Wednesday September 20th after dinner- Naomi had been in the hospital for three days. We'd already been informed by a surgeon that she has a congenital defect called malrotation of the intestines which can lead to serious- sometimes fatal- complications and will require surgery to correct. Now we hear from her GI doctor that she also has Crohn's Disease- a chronic autoimmune disease causing inflammation and ulceration in her small intestine. We had come to the ER on Sunday with the expectation that we would rule out appedicitis, but we would leave four days later with a pile of papers, a restricted diet plan, and many decisions and appointments to be made. She would need to have a bone scan, an in-depth eye exam, blood work, repeated vaccinations, immunosuppresant drug treatments, along with the abdominal surgery .
That Wednesday night my brain was spinning. I was researching Crohn's, trying to learn more about what all it could entail, and heartbroken and terrified by what I read.
Not our dear Naomi. I don't want this for her.
I finally had to put down my phone and stop reading, but when morning came (and all too early at that), I found myself ovewhelmed with the questions not only of what we needed to do and how to best help Naomi now, but also with all of the "what ifs" that come with a lifelong disease.
What will her life look like in the future? Will it look like the stories I'm reading?
How do we help her understand all that goes along with this?
How do we help her live her life as fully as possible?
How do we teach her about this disease without overwhelming her more?
What will she eat? How will she stay healthy?
What do we need to watch for?
What now? What next? Which treatment?
There is no way to know how Crohn's will progress, what form it may take for her, and too many of the possibilities are hard to even consider. Yet that's where I found myself in the early morning hours of Thursday, and as I wondered how I would pull myself out of the spiraling thoughts of fear and worry, the name of a dear woman came to mind. Someone who had shared the night before that she had a similar journey to Naomi.
Send her a note. Tell her your struggles and ask her for help.
I had my rationale for why I was reaching out to her and not the others I knew who would have gladly been there to support me, but ultimately I am certain God directed me to her. She would encourage me to begin by looking to God, focusing on who He is, and spending some time just praising Him.
And so as I lay on the couch in Naomi's hospital room waiting for the first day of this new autoimmune journey to begin, I did just that.
I lift my eyes and see
I need not be afraid
All my help comes from the Lord
Who the earth and sky has made
He will keep you from all evils
Behind you and before
He will sustain you, through this journey
From now and evermore
The Lord will never sleep
My steps He has ordained
For the One who holds the night
Is the Sovereign of my days
He will keep you from all evils
Behind you and before
He will sustain you, through this journey
From now and evermore
(He Will Keep You (Psalm 121)- Sovereign Grace Music)
One song would lead to the next.
Be not dismayed, fear not the darkness
Jesus is here, He walks beside us
Gracious is He, through all our weakness
Forever faithful, forever good
Emmanuel, Emmanuel
God with us, living inside
Emmanuel
Lift up our eyes, to the Maker of Heaven
He is our help, forever present
Faithful is He, He is our constant
Forever faithful, forever good
Emmanuel, Emmanuel
God with us, living inside
Emmanuel
No matter what, what storm may come
Our God is here, Our God is here
When fear gives in, when darkness runs
Our God is here, Our God is here
(God With Us- Terrian)
Then one scripture lead to the next, and I found the uncertainty and fear slip away as I looked up and focused my eyes on the One who holds Naomi's health, future, and life in His hands. The One who created her (mumbo jumbo internal spaghetti and all!) and loves her more than either Drew or I.
Here we are three months later, and I look back and am amazed. Emmanuel- God With Us- has been so evident. It's been busy. Medicine began to help Naomi feel pysically better a few weeks after she left the hospital. She seems to have accepted that this will be a part of her life and already she has a support group growing around her. She has had to face her fear of needles more in the last three months than possibly in all her years before, and we celebrated with her the first time she gave herself her biweekly injection. She has more strength and courage than she realizes, and we are thankful for all that helped prepare her for these days- even the hard ones.
We're learning a lot. We're asking questions and getting answers when possible. There is still so much uncertainty about what it may mean for Naomi in the long run, and no one on earth knows the answer to those questions, but we are not held captive to them. We move forward with hope. We trust when we cannot know, and we turn our eyes to Him.
Yesterday, we sang Raise a Hallelujah by Bethel Music during church service, and I knew that was exactly what we needed to do. It is what got me through those first hard hours and days. It is what stilled and calmed the fear and worry, and it is what has brought us peace as we wait on surgery and watch how all of this unfolds in Naomi's life.
I raise a hallelujah, with everything inside of me
I raise a hallelujah, I will watch the darkness flee
I raise a hallelujah, in the middle of the mystery
I raise a hallelujah, fear you lost your hold on me!
I'm gonna sing, in the middle of the storm
Louder and louder, you're gonna hear my praises roar
Up from the ashes, hope will arise
Death is defeated, the king is alive!
Louder and louder, may he and all who meet us hear His praises roar! So that's exactly what I'm going to do- here and now. Let His praises roar!
Praise HIM- for the persistent voice that said something isn't right- even though she didn't exhibit the more severe symptoms!
Praise HIM- for an ultrasound and CT scan that would expose the genetic defect without it being a health crisis!
Praise HIM- for friends who stepped in to watch Noelle for the afternoon- which turned into overnight and well into the next day!
Praise HIM- that Drew was able to return from a work trip almost immediately- catching an early flight and being with us in less than 24 hours!
Praise HIM- for a nurse that helped us get approval for Noelle to join us in Naomi's room!
Praise HIM- for knowledgeable and compassionate medical personnel- who guided us, calmed us, and listened to us all while addressing Naomi's physical needs!
Praise HIM for meals brought to the hospital, visits from church family, and help in getting Noelle to and from school in the midst of the medical tests for Naomi!
Praise HIM for placing us well in advance in the place we needed to be, so we would have the right support at just the right time!
Praise HIM for Naomi's resilience and strength, her courage and determination!
Praise HIM for Naomi's health!
Praise HIM for creating her and knowing her innermost being!
Praise HIM for being a shield before us, our rearguard, and the peace that surrounds us!
Praise HIM for His goodness and His promise that there is more to come!
Praise HIM for joining with us in the pain and sorrow of this earth, knowing it intimately and personally!
Praise HIM for He is Emmanuel- God with us!
.heic)
