he farther we move away from humanity’s last bite of the fruit from the tree of life, the more we are in need of grace to make it through life. No one leaves this planet without shedding a tear or two. Many times prayer elicits a quick resolution, but other times it produces a long, strange silence that shakes the soul. My abuela
(grandmother) used to say that sometimes pain and suffering knock at your door and announce they are here to stay. One day, without any notice, that knock came to our door.
The call sounded casual with a cordial and ordinary tone, as if I had ordered cupcakes and someone was confirming. My husband and I had been consulting pediatricians and specialists about our baby’s health, and everyone had agreed that all was well. We were first-time parents and needed to relax and allow the child to develop at her own pace, they told us. “All babies develop at different rates, and no two are the same,” they said. I was bordering on turning into that despised medical creature, the “excessive-worry mom.” Clearly the 3-year-old child was fine, and I was the problem.
Although I felt embarrassed by physicians’ comments, my husband and I weren’t stopping. Knock on as many doors as possible, and one day someone will have the answer,
Looking back, I realize that I should have clued in when the phone call from the doctor’s office came earlier than expected. Genetic testing results would require a little extra time, we were told. Then a little more than a week after we had completed all the tests, the phone rang again. All was well with the metabolic test they ran, the person on the line told us. Here we go again
, I thought. “Wonderful. Thank you for your help. Have a nice day,” I quickly replied.
“Wait! There’s more,” the voice said. “The results of the microarray analysis have also arrived.” Perfect. Might as well get both dead ends together,
I thought. But then she said, “You can stop searching.”
Reality Sets In
We had spent years chasing an elusive enemy that everyone said did not exist. And now here it was—cornered, unmasked, and not even remotely what we expected. A condition so rare it’s simply referred to as a deletion syndrome.
Small parts of the conversation seemed to strike me, and others were completely lost: “abnormal female” . . . “significant portion of chromosome missing” . . . “four bands” . . . “extremely rare.” The geneticist wanted to see us early the next morning to answer questions and provide information. “Sure, we will be there,” I heard my voice say. Now we knew; the search was painfully over.
A brief, confusing meeting with the geneticist came and went. It apparently was not my fault, and this seemed to be important, because it was stressed again and again. Got it; now what?
There was scant information to receive, mostly a 30-year-old report of a few cases vaguely similar to ours. No new, fresh information; no clear idea of what the future might hold. Except she wouldn’t need a college fund, and apparently there was no point worrying about the future because we could all die today. And, oh yes, we were to sign up for government assistance, but the waiting list was about 10 years long. We also should meet once a year to collect information and share new information, if available. That was it. Good luck.
We went home, and I scoured the Internet for anything I could find on deletion syndromes. There was fresher information there, but not much different. Cleft palate, webbed fingers, missing or tethered vertebrae, possible problems walking, missing or no teeth, kidney and heart organ malformations, eye problems, mental retardation, premature ovarian failure, autism-like behaviors, muscle-tone problems, sensory integration problems, speech delays or no speech at all, seizures . . . and the list went sadly, devastatingly on. I sat down, pen in hand, and made a list of all the specialists I thought we needed to see. No guidance; just us. The flurry of new physician visits, diagnostics, and hospital stays surely must have sent the insurance company into full panic mode.
The New “Normal”
After the initial shock and the small army of physicians had rendered their verdicts, we were left to live our new “normal.” Pain and suffering had come knocking at our door, and announced they were here to stay. There was no “fixing” this boo-boo, and defining “normal” required a new mind-set. I realized I had been using the word “devastated” completely inaccurately all my life. This
was devastating. Someone should have told me to reserve the word for when it really counted. I surely wasn’t “devastated” when I couldn’t find that perfect pair of shoes in my size. And compared to this, I most certainly didn’t have any real
problems in my prior life. The word “problems” needed to be revised as well. What a petty complainer I had been!
Sitting still, I felt as though my soul were writhing and turning inside me. The calamity was irreversible. I began to spend a lot of time online, sitting in the shadows and reading of other parents’ struggles. The “newly diagnosed” wanted to meet and talk with others who were dealing with similar genetic problems. Emotional support and encouragement, celebrations of new milestones reached, grief for those who had passed on, and information of the “it might help” variety were all craved and appreciated. There we were at the Pool of Bethesda. No pretensions; everyone there understood. No need to take a “special needs” course; we were all submerged in it. No physicians, no genetic counselors; just parents and caretakers struggling with issues ranging from the mundane to the extremely complex.
We yearned for a mighty angel to move the pool’s waters and provide healing, but it wouldn’t happen today, and probably not tomorrow. Modern medicine has greatly advanced, but not enough to cure complex genetic problems. So there we were, providing one another with courage to move along. We were in the business of improving “symptoms”: learning to walk, to eat, to breathe, to talk, to do what others do effortlessly, to be human. Normal life had come to a halt. I realized that my graduate degree was grossly, pitifully, inadequate for the new task at hand. The crowd by the pool grew every day, complete strangers from around the world. We had only one thing in common: love for our little broken angels.
Where Was God?
I wondered about God. I had prayed fervently for a healthy child. I didn’t ask for a brilliant child or a beautiful child, but a healthy child. I had added “a child with a goodly heart.” I had asked for the “better part,” but somehow the many prayers appeared to have been lost.
My husband received a book from a friend at Christmastime. It made a case against the existence of God. The presence of evil and human suffering couldn’t allow God to coexist with them, it said. It was tempting to believe that. What if the Bible promises aren’t true? What if no one is listening?
I wondered—but not for long. It’s that author who doesn’t know the truth. A wrong choice was made a long time ago, and this world plunged into deep darkness. God doesn’t shelter us from all the effects of sin, but He does provide us with grace to make it through the dark hours. Sin must run its course, but thanks to the cross, one day it will be vanquished.
The entire planet heaves with grief. Yes, some trials are worse than others. Some surmise that trials are sent as punishment for unrepented sin, or to teach us an important lesson to improve our characters. Maybe, some say, God allows trials because He knows we can handle them, or they make us realize we would rather leave this world. Although I am not a theologian, I know that the god they are describing is not my God. Sin has no reason, and its effects are chillingly dreadful.
Looking Back—and Ahead
I can now look back on my experience in peace. The hand that set the worlds in place took mercy on a little girl before she was born. That hand has not forsaken her yet, and never will. Physicians still sit and stare at my daughter, and after the silence they wonder out loud, “How can this little girl be in better shape than those who are missing a lot fewer of the same chromosome bands?” I didn’t ask for a miracle because I didn’t know I needed one. Yet it was granted all the same.
I continue to pray for my beautiful little daughter, and I remind God of my original prayer. One day that prayer will be answered; one day she will be a healthy little girl. For now, we must walk this strange road. You may not see us frequently, but we are all here by the pool.
To all those who live with children who are ill or have disabilities, never doubt that God cares. He will sustain and guide you. He will bless your heart with peace and hope. The eyes that see everything can see your struggles. His heart has a special place for these children, and He will watch over them. For everyone else: pray. Include children with disabilities and their families in your prayers—even if you don’t know of anyone specific. Prayer is powerful, and prayers by others do intervene in lives.
One day the Pool of Bethesda will be vacant, never again to beckon the ill and the disabled.
Never again will it shelter the apparently unrequited hopes and prayers of humankind.
I am still not sure what I will say when I finally get to stare at my daughter eye to eye, with minds and language unimpaired. Maybe at that moment we will both be speechless.
Edyln Aldridge is a stay-at-home mom caring for her beautiful 5-year-old daughter, Maricelis. This article was published April 12, 2012.