My Hope – Above the Clouds

I have said before that I write to process my life – circumstances, my family’s needs, our heartbreaks, our victories, our joys, everything that swirls in my blender of a mind. I often don’t really know what I think or believe until I write it down.

So, today I share 2 poems, written almost exactly one year apart and over the same life circumstances. Namely, the health of my son who has epilepsy and Intellectual Disability diagnoses. Traversing the terrain of his world, armed with an extremely vulnerable brain leaves a parent lost and powerless. We spent 7 long years begging and pleading school districts to help us accommodate him and we whittled away thousands and thousands of dollars searching for diagnoses. I spent days and nights on my knees (sometimes literally and other times figuratively) humbly presenting my requests to God. The first diagnosis that came was “epilepsy” and trying to control the seizures was a long, arduous process that was difficult to walk through. Here was my response to years of heartache with no reprieve in August of 2014:

Storms & Silence

Anger beats red and
A Bitter taste chokes my roots
Clawing for some help
My hands are dirty and I am raw
Grime clings beneath nail-beds
And soot stains the heart-lines
Hope has fled with my youth,
Sorrowed and soiled.
I can’t help him.
From where will help come?
I have lost my breath.
From where will his help come?
The fight’s gone from my bones
Worn, with an ache in my knees
From begging far too long.
Worry lurks behind me and a fear that is real
Steals my sleep and chases away peace.

Arms wide open with white knuckled fists
I lean into backbreaking winds.
once they slowed, I fell face down with nothing to resist.
I am hoarse from calling out to You.
I need water, my well is dry.
I watch. Wait.
Prayers carried by the wind
And dashed against rocks I can’t see.

I watch.
Arms wide open with white knuckled fists
I clench my eyes shut and bite down hard.
Straining to hear.
But the silence ensues, piercing me
And Ravaging him
No shelter from storms that seek to destroy
This small life, significant to ME
my prayers, love and patience poured out on its behalf…
is crumbling to ruins before my eyes.
Too many can’ts, numberless don’ts.
Isolating us each morning.
Where are Your promises? Where are your new mercies?
Why.

The second poem I wrote a few months after receiving the second diagnosis of Intellectual Disability (formerly known as mental retardation). While the people in our lives grieved, I found solace in having everything I already knew – validated. Finally. And with that validation came the help of school districts and more specialists. The best part? I could give myself a break, and lower my expectations of him and require the world around him to do the same. It gave us all more room to breathe. It saved our family and here was my response to the help after long years of searching and waiting in desperation for a breakthrough (August 2015):

above the clouds

In all this, I found that God is still the same. Even when it seems as though He does not hear and we are alone, we are not. And if I am angry, He can handle it if I pour it out to him. I cannot strive in Hope for a better future or relief or changed circumstances. Those kinds of hopeful prayers will be dashed. Instead, I must make God Himself my hope. He is with me, He is with my son. He is for me, He is for my son. God is enough and He does sustain, if I keep my head up and looking above the clouds…even while they block the sun.

Finding Solace in Grape Fanta

Every single spring, he grieves. For eight years running, Eddie feels the depths of his many losses that inevitably come when a life is disrupted by death, loss, and adoption.  Loss of family, loss of normality, loss of identity, loss of the familiar – smells, flavors, touches, the ocean, loss of a mother who carried him tied to her back, loss of extended family who share his nose, his eyes, his square chin. Loss.

The first spring he was with us, he would just cry and cry – his behavior constantly and uncharacteristically naughty or angry. Then I remembered reading in my adoption training literature on the cycles of grief. The body remembers even if the brain cannot. I got to thinking and dug up the tiny packet of information I had on his birth family. Mother’s Day was coming and my little boy was a mess. As I perused the little bit of information I had… I saw it: his birthmother had died the first week of May, just before Mother’s Day.  This was quite literally, nearly to the day, the anniversary of her sudden death. So the first few years in the United States, when he would start to behave like this, I would give him the words that only his body could remember: “Your body is sad because your birthmother died during this time a few years ago.”

One year, as I went through the same script during similar episodes, Eddie interrupted me, crying out in a strangled yell, “I just wish I could see Birthdad!! I miss him….” I was stunned, catching the knife piercing my chest. I forgot that he also might grieve for the living that he had left behind. And once I found my voice again, all I could say was that I wished he could see Birthdad, too. And together, we cried. After he had cried it out for a few minutes, he went on his way, tripping upstairs, excited and ready to play with his legos.

Then there was last year. Eddie came home one night and all I did was look at him and he burst into tears. Sobbing in a shout. So he raced downstairs to his room and I let him be for a few minutes. Layla chased after him. In a few minutes he came upstairs gasping for breath, and I told him we could go talk about it some more in a few minutes. He stood there quietly sniffling. But then raced downstairs again, and I am quite certain the whole neighborhood could hear his sorrow. Layla followed him. But before she turned to leave, she said, “Don’t worry, Mom, I will talk to him.”

After putting Baby Sue to bed, I quietly walked downstairs to see what was going on in his room. Eddie was still blubbering. That much I could hear all over the house. But as I rounded the corner, I saw the most beautiful thing I have seen in my oldest 2 children. Eddie was doubled over, hands on his knees, crying inconsolably as Layla, with her arms wrapped around his waist just held him with her cheek pressed into his back. It was like they were spooning while standing. She held him like that, patiently absorbing his pain. She looked up and mouthed “It’s ok, I’ve got this…” And I quietly let them be, tiptoeing back upstairs. In a while, I heard the two of them planning their next Lego fort together. As if nothing had happened.

But this year, he held onto his grief. For a month, he came home from school every day without saying much, keeping to himself. And whenever I asked what was bothering him, in a nasty attitude he would insist that NOTHING was wrong. But then tonight, his pain had built up to the point that as he stood in position on the soccer field at his training, it was as though he was paralyzed. He couldn’t move because the hurt was so intense. It almost seemed as though he was recovering from one of his seizures.

So, later at home, we pushed and pulled until he cried once again as we asked, “What is wrong? Why can’t you even move?” After crying uncontrollably for 15 minutes, he finally said it: “I miss my Birthdad!!! I miss all of them.” He claimed he was afraid we would be angry with him for missing his Birthdad. Never once have we ever been angry at him for missing his father. How could we? We have only ever grieved along side him. Every time. But as we talked through it, he remembered – we have always held his hand in the middle of it. Oh yeah.

But I had to remind him, he has to talk about it. The only way to move through grief and get on with his everyday life is to give the pain its proper voice. To get it out of his chest, he MUST speak it out of himself. Or it sits and festers and rots until he can hardly move. His birthfather would not want to see him standing around on a soccer field feeling sad. As a parent myself, I know his birthparents would want him to love them, miss them, but work through the pain and honor their memory with his incredible talents they gave him.

I tell him – his birthmother is always with him, watching him and he can do his best every day, making her proud and honoring her memory. Honoring the love I know she had for him. Because how else would his heart be so incredibly, over-flowingly enormous and loving unless the woman who held him close to her body each day in a sling as she sold her wares in the local market, who nursed him and taught him to walk, and sang to him in Kru during his most formative and vulnerable years, but was so incredibly poor that she could hardly feed him – loved him well. She clearly must have made up for the lack of solid food in intensive, loving, nurturing care for him. He may have been nearly starving, but he has never lacked love. Ever.

So Mother’s Day has become very bittersweet in our home. We grieve with Eddie over the terrific, life-altering loss of his birthmother in the weeks, even the whole month leading up to this National Holiday, and I do my best to honor her memory. I have an enormous responsibility to her, and we owe her so much for who she is to Eddie and how she loved him well. And Birthfather (also named Eddie) demonstrated a sacrificial love so deep, he gave Eddie a chance at having a family again. And once we talk it through, he holds his photograph of Birthdad tightly – the one of the two of them together for the last time, sharing a grape Fanta. Then Eddie carefully sets it back on our “birthparents shrine/table” filled with photos of our kiddos with the parents they had before we filled that role. And he looks at me smiling expectantly and asks, “After we get some grape Fanta tomorrow, can we put the empty bottle next to my picture with Birthdad?”

When you come over and see an empty grape Fanta bottle sitting on my living room table, you will know, I didn’t miss the glass recycle bin. This is how we grieve. This is how we honor people worth cherishing. This is how we restore happiness and health in the face of loss.