My children – my teachers.

cslewisgrief365 days from the death of my daughter and what do I know of grief?  I know there has been wailing and gnashing of teeth. I think that is supposed to reference what hell is like. Perhaps grief is hell? The gnashing of teeth has been so strong at times I thought my head would explode. Primordial wails erupt unexpectedly from the depths of my being ending in shudders and gasps. Tears have covered my cheeks until the skin was raw and cracked. There have been times when I could not stop rocking back and forth, as though the constant movement proved to myself that I was still alive. Sleepless nights are wound together with sleep-filled days. Energy is something I marvel at and envy in those who can actually shower and dress in the same morning.

I often hear in my mind, the second beatitude from the Sermon on the Mount – Blessed are those who mourn, for they shall be comforted. This is a truth I know about grief; comfort comes in many forms, from many places. When God says he will comfort me, his methods are limitless. I think every sense has been used to bring me comfort. Smell: whiffs of fresh shampoo upon being hugged, sweet or savory scents as food being brought to the house was uncovered, calming oils in a steamy bathtub, heady floral scents from bouquets, chlorine as a locker room door is opened, sweet baby smell while nuzzling a grand baby. Taste: piping hot coffee (decaf, of course) with an ample amount of cream shared over late night philosophical conversation, Chinese entrees from every section of the menu, Mexican meals filled with laughter and finished with empanadas, licorice handed to me while I am driving, an open-ended offer to pull out anything from the fridge to the kitchen island. Sight: loved ones packed en masse in a funeral home room, tears of others who loved my sweet girl, heartfelt writings on greeting cards, a smile, unique creations in Katie’s memory, Facetime or videos with my grandchildren. Sound: text beeps, phone rings, Facebook dings all representing someone thinking of me, songs bringing remembrance of concerts and car ride radio playing, laughter. Touch: the light touch of a hand on a back, a massage, a hug, an arm to lean on, a hand to grasp, a kiss on the top of a head, tiny fingers wrapping around one of mine, an arm to tickle, little lips on my cheek, being wrapped in a cozy blanket, more hugs. He has used you all to comfort me, who mourns.

Earlier I posed the question, “Perhaps grief is hell?”,the amount of comfort I have received due to the grieving proves that can’t be true. Perhaps grief is love? If grief is caused by missing someone, someone you loved, there would not be grief if there had not been love. Queen Elizabeth I said, “Grief is the price we pay for love.” Which begs me to wonder would I give up the love I experienced to not have to endure this grief? No way! In fact, the love I knew during Katie’s 29 years makes this grief seem insignificant in comparison to such great love received and given during her lifetime.

Katie taught me endlessly from the moment she was born, but what might not be as blatantly obvious is how much her older brother, Jacob taught me along the way, too. I could list various things I learned from both of them: things like patience, perseverance, graciousness, and humility, but none of it compares with the most important lesson I learned from them.  Katie, whose epitaph will describe her as “well loved & loved well”, and Jacob, who used those words to describe his sister, but they could just as easily describe him; these two children of mine taught me love. One would think a mother would simply, intrinsically know how to love. True, there is that mushy, loving feeling which happened right upon my first sight of my babies, but the love they have taught me is the love which sustains life. A love which gives purpose to life. A love meant to be spread to everyone you meet. The love they have taught me is love fresh from heaven. These two children of mine love in the way I imagine Jesus loves. On this day, the first anniversary of Katie’s death, Jacob made a project honoring her. It was filled with love. It taught me what grief is. Earlier I wondered if grief was hell. Then I pondered that it might be love. I now have the answer. Grief is love. Grief is most definitely love.

And you know what? I can live with love.

click on these words >   Jacob’s project on youtube, you’ll want to see this12809581_10156571907685693_3816945146187050730_n

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Chronic Sorrow~ insight into me

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.Image
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.”