We visited dear friends a few weeks ago.
In my memories of the visit, I wish I could paint an abstract painting of what it looks like in my mind.
It is painted with the colors of an incomplete rainbow.
A swirling storm of colors in a tornado. The heavy, blackish brown of Lilli's many cries, tears, yells of anger and frustration when we were out in public on the two days we visited and tried to do some sightseeing and went to an amusement park.
Bright, shiny yellow streaks of her shrieks of delight. Broad strokes of pink distinct and delightful laughter. Deep rose swirls of her sweetness when kissing Elmo and giving Elmo tight hugs, and the girl inside the Elmo costume breaking character later and telling us quietly and discreetly that Lilli made her day. Sky blue with the sound of water sprinklers splashing on her hands against a bright blue sky, her mouth in a wipe-open smile.
Red swirls of the hundreds of unspoken words she tried to convey physically, through hugs, and in pushing us away. The red-orange intensity of her physical efforts trying desperately to compensate for the absence of verbal communication.
Glittering gold of her strong, gripping hugs. grabbing our faces and looking intensely into our eyes for seconds that feel like a year-long trip into vast blueness, her soul yearning to speak volumes and convey with just one long look.
Black splotches. A seizure the first night of the visit. My husband and I whispering urgently to each other and working as a team in the middle of the night. Darkness and then sudden light in unfamiliar room while she has the seizure and everyone else is sleeping. Our six year old sleeping through the whole episode, inches away. Then turning off the light after it is all over, and laying in the dark. Two sets of eyes, open. Staring. Thinking. Listening to the sounds of all the breathing in the room. Trying to calm and slow our rapidly beating hearts. The sorrow. The worry. Gray splotches of trying to let it go, move on. It's over. She's OK. Sleep.
The purple-gray of my heartbreak and defeat so many moments as we try to create a special time and memories for our other three children. But Lilli is crying with despair and shrieking in anger, drawing startled looks of confusion, sympathy, silent questions from strangers all around us. I hold hands with my younger children and point out interesting things, read facts from museum plaques while trying to block out the unhappy noises streaming from my oldest, because there is nothing else we can do or try to make her happy.
A bolt of shiny silver in one single moment. I push Lilli in her oversized, special needs stroller through a museum that she hates. Her angry cries are echoing through the rooms, accompanied by our shushing and muted notes of Elmo music coming from her mp3 player. A look. A split second seared with a knowing, loving connection. A mom, pushing her little boy in a wheelchair through the rooms with us. She sees my heart and lets me know with one look. She knows. Silent solidarity.
Only moms of children with special needs have this look. I give her the look too. It is all the colors of our rainbow at once. It is every emotion at once. It is a one second long, life connecting friendship, over in an instant when we both look away.
Deep dark purple-blue of me sitting at a table with my friend, late at night. Confessing my feelings of sadness, discouragement, frustration in the deep valleys of raising a child with special needs.
And then, in the middle of the color tornado: a speck of green.
A new tiny seed, sprouting.
The words of my friend, coming out of the seed. White. New. Clean. Perfect. Renewing.
"Remember that you are living in the midst of a miracle. She is a miracle."
She was there the night Lilli was born. She was there. She stayed with me all night. She was there with me for everything when it all began.
She knows and remembers the miracles.
She reminds me.
I have forgotten.
Lord, forgive me for forgetting the miracles in the midst of my exhaustion and feelings of defeat.
We are not defeated.
She is a miracle.
She is twelve years of miracles put together, walking, breathing, smiling, running, laughing, hugging. Pedaling a tricycle. Dancing. Jumping.
She is one miracle, growing into more miracles.
What color is a miracle?
It is a color we have not seen yet. It is a color we cannot comprehend. It is a color in heaven, that we will see one day when we get there. We will open our mouths in wonder and awe and understanding, staring. It is a color that exists, but we cannot see it right now. Our eyes are not created to see the color of a miracle here on earth, but we know it is there.
One day we will see all of the colors together. The ones we can see, and the ones we cannot see.
A complete rainbow.
And then the painting will finally be finished.
In my memories of the visit, I wish I could paint an abstract painting of what it looks like in my mind.
It is painted with the colors of an incomplete rainbow.
A swirling storm of colors in a tornado. The heavy, blackish brown of Lilli's many cries, tears, yells of anger and frustration when we were out in public on the two days we visited and tried to do some sightseeing and went to an amusement park.
Bright, shiny yellow streaks of her shrieks of delight. Broad strokes of pink distinct and delightful laughter. Deep rose swirls of her sweetness when kissing Elmo and giving Elmo tight hugs, and the girl inside the Elmo costume breaking character later and telling us quietly and discreetly that Lilli made her day. Sky blue with the sound of water sprinklers splashing on her hands against a bright blue sky, her mouth in a wipe-open smile.
Red swirls of the hundreds of unspoken words she tried to convey physically, through hugs, and in pushing us away. The red-orange intensity of her physical efforts trying desperately to compensate for the absence of verbal communication.
Glittering gold of her strong, gripping hugs. grabbing our faces and looking intensely into our eyes for seconds that feel like a year-long trip into vast blueness, her soul yearning to speak volumes and convey with just one long look.
Black splotches. A seizure the first night of the visit. My husband and I whispering urgently to each other and working as a team in the middle of the night. Darkness and then sudden light in unfamiliar room while she has the seizure and everyone else is sleeping. Our six year old sleeping through the whole episode, inches away. Then turning off the light after it is all over, and laying in the dark. Two sets of eyes, open. Staring. Thinking. Listening to the sounds of all the breathing in the room. Trying to calm and slow our rapidly beating hearts. The sorrow. The worry. Gray splotches of trying to let it go, move on. It's over. She's OK. Sleep.
The purple-gray of my heartbreak and defeat so many moments as we try to create a special time and memories for our other three children. But Lilli is crying with despair and shrieking in anger, drawing startled looks of confusion, sympathy, silent questions from strangers all around us. I hold hands with my younger children and point out interesting things, read facts from museum plaques while trying to block out the unhappy noises streaming from my oldest, because there is nothing else we can do or try to make her happy.
A bolt of shiny silver in one single moment. I push Lilli in her oversized, special needs stroller through a museum that she hates. Her angry cries are echoing through the rooms, accompanied by our shushing and muted notes of Elmo music coming from her mp3 player. A look. A split second seared with a knowing, loving connection. A mom, pushing her little boy in a wheelchair through the rooms with us. She sees my heart and lets me know with one look. She knows. Silent solidarity.
Only moms of children with special needs have this look. I give her the look too. It is all the colors of our rainbow at once. It is every emotion at once. It is a one second long, life connecting friendship, over in an instant when we both look away.
Deep dark purple-blue of me sitting at a table with my friend, late at night. Confessing my feelings of sadness, discouragement, frustration in the deep valleys of raising a child with special needs.
And then, in the middle of the color tornado: a speck of green.
A new tiny seed, sprouting.
The words of my friend, coming out of the seed. White. New. Clean. Perfect. Renewing.
"Remember that you are living in the midst of a miracle. She is a miracle."
She was there the night Lilli was born. She was there. She stayed with me all night. She was there with me for everything when it all began.
She knows and remembers the miracles.
 |
| Lilli and my special friend giving her a kiss on the skyride. |
She reminds me.
I have forgotten.
Lord, forgive me for forgetting the miracles in the midst of my exhaustion and feelings of defeat.
We are not defeated.
She is a miracle.
She is twelve years of miracles put together, walking, breathing, smiling, running, laughing, hugging. Pedaling a tricycle. Dancing. Jumping.
She is one miracle, growing into more miracles.
What color is a miracle?
It is a color we have not seen yet. It is a color we cannot comprehend. It is a color in heaven, that we will see one day when we get there. We will open our mouths in wonder and awe and understanding, staring. It is a color that exists, but we cannot see it right now. Our eyes are not created to see the color of a miracle here on earth, but we know it is there.
One day we will see all of the colors together. The ones we can see, and the ones we cannot see.
A complete rainbow.
And then the painting will finally be finished.
 |
| Riding on the merry go round with my girl. |
