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Dwelling in the Beauty of the Good – One Word 2013

“Much more surprising things can happen to anyone who, when a disagreeable or discouraged thought comes into his mind, just has the sense to remember in time and push it out by putting in an agreeable, determinedly courageous one. Two things cannot be in one place. Where you tend a rose, my lad, a thistle cannot grow.”  –  Frances Hodgson Burnett, The Secret Garden

Years ago, I was asked by a friend why I always seemed positive when asked about my daughter who has Down syndrome or my mother who has Alzheimer’s. Why wasn’t I more negative? She wanted to know. After all, the difficulties were very real. I answered that if I didn’t focus on the positive in the midst of the negative, it was too much for me. My heart was desperate to survive and the pain of loss can sink you.

Recurring Loss 

Special Needs

Raising a child with special needs, there is loss. Regularly. When the diagnosis is given – great loss. And, there are the losses that occur day in, day out. Like years ago when I spied a little girl not much older than my daughter, donning a pale pink leotard, hair bouncing up and down, as she skipped to keep up with her mother at the grocery store. The reality that my daughter was still working with a PT on balance in multiple sessions of therapy instead of enjoying beginner ballet hit hard. And, attending multiple sessions of OT, PT and speech didn’t leave much room in a family schedule for other activities. Sadness can sink a mother’s heart like a boat taking on water till it throbs under the pressure and goes down. It’s just one out of many instances that occur when observing her peers and reality hits that she isn’t doing what they are. Yet.

Then, there are the occasional moments when a passerby offers an odd, grimaced look while peering down at her. Or, the hurtful comments that are voiced every now and then. She’s just a little girl, I want to say. But, I don’t. I try to respond with grace, knowing it’s grace that will always win out. I swallow the occasional urge to scream, “Have some compassion!” knowing it’s grace that changes hearts. My daughter is one of the bravest, most compassionate people I know. I’ve seen it and experienced it: the grace she offers to those around her. It changes perspective. Warms hearts.

The losses for me and her father and brother are ongoing and will continue throughout her life. And one day, she’ll be aware of them. They will become personal losses. I’ve accepted that. And I pray I’m prepared to meet that moment with wisdom and grace.

Alzheimer’s

Then, there are the losses of Alzheimer’s. It’s as if someone’s been stealing my mother away, little bits at a time over the last fourteen years. She’s digressed considerably recently, spending more time sleeping, more time in confusion. Conversation long ago faded away. There are occasional moments of spontaneous song and laughter, but they, like her, are drifting further and further out of reach.

Fourteen years is a heck of long time to experience loss regularly. First, when she no longer could independently spend time with her only grandson. In the beginning, she could watch him. And she did. And she loved it. Gradually, her knowledge of him has seeped away. Milestone moments have come and gone and she’s unable to fully celebrate them. She’s not had the opportunity to know her youngest granddaughter or to witness her oldest granddaughter blossoming into a young woman moving from high school to college. So many moments missed. My father’s retirement celebration with colleagues, friends, neighbors and family – she was completely unaware. But, we are not. Her absence is very real. And it’s her absence from those moments and from the moments spent in her presence that chisel loss into a daughter’s heart.

Focus, Focus, Focus

Many years ago while running track in school, the coach would remind us to keep looking ahead when we were approaching the finish line. “Don’t look back!” He was adamant. Turning your head, even for a moment to see who, if anyone, was close on your heels, would slow you down. And it might just cost you the race. “Keep looking ahead,” I’d tell myself, even if I could hear footsteps closing in behind me.

I’ve often thought of his advice. It holds great wisdom for life. Loss and difficulty can do their best to drag you under. Giving undo headspace to them is like willingly chaining yourself to a cement block and jumping into deep, dark waters. Grief is a process; one we have to walk through to get to the other side. I’m not suggesting we live in denial, just heed the advice.

Focus on the good.

It’s the only way.

Celebrate the Wildflowers

A few months ago, grief hit hard with the birthday of my close friend who passed away a year and a half ago. Other losses began to be more noticeable. I wanted to move beyond it, but it was a two-ton elephant weighing down my heart. I kept asking the question, “But what do I do with the pain?” For two weeks, I prayed, wrote in my journal and talked to my husband about it. One day, after writing the question in my journal yet again, I opened Margaret Feinberg’s book, Wonderstruck, only to find my answer. (Thank you, Margaret.)

In it, she relays the painful loss of her grandfather. After grieving for some time, she wonders how best to deal with the loss. Reading her account couldn’t have been more timely. For Margaret, the answer lay in how she knew her grandfather would have wanted her to respond. It was time to turn from the pain and celebrate the life her grandfather lived.

There was my answer. I’d forgotten and needed this well-timed reminder to turn away from the pain and celebrate life. Celebrate the life of my dear friend by living fully, as she did. And celebrate the life that is here and now. Celebrate those moments of joy with my daughter and my mother that inhabit each day. They are just as real as the losses and thankfully even more abundant.

Like wildflowers, moments of joy pop up unexpectedly. It takes a focused eye to appreciate their beauty.

Turn from the pain. Focus on and celebrate life and all the goodness it holds.

There is beauty in the good. And it’s simply where I must dwell.

 

“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.”   Philippians 4:8 NIV

Sofia after her recent ballet class

Sofia after her recent ballet class

If you are interested in giving a lifeline to parents who’ve just received a diagnosis of Down syndrome for their baby, check out Sevenly. This week all proceeds go towards getting a beautiful Lettercase booklet with critical information and beautiful photography into the hands of those parents. As a parent who’s experienced the fear and chaos of that moment, this indeed is a lifeline of hope.

 

If you are a new or expectant parent of a baby with Down syndrome I hope you find some encouragement here. There is much joy in the journey.

 

OneWord2013_dwell150

Photo – Poppies grow wild in the Foro Romano (Roman Forum)

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