A First Birthday

I haven't been back to this blog in almost a year. In just reading the last few posts, I'm incredibly struck at how much is the same and how much more is so incredibly different.

Rafa is one year old today. He has aged with me, inside me. My fantasy life is a rich one. I know what he looks like. I know where he's plumped up and stretched out. Most days this is a comfort to me, but today, it's a dagger in my heart.

We got two cards in the mail today, one from one of my college roommate's sisters, and one from the living angels that are the staff at 7 South-MS-ICU at Children's Hospital Boston. It's impossible to describe the impact, to know your child is remembered.

I have no doubt he is loved wherever he is, because I know how loved he is here on this rickety planet. I also know he sends us messages: songs on the radio, books shared with my students, memories of his feisty, naughty side, flashes of muscle memory when my finger remembers what it was liked to be held in his hand, the list goes on. Of course, none of these are a substitute for being loved on Earth, where he belongs.

The wisest, most eloquent passage I've yet to read describing the knowing path to loss and grief comes to me from The Little Prince by Antoine de Saint-Exupery. This has always been a favorite story of mine, but like many experiences now, it has new resonance. This is one of the final chapters, in which the Little Prince explains to his pilot why he must leave him, the means of his departures, and the gifts he plans to leave behind. I plan to share the entire section here. You can read it in its entirety.

For those of you who wanted to know what it felt like to love, lose, and let our baby fly, here is your closest glimpse:

"Dear little man," I said to him, "you are afraid . . ."

He was afraid, there was no doubt about that. But he laughed lightly.

"I shall be much more afraid this evening . . ."

Once again I felt myself frozen by the sense of something irreparable. And I knew that I could not bear the thought of never hearing that laughter any more. For me, it was like a spring of fresh water in the desert.

"Little man," I said, "I want to hear you laugh again."

But he said to me:

"Tonight, it will be a year . . . My star, then, can be found right above the place where I came to the Earth, a year ago . . ."

"Little man," I said, "tell me that it is only a bad dream--this affair of the snake, and the meeting-place, and the star . . ."

But he did not answer my plea. He said to me, instead:

"The thing that is important is the thing that is not seen . . ."

"Yes, I know . . ."

"It is just as it is with the flower. If you love a flower that lives on a star, it is sweet to look at the sky at night. All the stars are a-bloom with flowers . . ."

"Yes, I know . . ."

"It is just as it is with the water. Because of the pulley, and the rope, what you gave me to drink was like music. You remember--how good it was."

"Yes, I know . . ."

"And at night you will look up at the stars. Where I live everything is so small that I cannot show you where my star is to be found. It is better, like that. My star will just be one of the stars, for you. And so you will love to watch all the stars in the heavens . . . they will all be your friends. And, besides, I am going to make you a present . . ."

He laughed again.

"Ah, little prince, dear little prince! I love to hear that laughter!"

"That is my present. Just that. It will be as it was when we drank the water . . ."

"What are you trying to say?"

"All men have the stars," he answered, "but they are not the same things for different people. For some, who are travelers, the stars are guides. For others they are no more than little lights in the sky. For others, who are scholars, they are problems. For my businessman they were wealth. But all these stars are silent. You--you alone--will have the stars as no one else has them--"

"What are you trying to say?"

"In one of the stars I shall be living. In one of them I shall be laughing. And so it will be as if all the stars were laughing, when you look at the sky at night . . . You--only you--will have stars that can laugh!"

And he laughed again.

"And when your sorrow is comforted (time soothes all sorrows) you will be content that you have known me. You will always be my friend. You will want to laugh with me. And you will sometimes open your window, so, for that pleasure . . . And your friends will be properly astonished to see you laughing as you look up at the sky! Then you will say to them, 'Yes, the stars always make me laugh!' And they will think you are crazy. It will be a very shabby trick that I shall have played on you . . ."

And he laughed again.

"It will be as if, in place of the stars, I had given you a great number of little bells that knew how to laugh . . ."

And he laughed again. Then he quickly became serious:

"Tonight--you know . . . Do not come."

"I shall not leave you," I said.

"I shall look as if I were suffering. I shall look a little as if I were dying. It is like that. Do not come to see that. It is not worth the trouble . . ."

"I shall not leave you."

But he was worried.

"I tell you--it is also because of the snake. He must not bite you. Snakes--they are malicious creatures. This one might bite you just for fun . . ."

"I shall not leave you."

But a thought came to reassure him:

"It is true that they have no more poison for a second bite."

That night I did not see him set out on his way. He got away from me without making a sound. When I succeeded in catching up with him he was walking along with a quick and resolute step. He said to me merely:

"Ah! You are there . . ."

And he took me by the hand. But he was still worrying.

"It was wrong of you to come. You will suffer. I shall look as if I were dead; and that will not be true . . ."

I said nothing.

"You understand . . . it is too far. I cannot carry this body with me. It is too heavy."

I said nothing.

"But it will be like an old abandoned shell. There is nothing sad about old shells . . ."

I said nothing.

He was a little discouraged. But he made one more effort:

"You know, it will be very nice. I, too, shall look at the stars. All the stars will be wells with a rusty pulley. All the stars will pour out fresh water for me to drink . . ."

I said nothing.

"That will be so amusing! You will have five hundred million little bells, and I shall have five hundred million springs of fresh water . . .

And he too said nothing more, because he was crying . . .

"Here it is. Let me go on by myself."

And he sat down, because he was afraid. Then he said, again:

"You know--my flower . . . I am responsible for her. And she is so weak! She is so naïve! She has four thorns, of no use at all, to protect herself against all the world . . ."

I too sat down, because I was not able to stand up any longer.

"There now--that is all . . ."

He still hesitated a little; then he got up. He took one step. I could not move.

There was nothing but a flash of yellow close to his ankle. He remained motionless for an instant. He did not cry out. He fell as gently as a tree falls. There was not even any sound, because of the sand.

Happy Birthday, Rafa Bird. Mommy, Daddy, and Grandma Sherrie love you so, as do your legions of followers all over. You've cut quite a swath, baby boy.

Goodbye

So, we're leaving the Boston area tomorrow, and as a result, I'm leaving this blog behind. I'm doing this for a few reasons: I feel as though what I need to say at this point in our process is too raw and painful for a public forum. I also want to keep Rafa's blog full of hope, even when it's tough, and while I was able to do it when he was here, it's harder to do now that he's gone. Finally, I want families who are looking for information and a chance at life to see Our Little Healer as that kind of a resource. Because we were able to find that light in so many other blogs when we were first diagnosed.

We'll still be in cyberspace, in some form or another, but as far as this format goes, we want to leave it as we found it...a place dedicated to our hero.

Mommy and Daddy will see you soon, Sunshine.

What is Everyone Else Doing Today?

Does anyone remember? Does anyone care? Is everyone afraid to say anything? I don't know.

All I know is that our baby passed away a month ago today, and it's truly painful to watch everyone else going about their daily lives as though it's a regular day.

Maybe it's too much to expect for people who knew him to remember everything about him, like we who carry the moving pictures of five weeks burned in our minds forever. Maybe that's what makes us keenly aware of every day, every date, every moment on a calendar that he's not with us.

But even if you don't know what to say, say something. Rafa is our baby. He is our boy. He did exist. He does matter. And he's gone.

And the silence of those who are well-meaning and think they're sparing us pain, it's far worse to hear nothing than to know you are thinking of him, even if it's difficult.

We'd rather know you were struggling with us than without us.

A Month Ago...

A month ago was the most painful, wrenching, and real day of our lives.

Our miracle boy, Rafael James Carlos Escobar, passed away.

So what are we doing today? Packing boxes, tying up loose ends, and wishing his Grandma Sherrie a happy birthday.

What should we be doing today? Complaining about how tired we are, figuring out which of the Big 5 will make ours the happiest baby on the block, noting when the last time was we took a shower before noon, and loving every minute of it.

And wishing Grandma Sherrie a happy birthday.

Ambivalence

I can't believe I'm saying this, but I'm really struggling with our imminent departure from the Boston area. We've found a place in New Jersey that we like quite a bit and are looking forward to rounding out its rough edges (read a wood-paneled kitchen!), and we're all but packed and ready to go. But there's a very powerful part of me that is crying out for us to stay put...and I don't know what to make of it.

I think it's because, no matter how I slice it, my baby is still here. He was born here. He died here. And while we will always have the gift of being able to take him with us wherever we go, we are leaving a piece of him behind. And that's very painful to consider.

Not to mention that we've faced some difficult issues with our housing situation, put it all together, and it's a right mess of quicksand and questions.

It's really causing me to doubt my ability to make good decisions. Money's going to be tight. I'm walking back into a situation I haven't found myself in in years...a teacher with no classroom, until December anyway. And I don't really know who I am anymore.

What do you make of being a childless mother? A teacher with no students? Both of these slices of who I am have always been such a source of comfort and peace--even before Rafa was born I was everyone's mother, and I've been teaching long before I had the degree.

But this shiftlessness feels different, more defeating.

Maybe I just have to wait to feel some kind of normal again, the kind I learned how to feel when we lived our life in the hospital, or even the normal that followed immediately after Rafa's death.

Right now, we've landed ourselves back in the waiting place.

Keep praying for us. Life is still hard, even after the flowers and cards have all dried up. It means the world to us to know you're out there.

Wise Words

We have now been in a wide variety of situations as grieving parents and as a grieving family, and my heart truly goes out to those I meet who really feel at a loss as to how to talk to us. I happened to stumble across this "wish list" and found it very appropos. For those of you who are reading this and are part of our lives, please don't misunderstand and think that you somehow haven't been of tremendous comfort to us. You absolutely have been. I just feel that, as someone who is now, and will always be, grieved and changed by the loss of our Rafa, that part of the learning behind this experience is to educate. To bring to light a topic and a new way of life that is never discussed, but that so many of us are dealing with. Take from this what you will.

A Bereaved Parent's Wish List

(Author Unknown)

I wish my child hadn't died. I wish I had him back.

I wish you wouldn't be afraid to speak my child's name. My child lived and was very important to me. I need to hear that he was important to you also.

If I cry and get emotional when you talk about my child I wish you knew that it isn't because you have hurt me. My child's death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.

I wish you wouldn't "kill" my child again by removing his pictures, artwork, or other remembrances from your home.

Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.

I need diversions, so I do want to hear about you; but, I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.

I know that you think of and pray for me often. I also know that my child's death pains you, too. I wish you would let me know those things through a phone call, a card or note, or a real big hug.

I wish you wouldn't expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.

I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that he is dead.

I wish you wouldn't expect me "not to think about it" or to "be happy." Neither will happen for a very long time, so don't frustrate yourself.

I don't want to have a "pity party," but I do wish you would let me grieve. I must hurt before I can heal.

I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.

When I say "I'm doing okay," I wish you could understand that I don't "feel" okay and that I struggle daily.

I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.

Your advice to "take one day at a time" is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.

Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died, and I will never be that person again.

I wish very much that you could understand; understand my loss and my grief, my silence and my tears, my void and my pain. BUT I pray daily that you will never understand.

How We're Doing...

It's funny to think about what to do with a blog like this. Rafa's story will never end, but our new chapter is just beginning.

We returned to New York for a feel-good visit this past week and were able to see many people who love us, who love our baby, and who are anxious and ready to see us return. We also found an apartment in Montclair, New Jersey that promises to be a wonderfully permanent perch...at least for a little while.

Some days are good. Some aren't. Some moments are beautiful and demonstrate to us so clearly how happy our hero is in his new place, and how readily he shares that happiness with his family on Earth. Some are bone-crushingly sad, and the pain is so present it takes your breath away. Most of these times are hopelessly intertwined.

I will begin back to teaching in December, which I largely look forward to. I'm not coming back under the circumstances I should, and that's hard. But I think that, for the most part, the people who I work with are ready to take me at face value and adjust to this new reality alongside me. I'm lucky to be able to say that. Am I bracing myself for that sadly uninformed parent who asks me how the baby is? Absolutely. Will I ever be truly ready for that moment? Of course not. How can you be?

Juan is heavy on the warpath about finding a job himself, while keeping busy with preparing for our coming move. He's still trying to figure out how to fill his nights, as they used to be spent at the hospital, while forever looking out for Rafa's spaceship.

Grandma Sherrie has many good times to look forward to, including tennis tournaments and a birthday party, new grocery stories to conquer, and is presently the great keeper of the remembrance box.

As for our little healer? Well, Mommy and Daddy greet him every morning and say goodnight before bed. But most times, he's not there. He's busy on his star in the constellation Hercules, tending his flower, getting into mischief, building with blocks, and enjoying peanut butter fudge and endless hugs. If you'd like to look for him through a telescope, his star is brightest in the month of July and can be found at the following coordinates:

RA16h42m40.36s D28(degrees)16'18.85"

Not sure how often we'll be updating on this particular blog, but do check in. We can't tell you enough how appreciative we are of your support, commitment, love, good cheer, and general rah-rah.

And we ride on...