Rushing out of the revolving door, we made our way home to Tennessee after staying two days in our hotel to be sure Luke was well enough to travel. The next five months was a game of wait and see; waiting to see if he would meet his normal milestones, or if he would be delayed. The former proved to be the case. In February, we had an MRI done at our local hospital as a check up, and had the reading overnighted to Dr. Berenstein, Luke’s surgeon. He called us upon reviewing it, and said we should make plans for a return visit as soon as feasible, as Luke would need another surgery. We also made appointments with the neurologist and neuro-ophthalmologist in New York since we had concerns about Luke’s vision as well as some funny movements he would make from time to time.
The surgery was a success, and would be his last, praise God!, but his next two appointments were not so encouraging. The neuro-ophthalmologist told us that Luke was cortically blind, and only time would tell if he would ever be able to see more than shadows. The neurologist kept him in the hospital for a 48-hour EEG. The results of the test revealed that Luke was having Infantile Spasms, a severe seizure disorder, which if not treated quickly and aggressively, could develop into chronic, life-long seizures. The doctor prescribed ACTH injections to be given daily. The side effects of the $28,000 per week medication(!), were horrible. Luke developed Cushing’s disease. His face swelled to the point of being unrecognizable, and he developed acne on his face and neck, and grew hair in places a baby should not have hair. The injections made him feel so continually terrible that he would moan and cry if he was not nursing or being rocked. He slept just two hours a night for nearly two months. It was a nightmare. However, the treatment did stop the seizures… for a while.
After the two-month treatment from hell, Luke gradually returned to his normal jovial self. Thinking the seizures were behind us, we moved on to consulting therapists to work on his vision and mobility. While on vacation in Michigan, the seizures came back as strong and scary as ever. His neurologist confirmed that his corrupted brain wave patterns had returned to the same state they were in before the treatment.
We were crushed, again. We cried out to God, again.
He came through with His peace, again.
The return of his seizures began a year-long trial and error search for a medication that would control them. Some were horrible and ineffective. Others were just ineffective, and the last we tried was horrible, and somewhat effective. His seizures were now fewer, yes, but his personality was altered significantly. Understandably, we could not live with this as a long term solution.
We began again to read everything we could get our hands on relating to the treatment of brain-injured children. Our search led us the The Institutes for the Achievement of Human Potential in Philadelphia, PA. My wife and I read their book, What to Do About Your Brain Injured Child, took a week’s worth of courses at the Institutes, and saw first hand the incredible strides they have been able to make with brain-injured kids like Luke. Many first-hand situations that we witnessed border on the miraculous. We began their prescribed home program for cognitive and mobility development and nutrition. Per the program, we began to wean Luke off of his anticonvulsants and to initiate a very intensive home treatment program. I took a leave of absence from teaching to stay home and help habilitate our son (and take care of our new daughter Anna, surprise!).
Six months into the program we are beginning to see some results. Still, the list of things Luke cannot do at two years of age is longer than the list that he can, but we have seen improvements.
We’ve had a couple emergency trips to the ER when he’s gotten sick and the seizures were really bad. Luke still cannot sit up on his own, crawl, use words, drink or feed himself, and we are still in a wait and see situation as far as his quality of life is concerned.
Luke has many disabilities, but his few abilities blow open doors of happiness for all who meet him.
Luke has a smile that is more infectious than ebola.
Ever since we saw the corners of his lips turn upward for the first time, there has only rarely been a day where he doesn’t melt a heart with the flash of his teeth and an indescribable sparkle in his eye. Luke has had some very bad days in his short life, but he smiles through them all. His smile is better than Prozac, and all but vanquishes worry from the minds of his stressed-out parents. He smiles through double ear infections, and countless needle pokes.
His smile is nothing short of heroic.
Luke is a living object lesson. The circumstances that surround every aspect of his treatment, victories, setbacks, and attitude are uncanny in their parabolic nature. It’s as if his life is being played out before us as another revelation of God’s instruction tailored specifically for us, his parents. The spiritual insights God has revealed to me through my son’s life are too numerous to write about here and do them justice.
I have no hesitation in saying that he has been the most influential teacher I have known, and that I am 10 times the man I would be had he not been born. Sometimes when I look into his eyes I feel like he somehow knows that his life has been, in some way, sacrificed to save me, and he gives it willingly and joyfully. This thought is almost too much for me to bear. Surely, when we are on the other side of eternity, my wife and I, and many others will be jewels in his crown, even if he never utters a word in this life.
Thank you Jesus for allowing me to have a son with the exact abilities and weaknesses to cause me to be bound closer to Your heart.
And thank you, Luke, for giving your life for your father and friend.
I love you.
A poem for my son and hero, Luke—
In my house there is a silent sage
His wisdom is not delivered on a written page
It comes from his heart and out through his eyes
His lessons are smiles and pensive sighs
His life is a battle with a formidable foe
It starts with his head and extends to his toes
Fighting for control of a rebellious body
With more resoluteness than a rebel army
Even when he falls short of the desired goal
Or resists the pain that’d make him more whole
When I’m sure to keep looking it’s easy to see
Exactly the lesson he’s playing out just for me
Sometimes I am tempted to think it unfair
Seeing him there in his roller chair
Then I am reminded that his difficult plight
Has made him powerful in the spiritual fight
The little man is a living object lesson
A shining example in each therapy session
Fighting for the souls of his parents
Teaching them the meaning of patience
Leading them to the foot of the Cross
In ways unique to his tragic loss
He eradicates complaining from ignorant lips
Through his smiles on each of his hospital trips
He upends priorities and sets them straight
By his warm embrace and a flint-like face
He’s got more determination in his rigid hand
Than any army fighting for land
He is God’s tool for those who’ll see
He is God’s gift, a hero, to me.