Dear Jake

Hi, little one. Little angel. Little nephew. Today you would have turned 5 years old. Five years old! Were everything in life perfect your Uncle, cousin and I would have called you on Skype to see all your new toys and your birthday cake, to sing you Cumpleaños Feliz and to blow you lots of birthday kisses. We would have, too. Instead we will call your parents to see how they are doing, but they won’t want to talk long, which is okay. It’s just that your daddy likes to know that we all still remember you. But how could he even think that for one minute we might forget you….?

I remember the day you were born. March 10, 2005. It was snowing so much outside St. Mary’s Hospital that it was almost a blizzard. We were so excited to see you that your uncle and I came as soon as we were done with our classes. Your Binka was already there along with your older brother and sister. And you were so cute. You had a little scrunched up nose, almost no hair and slept all the time,….and it was impossible NOT to take pictures of you. I have one framed in my living room right now. You are just one day old.

The problems starting showing right away, although no one knew that you not being able to keep yourself warm would eventually become a sign for such a terrible disease. No one knew because this disease rarely occurs. It’s jus that you were that one in a million. You certainly were for all of us, though in a better concept that when speaking of a disease. It didn’t matter that you never wanted anyone to hold you as a newborn or that you slept all the time, we loved you. I loved you. I was smitten from the beginning, just as I was with your older brother and sister. And even though you managed to poop right on my lap several times in your short life I was still smitten.

When the insomnia hit from so many medications running through your body and you decided that you would rather be held I was always willing to hold you. So were your mommy and daddy, but you have to understand that there were times that they needed to do other things. And that is when I got to hold you. We would spend hours together on the couch, remember? I always hated putting you down just because I had to go to work or go home because you would always wake up. I know most nights you slept next to your daddy, but I still hated seeing you wake up when I left.

I was so happy that you made it to my Wedding Day. Grandpa Curtis took a beautiful picture of the two of us dancing together. It was one of the last days that I saw you alive as I moved to Spain just a week later. I was so sad at the thought of leaving you. So sad because as much as I prayed and wanted to believe that you would make it to be a Real Madrid soccer player one day, we all knew the prognosis. We all knew you weren’ t supposed to live until your second birthday. We all wanted to deny it and deny it we did, especially for your daddy’s sake, but it didn’t change the fact that this disease was tearing you apart from the inside out. It didn’t change the fact that your brain was shrinking and being replaced by fluid. That everyday you could do a little less and you hurt a little more. Looking over pictures of you I see the painful look in your eyes and I wonder why I didn’t see it when you were alive. Maybe I just didn’t want to see it. Yes, I saw you cry. Plenty of times, but the eyes that I remember are so soft and so loving. I guess I just don’t remember those eyes full of pain.

And now you have no more pain. And every year we have a little less. Three years ago in May, when I received the phone call to come because you were going to Jesus I thought my heart was going to stop. All the way home I cried. I didn’t know if I would see you again alive or not and for that I cried. When I walked through Binka’s door at 1 am your auntie Kerri told me I was too late to see you. You were already gone. You had left two days before as I was buying my airline ticket. She told me it was a terribly dark day the day that you left, that it was the worst experience to watch you slowly leave this earth, but the consolation of it all was that you were no longer in pain. Yes, that was good news. You had been in pain all your life and now you were able to run with the other children and Jesus, pain-free. It was good news for us, but it didn’t keep us all from crying.

For three days straight we cried. There was nothing more to say, just tears to cry out. I’m crying right now as I type this…so I’m going to move on, baby boy. Let’s talk about something more fun.

I’m sure you are having fun now. More than us, although I am having quite a fun time raising your cousin. I wish you could have met her, but then, you wouldn’t have realized who she was, I guess. If I’m going to go on wishing I guess I’ll just wish that you had been born without a kink in your chromosome…but what’s the point?

Your brothers and sisters are doing well. So are your parents. They are doing much better than I could imagine anyone after sending their baby away to Jesus. It is consoling that you went to have a better life than the one you had here. And that you are there with lots of grandparents and relatives to take care of you until your parents come, but we still wish you were here. It’s hard not to wish that. It’s hard not to wonder what you would have been like as a normal boy. What your voice would have sounded like, if you would have prefered trucks over trains, if you would have been a dreamer or a realist. It’s hard not to wonder.

Your portrait hangs over our fireplace in the playroom, where we spend most of our time. I’m glad I can finally hang it as I no longer cry every time I look at you. Now I smile at you, greet you, blow kisses at you. Your cousin does, too. We all do because we still love you. And always will. I just wanted to let you know that, baby boy, we love you.

Happy Birthday. Eat lots of cake since you can’t get a stomach ache in Heaven. I’m blowing you kisses so make sure you catch them.

I’ll see you soon,

Your auntie