Note #1: For those who don't know, SIDS refers to Sudden Infant Death Syndrome. If you'd like to learn more after reading this story you can visit these websites where my information was obtained: http://www.sids.org/ and http://www.sidsalliance.org/index/default.asp. Also, NICHD refers to the National Institute of Child Health and Human Development and NIH refers to the National Institutes of Health.
Note #2: I have never been touched in any way by SIDS and I am not a parent, but I can't imagine there being a pain greater than losing a child. This story is dedicated to the memory of every child who has died because of SIDS, to the people who loved them and to those that fight for this issue.
"Sir, do you realize that the Surgeon General's office does not plan on recommending to Congress that they approve the full funding that the NICHD has requested for SIDS research in the year 2002?" Toby asked, his voice rising in irritation as he entered the Oval Office. The President looked up from his reading and regarded Toby, who now stood before him. "Good morning to you, too, Toby," the President said dryly. Toby spoke more calmly, "Good morning, Mr. President." The President nodded as he stood up from behind his desk and walked over to a cart that held a silver pitcher of coffee. He turned to Toby, "Coffee?" "No, thank you, sir," Toby replied with a shake of his head. The President served himself a cup and then walked over to stand in front of Toby. "Ah," he said as he sampled the brew. He gestured at Toby with the hand that held the cup, "I always say there's nothing like a good cup of coffee. You have to start your morning out right, Toby. If you drink some crap that looks like you should be using it to pave your driveway with, then you'll be crabby all day. Gotta have the good stuff." Toby nodded politely and said, "Yes, sir." The President placed the cup down on his desk, "So what is it that's bothering you?" Toby took a deep breath, as he prepared to repeat his previous statement. "The Sur-..." "Ah, yes," the President said with a nod, "The Surgeon General's office is not recommending to Congress that the NICHD receive full funding for SIDS research. Yes, to answer your initial question, I do realize that." Toby shook his head sharply, "We have to urge them to recommend full funding, sir." "Can't do it, Toby," the President responded. Toby inhaled deeply. "Mr. President, I realize that we have already urged the Surgeon General's office to make recommendations to Congress for full funding regarding a number of health issues, but I feel that this one also needs some attention for the coming fiscal year," Toby said. The President nodded, as walked behind his desk and arranged some papers that sat atop it. "I agree with you, Toby. SIDS is a terrible tragedy that affects a great number of infants every year, but-..." "3000, sir," Toby interjected softly, as he cleared his throat. "Sudden Infant Death Syndrome is responsible for the deaths of close to 3000 infants every year." Josiah Bartlet eyed him for a moment, before bobbing his head and speaking, "I understand that, Toby, and if it was up to me, I'd give the NICHD every cent they've requested for continued research, but it's not up to me. There's only so much money available each year and Congress can only allot so much to each issue." Toby's jaw tightened a bit. "I'm merely suggesting that you urge the Surgeon General's office to make a recommendation to Congress for the funding the NICHD's requested, sir." "Toby, we can't recommend that that much money be allocated to this issue." "Why not, sir?" Toby asked, his voice rising a bit. He paused and then continued more calmly, "Why can't we? Why can't we try to give the NICHD what they need to continue the research in the fight against SIDS? They've requested funding of a minimum of 1.137 billion dollars. Or, accordingly, a 16.5% increase from this fiscal year's funding." Toby took a deep breath and met the President's eyes. Bartlet sighed and shook his head, "I know what they've requested, Toby. But you have to remember the requests Congress gets from the NIH itself. There are a great many issues plaguing this country and everyone wants money for funding. Unfortunately, there's only so much available." "What's more important, sir?" Toby asked, his voice cracking a bit. "Excuse me?" "What could be more important than an issue that effects babies? They are defenseless, sir. If we won't fight for them, who will?" The President let out another sigh and then removed his glasses. He rubbed at the bridge of his nose. "There are times I hate being in politics. Trying to decide who should and shouldn't receive the funding they need for health issues that are all important in their own right is one of those times." "With all due respect, sir, it's not up to you. Push for a recommendation to be made to Congress and let them decide," Toby responded. "1.137 billion dollars, Toby." "3000 infants, sir. It's the leading cause of death among infants between the ages of one month and one year in the U.S." The President nodded, as he took a deep breath. "Okay, I'll think about it." A hint of a smile appeared on Toby's lips. "Thank you, sir." With that, Toby left the Oval Office. * * * * Josh caught up to Toby on his way to his office, "What were you talking to the President about?" "Funding for SIDS research." "Why are you on that? Isn't that for the Surgeon General's office to handle?" "I want the President to urge them to recommend that Congress approve the funding the NICHD has requested." Josh touched Toby's arm and he stopped walking for a moment. "Why is this so important to you?" Toby's averted his eyes from Josh's, "An affliction that has no known cause and is responsible for the deaths of thousands of infants every year should be important to us all." "It is. Of course, it is. But that's not what I asked. I asked why it's so important to *you*." Toby sighed, "Look, don't you have any work to do or is it in your job description to bug me?" Josh didn't crack a smile and said softly, "Toby." Toby lowered his head, "The NICHD needs funding for the third Five Year plan, Josh. The plan will be used for increased research on the cause of SIDS and preventative measures that can be taken, among other things." "You're amazingly gifted at avoiding a question." Toby groaned and raised his voice a bit, "What do you want from me? It's an important issue, for godsake. Ten years ago, twice as many infants were dying compared to now. Between 1992 and 1998, the rate of infant deaths attributable to SIDS decreased by 42%. You know why? Because of research. Research told parents that placing your baby on its stomach when sleeping is linked to SIDS deaths. That's what research does, Josh. It leads to babies living and parents not having to bury their children. But there is no research without funding." Josh studied Toby, the passion in his voice just as evident in his eyes. There was a fire in them that Josh rarely saw. Yet there was something more...A pain too deep to comprehend was lurking beneath that fire. Toby turned his head away from Josh and swallowed hard, "I've got work to do." "Toby-..." Josh said, but it was too late. He'd already turned on his heel and was on his way down the hall. * * * * CJ leaned against the frame of Toby's door and knocked on it. Toby lifted his eyes from his work. "Yeah?" CJ shrugged, as she walked into his office. "Nothing. I just thought we could talk." Toby scoffed at that, "Yeah, I've got 25 files to read and a speech to polish, but, sure, I've got time for a little conversation about absolutely nothing." "Do you pride yourself on being a pain in the ass?" "Yes." "You're really quite good at it." "Comes from years of practice." CJ sat down in the chair in front of him and watched as he worked. It took only a few moments for him to throw his pen down, rub at his eyes and then look at her. "Do you plan on staring at me for the rest of the day? If so, let me know now so I can hurl myself off the roof of a very tall building." "You know why I'm here." "I assure you I don't." "Tell me why you care so much about the SIDS funding." Toby kept CJ's gaze for a moment, before returning to his paperwork. "I see you've been talking to Josh." "He's concerned." "Well, I'm concerned he's a moron, but you don't see me running to you about it." CJ sighed, "You know, Toby, this is me, as your friend, coming to you asking if you'd like to talk about something that's bothering you. It wouldn't be totally out of line to show a little gratitude." "Okay. Thank you. Now leave." Toby continued to write, until CJ placed her hand over his. He slowly lifted his eyes to hers. "Tell me about it," she said softly. Toby swallowed around the lump in his throat. He hadn't talked about it in so long. It was too painful and no good ever came of it. What was the point in revisiting a dark part of your past and opening old wounds that would never fully heal? "It was a long time ago." "Tell me about it," she repeated. Toby rubbed at his face and then focused on a spot on the wall behind CJ. He began to speak, his voice so soft she could barely hear him. CJ studied his eyes. A faraway look occupied them now, but it couldn't hope to disguise the pain swimming around in them. "His name was Jeremiah and he was my son. He was born on July 18th, 1988 and he died on December 18th, 1988. Today would have been his 13th birthday." CJ's mouth involuntarily fell open at Toby's admission. She had expected as much from what Josh and the President had told her, but she still wasn't ready to hear him say those words. CJ wanted to say something, but she couldn't bring herself to interrupt him as he continued. A smile threatened to take over Toby's lips as he continued, but it was hindered by years of sorrow. "Jeremiah was a green-eyed, curly haired little boy with a mischievous twinkle in his eye. I was convinced he was going to play shortstop for the Yankees. Andi kept telling me you can't tell if a baby has a natural talent for baseball at five months, but I just knew. He could already throw his stuffed animals out of his crib." Toby paused and took a deep breath before continuing, "I was taking care of him that day. Andi was out shopping and I was working in my office. I checked on him every once in a while, just as Andi had instructed. But you know how I get when I'm working on something big. I become engrossed, oblivious to everything else. I lost myself in my work. It was an hour later when I realized I hadn't checked on him. I walked into his nursery and he was lying on his stomach, just as I had placed him, his face pointing towards the wall. I didn't notice anything out of the ordinary, until I approached the crib. It was then that I realized I couldn't hear him breathing. I picked him up and attempted to do CPR, but it was too late...He was gone." Toby exhaled deeply and then rubbed at his eyes. "It was a long time ago." There were a few silent moments, while CJ simply studied him. She was amazed at how much she didn't know about him. She had known him for ten years, but this part of his life had remained a secret from her. There was a pain rooted deep in his soul that she couldn't hope to ever understand...There was a part of him that she would never really know. "It wasn't your fault, you know," CJ finally said. Toby nodded, "That's what everyone said. The doctors said it was SIDS. My friends and family all said there was nothing I could have done. But that doesn't mean much when you think of the little boy you once held in your arms being so full of life one moment and lifeless the next. Andi said she didn't blame me either, but a wall went up between us that day that never came down. Jeremiah's death was the beginning of the end for us." "Why didn't you ever say anything, Toby?" CJ asked. "What would've been the point? It wouldn't change anything and I don't need your sympathy." "I'm your friend, Toby. I care about you. This is a part of you just as much as anything else." "I've learned to live with it, CJ." "This is how you live with it? By shutting your friends out? By never opening up enough so that another woman could even think about being with you? That's how you live with it?" "I've done whatever I had to do to make it through one day to the next. Not a day goes by that I don't think about him. I deal with it in the way I have to. I've had enough heartache to last me a lifetime. I don't need anymore." "So you plan on living the rest of your life alone." "I've grown used to it." "You think that's what he'd want?" Toby met her eyes, "I think the only thing I can do now to honor my son is work so that other children can live the life he never got to." "Jeremiah stopped living, Toby. You didn't." Toby responded softly, his voice thick with emotion, "A part of me died with him, CJ. All that hope for the future left with him." CJ understood Toby much better in that moment. She understood why he was so often cynical...Why he was always waiting for the other shoe to drop. He was living a life that simply consisted of the sun rising and setting, with work thrown in between. There was no actual living that went on. He viewed the world through eyes colored with disappointment and heartache. Yet, every so often, you could see a part of him emerge that must have been buried with the passing of his son. Every so often, you could see that passion in his eyes for the future of this nation and the people that populate it. It was then that he'd fight the good fights...The ones where you can see he believes in them in the very depths of his soul. It was then, CJ now knew, that Jeremiah's spirit lived within him. "What kind of father were you?" CJ asked. Toby raised his eyes to her, surprised by the question. He hesitated for a moment before responding, "I never wanted to be a father." He paused and CJ could see a flash of shame in his eyes at the admission, as if those feelings has somehow contributed to his son's death. He continued, "Andi and I never wanted to be parents. We were too focused on advancing our careers. Then it just happened, an accident and total surprise. I was shocked when Andi told me she was pregnant and all I could think about was how this would affect my career." Toby lowered his eyes, as his voice trailed off. CJ could tell that even after all this time he felt guilty for having such feelings. "I wasn't really involved in the pregnancy at all. I didn't attend the doctor's appointments with Andi. I didn't go to Lamaze class. When the big day came, it finally hit me that I was about to be a father and I realized how grossly unprepared I was. It was the first time in my life that I've been scared to death." Toby took a deep breath before going on. CJ noticed a hint of a smile on his lips as he continued, "Then I saw him for the first time. My eyes met his and I fell in love. All of the indifference, worries and fears that I had ever felt seemed to disappear the moment I saw him. The only thing I knew then was that I was his father and he was my son and...and I'd give my life to protect him." CJ stared at Toby, as she hung on his every word. She was in awe of this side of him that no one ever saw. There was a vulnerability in him that was constantly being hidden behind his hard exterior and biting wit...There was a world of pain that he had kept locked away until now. Toby laughed bitterly, throwing CJ from her thoughts of him. He went on, "But I couldn't protect him. Being Jeremiah's father was my first experience with unconditional love. Until then, I could never understand how parents talked about loving their children without boundaries or limits. It seemed ludicrous to speak of such things in a society that is built on its attention to boundaries and limits. Then I became a father and I understood what they meant. The kind of love you feel for your child is like no other." Toby swallowed hard before speaking again, "I spent countless nights holding him in my arms until he fell asleep. I'd read him baseball trivia books. We'd watch CNN together. But the best moments I spent with my son were the ones when I held him in my arms and watched him sleep. I marveled at the rise and fall of his tiny chest, the flicker of his eyelids every so often." Toby stopped and CJ could tell he was choking back tears. "I never thought the memory of him sleeping peacefully would be the last I'd have of him." Toby lowered his head and wiped roughly at his eyes. He spoke then, his tone completely changed, "I have work to do. I'd appreciate you leaving me to do it." CJ was amazed at how quickly he went from being open to cold again. Now, however, she understood why he was so often gruff and closed off from everyone else. It was a defense mechanism. He never let himself open up enough to be hurt like that again. "Toby, you can't go on like this," CJ said. "You don't know what it's like, CJ," he replied. "You're right, I don't. I've never been a parent, but I can't imagine there ever being a pain greater than that which comes with losing your child." "Nothing compares to it," Toby said softly. "And it was made worse by the fact that his death was attributed to SIDS, an affliction that still holds so many questions." Toby raised his eyes to her, "It just seemed so senseless. How could a baby who was perfectly healthy one moment be dead the next?" "And the research is helping to answer some of those questions." "Most importantly, it's helping to decrease the number of infants that die each year." CJ nodded and smiled slightly, "And that's why the President is going to urge the Surgeon General's office to recommend that Congress approve full funding for NICHD's SIDS research." Toby's eyes lit up, "He is?" CJ bobbed her head, "After the President spoke with you, he spoke with Josh. It was apparent that you were motivated by a personal experience. If you had just told him-..." "No," Toby said with a sharp shake of his head. "I swore long ago to never use Jeremiah's death as a way to influence others. It would cheapen it for me. I fight on his behalf, but I don't use him as a weapon." CJ smiled at the pride and honor this man had. Although she would never think less of him if he used Jeremiah's death as a way to influence the President, Toby wanted to fight for his son employing the merits of the issue, while using his personal reasons as his private motivation. "How long have you been fighting for this issue?" "How long has Jeremiah been dead?" Toby said, as he looked her in the eye. CJ nodded, as Toby continued, "Right after it happened, I spent months researching SIDS. Thirteen years ago, there wasn't much to go on. I began attending every medical conference that had SIDS on its agenda. I wrote letters to my Senators and Representatives every year pushing for funding for research. I'd attend any gatherings of SIDS associations. But, once I got here, I knew that I could make a real difference." A soft smile appeared on CJ's lips, as she realized that a true hero was sitting right in front of her. She stood up and leaned across his desk, placing a kiss on his cheek. Then she took a step back and said, "Your son would be proud of you, Toby. Now why don't you consider honoring his life by living yours to the fullest." With that, CJ turned on her heel and left. Toby watched her leave, as he pondered her words. Then he stood up, removed his coat from the rack in the corner and exited his office. * * * * Toby walked through the cemetery, his feet shuffling through the grass the only sound. He walked a few more yards, before pausing at a gravestone. Toby bent his head, as he knelt in front of it. He brought his hand up and ran it across the smooth stone, wiping away any dirt or leaves that had gathered on it. Then he fingered the simple words in Hebrew that graced its front. Toby wiped away a tear that had appeared on his cheek and began to speak softly, "I'm sorry I haven't come in a while. It's been really crazy at work." Toby's voice trailed off, before he began again. "That's not really true. The truth is I've been dreading this day. You would have been 13 today, a man in the eyes of our community. In a few days, we would have been celebrating your Bar Mitzvah." Toby shook his head, as his voice became strangled with sobs. He composed himself a bit before going on, "I want you to know that even if you were here to celebrate becoming a man in our faith, you'd still be my little boy. You'll always be my little boy, Jeremiah." He fingered the Hebrew letters that spelled out his son's name as he continued, "I haven't done too well without you. I guess I thought that I couldn't honor your death and move on at the same time...I guess I was afraid to even try. But a friend of mine helped me understand that I'm not honoring you by not making the most of this life. So, I'm going to try, Jeremiah." He paused and said in a whisper, "I'm going to try to love again, son." Toby then bent his head and began to recite softly, "La kol z'man v'et l'khol-khe fets ta khat ha sha ma yim. Et la le det v'et la mut et la ta at v'et la a kor na tu a. Et la ha rog v'et lir po et lif rots v'et liv not. Et liv kot v'et lis khok et s'fod v'et r'kod. Et l'hash likh a va nim v'et k'nos a va nim et la kha vok v'et lir khok me kha bek. Et l'va kesh v'et l'a bed et lish mor v'et l'hash likh. Et lik ro a v'et lit por et la kha shot v'et l'da ber. Et le e hov v'et lis no et mil kha ma v'et sha lom." Toby had often recited this passage from Ecclesiastes 3:1-8. Although it was traditionally recited at funerals and the Yizkor memorial service, he would often say it as he knelt at Jeremiah's graveside or as he lay in bed after a day where hope seemed to be slipping away. These words would help him understand that everything happens for a reason and that there is a time for everything. These words would give him hope: ~ To everything there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; A time to kill, and a time to heal; a time to break down, and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance; A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; A time to seek, and a time to lose; a time to keep, and a time to cast away; A time to rend, and a time to sew; a time to keep silence, and a time to speak; A time to love, and a time to hate; a time for war, and a time for peace. ~ Now, after all these years, he truly believed those words and he was holding on tightly to the hope they gave him. For him, it was now a time to heal; a time to truly live again. Toby slowly stood up, brushing the grass from his pants. Then he leaned forward, placed a kiss on his fingers and touched them to his son's gravestone, as he said, "R'fa e ni y'ho va v'e ra fe ho shi e ni v'i va she a ki t'hi la ti a ta." ~Heal me, O LORD, and I shall be healed; save me, and I shall be saved; for Thou art my praise.~ From Jeremiah 17:14
THE END
NOTE: Just a little note to let you know that the fact the last verse is from Jeremiah, the same name as Toby's son's name, is a wonderful coincidence. I found that line and saved it thinking I might be able to use it, but didn't even notice it was from Jeremiah. I had already written the chapter with his name. Then I went back to look for a good line to end the story with and I came upon this verse. I was pleasantly surprised to realize it fit so well and came from the book that shared Toby's son's name. Okay, just thought I'd let you know that! Hope you enjoyed it and please let me know what you thought.
