I have many quotes I adore. Some poignant, others not so – like Lewis Carroll’s gibberish poem Jabberwocky – “Twas brillig and the slithy toves did gyre and gimble in the wabe..” But one stanza of a certain poem sticks with me. My Dad is 88 years old. He was born in “nineteen hundred and twenty two,” as he says, in his Boston accent. His memory is still keen. And although day to day he might forget something (don’t we all) he recalls dozens of poems learned as a boy in school. Longfellow’s “The Day is Done” is one of his favorites. And I know that one day in the future (distant or near) my sister or brother or I will recite it at his funeral. That will be a sad but fine tribute to a good father.
As a mother who struggles with the reality of having children with autism, whom one day I will have to leave behind in a world that may or may not care for them properly, this stanza has a sharper meaning. In fact, for me, it’s really a prayer. Sure, I’m a Catholic and I have all the “proper” prayers at my disposal. But this stanza speaks to the yearning ache and daily hope for treatment, recovery, cure I feel every day when I look at my girls, and wonder how, how on earth (or in heaven), can I ever leave them? It speaks to a time of hope when I will not have to worry, and I love that.
And the cares, that infest the day,
Shall fold their tents, like the Arabs,
And as silently steal away.
This post was beautiful. I am glad to hear that I am not alone in the solace I find in select poetry, but this post (that incorporated your father and your child) was especially moving. Thank you for sharing and sending you lots of holiday cheer.
Beautiful poem, beautiful post. May the new year bring good things to your entire family.
lovely kim! happy new year and happy belated birthday. xo,a
Thanks, Anne – see, I’m getting older every day. Reminds me of Landslide by Stevie Nicks – a favorite performer. But I have faith and hope – it grows as my fears subside. My girls will be OK because I and countless other parents will create safety and help for them. Autism is parent driven. The large orgs are about the money – from this I know – they see dollar signs and donations. The orgs that sponsor the site I run (www.ageofautism.com) are “kitchen table” orgs – they began around a kitchen table, NOT a boardroom – founded by parennts, not fundraisers. And they are deeply affecting individual families in a positive way. If you want to donate to autism – please conside anyone LOCAL – not the biggest name on the street. Trust me on this. Your dollars will do far more in your own town than in Manhattan. KIM
One of my favorite poems………….Happy New year to All………
Kim you read not for just reading but you like of me absorb the meaning and reflect… it takes teh mind to places far removed from the words alone, places were others have been but not ever took of the time to reflect to the meaning hidden there. while i to be of reflect and it takes of me away from the words it connects to me more than it appears. I to also be of one who struggles with this same fear for self. While to some they read of me as married and legally yes to paper it is of so…. but the marriage of me is of not like typical and is of full of its own differences, but even while i to have of that binding things of marriage to keep of me from being of locked away … I to fear for self of what will happen to me when this binding no longer exists for self … I to fear of going back to institutional settings. My hope in some fashions were of obtaining the self protection of the MRDD, now called DD’s. While I to appear functional in some things the truth is of for self not as functional as I to seem . some see of my words and assume things, some see of my words and reflect on them. with me though I to share often I to be of just a mixed bag of jelly beans. My therapist tells me one of my greatest gifts is of that i to be of a person who lives in the moment and often not let of self go beyond that. it isof true yet, still within me only a partial true.. I to think on much things but have no means to know of how to express and or preplan how to prepare for things outside of that moment to moment living. but I can be of to type out some of those trapped expressions if given a key board it alters my means of living to a functional illusion.
Hello, Sondra. Friends and readers, Sondra is a friend of mine, she is a wonderful Mom and Grandmom to a beautiful baby, and herself has autism. She is insightful, kind hearted and as you can see, has a unique syntax to her writing. She is a speaker and advocate and as the Mom of girls on the spectrum, I so admire her and hope that my girls can be like her.
Please welcome Sondra to The Deb Ball.
KIM
Something we all think about as Mothers, Fathers and grandparents of children on the spectrum. Kim, I’m not sure if its because I can relate to your personality or your situation. Either way, I LOVE this and will keep it near by. Thanks for all your writings. You and Sondra brought a quiver lip to the forefront this morning. May angels watch over you my friend.
When I am gone, I know that I will no longer ~know~ in a real sense what is happening with my son. With Autism comes daily worry and very hard work. Constant preparation for the future for him.
Sondra, I envy your ability to be ,in the present,in the moment,it is a gift that you deserve.
Kim, I envy your fathers ability to recite beloved poetry. My mind is full of repeated children’s books, and programs. I quote Sponge Bob and Thomas instead of Longfellow.
The quote I hope to be remembered for may be….How could I not. This is what I say when people say to me…I don’t know how you do it, or I could never do what you do.
Beautiful post, Kim. And welcome to the Ball, Sondra.
Kim, I wish only the best for you and your family. I have no doubt your girls will benefit forever from your strength and wisdom. You are paving the path for their future.
I’m curious — I was at watching a repeat of Larry King last night, and Jon Stewart was on talking about his Night of Too Many Stars benefit for autism. I know they raised a lot of money, but given what you’re saying about big organizations, I’m wondering… do you know if it was successful in terms of getting that money to the people who need it most?
Well, according to the 990 form, in 2009 they gave $9 million in grants to government (federal agencies) and $50,000 to individuals. Sigh… Salaries in the kitchen table orgs? 25K a year. Salary for big guys? $300K. They spend more on paper clips than other orgs have in total.
Thank you for a beautiful post, and a great site to dive into!
Reading this made me realise how most of my cares are related to my son’s journey. I can’t work out whether it’s a success or a failure that one look at his happy face would have you think he hasn’t got a worry in the world.
I’m planning to spend the rest of my life helping Billy to handle his cares (while frantically taking notes behind his back) so when the time comes to pack them up he can do it, and move on, with ease.
Lovely thoughts, Valerie. Lovely. KS
Kim thanks for the nice words to me here. I to be of a fan of you words often. To my one friend here “fuller”, I to so much wish you the things you seek in this life, you are of a good mom, it shows in you sons constant smiles. I to not want of to see you good heart go of to a place of bitter no returns… it is of a scary place there. when one fills of the heart with too much angers, and or hurts and or fears it causes of the soul to weep in a locked in fashion that can come to a place of bitter hearts… there is of too much of them out of there to this world. they are of people who assume things and attack others out of their own angers, fears and struggles. I to understand of you pains, fears and such as a mom person over you son. I to have always known of you as a much gentle caring soul. that is of a gift you have that causes of me to like of you , like of sunshine that is of right in the early part of day in the summer. please not let of this metaphorical cloud of fear over shadow the good of you heart for you son. have seen of this too much and it makes of me so sad for families to see of them lose everything even essences of thems won being over the monster of things autism can bring to the live of families and the many many painful medical things autism brings to those living with it, but at the same many with autism do and can be of happy , and live of loved lives and some even reach of a much higher end and can have of jobs and work and make of friends. I to be of not ever got to that level but did find of parenthood for self. that was of a good things even though it was of a much hard things. yet if knew and un derstood about life things would not have chose of this life for self , would prefer of not being of autism but since I to not chose it , and it chose of me have of to learn to live of the life given to teh best of my ability.
kim I to be of a nana yes to Delaney age of 4 probably mild aspergers, and to Kyleigh age of 1 so far typical developing but has sensitivities and sensory issues.
sondra
kim also forgot to say with my OCD like issues I to be of get of you book each time I to be of in a book store and set it to the top shelves facing out, I to sometimes too take the book to other areas of the store where it should be of at like autism sections, psychology sections, new release areas and such things as this. a fan working behind of the knowing of to promote of you book , the people I to got the book for , for christams loved of it.
Thank you, Sondra! The great book shelf switch is an excellent way to get my book noticed. I won’t tell a soul! 🙂
I to keep hoping the store clerks will not get of mad to me for it and say to leave…. but so far no one has told of me to stop and or not do that so will continue to do of that.
What a beautiful, beautiful sentiment. Thanks for sharing it!
Tawna
Our ADHD. boy who also has Aspergers Syndrome does adequately academically during school nonetheless our son lacks virtually any buddies. He would rather spend hrs using the pc as opposed to dealing with another child his age. Whenever he is pushed to be among boys and girls his own age, he grumbles a great deal and appears to be extremely uneasy. He states other children loathe him and call our kid creepy. My own heart and soul breaks for him. While i see our son relating to some other children, he doesn’t seem to possess the required social skills.