The Fixer Upper


On a recent trip to Lyon, I was exploring the city ,walking about on a cool and drizzly day. It was early afternoon and many of the shops were closed but, as I prefer window shopping to the actual activity, the time was spent in a most delightful fashion. And then I came upon this shirt with its English language slogan in an inexpensive lingerie shop window. “Oh no.” I thought, “It is everywhere.”

I believe that there are few things as inhibiting of spirit, creativity and growth as this drive to be perfect and I realize how much energy I have wasted in its pursuit and how much sadness I have created for myself in this, the most futile of all quests. Saddest of all, there are the many things that I could have done blissfully had I not had that inner dictatorial voice in my head hectoring me with “But is it perfect? It must be perfect!”

I grew up in a time when “standards” were something still talked about as an important thing to indoctrinate children with in their rearing, and I was indoctrinated quite well. This insured that my childhood was spent anxiously aware of where” the mark” was and whether I was hitting it or if I was falling short. Hitting the mark felt like it was very high stakes, do or die. Like anything else, there was a plus side to this. I was a high achiever in school, a hard worker in any job I was asked to do and, until I rebelled with gusto in late adolescence , an exceptionally tractable child. It also served as a sometimes useful counterweight to my native personality which is impulsive and dare I say it .. downright slapdash. Raising a child with impossibly high standards is undeniably good for society but it was I think a very mixed blessing for me.

All of this is in the forefront for me now as we, once again, try to envision our daughter’s life for her.

My daughter’s life, what it is, what it has been and what it will look like in the future is never far from my thoughts. When you have a child with special needs, this is always true, sometimes more so than others. While my friends with typically developing adult children sometimes wholeheartedly wish they could in fact plan their children’s lives, the reality of having that responsibility , a responsibility that extends even after your own death, can feel immense.

One of the things that it is recommended you do when you are a parent in this situation is to write something called “A Letter of Intent”. This document, while not legally binding, outlines your hopes, wishes, and by corollary , your fears, for your child’s life after your death. It is an auxiliary to your will and trust and it serves as a guidepost to the folks who will be there advocating for your child when you are no longer there to do it. The document needs to be updated as your child and circumstances change, ours is overdue for a rewrite. Much has changed in the five years since I wrote the last one. I put it off for no other reason than it is very,very hard to think of my daughter in the world without my love and direct protection even though I have the utmost faith in those we are entrusting to be there for her with love and discernment. But it is time, past time and so , I will do it now. I know I must.

Prior to the actual writing of this document though there is always a time of allowing a mishmash of ideas to float around and bang up against each other until, finally, a true intent can be crystallized and communicated …and one of these ideas right now is around the idea of perfection.

My daughter has had a lifetime of therapies, from many different disciplines and of many different sorts. Therapy, of any sort, starts with the premise that something is broken and that something can and should be “fixed”. I wonder what message that sends to a person over a lifetime, in particular, of course, I wonder what message that has sent to my daughter.

It all comes from love and concern of course. What responsible parent doesn’t try to marshall all possible resources and tools to help their child? Time, money, difficulty are all as unimportant as that parent’s own resources allow them to possibly be. When we were young , struggling financially and over extended in both energy and time , the money spent didn’t matter, the hours in waiting rooms and in consultation didn’t matter. Only one thing was important and that was making sure our daughter had available to her every single possibility we could possibly provide. The bottom line? The lion’s share of all this therapy, decades of it performed by a virtual army of dedicated and highly gifted therapists, has not actually resulted in a fuller life for her as far as I can make out. Then again, hard to prove a negative, would she be in worse straits without all of it? Who can say? I hope it is true that it has helped.

She is a grown woman now and here is the question that I am dealing with before I can put metaphorical pen to metaphorical paper and write this important document. When is enough enough?

At what point can she just breathe and be who she is? At what point does she have the right to be exactly who she is and not have to work so very ,very hard for that next goal? At what point does she deserve to be done with being shaped and molded from the outside? When can she cease being the “fixer upper” and just be the shining soul she is and has always been? My sense is that the answer is now. She has worked so hard for so long, she deserves , make that ,has earned the right to just be.

But, and here is the rub, what if there is that one thing, the one thing I don’t know about yet, and might not even exist until after my death, that might unlock doors for her, that might give her ease in her life, that might add sparkle and joy to her existence …and it can all come to her with a huge expenditure of effort on her part, with just more therapy? Or not. It might be just one more impossible mountain she is asked to climb. But there is that chance, however small, that it could work…

What then?

What do I advise about this in my letter of intent?

I haven’t a clue.

This entry was posted in A well lived life, Family, Parenting a child with special needs and tagged , , , , . Bookmark the permalink.

12 Responses to The Fixer Upper

  1. Jeanne Leonard says:

    Hi Chris,
    Your letter of intent is so heartfelt, so touching and so painful. Your fears, concerns, hopes and wishes are so powerfully written that I don’t know what to say, except that I love you and no choice that you make can be so wrong, because she will shine through it all.

  2. Suzanne says:

    Hello Chris,

    Once again, you ask the hard, essential questions in a way that makes them impossible to ignore, and reminds me of work that I too need to do. Though there may be no clear answers, your thorough, insightful probing always brings invaluable results. Perfection is an impossible goal, but you continue to hold yourself to high standards, especially in regard to your mothering.

    with love,


  3. Carol says:

    Dear Chris, I’ve known you for a few years. Ok – decades…. but maybe better in these last 15 -20 years…when I was hoping to become and then, by some miracle, became a mother myself. I would NEVER use “downright slapdash” to describe you, sister.
    Loving, fierce, formidable, caring, empathetic to the nth degree, incredibly strong and yes, holding yourself to a very high standard… but never a bit slapdash!
    Thanks again for sharing your journey of motherhood, your thoughts, fears and insights that continue to make me stop and take time to reflect on my own journey.

  4. Oh Carol, thank you so much! I have loved witnessing your journey in motherhood and observing all the qualities you have that you so generously attribute to me !

    Nothing can make me happier than when I hear something in one of these blogs begins something else in the life of someone who has read it, thank you so much for telling me that, it means so much to me.

    You’ll have to trust me on the slapdash piece, I must cover well , but then, of course, there was all that early training 🙂


  5. Robby Levy says:

    Beautiful you! I can’t adequately pen my response as you don’t have the time to read it, based on my email missives. I can tell you this, for what it’s worth, from the perspective of one individual who undeniably has lead a charmed existence. I would always advocate for “the shining light.” I am not a perfectionist, was not raised as one. It was always the journey, the ride, the gratitude for what we have, the recognition of life being a blessing, that we were raised to honor. Maybe that is typical as the child of a holocaust survivor. Your daughter is who she is, as you say. If her place on this earth is happy and filled with all that she needs to define her own happiness, that is what I count as important. In my silent prayers at night; in case there is a G-d, I always pray for my family and friends that they may be safe and out of harms way, that those they love will be blessed and that they are happy in their own skins. No judgement on my part. For your beautiful girl, I would only ever say the same.

    Love you..just my thoughts


    • Dearest Robby,

      Thank you for your thoughts , we are on precisely the same page. I just ,and I mean just , as in five minutes ago, finished writing The Letter of Intent. 6 hours produced 11 pages :). .. and decided to check in on correspondence and here you are!

      One ends these letters of intent with your wishes for the person on whose behalf you are writing. I found I had one only and this is how I concluded;

      It is our fervent wish that (our daughter) feels loved and safe all the days of her life.

      Love to you Robby and thank you!!


  6. cate says:

    As always, your profound thoughts on paper stir up a lot. Your generosity of spirit in being willing to share these thoughts with your readers is a gift. I know you have taught me to consider things differently, to go into a different place as a parent, than I would have otherwise. Your daughter is lucky to have you, we all know that. But, so are we….

  7. My dear Cate,
    Thank you so much and I learn as much from you !! You are such a wonderful Mom.
    Writing things down helps me think them through and it is such a huge gift to me when these thoughts feel like a gift to someone else. Thank you very much for letting me know :).


  8. StarStruk says:

    No easy answers to such a crucial, life-affecting document…glad to hear you managed to get through it…

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