Meeting Saliman (Part 1)

This past September I had the chance to travel to New York.  My main purpose in going was to see my brother who is a senior at West Point. Yea, he is a big deal;) He is pretty much unstoppable and full of intellect, valor, and strength and has overcome every obstacle that has come his way. He is surely an inspiration to me. Since I will most likely not be at his graduation this spring, I wanted to find a chance to get a glimpse of his life at school, see the historical monument that West Point is, and just have some quality time with him. Abba is good and we were able to work out all the details and up I went. We had a grand time together, saw a lot of sites, toured the school, ate tasty food, and I had a lot of time to rest and recover from the previous weeks in the hospital with Adam. It was a lovely time.

  

It was heavenly, really.

We got to spend 2 hours with the one other boy in Americathat has Adam’s condition.

You see, Bartsocas Papas is a rare condition.

From what I know and have heard and studied, there are only 26 cases documented in the world.

Most of the medical professionals that we have seen have never seen a case of it.

At the most, they have seen 1 other.

So it is a bit overwhelming at times.

In the beginning of Adam’s story, the doctors that diagnosed him all wanted pictures to put in databases because they seemed so surprised to see a case of it.

We were given tough prognoses and told he would not live 2 months.

But on the same day we were told all of Adam’s internal organs were normal.

So we wrestled with understanding why he would die, yet we did not have any other stories to look to.

We could not look and say “oh but they told THAT family the same thing…and look at him now…”

So we were a bit stuck.

Fast forward about 3 months.

The adoption was over and we were in the US in a waiting room while Adam was in his 3^rd eye surgery.

It had been a bit emergent in nature (“a bit emergent”…you like that?)

We were fighting off grogginess and worry with our friends Dana and Savannah.

Savannahhad been a nurse tech who became a dear friend and has a fierce love for kids with rare syndromes.

She was typing away on the internet and then showed us a picture of a little boy

She said his name was Saliman and he had Bartsocas Papas

He was adopted

And he lived in New York

And he was 10 years old now

We were all intrigued and tried to pull every piece of info we could find

And I started trying to track down his adoptive momma

Found her, I did;)

She is a rare gem and shared a bit of her story

Saliman was born in the Bronxand had a lovely birth family, as did Adam

Like Adam’s family, they were overwhelmed with his condition

So Saliman ended up being adopted by this lovely momma and her husband

She and her husband adopted him after they had already raised her daughter

She praised Saliman and clearly adored him

I thought of her and how courageous she was.

Because she had started her battle more than a decade prior

Internet was not what it is now

She certainly had no blog

She and her husband, faithful, walked this journey quietly and faithfully

And I thought of Saliman and how he did not have an Adam to relate to while he was growing up

He just walked on and endured operations and did his thing.

But we, our family, we are blessed and spoiled indeed.

We have been given infinitely more than we could imagine on this journey.

And now we knew that we were not alone

There was another;)

So now fast forward another 1.5 years.

I am planning my visit to New York to see my brother.

So I give that momma a call again and tell her.

And when I tell her I am going to a little town outside the city to go to West Point.

She exclaims “oh no problem, honey, we are just 15 minutes from there…my mom just retired from working there!”

Really?

“Really, Abba?”

Of all the places in the world, West Point, NYis where Saliman is?

So they drive over and we meet in the West Point cafeteria.

And glory falls on me in that little cafeteria full of military men and us;)

A 13 year old boy stands up on his prosthesis and hugs me

He makes room for me on his bench.

He gives me gifts bags galore.

And opens up scrap books from his infancy

He can hardly keep quiet he is so excited

His gift bag is all sorts of things that have helped him get thru fears in surgeries

He wants to share them all with Adam

He talks about his 7 years with a trach

He talks about learning to walk and talk

He shares about his mouth and all the complications and surgeries there.

Dear ones, I was speechless.

My brother, too.

He was across the table with Saliman’s momma and got to hear all of her story.

It was a sweet moment.

In the middle of a MilitaryAcademy, Abba Father wove together a meeting that I could have only imagined in Glory Land.

If I think I feel alone in this journey as Adam’s mom…

I wonder how on earth Adam is going to feel some day.

When frustrations and limitations and doubts seem endless,

How will my Adam feel?

I hurt for him when I imagine those times.

I think of an excerpt from Tales from the Outposts by Blackwood

It is the telling of the incredible dry heat in Central Africa and the incredible task of trying to communicate the misery of that scalding heat

He says:

“but how describe THIRST and HEAT of torrid lands to those who simply turn the tap near at hand to secure an endless cooling supply? How describe the thirst engendered by effort on foot across miles of stark, shadeless forest, heated by a ball of molten fire, to those who live in temperate, well- watered lands of perpetual verdure? The English language, born in a land of cloudy skies, frequent showers, forest shades, and evergreen fields, with water on every side, lacks, and must lack, terms for precise description of heat, thirst and drought”

Wow.

That is a doozy, huh?

But so true I do believe.

And when I think of my Adam and the battles ahead of him on this road of living with a disability and a rare genetic condition, I think he may wonder the same things.

He may wonder how to describe the struggle to someone born formed physically and who knows no chronic, daily struggle.

Perhaps, he will not.

And perhaps, he will.

But Saliman was surely a gift

And the most precious gift he gave me for Adam that day was a letter.

It was addressed to Adam and what it contains is nearly gold to my heart.

I won’t share all of it here, because it is surely a treasure for Adam to behold in full one day.

But some little treasures within:

“you don’t know me…but we have the same syndrome”

“I just want to tell you that you can do ANYTHING…just try it for yourself”

And then the glory:

“Sometimes, it is hard being me. But, I like being me and my parents love me and they tell me that every day….and I make a lot of people happy and I am sure you do too”

Dear ones, the honest and raw joy from the battle shared here nearly takes my breath away every time I read it.

I am so thankful for this boy and his parents who have walked this road.

I am thankful that a diagnosis that books say is a diagnosis of death, is a boy walking and playing and running and laughing at 13 years old

I am thankful that we can write to this family of the struggles we may have one day in the same way that one from the desert can only speak to another desert dweller of the heat within.

There is such comfort there.

And we have surely been given a gift.

I will always treasure that meeting and I hope with all my heart that one day both boys can meet

I hope that one day Adam can read that letter and comprehend the incredible gift his life is;)