June 21, 2010

Love Letter

Posted in AMT's Faves, If You Need a Good Cry, My Take on Autism tagged , , at 9:16 am by autismmommytherapist

Dear Justin,

I trust this letter finds you happy and healthy. I hope by the time you receive this I will have been gone for many decades, that this last missive in your mother’s attempts to parent you from beyond the grave will be delivered to you when you are old, but still well. Forgive me, but really, why should death preclude me from continuing to control everything?

You may have been wondering all of these years why your brother periodically reads passages to you from me, although if I’m honest I know he’ll never be certain how much you really understand of what you hear, how much of the sentiment of what I write will pierce through your autism and nourish your soul. The idea to pen this series of letters came to me years ago when I read about a young mom, tragically afflicted with terminal cancer. She created videos for her toddler daughter to be spaced throughout her lifetime so that her child would know her just a little, and would at least bask in the certainty that her mother’s love did not end with her death. I wrote all of these letters instead of videotaping myself because I feared that seeing me would confuse you, perhaps incite you to ask for me post-mortem, the thought of which I emotionally cannot bear. I wrote the lion’s share of them before I grew truly ancient, because although most of your great-grandparents lived to be almost obscene ages, you never know when it will be your time. I didn’t want to be caught unprepared.

Planning was your mother’s forte.

It was my fondest desire prior to relinquishing my physical self to the mortal world that your last decades on this earth would be productive, safe, engaged. I am certain that your poor little brother, whom I have pestered innumerable times over the last twenty years to watch over you, will be your stalwart companion, your protector, your friend. You two have always been close in your own unique fashion, a fact I attribute far more to your inherent interest in one another’s well-being rather than any scenario your father and I were able to construct over your collective childhood.

For over forty years I have watched him teach you, defend you when necessary, and stand up to you when the situation called for it as well. We tried to promote a bond between you, to make Zachary see that the gifts that came into his life as a result of your autism far outweighed the burdens that inevitably resulted from it. He has assured me many times that in its own way autism enriched his experiences, imbued him with patience and a facility for compassion he would not have possessed otherwise. He has also shared with me that no matter what the disorder taught him in his life, he will always wish for you that autism hadn’t completely overwhelmed yours.

I understand how he feels.

When I was a relatively younger woman I once read an article about a study conducted in the extremely isolated regions of Sweden, one which contributed to scientists’ collective understanding of the study of epigenetics. After following many families of farmers during several successive generations of feast or famine, the scientists realized this one incontrovertible truth: that everything those farmers ate, smoked, drank, and accepted into their bodies became an integral part of their DNA, their gift to bestow upon future progeny. It turns out that even the choices we make for ourselves prior to our childrens’ births have irrevocable effects, leave lasting impressions on the arc of their lives.

It is my most profound hope that coupled with the choices I made that my love for you, which began long before your cells divided and multiplied in the floating sanctuary of your personal test tube, was passed down to you as well. I hope the strength of my commitment to you became mired in your DNA, a permanent fixture in your cells, a cocoon within which to wrap yourself since I’ve been gone. If there is any vestige of justice left in this world, the differences in your brain will not have permitted you to fully mourn me, to experience the anguish I would have felt at your loss had you gone before me. Instead, I hope you have only remembered the love we had for one another, that unbreakable connection that with luck has sustained you, enveloped you when you were sad, these decades past. I choose to believe that in some fashion I have remained with you, that our bond to each other has transcended death.

So, as I’m writing this last love letter to you I will have to summon some modicum of faith, permit myself to trust that your middle-aged years, your descent into the realm of the elderly, and your arrival there have been for the most part a journey encompassed by hard work, various social opportunities, and frequent visits from those who remain who love you still. I have requested that your brother leave these letters bound in a book for your caretakers to peruse, with each entry marking a new passage in your life, an acknowledgement that you yourself are moving closer to your own final moments. I hope the people who have cared for you, fed you, clothed and housed you, and at the very least enjoyed you to some degree, have read these on occasion. Photos tell a story, but nothing paints a picture more illuminating than words.

If my wish came true, and in their few idle moments they were able to reflect upon these letters that I have left for you as solace and succor in your remaining years, I hope those who live with you will understand this. That before them is an old man yes, one who can intimate an entire conversation with his eyes, but cannot emit one with his mouth. That this elderly gentleman is quite contrary at times, but can be reasoned with, does comprehend the subtleties of demand and request, and will comply in his own time. I hope they fathom your innate intelligence, push you always to accomplish more, solicit from you your best self in all domains. You are capable of so much. I hope that fact has been recognized, and honored.

Finally, my deepest desire in creating this legacy of your life is that your care-givers will be cognizant of how loving you are and were, how affection was always a staple of your personality. I hope my words will convey to them how demonstrating your love for those in your inner circle dominated your days. I wish them to see that once you were an adorable child, toddler, and infant who always eventually conquered his anger and his incompatibility with the typical world with a mighty hug. I hope that my anecdotes of your childhood, the extra time I had to build into our morning routine for your embraces, the way your arms would encircle me at night as I sang your baby song to you and you patted my shoulder in appreciation, will stay forefront in their minds even when you are difficult. I pray that they will see you as a whole being, an entity capable of the full range of human emotion. I hope they will have loved you, even a little.

I do not believe that we will see each other again. Unfortunately, although I’ve tried, my mind has not afforded me the comfort to fully embrace that belief. In the end I think my lack of faith in the afterlife was its own blessing, as it continually pushed me to make every moment we had together count, to elongate and enrich our connection as often as possible. Believing death to be a permanent sleep, which I am certain I will enjoy, made me a better mother.

I have long ago gone into my “good night”, and I wish you safe passage into yours. I will say to you what I whispered in your ear every evening I cared for you, whether you were infant, teen, or grown man. I leave you with this, my forever sweet son.

Sleep well, Justin. I love you with all of my heart, and all of my soul. As always, you are my good boy.

Rest.

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24 Comments »

  1. Mary Craig said,

    Oh my gosh crying!!!!! The worries we Autism moms have for the future that other parents just can’t understand.

  2. Kristin said,

    Oh wow….I can’t imagine the strength it took to write this. This is something that I have a hard time thinking about for even for a moment. Gonna need more tissues……

  3. Chad said,

    Berlee–

    You win–another heart tugging read.

  4. Jenn said,

    Oh my. Never ever enough Kleenex around here!
    Very powerful words from a very powerful mom.

  5. LZ said,

    I used to keep little bound journals for each of the boys before Raif died. I am not qute sure where they are right now, but you have just inspired me to dig them out, dust them off, and start writing again.

    First, I have to find my tissue box…

  6. Mom said,

    There are no words to describe my tears at this moment. When you were four and your brother’s birth was imminent, I had similar fears–that having had a difficult, critical experience with your birth, that I would not live to see you grow into the wonderful woman that you have become. I too, wrote you and placed the letter in your baby book for you to read when you were a teenager — just in case. I knew in my heart that you would understand my words and my intent. Justin knows everyday that he is loved by his family, and in my heart I know that Zachary will care for and love him always. Zachary already shows such compassion for others, and loves Justin dearly. That is because you and Jeff have demonstrated that love and compassion to him. I do have faith that we will all meet again. Just like when I sing my lullabye to Justin and name all who love him, on earth and in heaven. I can’t say that I understand God’s plan, why some have to struggle so much more than others, but it gives me comfort to know that perhaps some day I will.

  7. Kathy M said,

    That letter broke my heart…

  8. misifusa said,

    Wow…you have rendered me yet again speechless. xo

  9. Nels said,

    Oh my god Kim, you brought a grown man to tears. So very well done.

  10. Amy said,

    That was so beautiful, Kim! Can’t write more – crying my eyes out!

  11. Jennifer said,

    that letter is heartbreakingly beautiful Kim.

  12. Libby said,

    Okay. Add me to the list of bawling parents. You are THE most amazing writer. I’m going upstairs to throw my arms around my sleeping babies. You really, really nailed it, Kim.

    • I appreciate that Libby, please immediately go have some wine and watch something funny on tv. Can’t stand the thought of making you cry!


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