For more than half of my life as I blew out my candles, I only had one wish. I wished for Katie to no longer be hungry.This was my constant wish, not just for candle-blowing time. Now she isn’t. My wish came true, not quite how I had imagined it would, but it came true. Tonight, at age 57 I needed a new wish. It came to me quickly. I wish everyone would have the opportunity to fully understand how much they are loved. It is a humbling feeling, one which will have you thanking your lucky stars, Almighty God, or your deity of choice. Every day since Katie died earlier this year, I have experienced love, care, and generosity from family, friends, neighbors, and almost strangers. There are so many people I have not yet thanked, so if you are reading this and have heard nothing from me, please know I am eternally grateful for whatever you did or provided for me. The magnitude of the love is overwhelming and inconceivable. It is also completely palpable. Grief is the hardest thing I have ever done. I was completely unprepared for grief. I have often stated, and still believe I have been in mourning since Katie’s birth. I mourned the child I expected her to be, the child I had planned on having and raising. She wasn’t who I was anticipating. That form of mourning did not prepare me for the slap in the face, punch in the gut mourning in which I am currently engulfed. I vividly remember the lecture and book by Kubler-Ross, but I don’t remember ever once being told how physical the grieving would be. I know I was never told that somebody who loves me would do my laundry or dishes or carry my purse and open my doors because I simply have no strength. Often I feel like a pile of tar in the middle of a Disney World parking lot on a 110 degree day. The Disney World reference is intentional, because I often think the rest of the world is running on Disney happy place steroids…..while I am the tar. People have been able to temporarily love me out of the tar state. Love has been made visible to me. I don’t wish the death of your child or any other calamity which might be the opportunity for you to realize the depth of love others have for you, so instead I wish you would be open to love whenever it knocks on your heart. Watch for love. Recognize love. Accept love. This I know…wishes come true. Allow yourself to be loved. Allow others to love you. It is, after all, my birthday wish.
This is a look at a term that lives within me. The first time I heard it was when Katie was a baby and I read the book ANGEL UNAWARE by Dale Evans . The way she described it made relief wash over me. I realized that my feelings were not irrational. That the sadness and grief could co-exist with thankfulness and gratitude. Knowing that the sorrow was chronic and could surface at any time, but especially at times that would usually be times when major milestones would have occurred has helped me to put my devastation into perspective when it happens. I’ve always said there are times that feel like I’ve been hit by a Mack truck, well those times are usually when the chronic sorrow rises up and shows it’s ugly head. I just wanted to share this with you so that you will now have an explanation of all those times you have needed to comfort me and for all of the times that you will in the future. Thanks. lots of love~~~~~~~it truly is my dominant force.
I borrowed this description from a newsletter from the Hydrocephalus group…..I liked the way they explained it…….so if you are interested :
“Chronic Sorrow is a term coined by sociologist Simon Olshanshy to describe the long-term reaction of parents who have a child with a disability. This pervasive reaction is often not recognized or understood by those around the parents–professionals, family and friends. These feelings of chronic sorrow are normal and to be expected and accepted, given the life-long implications for the family and child.
Many factors can affect the intensity and exhibition of chronic sorrow: the parent’s personalities, the severity of the disability, the nature of the disability and the adequacy of support and services provided.
Chronic sorrow does not mean that the parents don’t love or feel pride in their child. These feelings, and many other feelings, exist alongside the sadness. It is as if many threads are woven side by side, bright and dark, in the fabric of the parent’s lives. They co-exist; they do not blend into one color, or feeling. Because ours is such a “can do” society, there is pressure on parents to quickly put their feelings of sadness away or deny them. Parents are told to “think positively” and “to get on with your lives.” They are told that God has “selected” them to receive this special child because they are such strong people. These kinds of comments, while well meant, deny the validity or parental long-term grieving. The discomfort of observing pain in those we care about can be part of the reason for such comments from others.
Grieving, however, is a process that takes time, often years. It’s a prickly bush that one must go through, not jump over. However, there are ways to support the process of grieving. Most parents found support in a community of people who understand because they, too have lived the experience. It is lonely to be the only family on the block with a child with a disability. Being part of a support group or organization helps to combat feelings of isolation. Engaging in personal activities that do not center on the family member with a disability can help increase feelings of competency and self-worth. Counseling, especially at times of significant stressful milestones, can be useful.
Chronic sorrow becomes a permanent part of the personality structure of most parents who have a child with a disability. It’s a normal response. It’s thread narrows and widens depending on life situations; most often it is accepted with courage. And, although permanent, if is not the dominant force in interactions with our children. The dominant forces are love and feelings of connectedness to them.”
“For the parents who had to wait longer to hear a first word, who spent more time in doctor’s offices with their child than on play dates, who endure countless bad days and the stares from other people…For the parents whose child’s first friend was their therapist….”
A friend posted this and each of these items fit so accurately, but it made me want to add things like…..
…For the parents who learned early to lean on others, to accept the generosity and kindness of others,
For the parents who found out that there is no reason to try to do it all alone,
For the parents who know that whatever one does as a parent it will never feel like it is enough or correct, but is the best one can do at any given moment,
For the parents who know the value of an occupational therapist, a speech path, a physical therapist, an appointment scheduler,a PH ITINERANT TEACHER : ), a “play lady”, a Lekotek leader, a thoughtful caring teacher,a good-natured camp counselor, a kind peer, a pleasant stranger, a compassionate listener, a hand holder, a good hugger.
For the parents who are repeat offenders of DWW (Driving While Weeping) because they have found that the car was a place where nobody else would be affected by their tears.
For the parents who have learned and are willing to share the fact that discouragement might put you face down on a closet floor wondering if you will ever be able to stand up again, but that before you are needed to resume your role, you are not only off the floor, out of the closet and standing, but wearing a smile for when that yellow bus pulls up in front of the house.
For the parents who have experienced more love than they thought possible, more heartache than they ever hoped to know.
For the parents who have been witness to strength to surpass muscle men, perseverance beyond measure, gratitude that touches the heart, smiles that are brighter than sunshine and courage equal to any Purple Heart Hero.
For the parents who are my peers, my supporters, my encouragers, my mentors, my role models, my friends.
Cheers to you!
Twenty six years ago was the first time I had ever heard the words Prader-Willi Syndrome. I have lived with Prader-Willi Syndrome ever since. I am not afflicted with it, so I feel I only have the right to tell you what it is like to live on the periphery of it. Its hunger does not consume me, I only see how it consumes my daughter, with whom I live. She lives with Prader-Willi Syndrome and I float along the edge of it doing whatever I am capable of to make her life easier. She turned 26 years old April 26, 2012. She is the same age I was when she was born.
I look at the 26 year olds I know and am shocked their bright-eyed optimism and innocence was mine until 4/26/86. We made it past the 18 month mark and the teens, both landmark ages we were warned about at the time of diagnoses. There has been laughter and tears, more often than not they have been simultaneous. Which is why I agree with Truvey from Steel Magnolias, “Laughter through tears is my favorite emotion” : ) I marvel at so much I have learned along the way. So much I cannot even explain. What I know for certain is “no man is an island” and life is easier because of that. I would not have survived without all of you, my family and friends, the amount of your love, compassion and support are beyond my scope of comprehension.
“In the entire history of the universe, let alone in your own history, there has never been another day just like today, and there will never be another just like it again. Today is the point to which all your yesterdays have been leading since the hour of your birth. It is the point from which all your tomorrows will proceed until the hour of your death. If you were aware of how precious today is, you could hardly live through it. Unless you are aware of how precious it is, you can hardly be said to be living at all.” ~Frederick Buechner
Can you think of anyone who lives each day with awareness of
how precious it is?
How often do we take the time to realize the significance of each day?
Something in each day has an effect on who we are and how we affect the lives of others.
If we would be cognizant of that fact and of how precious each moment is, would we do anything differently in a day?
Would we be able to live through it?
Some days seem more precious in our memories than others.
Some, more significant.
This day, April 26Th, 1986 was the
day in my life.
A day which shaped all of
that day formed the
woman I am today.
That day ushered out
righteous, pompous me
and welcomed me into an adventure
that would teach me
and one of the most difficult of all things;
the ability to accept the
generosity of another,
to welcome their kindnesses.
I’m not sure why it should be so difficult,
but even after all these years, it is.
I don’t know if it because accepting
the kindnesses of others, exposes
the fact I am so very needy and vulnerable…..
perhaps that is the reason.
I think the reality of the difficulty
of accepting another’s kindness
comes mostly from the awareness
of how precious it is.
As Buechner says, ” if we are aware, we could
hardly live through it.”
So, when you are being ever so kind to me,
as is so often the case,
I am choking up, puddling up, or straight out
bawling like a baby,
I can hardly live through
how precious your kindness
is to me.
On this date in 1986, I unwillingly joined
a sub-sect of society I wanted no part of.
I became the parent of
a “special needs” child.
Today- this day like no other,
I am thinking of the incredible young woman
my child has become.
Today- this day like no other,
I am thinking of me and trying
to be aware of how precious each
Today – this day like no other,
I am thinking of you-
and how precious you are to me.
Katie’s mom –Anne