Monday, December 8, 2014

Ostomy bags on a Sunday Morning

I once wrote here, regarding my being grafted in to the community of families of children with disabilities or special needs that "now I realize the glory within (this community) and I never want out"

But sometimes, I do.
Sometimes, I do want out of the inconveniences and the research, medical bills, and uncertainty.
I want out of the isolated feeling that can easily envelope you in its vastness and make you feel so small and everything out there feel so foreign.
I want out of the cancelled plans and the pity people feel because of it.
I want out of mornings like yesterday when, for the first time in over a year, we made it to church early! The whole family, packed in tight with a proper baby bag packed with all anticipated needs of these three little ones. For the first Sunday since arriving in the states, one wild man did not fall into hysterics upon being dropped off at the nursery.

All seemed well until Adam threw a fit.
Adam, who usually dives out of my arms to play in the nursery with all thew new toys.
Adam, who has not needed his trach suctioned in nearly 3 weeks because he hardly has any secretions, and when he does, he coughs it out on his own.
Adam, who has been sleeping thru the night.
The same child who when friends come hang out with our family leave saying "um, Jess, Adam is your EASIEST child...I thought it would be opposite...but he is totally your easiest!". Yes, that Adam. He threw a tantrum, we lifted him up, and there it was...the oh too familiar aroma of a burst ostomy bag.

That means a major rewind on the morning. That means one of us has to go back home with our Adam boy, do another bath, redress him, and most likely miss the service.

That one was me yesterday.

I drove this boy home, bathed him up, and pulled back into church just as the service was ending.
It was frustrating and I did not enjoy it. 

But then I scroll through my phone and I see this:

I remember this King whose birth we are preparing to remember.
This King who chose to gather all His glory into an embryonic mass of life and tuck Himself away in the uterus of an unmarried virgin and wait.
He chose to leave the angelic anthems of Heaven and walk out of those cathedral doors into the near anarchy on earth.


It was not tidy and it was not void of foul smells and inconveniences.
He grew into a boy who trained under the guidance of a humble carpenter. His calloused hands felt the grooves of lumber being smoothed out and his countenance was never too pious for grueling labor.


He met the people who He came to save in the messes of their lives and walked with them.
It was most of the time not easy and it required all of Him, and He knew it.
Yet, still He came.

When I remember that He came into my chaos and my mess and He CONTINUES to come into my mess and my chaos.
A burst ostomy bag seems meaningless.
Because it is not just in the cathedrals and the hour long services that we meet eternal Truth.
For me, yesterday, it was outside the cathedral in the foul smells of a excrement and in caring for a son who cannot express his frustration with it.
How good to know that I have a Savior who is not unacquainted with sorrow and Whose birth was in the midst of the manure and chaos and far from Cathedral order.

From now on, when I want out of these so called inconveniences and only want the convenient celebratory moments of raising this miracle of a child, I remember Him and I look to His Life lived here among us.
I see how His whole existence on this earthly terrain could have been seen as an inconvenience from His Heavenly glory.
I see how much muck He had to walk and live and die through in order to bring us to Glory.
He gives me eyes to see that it is all a miracle, the convenient days and the inconvenient ones.
And it is all Glory because it is all a part of how He brings life and meaning into a dying world, turning it all upside down so that we can behold Him restoring broken things in the ways we least expect it.
When I see Him restoring broken things in me and my perspective changes.
When I see it that way, I never want out. 

Friday, December 5, 2014

Three Years since THAT Thanksgiving

I remember THAT Thanksgiving quite vividly. Perhaps some of you, who have been on this journey since the beginning, can too? I will recount a bit of it for you:

September 18, 2011 Adam was born.

<insert 2 months of foster parent status-adoption finalized-diagnosis made-prognosis of 2 months given-doctors in US commit to having services that could help Adam-book tickets to US>

First week(ish) November 2011 we arrived in Florida with Adam. I believe I had lost 15 pounds and had a glAWrious massive cold sore on my chin. Stress? What? No..... 

We leave the morning after we arrive with Adam to drive to Chapel Hill, NC with my mom. We stay with my Aunt Cathy and Uncle Pat who extend such hospitality on such short notice

Mid November (ish) We meet with doctors for 2 days who give many suggestions/ideas/etc. Eye doctors say that eyelids can be created (Adam was born without them if you didn't know) but that they need to be done ASAP or he would be at major risk for his vision.

Then Adam is diagnosed with a UTI that develops into septicemia and he is admitted with a major infection.

We find out during this hospital admission that we need to raise $100,000 before any surgeries can be provided.

Adam is discharged days before Thanksgiving weekend. And we have a week to raise $100,000

He has a central line in and we have been trained in how to administer his IV antibiotics. We decide to surprise my mom and drive down to GA (with a recently discharged 3 month old with a central line) for Thanksgiving weekend. The weekend is full of questions like "will there be surgery?" We were full of answers like "I dont know...maybe?". I journaled a lot of thoughts, especially letters to Adam, during that weekend. I scribed out some prayers from the trenches those weekends. My own version of letters from war, really.

I had realized that Adam, and us, are dying. We are eternal beings in a temporal world. We are all fading. Adam and us included. I could not base my existence nor my peace on this money being raised or Adam's vision being perfect or Adam even staying alive. I simply could not because none of those things are promised. 

I had to base my existence on the One who is the same YESTERDAY TODAY and TOMORROW.

I had to believe that He was good even if the money did not come in and Adam remained without eyelids.

Remember Shadrach, Meshach, and Abendago? Those men alongside Daniel in that Truth Story of the Old Testament? They had been told to bow down to King Nebuchadnezzar OR ELSE. Or else they would burn. They resisted bowing to this earthly King, believing that there is only One who deserves our knees bent, heads bowed. 

Their response? They told the king that they would not bow, they would walk into the fire, and their God would save them. They had complete assurance.


They were adamant in their assurance.

Adamant assurance.

They were adamant that their God deserved complete trust, despite the outcome. 

That was surely hard for me that weekend. But our Abba God brought us to that point. And when we did not have the faith, He gifted it to us. Because, we never can muster it up on our own. All we can do is receive it from Him. So we received it. And we believed it would come. And we trusted that if it did not, that was ok and He would have designed it as so.

But it came. Oh my goodness it came. Perhaps you remember THIS POST?

We stood on Holy Ground that night after Thanksgiving weekend as we received the call that the money was in and we could do surgeries. We lost our breath and He won the battle of our hearts, again.

So this past week, as we gathered with family along the Suwannee River, I remembered that Thanksgiving only 3 years ago (that honestly seems like 10 years ago). 

THIS made my thanksgiving.
I remembered my grandparents and aunts & uncles gathering around and receiving Adam as their own. 

This picture deserves its own blog. So that will come later;)
I remember them, and so many others, giving sacrificially and believing God would make a miracle with our bread crumbs and fish.

The boys all had matching sweaters from their sweet aunt and uncle in Ireland!
I remembered and it was good.

We laughed and we swang high and we celebrated the good things our God has done.

My boys and I walked down to the river as Raja spoke a prayer of Thanksgiving for all that our God has done.

My sweet cousin Molly and the boys playing Checkers with great grandma (I need to find the picture where she is not cut out!)

Taste and see that He is good dear ones.

Ro being a goof. Adam chillin on his back. The funny thing is...he used to HATE being on his back, simply because he could not turn back over and get around. But now he is able to flip over from his back. So his favorite thing is reclining like this;)

Elliot insisted on swinging with Adam. It is pretty awesome how Elliot (who used to be terrified of swinging high) has been encouraged to swing higher by watching Adam. And now if Adam is swinging Elliot feels completely alright;)

"smile elliot"
THIS MAN. I am humbled to call him mine.

Rohan Jude.

WHile the boys napped... 

Monday, November 24, 2014

On Writing and Bicycles

So it seems that nearly 6 weeks have passed since we moved home, from our home in India. To be honest, it feels like a year in many ways considering all that has been packed into these 6 weeks. My parents were gracious enough to host us for the first 3 weeks as we navigated rental homes and options of places for our family to stay during these 3 months before we make our final move to Pennsylvania. The jet lag was not nearly as debilitating as it has been in the past (I guess our boys are figuring out this pilgrim journey a bit early and are adapting to our changing seasons with more grace each year that passes).

Those 6 weeks were full of so much.

There was a constant seeping of hot water over pikes place coffee grounds as my mom made her smooth, rich blend of goodness for us all throughout the day.

There was dirt under nails and a patio flooded with water from a running hose (a phenomenon to Elliot who had been used to us giving him 1 bucket a day for the sake of saving the water in India).

There were movie nights with my dad as we caught up on cinematic wonders we have missed.

The bee hive business that my little brother and sister run beautifully provided entertainment for my wild man Elliot.

Elliot and his dad bonded over working in the garden and implementing Raja's banana tree expertise.

The old suburban became a sandbox, of sorts, as our frequent beach visits took our minds off of the chaos and onto the beauty that our God spoke into existence...reminding us that if violent currents, crashing waves, and millions of grains of sand can be woven into stunning wonder that our lives can be woven into beauty and order too. Chaos is and will be beauty.


For "it is often in the chaos and confusion of our lives that the Gospel is most clearly heard" as Tim Keller said.

There were also days of dark, baggy eyes full of questions as Raja and I wondered where we should live, how long the 270,000 mile car would last, if Adam would tolerate the winter well...and SO many more questions.

But God has proved faithful and He has provided in abundance, as always. We have a house to live in, graciously offered from friends I have known since middle school. These wood floors echo the reality of 3 little men that Abba God has entrusted in our hands.  The table is decorated with food each evening, reminding us that He who cares for the birds of the air cares for us as well. Our daily lives seem to sing an anthem of faithfulness and yet I seem to be tone deaf to the melody of His Truths. But He is steadying me and He is ever so patient with me as He sings these Truths over me again and again.

He whispers to me to write, so I can remember.
Write out the uncertainties and the needs...while I am still in the trenches.
-Do not just write after the storm passes.
-Write in the midst of the storms (so I can remember the sweat and the blood that seem to stain the pages of certain seasons of life)
-List out all that I know that we need...a list that seems insurmountable...list it out like George Mueller did...and then make a note next to it when God provides.

Because He will.
And because our weak minds tend to forget.
God amnesia.
We can remember our paycheck amounts, our job titles, our degree names for years. We, or rather I, love to spat those off as if they offer some solutions to the daily questions that life brings up.
But when it comes to the miracle that is Him...we are so quick to forget His Name. When fears of the future arise, we want to run to how we can manage the problem or solve the issue.

 We are so quick to rely on ourselves and what we can offer yet so quick to forget how He owns the cattle of a thousand hills, how He speaks Light into existence, and how He cares for each and every hair on our head.

He told me to write. But still I feared and I questioned so many things. I was too tired and too busy and my mind was just too full. I felt like I needed PTSD counseling in a way as I attempted to process what these past 3...5 years have held. So I held so many thoughts in.

But He continued to pursue and He has won.
A best friend sent me this journal last week with a note "keep writing and keep riding bicycles". She knows my heart and He used her to call after me and my ransacked heart and constipated mind (let's be honest...there is really no other word choice)

So I am going to ride and I am going to write...while in the trenches. I am not just going to wait until I am on the other side and look back at the rainbow of promise as Noah saw.
I am going to write in the midst of the flooding downpour of the midst of the manure and the screeching birds packed in around me... I am going to write while we teeter back and forth in this temporary dwelling with raging storms around us.
Because I know my God and I know He is good.

He will be good 1 year from now when we are in a home for 5 years.
And He is good today in the midst of all that is temporary.

Because His goodness is not dependent on my understanding nor comfort.
His goodness is explicit and it is known.
So let us believe that He is good and His ways are good.


Many of you have asked how to pray for us and many of you have asked how to give.
We are meeting with a CPA in a few weeks to figure out a way to receive financial donations towards Adam's medical needs. I will update you all after that meeting.

How can you pray? I will just specify Adam prayer needs right now.
-The winter can be brutal on a boy with a partially formed nose, a tracheostomy, and so many undiagnosed issues. We have already fought some sickness so far and it has been rough. Can you pray for his body to be sustained and upheld? Pray against infection and disease. Pray for wisdom for us in how to deal with challenges sickness may bring.
-We are trying to figure out insurance options for Adam. We are navigating confusing and unfamiliar waters. Pray that we can figure it all out and find the best coverage for him soon.
- Pray as I (Jessica) travel up to Philly in a few weeks to find housing options for our family. We will be living in a suburb outside Philly for at least 5 years and want to find a good housing option for that stretch of time. Pray I can find something suitable for Adam and his needs (ie: 1 story so he can get around easily) and for all the financial needs that arise when looking for housing options for a family with kids.

I will share more prayer needs next time.
Until then, much love friends.
Much love and thanksgiving;)