I asked my wife Chani to describe the year 2014 in a single word, and her response to me was “painful.” If asked the same question I would probably opt to describe the year by the word “tumultuous.” While the year was fraught with significant pain for the entire family, perhaps no more so than for Chani, who has functioned as Izzy’
s de facto primary caretaker on a 24×7 basis, who has sadly witnessed a tremendous regression over the past year, the word “tumultuous” is a less personal descriptor, simply factually stating that the year was one in which the family structure was placed into total disarray.
It is a challenging and arduous undertaking, to attempt to summarize a year, whereby so much had transpired, in a single article. Nonetheless, I will attempt to highlight several of the most challenging moments, as well as articulate, that only via a benevolent G-d, were we able to survive with our faith in G-d completely intact, and totally unwavering.
The year commenced with my undertaking two very divergent missions; one whereby I was attempting to do all that was within my power on behalf of Izzy. The other, in stark contrast, was a spiritual journey of Torah, where I beseeched G-d in the holiest of places, to invoke an extreme measure of mercy, in determining Izzy’s ultimate fate.
The rather sudden decision by Izzy’s unparalleled medical team of experts, to recommend having a feeding G-tube inserted within his abdomen, was initially a blow that our emotional shock observers attempted to cushion, as this was a major milestone that proved that Izzy’s regressions of skills, both cognitively and physically, were (rapidly) accelerating as the year progressed. The child, who just several months prior, could sit up on his own and grasp objects, was suddenly living a coma-tonic existence, whereby he no longer had the ability to sit up or even maintain his grasp upon an object that had been placed directly into his hand.
Although for the most part, Izzy appears to live in his own world, oblivious to his immediate surroundings, we have seen flashes of lucidity, whereby Izzy has been responsive to the external stimuli of his immediate environment. We are reasonably certain that he recognizes his immediate family members, and his familiar surroundings, at least during those fleeting moments of lucidity.
In spite of his limited physical and cognitive capabilities, Izzy has accomplished quite a lot over the past year. He had raised money for the poor in need of Pesach provisions, and partnered with other families with special-needs and terminally ill children, and successfully raised funds for those other families in need. Izzy has also raised money for a soup kitchen in Israel that provides over 10,000 meals a week to the most needy families. He has been heralded as “the great uniter,” bonding people from all walks of life, residing across the entire globe, to join “Team Izzy.”
There are thousands of people located on all continents upon the world, who are aware of his condition, and who are praying on a regular basis for G-d to miraculously heal this precious and angelic child. He has united people, irrespective of religion, race, ethnicity, social and economic standing, and geographical location. For a terminally ill four-year-old who is unable to verbally communicate in the conventional manner of speaking, his accomplishments during the past year is absolutely astounding.
How many of us healthy adults can boast a list of accomplishments that can rival Izzy’s litany of successes? How many of us have learned from him how to better keep life’s challenges in perspective? How many of us have become closer to G-d via Izzy’s plight? Although he has unfortunately physically and cognitively regressed throughout the past year, his list of accomplishments is impressive by anybody standards.
Perhaps Izzy’s greatest accomplishment of all, is his ability to be “the teacher who has never been a student.” He has the uncanny ability to make those who come in contact with him into better people. Nobody knows this ability more than I do; as Izzy has most definitely been a major conduit in enabling me to improve myself in many areas, to at least begin to approach being the person that G-d expects me to be. Izzy has thought me what it means to exhibit complete and unwavering faith in G-d, and has taught me the most valuable lesson of all. As humans with limited intellectual capacity, we tend to label certain events or incidents as being “good,” while referring to others as being “bad.”
However, if one truly believes that all that a benevolent G-d does is truly for our benefit, then even what we intellectually might have perceived to be less than good, is in reality, actually for our betterment. I have successfully been able to redefine my definition of the word “good,” something that I could not have possibly achieved without Izzy’s teachings. Izzy exemplifies effective communications; reminding us all that one need not be a prolific writer or an articulate lecturer in order to be an effective communicator.
It is quite surreal, to realize just how many people are praying on behalf of my angelic Izzy, and how many lives have been positively impacted by this single four-year-old, and his infectious smile, who is incapable of uttering even a single word. Over the past year we have expanded our friend base by staggering numbers. We have been blessed to be associated with such loving and caring people of the highest caliber; especially within our own Chicago community, but inclusive of a list that spans across many continents. I would be remiss if I did not mention my online friends, whose friendships in many cases, have become an invaluable source of inspiration to our entire family.
I cannot adequately express my true and deep gratitude for all of the efforts that so many have made in a litany of manners. This includes individuals who have become like family to me, as well as organizations who have gone above and beyond what one could possibly expect of them. I must give a shout out to the Chicago Hatzolah volunteer EMTs, who have been Izzy’s lifeline; figuratively and literally. These individual volunteers have been responsive to our every medical requirement, and who have consistently responded with alacrity and with competency. Due to Shalom Abowitz’s sincere modesty I will not publicly express my deepest gratitude to my dear friend who continues to be available for Izzy on a 24×7 basis.
As I mentioned just yesterday, Hatzolah has single-handedly lengthened Izzy’s projected life expectancy. There is nary an organization who can boast to have accomplished more for families in serious medical crises then this unparalleled organization of volunteers. If one is to financially support but a single organization in 2015, I wholeheartedly endorse supporting Hatzalah, even prior to supporting Izzy’s medical fund!
Additionally, organizations such as the Chicago Center for Torah and Chesed, especially the medical referral division, directed by the incomparable Rabbi Yisroel Matzliach, has been instrumental in assuring us that no matter what curveball life throws our way, we will always have an advocate who will unconditionally stand by our side and support us in all aspects of the word. The Chicago Bikur Cholim organization has also been a valuable recourse, ensuring that we have (more than) ample food provisions during Izzy’s unfortunate hospitalizations, and subsequent to his return home. They likewise, have enabled us to weather the proverbial storms of Leukodystrophy. Last, but certainly not least, our shul, led by our unparalleled Rabbi Zev Cohen Shlita, has been by our side and has consistently offered mental, emotional, and spiritual guidance during those darkest of times when we needed it most. The Rabbi continues to be rabbinical adviser, mentor, and most of all a friend who deeply cares about Izzy and the entire family.
Without all of the aforementioned extraordinary people and organizations, there is no conceivable way that we would have had the necessary fortitude and tenacity to continue to combat the many evils of Leukodystrophy that hover over our heads, and to be able to do so with a smile on our faces; based upon our unyielding knowledge that we accept G-d’s decree with love and with dignity.