Parents: Paul & Nancy Cullivan El Paso, Texas Full Trisomy 13  paul@cullivan.com and Web Address: http://members.aol.com/kellidolly/index.html http://cullivan.com/kelli/

Email to our friends on June 21, 2000

Things have been getting better. The first few months were pretty tough....I was basically useless at work. Losing your daughter renders job-related "crises" utterly meaningless, and it takes awhile before you actually start to care again. Nancy is doing pretty well, too. We both seem to have adjusted and we're coping, and I guess that's good enough for now. (Although Father's Day was painful, as you might expect.)

So you want to hear my Kelli stories, eh? I could (and someday may) be able to write a book on this subject, at minimum a not-so-short story. I can't do the whole tale justice in one email, but you do deserve to hear at least part of why I'm so absolutely convinced that Kelli is still very much with us:

The first two days after her death were just awful. There simply aren't enough adjectives to adequately describe how devastated you feel when you lose a child. And unfortunately, all too many of those reading this know exactly what I'm talking about. :-(  I was awake for about 40 straight hours before the first night, so sleep was really more unconsciousness than anything. But the second night was looking real bad. Even minor problems can keep you tossing and turning, so I was really dreading the prospect of spending an entire night immersed in the awful emptiness of Kelli's absence. As the first hour dragged on, suddenly from the back of my mind came a thought which was almost a voice: "If you talk to her, she can hear you". So that's what I did. I have no idea for how long. I spoke silently in my mind, in the little baby voice I used only for Kelli. I played with her, talked about her toys, told her how wonderful she was and how much her Mommy and I missed her. It felt absolutely right. And much of the awful fear and dread seemed to slip away. It felt as if the huge gaping hole in my heart....as large as the physical one that Kelli bore with her every day...was somehow filling up. I felt surprisingly good and peaceful, and that's when I went straight to the big guy.

I've long had a very awkward relationship with God. If I wasn't doubting him, I was ignoring him. And when I needed help, my first thoughts were usually on the order of "Oh, you hypocrite, begging for help now when things are bad....and certain to go right back to your old ways when the crisis is past!" Accordingly, I tried to limit them to requests for help on behalf of others. For my Aunt Cynthia and Nancy's 4 year old nephew Raymond when they had cancer. And of course for Kelli right after she was born and all looked bleak beyond bearing. But this time it was for me.

As any parent can attest, the one thing which matters most to you, the only way in which you can even function when apart from your children, is having the knowledge or belief that they are OK. Whether at school, day care, or off to the mall with Grandma, you can only bear to be parted from them if you are convinced in your heart that they are in no danger and you will see them again as surely as day follows night. For most of us this certainty is largely based on denial. Of course something could happen to our children when they are gone from our sight! But we actively ignore that because to do otherwise would be to surrender all hope of leading a normal life. Which when you think about it, is also based heavily on denial (but I digress!)

So there I was, stripped of pride and pretense, man before God, and I asked for this favor: "You know that I miss Kelli terribly. I love her so much and it's so hard to accept that she will never be a part of my life again. But awful as that is, it's a burden which can be borne if I just KNOW that she is OK. That she is with friends and surrounded by love and happy and absolutely not afraid or in any pain whatsoever. It is a great thing to ask, but please, please, I beg you to send some sign, some way of proving to me
that all is well with my wonderful daughter." And although it sounds like a cliché, with that I fell almost immediately into a deep and restful sleep.

Did the seas part? The earth shake? Mountains move? No. But over the next several days, and on into the weeks which followed, I received a sequence of clear and undeniable signals. Any one of these could have been written off to chance. And one or even two probably would have been just that....a desperate parent, grasping at straws. But not six, seven, ten in a row. No, that is what God sends when he knows that the recipient is a hard headed disbeliever and he wants to make it crystal clear that what is going on is as real as the stars in the sky. I don't know why he answered. Heaven knows, I feel as unworthy as any man alive. I can only assume that Kelli truly is one of his favorite angels, and she just asked that he do this one favor for the dad she loves.

This email is already assuming tome-like proportions, so I'll mention just two...and these were by no means the most compelling examples. On Monday morning, I called my boss to pass along the terrible news. Kelli had died on the weekend, so this was my first conversation with the people at work. I had been dreading the call, and it was just as difficult as I'd anticipated. For the most part I was a mess. It was difficult to speak, and stringing sentences together a near impossibility. But George is a very compassionate man, unusual for an ex-general, and he was clearly moved. It was hard for him too. At one point in the conversation I mentioned that I was planning on establishing a Nursing Scholarship in Kelli's name.

You see, Kelli had been an integral part of Nancy's Emerald Nursing School. She actually had a "job" of sorts, and went to the school with Nancy every day. All the students knew her well, and she would help them learn how to change a bed with the patient still in it and how to move a patient from one bed to another. More importantly, she dispelled the stigma that disabled
kids are somehow weird or less valuable than normal ones. After spending a month with Kelli, every class KNEW that she (and thus all those like her) was simply a normal, happy little girl.

It really tore at my heart to think that Kelli would no longer be teaching her lessons of love and compassion at that school. So it came to me that perhaps a Nursing Scholarship would be one small way of perpetuating her memory and continuing her "work" in that field. To my surprise, George sent off an email to hundreds of my coworkers, requesting prayers of support for Kelli and our family, and even mentioning my scholarship idea. That evening my parents and three sisters all flew into El Paso, arriving variously from New York, Boston and Florida. It was great to see them, since there's absolutely no substitute for concerned and loving family members at a time like this. We talked about many things (including, briefly, the scholarship idea), but couldn't stay up too late since the funeral was the next day.

Tuesday morning came soon enough, and the family gathered at our house for coffee and funeral preparations. I was working on a Kelli photo display with my sister Amy, when the youngest, Susan, came up to me with an odd look on her face. She then handed me the newspaper, and asked, "Have you seen this yet?" I hadn't, and so indicated, so she said "Look at the headline!" I
turned to the paper, and there on the front page, at the very top, the headline read: "El Paso Needs Nurses". Do you feel those little hairs on your neck, arms, and legs? I sure did! I've since spoken to the Dean of Nursing at the University of Texas-El Paso, and have begun to collect the funds necessary to establish a permanent endowed scholarship in Kelli's name. Gathering $10K won't happen overnight, but I guarantee you the day will come!

Most of my family left the day after the funeral, but my mother stayed on for the rest of the week. It was nice to have her around, and for the most part we spent those days relaxing. Yes, there was a fair amount of cleaning and reorganizing and donating, but we didn't push it. Mostly it was reading and long walks and conversation. On Saturday night, Nancy, her niece Kendra, and I took Mom out for dinner. As an aside, and something which hadn't occurred to me until just now, Lorraine and Kendra shared the bond of having recently lost a sibling to cancer....the Cynthia and Raymond I had prayed for, seemingly in vain, several years earlier. Anyway, the restaurant and the food were OK, nothing spectacular but quite enjoyable. In fact the whole evening was completely unremarkable, except for one oddly inexplicable event.

We were returning home, and I was driving Nancy's car. One of Nancy's projects from earlier in the week (and the subject of a different "odd happening") had been to clean out her car. Keep in mind that this was the snazzy red convertible Camaro in which Kelli traveled to and from work every day. If that little girl had a second home, it was probably this vehicle! As a result, her presence had been everywhere. Every piece of baby paraphernalia imaginable had been extracted from the trunk, glove compartment, floor, under the seats, and between the cushions. It was a heartbreakingly difficult task, but Nancy had been quite thorough about it.

So I was somewhat surprised to hear Kendra ask Nancy, "What's this"? She had found an envelope between the seats in back, and handed it forward to Nancy for inspection. Removing a card, Nancy held it up to the map light and exclaimed, "Oh, it's a birthday card for Kelli!" After a pause she added "From your Mom!" Now this wasn't really that unusual, since Kelli's 3rd Birthday was on March 14th, just a few weeks earlier. Nevertheless, I was intrigued. "What are the odds that the one thing still hidden was a birthday card for Kelli from the only out-of-town visitor who was still with us, and that we found it while she was actually in the car?" But that was nothing to the feeling I got when we arrived home and took a closer look at the envelope. It was postmarked in early March of 1999! It had lain unseen in that car for over a year.....an entirely ordinary gesture of love from my Mom to Kelli which suddenly seemed to be something much, much more.

I'm glad that so many of you profess a love for the "long e-mails", since this definitely qualifies. And I'm sorry to end the tale here. But these are truly just a couple of small examples, and many of the other messages are even more profound and unusual. And when events like this are happening day after day (and several on the same day!), it eliminates all doubt. There is so much more to life than that which is apparent to our eyes and ears. It's clear that there's a spiritual world which is every bit as real, and it exists all around us. It's part of us. But we are so bewitched by our senses that it's easy to miss or forget, or even to disbelieve.

Love to all,

 Paul, Nancy, & Kelli (Forever Bunny Girl) 0>:-)
http://cullivan.com/kelli/