You can read Part 1 here
I decided to do a Part 1 and Part 2 because my heart was divided after meeting him.
Though it was all rooted in joy and thankfulness, there was a sadness too.
It is hard to explain, I guess.
But it is mainly due to the fact that Saliman most likely has a lesser degree of severity to his condition.
Though he has overcome many surgeries and incredible challenges, I think Adam has a greater degree of Bartsocas Papas.
When I say that I mean that Adam’s extent of physical deformity is greater.
I do not want to compare and contrast
I do not want to minimize at all what sweet Saliman has been thru
But it did make me a bit anxious
I thought things like, “will Adam talk like Saliman one day?”
“Will Adam walk on prosthetics like Saliman?”
“Will Adam understand all that Saliman understands?”
The questions overwhelmed me a bit
But, most of all, it shed a bit of light into my heart and mind.
Saliman and his success cannot be my measuring stick for Adam.
It can certainly be perhaps the greatest encouragement from an individual in this world.
But I cannot spend my life thinking…
“Oh, because Saliman can do ________, Adam will too”
And I cannot spend my time telling people,
“Oh do not worry about Adam, a boy named Saliman has his condition and he can do _____________”
Does that make sense?
I do not want to place those expectations on Adam
And I do not want Adam’s life and value to be seen if and when he performs a certain degree of overcoming disability
His life is beautiful simply by his existence
Each breath he breathes is beautiful despite what physical triumphs he may show.
I mean, I love that he can see
I love that he is starting to be vocal
I LOVE that he is alive and well despite having a diagnosis of death
But I do not want to value his life on what he does, rather than WHO HE IS
I feel as though it does not quite make sense.
But my friend over at the blog, “What Do You Do Dear” wrote an especially poignant piece about her son, Simeon, who has Spina Bifida.
She titled it “Standing is Stupid”
You can read it HERE
I loved it.
And it encouraged me too.
I cannot hold on to
“oh, well there is 1 boy in New York with Bartsocas who can do _____, so Adam will be ok”
“There is 1 man in South Korea who is 23 years old with Bartsocas, so Adam will be ok too”
Man is not my measuring tape
Man and our achievements are not Adam’s ultimate encouragement
Nor is it mine
Because, one day, we may have a battle to overcome that we cannot find that another man has fought
But we have something MUCH more precious than the previous suffering of another individual with our diagnosis
“We cannot say of Him, ‘He has not been there.’ He has been there, and He has not forgotten, nor will He ever forget, what it was to be there. We have not a high Priest who cannot be touched with the feeling of our infirmities…’tempted in all points like as we are.’- unrecorded experiences of suffering lie there. Able to succour them that are tempted–follow that SINGLE line of thought, it is like a track across a desert, and soon we come to deep wells of cool water: Whosoever drinketh of that water shall never thirst. They thirsted not when He led them thru the deserts” -Amy Carmichael, Rose from Briars
We have a God who became man
We have a Perfect Lamb who allowed Himself to be beaten and slain so that all of our suffering has meaning
We have a Father who gave his Perfect Son so that we, imperfect, could be grafted in
And we have a Creator who sees our “unformed body” as David wrote in Psalm 139 and breathes life into him
I want Adam to know that “When I am afraid, I will trust in YOU”
I do not want him to see a mom who says “When I am afraid if you will ever walk, I will look to all the others amputees who have walked”
Or “When I am afraid that your pain is too great, I will find another who has suffered more pain”
Because man is not our measuring tape nor our comparison
And one day there may not be one whom we can find to compare or understand or equate with our suffering
That is why HE is our Anchor for our soul
But there will always be the One slain before the foundation of the world
And He “never leaves nor forsakes”
The water of man and our stories will leave us thirsty again
I want Adam, myself, and our whole family
To drink deeply of streams of living water
I want us to drink from the Source of all Life
|saliman walking home with his mom|
Yes, I want to be encouraged by those who have gone before us
I want Adam and Saliman to be the best of friends
But I do not want Adam to think he is a valuable life only if he proves to be all that other’s with Bartsocas are
He is created by the nail pierced hands of a loving, triune Holiness
He began the good work and He will finish it
And there may be many miracles along the way
There may be many incredible moments of overcoming throughout his life
I surely will pray and dream and hope for such miracles and glory days
But I refuse to let Adam believe his value lies in that
I choose to let him know that just by being alive, he has value and purpose
Thank you Saliman and Adam for showing me such Truth.
|on a walk yesterday with the boys friend simyana|