Can you miss someone you've never met?

Six years ago today I solemnly boarded an early morning flight to south Florida with the mission of seeing an ailing baby boy named Jacob. The situation I was putting myself in would be considered by most as dangerous and nonsensical. It was a promise -- more like a pact of desperation -- that the boy's mother and I had made. But much to my later shock and disbelief, after I got on my plane to meet him, little ten-month-old Jacob drew his last breath.

Jacob suffered from spinal muscular atrophy (SMA), the number one genetic killer of infants and toddlers. SMA is a neuromuscular disease that robs one of any voluntary muscle movement (for babies think sitting, crawling, swallowing, breathing), but yet leaves one's emotions and intellect untouched. While I had seen pictures of Jacob's smile, the familiar wisdom in his young eyes, the forced and conflicting smile of his mommy and daddy in family photos, I had only experienced Jacob via scant emails and lengthy phone conversations with his mommy, Shaina. Six years ago today, Jacob's suffering came to an end and his parents held their baby boy for the last time. Six years ago today I had missed the chance to meet this miraculous child in person, but today I wonder: Can you miss someone you've never met?

This can only be answered with my mother's heart. It is the love and longing I had for all my unborn children. It is the planning of their entire futures upon learning of their existence. It is the fear of raising a child in an uncertain world that pushes courage and blind faith to rise to the parental occasion. It is something that defies logic, and if you have ever had a child...living or not allowed to fully live...you can begin to understand how I miss Jacob.

As I approached Jacob's home that morning six years ago, I called my husband to let him know I had arrived safely. I could hear some tension in his voice...which was understandable since just two weeks earlier we had buried our own baby boy, Sawyer, from this same sinister disease. It was the tie that bound Jacob's family and ours. Throughout the previous five months, we all became unwilling experts on this disease to which there is no treatment, no cure. We experienced the same trials with inexperienced nurses and doctors and both chose to care for our boys at home instead of a hospital. We swapped emergency room stories with horrific ease as we recounted the hesitation of the ER doctor and the instinctive pouncing of our mothers' hearts and hands to resuscitate our choking children.

And now I was moments away from knocking on this door and meeting Jacob's family for the first time...but under these circumstances? This Jewish family was in the throws of sitting Shiva for their baby boy. I had no idea what this ritual entailed, but I was about to get a primer. I took a deep breath and waited for someone to answer. Keep in mind that Jacob's mommy Shaina and I had never met face to face, so when this blond-haired stranger with a southern twang (that's accent) arrived on their front stoop, let's just say that I got the look reserved for a door to door salesman. But after some awkward seconds of confusion, I simply said "I'm Sawyer's mom," and was welcomed in.

I don't remember how much time lapsed before I actually met Shaina. No one can teach you how to act in situations such as these. Who would want to learn?!? But since this same scenario had just happened to my own family just days prior, I sat quietly and listened. The phone was ringing, there were hushed conversations here and there, and in a darkened corner of the home, Jacob's grandfather sat reading the Torah.

Finally, Shaina made her way down the stairs and we felt all eyes on us as we embraced for the first time, these two young mothers with too many worldly hardships in common. I don't know who let go first, but the air was heavy, and Shaina broke the tension as only she could by saying, "You're so blond." To which I responded, "You're so short." (My 5'5" stature seemed to tower over her five-foot-nothing height, and I am certain Shaina would say I cheated her out of a few centimeters!) That was the first unforced smile I had felt in weeks.

Since October 1, 2002 so much has happened in the lives of Jacob's family. They have taken their son's life and death and wielded it into their passion: the Jacob Isaac Rappoport Foundation which to date has raised $500,000 for spinal muscular atrophy families and research. Since this date six years ago, Jacob's older sister and family have welcomed two younger brothers all of whom will certainly be touched by their brother's memory. In fact, at last night's Rosh Hashanah, Jacob's aunt beautifully described the vacancy felt by Jacob's absence as she prosed on the message board at Jacob's website, ourshootingstar.com:

Jacob,
Last night we celebrated Rosh Hashanah at your family's house. Jordan and Max read us a story and Sam sang us a song. We all ate chopped liver (Pop Pop's favorite), and had Granny's famous brisket. Jordan sipped on wine and quickly spit it out and your mom gave a beautiful toast about you and the story of the giving tree. It was a beautiful night but you were deeply missed. I sat back and watched your siblings laughing and playing with each other and I thought where is Jacob? You would have been singing about apples and honey along with them. You would have been close to Jordan's height by now. You would be running to grab Sam his blankie and bunny when he bumped his head on the table. Jacob...no matter how much time passes or how many holidays we gather for there will always be an emptiness without your smiling face there. I know you are always with us in spirit but some times that just doesn't feel like enough.

Tomorrow will be the anniversary of the day you took your last breath. So much has changed since then and yet it doesn't feel like that long ago that you were here in our arms. We all miss you terribly and it pains me to know that if you were physically here you would be the best brother, son, grandson, great grandson, cousin and nephew to us all. Please know that you will never be forgotten and we are all so blessed to have had you in our lives for the little bit of time you were with us. Until we meet again...you will continue to be our angel and our shooting star.

I love you always,
Aunt Susie

Can you miss someone you never met? After reading Aunt Susie's words, I am more certain than ever. Today is your day Jacob. We celebrate you and the profound, larger-than-life-itself affect your memory has on others, with and without SMA. And even though we never met, I know you because of the good that your family is doing to help other families living and dying with SMA.

Want to meet some more heroic kids with SMA? Watch ABC's Extreme Home Makeover, this Sunday night, October 5th at 8/7 central to meet the Akers family!