabbage and onions and bell peppers. These are good for the brain and body and help Ryan get all the nutrients he needs.

Instead of enjoying some light summer reading, my nightstand is piled high with books like The MS Recovery Diet, The Wahls Protocol and Managing Multiple Sclerosis Naturally.

I don't have a choice but to accept Ryan’s diagnosis. And I will. Eventually. But I'm not there yet. I'm still grieving. I'm angry. Some days I am terrified or extremely sad or just really really tired.

And that's why Eleanor's words ring true to me.

Courage: Just getting out of bed each day takes courage when your world has been turned upside down. I know one day it will be our normal and it won't all feel so hard and overwhelming and like so much change in such a short time. And it won't require so much damn courage to face the day.

My best: With time it will be easier to give my best. Especially to the kids. I don't want them to get leftovers. Some days there isn't much left after working all day and constantly thinking about paperwork and referrals and the upcoming doc appt. So the goal becomes to just make it through the day. But I’m trying to give my best…fight through the fatigue and the fear and ask God to help me give my best to my family.

Grace: And that's where grace comes in. I need it. I need to offer it. I'm receiving it. I'm believing that the God I serve has abundant grace he is pouring out on me daily. As I receive his grace, I'm offering it to my loved ones as we walk this path together. He doesn’t offer grace for tomorrow, just for today. So I'm learning to reach out and accept it. Grace to let go of what I am not able to do any longer, grace to accept what is and grace to trust that He’s already got tomorrow in the palm of His hand.

A New Normal?
People ask if we’re beginning to get into 'a new normal.' No. Not yet. A major health diagnosis is like a death in a lot of ways. The death of a dream about what our future would look like. We’re grieving the loss of health and independence and our extreme financial loss and our familiar roles in the home and family. We’re grieving that what we thought was temporary, is permanent. We’re grieving loss of control. Grieving takes time. So no, we’re not into a new normal yet.

I don’t even know what our new normal might look like because it still seems to change every week and with every doctor’s appt.

One thing I have learned in my years of waiting and longing for babies--and through a long season of unemployment--is that grieving is not to be rushed.

Grief comes in waves. In the beginning the grief was hourly. Now it has moved to daily. It still catches me by surprise. Sometimes the grief is like a piercing pain or a slap in the face reminding me that things are different now and will always be different.

Other times the grief is deep and all-encompassing and it takes my breath away. It makes me want to vomit because of what I see or hear or read or know to be true about this disease.

The first three months of life with MS were marked by incredible feelings of being overwhelmed. I am still very overwhelmed some days, and other days I find myself just grieving the loss of Ryan’s health and laying His future (and mine) at God’s feet. It is healthy to grieve so we're going slow.

And we might be here for a really long time.

While I’m grieving, I’m also praying. I pray for my friend K and her newly adopted son. I pray for my friend H and the medical challenges of her children with special needs. I pray for my sister-in-law as she battles her own life-changing health diagnosis. I pray for my friend J as she seeks medical help for her long, exhausting struggle to be pain-free.

In all honestly, I pray less often for Ryan. I pray about specific doctor's appts, but praying about our future and his health is deeply painful right now. We have dozens of people praying for our family so I trust they are petitioning the Lord on our behalf and I rely on their prayers to uphold us.


Joni Erikson Tada says: “The deeper the pain, the tighter the embrace.”


Instead of praying, most often I just cry out to the Lord in my pain and He holds me. These kinds of prayers don’t even need words. I know the Lord is grieving with us. He is grieving for this broken world and the heartache and pain and loss we're experiencing.

He doesn’t give me answers or explanations.

He just holds me.

And that’s enough for now.


 

Monday, June 2, 2014

For When You Just Can't Breathe


Last week I emailed a couple friends and asked them to pray: “It feels like I am drowning and can’t catch my breath.”

It had been a hard night with little sleep and I felt the heaviest weight on my chest.

You see we’ve walked a lot of roads and journeyed through some foreign territory before, but never a chronic illness.

This is all new to me.


Not only are we dealing with MS, a major medical diagnosis in and of itself, but we're also facing other diagnoses as we’ve met with more specialists. Each additional diagnosis feels like another round of waves trying to sink me.


And each one leaves me struggling to breathe.

It happens most frequently at night. The day is done, and it’s in the calm and the quiet that I can begin processing the latest events.


Because here’s the thing: when you get tough news and you have small children in your care you don’t  just get to sit down and cry and grieve and mourn and be mad and ask questions and process.

We got the call from the doc that his initial observation of the MRI was MS. We talked for 10 minutes. We called Ryan’s parents. His mom and I cried.


Then someone needed a snack. And a diaper needed to be changed. And a book needed to be read.  And dinner needed to be made. And baths and bedtime and all that normal life stuff still had to happen.


Even though it feels like your world is stopping, it’s not. Work. Meals. Kids. House. Laundry. Errands.


How and where and when does one fit in the time to process a major medical diagnosis? A life-changing degenerative disease for which there is no cure?


At night. In the dark. My mind wanders and worries and thinks about the day and tomorrow and the future. I go over what appts we just went to, what appts are coming up and what will happen if? And sometimes that wandering and processing and thinking and grieving leads me to a place where I Just. Can’t. Breathe.


The waves are crashing in and the water feels too deep and the weight of the diagnosis feels so heavy.


I received a CD recently of Laura Story’s latest album: God of Every Story. The last song is titled "He Will Not Let Go."

And she sings: There may be days, when I cannot breathe

Laura knows. Early in her marriage her husband was diagnosed with a brain tumor. She knows firsthand what it’s like to not be able to breathe. She knows what it feels like when the weight of the diagnosis wears heavy. And she's certainly lain awake at night battling the midnight demons because she sings:

When grief has paralyzed my heart
His grip holds even tighter than the dark


That’s it. The grief, the pain, the worry…it paralyzes my heart and makes it hard to breathe.


But there is comfort and peace in the truth of the next line:


His grip holds even tighter than the dark

Even through the darkest night and the biggest waves and the deepest pain He holds me tight. He helps me breathe. And He does not ever let me go.


It may take time, on this journey slow
What lies ahead, I'm not sure I know
But the hand that holds this flailing soul
He will not let go

There may be days, when I cannot breathe
There may be scars, that will stay with me
But the deepest stains, they will be washed clean
And He will not let go

When all around my soul gives way
He then is all my hope and stay
When grief has paralyzed my heart
His grip holds even tighter than the dark

I've heard it soft, this too shall pass
The joy will come, that the hurt won't last
So I will trust that within His grasp
I am not alone
For He will not let go

Saturday, May 10, 2014

God, please heal the owies on daddy's brain

My 4-year-old daughter’s favorite time of day is when we read books and snuggle together. On this particular night, after the books were read and we had snuggled for some time, I asked her to pray. The day had been one long prayer-filled day of anxiety and unanswered questions, and I was beyond exhausted. And there it was. The most precious of all prayers passed through her lips and straight to my heart: 

“God, please heal the owies on daddy’s brain. Heal him God. We love him. We love him because he’s our dad. And you are the only one who can heal.”

She hasn’t yet learned to ask tentatively and she doesn’t demand. She prays in belief asking the God of Heaven to heal her daddy. She prays with child-like faith. She doesn’t worry about praying the right words. She proclaims God as her healer and asks Him to honor her request.  

“God, please heal the owies on daddy’s brain."

My children’s daddy, my husband of 13 years, a lover of politics and coffee, recently received a multiple sclerosis (MS) diagnosis. 


It’s rocking our world. 

It’s changing our life, our family, our home, our future.

This diagnosis comes with tears…heartache…grief…sadness.
 

We are not unfamiliar with these emotions. We’ve faced them before. We’ve experienced miscarriages. We’ve walked the road of infertility. We journeyed through years of unemployment. 

Our hearts will always remember our season of loss and infertility. And now we quietly close the unemployment chapter, locks hands and hearts, and together walk into a future that only God knows.  

“Heal him God. We love him. We love him because he’s our dad.” 

This diagnosis begins a new chapter in our family’s story. A journey to healing and wholeness. We don’t know what this journey will look like. We don’t know if healing and wholeness will be on this side of Heaven. We pray every single day for daddy’s health to be restored. For the medicine to work. For the doctor’s to know how to treat the owies on daddy’s brain and spinal cord. But we know that healing ultimately rests in God’s hands.

“You are the only one who can heal." 


We serve a God of miracles. We serve a God of perfect timing. We serve a God who brings beauty out of ashes.

God, healing is in your hands.


Tuesday, October 29, 2013

I'm from

I am from burnt orange Tupperware and mustard yellow Kitchen Aid mixer and the fragrance of chocolate chip cookies fresh from the oven.

I am from home-with-an-open door and someone always there. Overnight guests, family friends and neighbors always welcomed to the table.
I am from book-reading, notebook-filling, diary and poetry-writing.


I’m from family reunions, dozens of aunts and uncles and too many cousins to count. Visits to grandparents on the farm and to the yellow house in the small town in the southwestern corner of the state.

From hardworking handyman father and homemade-cooking mother. From younger brother and 16 month-older-sister.


I’m from loudness and laughter, prayer before meals and family birthday celebrations.


I’m from Michael W. Smith cassette tapes, footprints in the sand poems, music concerts, spring break trips and “Our God is an Awesome God.”


I’m from small towns followed by life in the city. From warm sloppy joes, green bean casserole, hot dishes and mashed potatoes.


I’m from Sunday services and youth group Wednesdays. From Bible camp in the summer, youth retreats in the winter, and God-seeking moments in the midst of it all.  


I’m from sinful ugliness, hurtful words, tears and tough times. From a broken heart and a sad smile and would someone please take the pain away?

I’m from grace and forgiveness, from commitment despite hardship and messiness.

I'm from a long line of Jesus lovers and Bible believers and truth seekers. I'm from hope in the Everlasting God who brings beatuty from ashes and makes all things new.



-----------------------------------------------

Awhile back I read an I'm From blog post and decided to take a crack at it myself. If you're interested in writing your own I'm From, you can use the following template to get started (if you write your own, please leave a comment and link so I can read it!):
 
Adapted by Levi Romero

Inspired by “Where I’m From” by George Ella Lyon

I am from ________________________ (an everyday item in your home)

from ________________ and _______________ (products or everyday items in your home)

I am from the ___________________________ (description of your home)

_________________________________ (a detail about your home – a smell, taste, or feel)

I am from the____________________ (plant, flower, natural item)

The __________________________ (plant or tree near your home)

whose long gone limbs I remember as if they were my own.

I’m from _______________ and ________________ (a family tradition and family trait)

from ______________and ______________________ (family members)

I’m from _________________and _________________ (family habits)

and from_____________________. (family habit)

I’m from _______________ and _______________ (things you were told as a child)

and ____________________________________ (a song or saying you learned as a child)

I’m from_________________________ (a family tradition)

I’m from ____________ (place of birth) and ___________ (family ancestry, nationality or

place)

_______________and _________________ (family foods)

From ___________________________________ (a story about a family member)

___________________________ (detail about the story or person)

_____________________________ (description of family momentos, pictures or treasures.)

_________________________ (location of momentos – under my bed, on the wall, in my

heart)

______________________________________________ (more description if needed)

_______________________________________________

By