I take a deep breath from way deep inside and try to hold the tears back. I feel my eyes burning and hear my voice cracking. It is an all too familiar occurrence. Whenever we go to a new doctor or therapist, enroll in a school, or apply for assistance we have to tell “the story”. Telling “the story” surfaces emotional memories and forces parents to recount the most difficult days of their existence in vivid detail. Some among us are able to robotically share the information: prematurity—born at 34 weeks, NICU for 3 weeks, CPAP for 2 weeks, NG feedings for 2 weeks, no brain bleeds present, APGAR scores normal. It is like repeating name rank and serial number. I am not that lucky.
When I recall the details of Caroline’s development and medical involvement for these purposes, a flood of sadness overcomes me. I am forced to recount every single painful procedure Caroline has endured and the agony that precipitated them–I selfishly recall all the ways Caroline has made my life more difficult. In these conversations we don’t talk about the positive unless I bring it up to prevent myself from completely losing control.
I talk about the infection early in my pregnancy that required IV antibiotics and induced a fever of 105, the lack of weight gain, the emergency C-section, the normal APGAR but the need for CPAP, NG feedings, and the days spent under the lights to treat the Billy Ruben. Then we get to the really painful stuff. The first days at home—when Caroline barely weighed 4lbs, refused to eat by mouth and began crying for 16 to 18 hours a day. It took the projectile vomiting to get a referral to the GI. The GI rather quickly put Caroline in the hospital for a calorie count and that is when John and I learned how to insert a NG tube. The crying continued and Caroline was making no progress toward achieving any milestones. Her weight gain was so poor and her stomach so small we would give her a tube feeding every three hours, but each feeding took an hour. This includes in the middle of the night. How life with the NG tube was short-lived because Caroline kept pulling it out. Then comes the first round of surgeries: G-tube placement, Nissen fundoplication, partial spleenectomy and umbical hernia repair.
Next, the part of the story that gets the attention of the developmental pediatricians, the part about how Caroline stopped crying after the surgery. Every time, I tell “the story” I find myself explaining Caroline went from crying 16-18 hours a day to almost never crying. I quickly add that I was so relieved the crying had stopped that I celebrated the silence rather than question its existence. Little did I know how much I would come to resent the silence in the coming years. And that gets us up to 5 months old. Caroline’s story has another three and half years of medical details, tests, delayed milestones, surgeries, recurrent infections, and trips to the emergency room. When we get close to present day, I proudly share her receptive language is within normal limits—I always feel so foolish for doing so but I can’t stop myself. I want to make sure they (they is all of them, everyone who I have to tell “the story” to) don’t judge Caroline too quickly. And to be fair, I want to make myself better –I try to convince myself that Caroline’s receptive language being within normal limits means I have not totally failed her. But mostly, I want her to hear me celebrate her successes because she is in the room and has heard “the story” as many times as I have told it. She knows that “the story” is not told without a box of Kleenex being discretely handed to me by someone wearing a white lab coat or scrubs. She knows I don’t apologize for the tears anymore.
But as I start describe the super human capacity that is necessary to parent Caroline I allow my mind to drift and the words to just fall out of my mouth. I know the right words will come and I don’t want to listen to “the story” again. I don’t want to remind myself of my reality. I don’t want to be super human, I want to be a mom who gets a break, who can provide her child with the medical care recommended by her doctors, I want to be the mom who hears her daughters yelling at each other. But I am not that mom and I never will be. Instead I am the mom who begs. I beg everyone. I beg nutritionists for sample cases of formula, I beg doctors for respect, understanding and their knowledge, I beg therapists for the tools to make it easier to live with Caroline, I beg social service agencies for assistance with medical bills, I beg my employer to include the 299 diagnostic code to our insurance coverage. I silently beg for people who meet me at this stage of my life not to judge me because I am a merely a shell of a person. I am so exhausted I can’t find words most days, my patience is reserved for Caroline so if you cut me off you better believe I have some choice words for you—and don’t judge me when you hear Vivian repeat the same choice words—I don’t have time to read books or keep up on current events—I know that I have become an uninspired, emotional, over educated caretaker fumbling through life trying to somehow make ends meet.
I think what pushed me over the edge today is when I spoke to Caroline’s case manager and she said something to the effect of, “I can only imagine how difficult it must be to put yourself in a position to be successful and secure but then life has other plans for you.” I don’t care about success; I care about providing and caring for Caroline while preserving my sanity and not completely shortchanging Vivian of a childhood. If it is not too much to ask it would be great if we could pay our bills. But apparently the programs developed to help kids with special needs only help those kids who have diagnoses that are in vogue—autism, sorry not really a diagnosis insurance companies or the government recognize; inability to speak—sorry, it’s not like you can’t see or hear so you should be fine in life; medically involved without a specific diagnosis—sorry we need your medical issues to be wrapped up with a bow and have a name.
At the end of the day, I wish the bureaucrats who so quickly decide that Caroline does not qualify services would be forced to spend two days with her. So they could truly understand that those words on paper—the diagnoses—are not Caroline because Caroline is a person, an individual and deserves to be treated as one. In other words, she deserves to be a name not a number.