Tuesday, February 17, 2015

Adam health update

"As your prime minister, I urge you with caution"-William Pitt

" and as my friend?"-William Wilberforce

"To hell with caution..."-William Pitt
If you don't know the story of Wilberforce and Pitt...stop now and find out. Wilberforce was strategic in getting the British parliament to end British involvement in the slave trade. 

Pitt was a best friend of his who happened to be prime minister at one point in their friendship.

This is one of my favorite exchanges between Wilberforce and Pitt.

Raja and I had similar conversations before we adopted Adam. The stories of men like this stirred our hearts to respond and obey to what Abba was asking of us. Did we seek counsel? Were we led by the Spirit? Was Scripture our foundation and our Lamp and Light? 
Yes. Yes. Yes.
But was it still scary and did it seem to go against all caution? 
Yes. 
But the Spirit said go. 
When Jesus says go, to hell with caution. 
I wanted to take a few minutes to update you all on how Adam is doing, health wise. We have been back nearly 5 months now and are finally getting into a routine and figuring out healthcare here. Adam has been seen by multiple specialists here in Jacksonville, Florida (including ophthalmology, oral/maxillofacial specialists, general surgery, nutrition). We have found a great pediatrician who cares for him so well. It has been a full few months in many ways and we are thankful to be getting good care for Adam.
                                 


It is funny, I think we expected to get to the US and that his health would be perfect. But, we have actually all been sick a lot this winter. Adam has been sick at least once a month and the rest of us have been more sick than ever before. That has been discouraging in many ways, but the past few weeks have been great for Adam and he is growing more every day. He can get across a room as fast as Elliot, if he is determined, and has figured out how to hop on his two legs rather than only crawl on all fours. He is vocal and loves to laugh. He is responding more and more to Elliot (still learning to get along with Rohan).

He is sleeping better which is SO exciting. We have stopped letting him nap during the day which usually gets him to sleep closer to 7 at night and he then sleeps the whole night. That is a huge change, as he used to nap for hours in the afternoon and then would be up until 11 or 12 singing and squealing from bed. Oh yes...it is true. But since we have stopped naps he is doing much better with being on the same routine as his brothers.

Another major development is that he is eating more by mouth and ENJOYING it. It all started a few weeks ago when my sister was over for a movie. She made Raja and I root beer floats and Raja just thought to give Adam a taste. He ate FORTY EIGHT bites! That is quite remarkable for Adam as he used to only eat 4-5 bites at a time before getting beyond frustrated and hitting all the food away. He had two entire root beer floats and has been tasting more foods here and there since then. 

Thank you guys for your prayers for Adam. Our Abba God continues to work in unseen and unfathomable ways to sustain and even prosper this little life that once seemed fragile and without hope. But there is always hope, that is what I am learning day by day with these littles.








Sunday, February 8, 2015

Handprints and Comfort.


This is, perhaps, one of my very favorite pictures. It captures my life in this season so well. There are holes in pants, stitched just for Adam, that need to be patched. Those holes speak of his ability to crawl...which surpasses the understanding of all who meet him for the first time. Those vibrant colors  are toys, mismatched and unorganized, flowing out of the bucket. They speak of the fun had by all the littles in this mismatched home. There are little muscles, flexed and attentive to some toy hidden beneath his little round head, again a miracle of many sorts. And then there is a hand print...like a cherry on top of all the goodness therein. Just when the description of all that is beneath reaches my definition of glory...a little, middle, brother runs thru the room, past the mess, and pastes his hand on top. And there are lines from the grooves of his little hand print. Those grooves that are only Elliots. Those are grooves engraved in Heaven by a Creator God who saw fit to create this wild man. 


He is the same Creator God who placed that wild man into my, once firm, belly and saw fit to stretch me out, wild and free, to grow a man. And that Creator God is still growing and changing that Elliot Justice and making him into a brave boy with a courageous heart and lots of mischief in between.



Our Abba God...that divine Creator...He had placed Adam in our family, by His sovereign hand, just a year and 4 days before. 

But God. 


But God wanted to create a brotherhood wrapped in grace. A brotherhood that has challenges but that pulsed of divine Love that overcomes.  A Love that overcomes what we think is an "ideal childhood" for our children. A Love that overcomes our misconceptions that we need to preserve our children from pain and inconveniences. 

A Love that disturbs my plans of what a life FOR Him looks like and creates a life that LOOKS LIKE HIM.


Although Elliot walked at 9 months old, he still likes to get down and crawl with Adam. Although Elliot has his own bike he gets off and comes back to help teach Adam how to ring his bicycle bell. Although Elliot sees lots of "normal eyes" everyday...he told me the other day (his first time using the word 'beautiful') that "Adams eyes buuuuteeful". I remember fearing at times how their relationship would be. 


And I think a lot of us fear adoption bc we don't want to hurt the children born biologically into our family. At least I have heard that a lot. But when Abba gives us eyes to see that BOTH are our children whether thru birth or adoption...it changes everything.


And when we invite our kids into hard painful places (like other children's pain whether emotional scars or a disability or whatever it my be) we allow our children to see Jesus make all things new. Our children will see pain and hard places eventually because this world is hard and painful. So, why not be parents who can teach them how to walk into those hard places and trust that Jesus is a God who is not unaquainted with hard. Goodness gracious, He overcame all the hard we could ever imagine. He defeated it and then came to dwell in us, in order to help us overcome hard.  Why not be parents who display this Gospel reality to our little ones? Why not be parents that lead our children to know, first hand, that our God is not distressed or unaccustomed to difficulty.  Why not walk with them to places of brokenness, so that can see the One who makes all things new? Because, they will see broken in their lives and they need to know that He is in those places. If we lead them and tell them NOW, they will remember THEN. Why not be parents that help our children sift thru hard questions, because if we don't, someone else will.

  Elliot sees Adam as his big brother and that is normal to him. What a gift Adams adoption into our family has been for him...and to imagine all the beauty to come! 

Dear ones, don't be afraid of hard places for yourselves or your children. Let us trust that Jesus will meet us there and walk boldly into it. 

For our family it looks like adoption, with a dose of disability. However, it will look so different for all of us, for we are all called to different things as His body. But, in Him, we are called and equipped to walk it out. 

For our God is not concerned for our comfort for HE IS OUR COMFORT.  He turns comfort upside down and brings down His Kingdom and gives us Himself as the only lasting Comfort.

 And, often times, I believe the journey He calls us to is far from predictable and convenient...and we may even think we have misunderstood and He has forgotten us in our pain...but then we hear His voice calling and we are reminded that it is Him behind us and before us. 

Entrust your children, dear ones, to the only Comfort that will endure through all the ages. 

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 son...my perspective changes.
When I see it that way, I never want out.