I walk past my son’s room and tread lightly–he has always been a fitful sleeper–several nights in a row now, when darkness comes, and then I remember, stupidly, foolishily: he is not within. Last night I did not hear his tender snores as I walked past at four in the morning on my way to a long, cold drink of water. I stepped carefully in habit, heard nothing, kept walking then.
Always, my son made noise: piano playing that made the dog howl, musical toys day and night, CD’s on the player in his room. Together we kept the songs coming day and night. Even at two in the morning sometimes he’d awaken and awake me. Bouncing in his bed, yakking, laughing or telling himself some joke perhaps.
The last day of his life, my son fell strangely silent. He did not tell me that he was in pain or discomfort. Instead, he followed me around the house and said, “I muh mum mum,” asking for me but otherwise keeping to himself. Asking for me but separate. We shared this I guess, he and I, the ability to stay quiet with each other when it mattered.
I wish my son had spoken, that he had told me, “I need you, something is not right, I’m going now.” Instead he sat, he swung, he reached up to me and I carefully placed him where I thought he belonged–in a swing, the carseat, his bed, a stroller.
These are the moments then, of an end. They come to me afterwards, only when I think back and recognize them for what they are. At the time, I simply thought he was going within. I never knew he himself was telling me, in his own way, goodbye.
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Comments 58
this is really beautiful
i got about 2 sentences in and started to cry.
peace and sending out a huge hug to Evan and you and yours
Posted 31 Jul 2008 at 5:50 pm ¶I am so sorry.
Posted 31 Jul 2008 at 5:52 pm ¶Thank you so much for sharing this.
xo
Kate
I as I read these last two paragraphs I can feel your pain with a child trying to communicate to his mom and not be able to convey what he was feeling and needing. As one of my 2 sons with autism is non verbal also.
Posted 31 Jul 2008 at 6:07 pm ¶I am so sorry for your loss of your wonderful son and for your pain your are experiencing.
Please take care of yourself.
Love to you~
God bless you and your family. I weep and I ache for you as a mother.
Posted 31 Jul 2008 at 6:14 pm ¶crying now as i read your words.
so beautiful and heart wrenching.
Posted 31 Jul 2008 at 6:51 pm ¶Vicki, this brought me to tears. Beautiful. Heartbreaking. Sweet Evan. Sending you a hug.
Posted 31 Jul 2008 at 7:10 pm ¶I have been thinking about you and wondering if you would post. Posting, considering everything you are going through shows your strength. You are a writer and I imagine it will continue to be great therapy and a way to continue advocating.
I can not help but cry reading this. I know that feeling but not to the same degree. When we lost M to foster care at 6 months we were told it was over, we would never see her again. I closed the door to her room and kept thinking I had to go check on her, feed her, etc. I heard her crying and thought I was losing my mind. I forgot she was not mine anymore. As you know she was sent back to us eventually. But for months we thought it was done.
Losing her again is my biggest fear in my life. I am learning through you. Many people are. You have strength and will bless many others who have lost or who will lose a child.
I am praying for you and your family daily.
The other thing that strikes me is how our children sometimes can not communicate pain and discomfort. That has been a huge problem for M. It always worries me.
Your post is beautiful and I can’t stop crying over it. It is so hard to know what to say in situations like this. Sending love.
Posted 31 Jul 2008 at 7:41 pm ¶I am so sorry for the loss of your beautiful son. I also lost my son - on July 29 last year. I was his caregiver for over four years as he battled cancer. Now, the caregiving is over. That is its own loss as well, as I am sure you are finding. I am finding no words of wisdom to share - simply wanting to tell you that I am sorry and that you are not alone.
Posted 31 Jul 2008 at 7:42 pm ¶Simply beautiful. We so often wish we knew when our endings are occurring, but so rarely do. This is a beautiful piece.
Posted 31 Jul 2008 at 7:43 pm ¶Thank you for your words, Vicki. (Like a beautiful postcard from that far off place of grief.)
Posted 31 Jul 2008 at 7:50 pm ¶He wanted to be with you. You were much loved by him.
And as any mom would do you thought you were doing the right thing at the right time. I have no doubts you kept him close that day.. That you were as loving as you always were.
I am so sorry for your unimaginable loss..
Posted 31 Jul 2008 at 8:14 pm ¶Oh Vicki. Vicki Vicki Vicki.
Posted 31 Jul 2008 at 8:34 pm ¶Your powerful, poignant, beautiful writing never ceases to amaze and move me, and even more so now. I hope that the writing of this will help you in this most inexpressible of losses. Somehow you ARE expressing it, and it is so beautiful and filled with love.
I am so very very sorry for your loss. Truly. I am at a loss for words in the face of this vast loss. Thinking of you and yours, and will go to the swings tomorrow with some flowers for Evan’s memory . . .
Posted 31 Jul 2008 at 8:39 pm ¶all love~
Posted 31 Jul 2008 at 8:40 pm ¶Dear God. I only just found your blog, alerted by Ericka Lutz. My own special needs son was born six months before yours. I am so very, very sorry. Thank you for this heartrending post. From one mother to another, my love and my prayers to you.
Posted 31 Jul 2008 at 8:46 pm ¶Words escape me, but I wanted you to know I was here bearing witness to your story, crying all the way through it.
I am so sorry for your loss.
Posted 31 Jul 2008 at 8:56 pm ¶I am so sorry for your loss. I cannot read this post without crying. I don’t know what to say but know that you are in my thoughts and prayers.
Posted 31 Jul 2008 at 10:16 pm ¶I’m so sorry Vicki.
Posted 01 Aug 2008 at 1:47 am ¶Thank you for writing again and sharing this with us. I like picturing Evan in your arms. I hope you’ll always be able to feel him there.
Posted 01 Aug 2008 at 1:57 am ¶I feel torn apart for you. My tears flow freely for you and this little boy that I have never met. I am so very sorry for your loss. Your love for him is beautiful.
Posted 01 Aug 2008 at 3:00 am ¶Having trouble typing through my tears. Beautiful and heartbreaking.
Posted 01 Aug 2008 at 3:21 am ¶Oh, Vicki, this is heart-breaking. What great love you and Evan shared. Thank you for sharing it with us as well.
Posted 01 Aug 2008 at 4:04 am ¶You have been in my thoughts all week Vicki. My heart breaks for you and your family. Thank you for sharing this with us. I will keep you and your family in my prayers.
Posted 01 Aug 2008 at 4:36 am ¶Wow. I wish I had stumbled upon your blog sooner. Those words were so beautifully written and honest. Thanks so much for sharing.
Posted 01 Aug 2008 at 5:04 am ¶I have two boys with autism. One higher functioning and is expected to be more “normal.” (whatever that means). The younger one? We have no idea. Like you, I often wonder what will happen when he is an adult. I get scared and hopeful at the same time.
I am sorry for your family’s loss. You are in my thoughts and prayers.
I simply cannot imagine the pain you are going through and how you manage with such quiet dignity but I am in awe of it. I wish only good things for you and yours.
Posted 01 Aug 2008 at 5:23 am ¶Wow, what a beautiful expression of your experience. Thank you for sharing it with the blogging community.
I am so sorry for your loss, I am thankful for the memories and time you had with Evan, and his time with you.
Posted 01 Aug 2008 at 5:52 am ¶The words won’t come yet so I am simply sending love. So much love. And prayers each night as I stand over Nik, watching him sleep. I pray for peace for you and all who love Evan. xo
Posted 01 Aug 2008 at 6:51 am ¶I am so glad that you have this outlet. I hope that peace finds you, somehow. I know you have a long road ahead of you. We will be here.
Posted 01 Aug 2008 at 6:55 am ¶I am so sorry. I read that you were out of town just recently, and I am glad you were there for your son’s last days. I hope you keep writing.
Posted 01 Aug 2008 at 7:13 am ¶Hi - I am new to your site, came by the way of some of your friends who spoke about your family’s tragedy on their blogs. Words feel useless, but I have been thinking about you a lot, and hope that your friends, whose words are surely more coherent and meaningful than mine, will help hold you up during this terrible time.
Posted 01 Aug 2008 at 7:24 am ¶I am so sorry. I am at work and crying at my desk. Evan was very loved. May he have a restful sleep at last.
Posted 01 Aug 2008 at 7:38 am ¶I knew this post would come, and I cried through most of it. Because Jenelle is non-verbal as well, I wonder if I too will pick up on her cues when they are needed the most.
This sentence:
We shared this I guess, he and I, the ability to stay quiet with each other when it mattered.
This is the case with us as well. I truly know when she is hurting, because that is when she is the most quiet.
You remain in my thoughts and prayers. Sending huge hugs for peace within.
Posted 01 Aug 2008 at 7:42 am ¶Vicki, You are not only Evan’s mom, but Evan’s voice to the world. Ben
Posted 01 Aug 2008 at 7:57 am ¶Thank you for this.
Posted 01 Aug 2008 at 8:27 am ¶So very sorry to hear of your loss.
Posted 01 Aug 2008 at 9:22 am ¶My heart just aches for you. It’s a beautiful, painful post, and I thank you for sharing it. Evan’s memory will live on, and he and you will continue to touch lives.
Posted 01 Aug 2008 at 9:46 am ¶tears at my desk with you this morning. these words are so beautiful, so touching
i have Evan’s picture here and having not met him until only a few days ago…i feel so affected by him and so blessed to now be connected with your writing that speaks to humanity in such a poignant way.
warmest thoughts and prayers
Posted 01 Aug 2008 at 9:58 am ¶The fact that you wrote this shows how amazing you are.
Posted 01 Aug 2008 at 12:57 pm ¶Vicki, You and your family continue to be in my constant thoughts and prayers. Thank you for sharing your beautiful writing and your memories of Evan with us–including many of us who know him only through your exquisite tributes to him and glimpses of your parenting journey. Evan was so blessed to have you as a mom. Love and peace to you.
Posted 01 Aug 2008 at 1:08 pm ¶No words from a stranger could possibly carry you through any part of this dark time you are traveling right now. Perhaps a tiny bit of solace knowing that through your unselfish sharing of you beautiful son,that you touched countless others like myself,he touched countess others, like myself. May the love of family and friends be your light during the darkest of moments, may the grace of God carry you in your times of doubt and fear, and my the spirit of your beautiful boy dwell within you and strengthen you when your weary. Sending you peace and prayers from another Southern California family.
Posted 01 Aug 2008 at 1:43 pm ¶Vicki,
Posted 01 Aug 2008 at 2:17 pm ¶I have been checking your site often, waiting to read your words. We have never met but I have read your writing for a long time. Know that so very many people hold you and your dear family in their thoughts.
oh… ugh… pain… tears… I feel it deep inside me and it is an actual physical pain. I am so sorry for your loss.
Posted 01 Aug 2008 at 6:58 pm ¶I am glad you had some time together for that last day.
Thanks for sharing this, Vicki.
Posted 01 Aug 2008 at 7:42 pm ¶Oh Vicki.
Posted 01 Aug 2008 at 8:01 pm ¶Sending you love.
This is heartbreakingly beautiful - literally.
Posted 02 Aug 2008 at 6:42 am ¶No one out here is forgetting for a second. As days will pass, and blogs will tackle the mundane topics again, still we all will be remembering. As years will pass, I will still be remembering, and we do not even know each other. Your words and your love for your son are out there, and they live on and on and on, even though he is no longer here with us.
I am sad. But still you inspire hope.
I add my thanks to the rest. We are grateful for you, we are here for you. We are with you.
Posted 02 Aug 2008 at 8:06 am ¶I am so very sorry, Vicki. My nephew died three years ago of cancer, and it devastated our family–especially my non-speaking son DJ. When my sister-in-law visited the following Thanksgiving, still grieving deeply, my son took her by the hand to his labeler (what he uses to communicate) and typed, “Do you have reasonable people to help you with your hurt?” I had just taught him the word reasonable in the context of his perseverations. He wanted ME to wear the same clothing every day, not just him. “Be reasonable,” I shouted. We were all dumbfounded by his use of the word in this context. A boy who had lost everyone–we adopted him when he was six–had reached out to his aunt. And then, as if to lighten the moment, he typed when she smiled, “It makes me reasonably happy to see you reasonably happy.” My sister-in-law, we later learned, took those labeler strips and kept them in her purse. On the really bad days, she’d pull them out, telling herself, “If DJ can move forward, then I can, too.” I wish you all sorts of reasonable people to help you with your hurt. I marvel at your dignity and strength.
Warmly,
Posted 02 Aug 2008 at 9:54 am ¶Ralph Savarese
oh my. i am weeping for you. with you.
that last day is a gift for you. he could tell you, and did tell you, goodbye.
he asked for your love. you gave it.
it is not fair, it is not right, i am so sorry.
Posted 02 Aug 2008 at 9:27 pm ¶My heart is with you. So very, very sorry for your loss.
Posted 03 Aug 2008 at 9:56 am ¶beautiful and telling, as always. Thinking of you from afar…
Posted 03 Aug 2008 at 4:27 pm ¶You are blessed and a blessing.
Posted 04 Aug 2008 at 7:40 am ¶I’ve never read fewer, sparer words so packed with emotion and meaning. Heartbreaking and beautiful at the same time. I so feel for your walk by that bedroom door and for your family’s courage through all such moments.
Posted 04 Aug 2008 at 8:14 am ¶I ache for you. I’m so sorry for your loss.
Posted 04 Aug 2008 at 9:38 pm ¶I’m such an asshole, because all this week I’ve been going crazy dealing with my son’s vocal tics. “The constant coughs! They’re driving me nuts!” But then I remembered that he’s alive, and that’s what I need to remember. And then I read this, and I just feel like a shit.
I’m so sorry for your loss. I really really really am. I will be sending something more appropriate in the mail.
I know we didn’t talk much at Blogher, but if you need someone to talk to, please email me. My phone # is right there.
Andrea
Andrea.Paventi@Gmail.com
(Andrea Frazer)
Posted 05 Aug 2008 at 7:50 pm ¶Vicki -
Posted 06 Aug 2008 at 12:52 am ¶I have only just arrived, and I am sorry for what and whom I’ve missed here. But - for now, thank you for this beautiful bit of perspective.
This post is stunningly beautiful and heartbreaking. I weep for your loss.
Posted 06 Aug 2008 at 7:00 am ¶I have no words to offer, only tears of sympathy.
Posted 06 Aug 2008 at 9:47 am ¶Thank you for sharing your thoughts and feelings. It puts life in perspective for all of us.
Posted 07 Aug 2008 at 7:38 am ¶Post a Comment