I am not alone...

I know that Mothers have had to bury their sons since the dawn of time, but it had never been made as real and personal as this letter I came across in the family records: my grandmother's cousin's aunt, Hannah Bailey Conant, wrote this letter to her sister Elizabeth (Libby) Bailey Foote, October 5th, 1851:

My dear Lib,

I have been waiting, hoping to hear from you, but still I know it is hard for you to think of writing to any of us. But I have never heard any particulars of dear little Frank's last sickness and did hope you would feel like giving them to me who feel so much interested and who loved him so well. There was not living another child in the world except my own whose death I should feel as much as his, for I had lived with him so much that he seemed very near to me, and I could always get along with him so nicely. He has done so many little errands and other kindnesses for me; he had so many little manly traits that no other boy of his age that I know ever had. He was always so kind and so very fond of little Fred that my memory of him must be green and sweet as long as I live. How you must miss him at meals, at night when you are putting the others to sleep. How your heart must yearn for his presence in the silent watches of the night, when sleep forsakes your pillow from thoughts of him. And then when you return to your house after a short absence you miss his welcome and his loud shout of "Ma!" which I remember would ring through the house as soon as he heard your step on the doorstep. His affection for you will ever make thought of him too sweet and deep for utterance. He was a true mother's boy, and if he had lived would have learned to respect you as truly as he loved you. The spring opened joyfully for him.... The autumn is here and he is not with us. He has fallen, as fall now the leaves from the trees. They will rise and blossom again - so lives and flourishes his loved spirit, in milder skies, under teachers more capable to develop his remarkable character. He was welcomed there by those who know him and loved him. If this beautiful faith could be realized, how easily could you wipe away the tears from your eyes; the sad thoughts from your mind.

Your truly sympathizing sister, Hannah.

This little Fred sounds a lot like Phillip, from the "little manly traits" to his affection for his mother. Although it was written 165 years ago, I feel like this letter could have been written for me, and sent through the years to comfort me. And in small ways it does comfort me, just knowing I am not alone.

So now what?

Dear Phillip;

Your birthday has passed. My birthday passed a couple of weeks before that. Both days were so profoundly empty without you. As naturally happens when we pass the benchmark of another year I look back at my life, and look forward at what is coming, and I wonder "Now what?"

I spent exactly half of my life so far being your mother. Looking back I realize that even before the day you were born you became the focus of my life, and everything I did from the day I found out I was pregnant with you until now was centered around you. In your earliest months I was your sole source of sustenance. But even when you were able to feed yourself my focus remained your health and well-being, and then as you grew it became your preparedness to move out into and succeed in this world. Helping you achieve what you achieved, in spite of the constraints that Friedreich's Ataxia placed on you, was the primary (and perhaps crowning) achievement of the past 27 years - of the second half of my life so far.

But now what? If I live to be 80 I will have spent 1/3 of my life before you were born, and 1/3 of my life being your mother. I still have 1/3 left. You and I filled a whole life into these 27 years. What could I possibly do with the next third that would be anywhere near as important, worthwhile, or satisfying as this past third?

I am going to help Jaime finish your book, and I am going to help FARA find the cure for Friedreich's Ataxia. You wanted to accomplish both those things. So my life will continue to be somewhat Phillip-centered for awhile longer.

I could leave this world tomorrow and feel like I had lived a life-full, because you did. But I likely have this next third, and it would be a shame to let it slip by. It's exciting to be looking at a blank slate and know that I can write on it whatever I want. But whatever I choose will never be as meaningful as these 27 years I spent sharing my life with you.

Your Birth Day

Dear, Dear Phillip;

27 years ago you came into my life ... and lit up the world. You were the most wonderful gift. You not only made me a mother - you made me a much better person.

I have spent all of today re-living that wonderful day when you came into this world - a month early and upside down. I remember the first time I held you in my arms; the first time I nursed you.

I wish I were at home today. I want to be able to pull out your baby book and photographs and re-live that day. I want to be able to go through the cedar chest and hold your Christening clothes and first shoes, and remember the time when all was hope and optimism for your future.

In many ways the beginning and end of your life were so similar; you needed me so profoundly. As an infant you were so hungry and needed to nurse every 90 minutes. The last few years you become so dependent on me for your very sustenance, and it felt like you were metaphorically back at the breast.

In both cases it was exhausting, but I know I gave you everything you needed at the beginning of your life, and all I can hope is that I also gave you what you needed at the end of your life.

I miss you more than I can describe. Happy Birthday my wonderful son.

Mom

Your 'other' wheels.

Dear Phillip;

Your van has a new home. I gave it to a family in Elk Grove who has a 21-year-old son with ataxia. I hope it gives Geoffrey the freedom it gave you all those years.

11 years.

For 11 years the spare key lived in the front hall so that anybody who came by could take you out in it. I would sometimes come home and find the van gone, and know that you were out somewhere with someone. Those were the days.

As I got it ready for it's new family I found so many memories of you. 3D glasses from movies. Parking stubs from hockey games. Receipts from coffee shops or restaurants. Programs from golf tournaments and fundraisers. Pages and pages of Google directions to the places you went. It was like a trip down memory lane. I know that sometimes your friends didn't drive the van carefully :) And sometimes they got lost. And at least once you drank too much and threw up in it! But it always managed to bring you home safely.

Seeing the driveway empty of it reminds me that the house is empty of you, and that is so hard. But I'm glad it is off having new adventures with a new ataxian. I hope it accumulates as many memories for him as it did for you.

I miss you, but I have to trust that you are so much freer than the van ever made you.

Love Mom

Right Here Waiting

Dear Phillip;

Did you have any idea what you were doing the day you asked me to download "Right Here Waiting"? It was just a few days before you got sick. I came home from work and the first thing you asked me was to go to iTunes and download this song you heard on the radio. It's the only song you ever asked me to download, and I don't know if you listened to it after that. But a couple weeks later, when I was going through your laptop looking for things for your service, I came across the file and played it. It was as if you left it there for me. I cried and cried. It was the music we used at the end of your service behind the slide show.

I play it all the time now. It always makes me cry but I need to hear it. I need to know you are there waiting for me, and that I'll be able to hug you and kiss you again.

Thank you for leaving me that gift.

I love you.

Time

"Time heals all wounds" they say, but time is not my friend. On Tuesday night it will be 11 weeks since you died.

The inexorable march of time pulls me, unwillingly, away from you. As I tear each day's page from my desk calendar it reminds me that every day that passes takes me farther away from when I last held you in my arms. I have to reach another day further back in time to remember your smile, your laugh, your sarcasm, your wit.

I don't want to move into the future - the future doesn't have you in it.

Today...

How dare the days grow longer?

How dare the sun call me to rouse with such brightness and persistence so early each day?

How dare the world fill with the colors, smells and sounds of new life?

The flowers call to me, but I don't want to see how beautiful they are.

The fragrance of Easter Lilies is a balm, but the fragrance of a rose speaks of summer, and love, and celebrations; all things anathema to me.

How offensively perky my capris and t-shirts seem, when I would rather be wrapped in the comfort of a cocoon of cashmere.

Even the candle, lit each morning by your picture, seems out of place in the newfound warmth of each day.

Doesn't the world KNOW it should stop?

Don't the birds KNOW they should stay mute?

Don't the flowers KNOW they should wither and fall?

How can it possibly be summer, when my soul is in the depth of winter?

… and no spring is in sight.