April 2014 – Vicki Neely

Out Dancing

“The anniversary of your death comes around every year and you never know it.” -Momma

Written by the finger of God and etched on the minds of those left walking earth until the inevitable happens.

At his kitchen table, one year ago, my Daddy looked up to Heaven and stepped in.

One year ago today, my husband uttered those words etched on my heart, “I’m so, so sorry. Your Daddy…”

One year ago today, my dear friend dropped everything in her busy life to come over and offer her shoulder and her help and her prayers.

One year ago today, I became an orphan in the earthly sense.

But as those unidentified, invisible persons known as “they” say: “Life goes on.”

And it has – at break-neck pace as I run on the treadmill of this extraordinary and abundant life I’ve been graciously given.

The quiet moments are few.

But when they come…

The emptiness of my childhood laid at the house on 395 Lake Circle Drive beckons me. And I know I can never go home again.

Our Saturday trips to the white brick house around the lake I bicycled around so many times in my youth, is no longer mine.

And I grieve.

Yet, there is no time for that. “Life goes on.”

After all, my daddy lived a full life. This is how it was “supposed” to happen. I didn’t lose a child. I would never compare as that horrific pain would be too indescribable.

I wouldn’t compare it to a sibling or a young person who had their whole lives ahead. That unfairness wrecks my soul.

My daddy was old. I came into my parent’s life as a “bonus” and I am so grateful and often quite surprised I had them as long as I did.

And I rest knowing where he is.

But it still hurts. And I find myself apologizing for the sorrow.

The grief is silent and hidden. There is no time to wallow and I feel as if I shouldn’t.

Because he was old, lived a full life and is in Heaven.

My head knows, but my heart isn’t listening.

I am selfish and want more time.

I want my children’s Papaw to see them graduate and get married. I want him to hold my grandchildren.

I want to call my Momma and hear her defend me when I’ve been hurt and hear her sympathy as she asks” Don’t you just get so tired sometimes, darlin’?”

I want to hear Daddy say just one more time “Suits me and I’m hard to please.”

Ironic since he was most easy to please. Even more so as he grew older.

As I watched him struggle in his frail body care for my dying mother, I saw Jesus in my father pouring out his all without complaint.

I miss hearing, “You must have been out dancing,” whenever I missed his call.

And I’d ask him the same if I called and he wasn’t home.

I miss his gentle spirit, quiet manner and funny sayings. I miss a thousand things I could say this very moment.

Yet, I will take the advice of a friend and surround myself in some memories and let myself grieve today because our relationship deserves that time.

And in the midst I will make cupcakes to take for Josh’s birthday and take them to his class.

My earthly life is still overflowing with those entrusted to me and I look to a time of celebration for the anniversary of a new life created in God’s image twelve years ago.

And as our family remembers and celebrates this week among the tears, I pour out my thanksgiving like oil and wipe my tears with His robe for His sacrifice so that my sorrow is but for a moment.

To everything there is a season, and a time to every purpose under the heaven. A time to weep, and a time to laugh; a time to mourn, and a time to dance.

I look to my Jesus, I remember His death. But then…

Resurrection.

You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy.

Only because of the hope I have.

If I don’t answer it’s because I’m out dancing…

Bittersweet

Bittersweet: combining sadness and happiness – a simple definition for a very complicated emotion.

This week is bittersweet.

Yesterday was the two-year anniversary of my sweet father-in-law’s passing into eternity. While at church attending a women’s conference, amongst the chatter and music of an after-party celebration, I received a call from my oldest son who in a shaky voice relayed the message “Dad is going to St. Augustine because they think Pop-Daddy is dying!” Stunned, I attempted to gather my scattered and swirling thoughts and told my daughter we had to go and why. As she and I cried, my sisters in Christ – my friends – surrounded us, offered help and prayed for us.

Bittersweet is the comfort of the saints during times of uncertainty.

Thursday will be one year since my own Daddy started his forevermore in Heaven. One year ago, I went about my normal routine, oblivious to the fact that my sweet father had met His Heavenly Father that very morning. My husband walked in with tears in his own eyes, gently backed me into a chair, and as he shook his head and repeated, “I’m so sorry, I’m so sorry….”

Bittersweet is the gentleness of the one who knows us best during times of sorrow.

Friday we remember what Jesus did for us on the cross. Two-thousand years ago, the Lord of Heaven came down in flesh and had that flesh torn and broken and beaten beyond recognition and hung naked on a cross to pay a debt I could never pay. He took our sin and sickness so that we may be forgiven and healed and no longer be condemned.

Bittersweet is the sacrifice of death so that we might live.

But Saturday…

Saturday is my precious Joshua’s birthday. As he turns twelve, I am stunned in amazement of all we’ve gone through in such his short time. Children with special needs often live lifetimes very quickly. I see a boy with a mind of a child, yet the body beginning to grow into a man and still wonder why God saw fit to choose me for the honor and sometimes daunting task of being his mother.

Bittersweet is the wondering what might have been while celebrating the what is.

And Sunday…

Resurrection Sunday. Easter. The third day and the empty tomb. He has risen. He has conquered the grave and the sting of death. The veil has been torn. A new beginning. An empty cross. Redemption that was bought by the ultimate sacrifice and available to all who choose. Living water for those who are thirsty.

The bittersweet is now the sweet and the bitterness is gone. Choose this day whom you will serve…

Aware

Today is Autism Awareness Day. A day I never thought I’d be writing about, let alone living.

We are aware of autism every day.

While pregnant with Joshua and learning his diagnosis of Down syndrome, I developed a sinus infection induced by crying. The doctor reassured me, “Down syndrome is the ‘Cadillac of disabilities’. I’d much rather have that than autism.”

Just as I was getting used to my Down-syndrome-may-not-be so-bad life, it reared its head – The Scarlet “A”.

There is no prenatal test. No blood test. Not even a really definitive test.

Not like with Down syndrome in which chromosomes glare black and white declaring disability.

Autism sneaks in and overtakes without warning. I did not see autism coming.

I never knew autism could co-exist with Down syndrome.

“Josh is way too affectionate to have autism. He smiles and hugs and looks me in the eye.”

An unscrupulous thief crept into my life and robbed me of all the possibilities I was told could be for my son with Down syndrome.

My heart broke bit by bit as I listened for newly-babbled new words which had faded into non-existence.

Hard-earned skills exchanged for obsessive and destructive behavior.

Play drifted away and excessive video-watching became the only interest.

The gap between milestones reached by his peers with DS widened and soon the chasm became too obvious to ignore.

I wanted the diagnosis to prove I was not in denial about Josh’s limitations.

A dual-diagnosis brought relief.

Relief that my son was not “just low-functioning”, but had something else “wrong”. That it was not that I had just not done enough.

Because I thought “enough” -enough therapy, enough hard work – all those things I was told would be “enough” – would make this helpless little baby reach his full potential. After all, that is what we are all told. With the proper resources and opportunity, people with Down syndrome can be contributing members of society.

So I hunkered down and did it all – therapies and specialists, meetings and workshops. I reluctantly put my baby in school at the ripe old age of three and waited. I waited for it and all the experts to make it “work”.

During this time, I had another baby and wondered if this contributed to Josh’s regression. Others seemed to have more time to devote to their special needs child, yet I couldn’t seem to “do it all” with four children under eight.

Accolades to the moms whose children did so well cut me to the core, as I couldn’t keep up.

Slowly, the little boy with Down syndrome drifted into a little boy with no words and upsetting meltdowns, overturning tables and biting classmates.

My precious little boy once praised and adored by his teachers became a problem.

My quest to find answers was met with opposition and seeming futility until at last it came.

The diagnosis of autism simultaneously comforted and terrified me.

My dreams shattered yet again as I grieved again for the son I thought I would have and the black hole deep in my heart grew until everything became clouded by a disability lens.

Wondering how my son could ever fit into this world where achievement rules, ability is applauded and being the brightest and the best is the goal.

Nothing seemed to apply to Joshua.

No sermon preached. No Bible verses studied. No meeting attended. No one seemed to have my “problem’.

My different kind of normal was again challenged. I felt alone in my noisy house-full.

I was afraid to tell my friends within the Down syndrome community that I prayed for Joshua to be healed. I feared judgment and criticism for not accepting him. Or worse – that I didn’t love him.

But my heart ached because of my intense love for him. My mother’s love, fierce and protective – burning against those who were deeming him a difficult child and raging against those who looked down upon him.

Offended at those who thought he needed to be healed and angry at myself for wanting him to be.

And not strong enough to live this kind of existence without help from God. I had cried to the Lord upon his diagnosis of Down syndrome and a severe heart defect, “God, I can do one, but both?? I am not strong enough for this!”

The wonderful thing is that I don’t have to be. When I am weak, He is strong.

God has allowed the different than what I ever expected and yet, He has shown me that I have been given a great honor in being Joshua’s mommy.

And that jealousy and comparison have no place. I need not compare him to anyone.

And as I continue to pray and ask for God to help me bring up this lovely creation He made in His image, I am reminded that He is my strength.

I am reminded that all feelings of failure and defeat are not of God, but as I lean not unto my own understanding, I find a path.

A path often rocky and dirty yet cleared by His grace little by little to guide me each step of the way as I muddle through this journey.

And while I am aware every day of autism, I am also aware that every day has new mercies, new opportunities and a new awareness of things wonderful and to be celebrated.

Lord, help me to live aware. Aware of all the wonderfulness that is life.