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Musings and Commentary

Footprints

by Gwen S.

(September 2007)

This past week Ivey took her first beach trip. In fact, it was her first vacation and one that she had very much earned.  As always, she astonished me.  My sweet 14 pound 17 month old brought the sure basics of life straight to the surface. 

Let me backtrack for just one moment.  Soon after Ivey was born my friend Sarah gave me a copy of the poem Footprints in the Sand.  Reading the poem for the first time after Ivey’s birth was a God Moment.  I taped it to the inside cover of a picture book of Ivey’s.  I cannot tell you how many times I have read over that familiar poem in the past year, always searching out some means of comfort.  I had read the same poem hundreds of times before Ivey’s birth, but after she was born the poem took on new meaning.  Suddenly I was the one walking alone. 

Solitude.  Loneliness.  Isolation.  Seclusion.  Separation.

Those words describe life, at times, with a special needs child.  It feels like you are the only one.  Throw in an obscenely rare trait like anophthalmia and the loneliness intensifies.  It magnifies itself to an incomprehensible point at times.

Some days I want some one to say “I understand” and mean it.  Weeks like this one, where Ivey’s seizures tighten the coils.  Our neurologist wanted to try to isolate exactly which type of seizure Ivey is having; however, he’ll have to do some research. She also developed a urinary tract infection. We spent Friday having ultrasounds because of that.  Now we must wait till next week to find out if Ivey has issues with her kidney(s).  In all likelihood she does not.  She has spent the past year without any problems with her bladder or her kidneys.  Nevertheless, we have been warned that over time we will probably find more problems.  So , three more days loom ahead of us until we know.    The walls close in tighter. 

Suffocation.

Back to the beach.  Very early one morning I carried Ivey down to the beach.  There was no one out except for the occasional morning jogger.  We walked the beach for a while then came back to the spot in front of our condo.  There I knelt down so that Ivey could stand in the sand while waves washed up on her feet.  As the water washed over her tiny feet and buried them deeper into the sand, she would grow very still and tilt her head to one side, concentrating intently.  She was completely in the moment.

Watching Ivey take in the sounds, smells and feel of the water and sand brought tears to my eyes.  For some reason I began to think about that poem as we were kneeling there.  Early mornings on the beach are so serene.  As we stood up to go back inside I looked down the beach one last time and that is when I realized the poem is completely right yet  it leaves off something very important.

In the poem it says when you see only one set of footprints you are not alone.  It is then that God is carrying you.  However, there were countless footprints on the beach that morning even though no one was there.  Not only are we lifted up are carried, but we are also braced by those around us in our daily lives, whether placed there by intention or default, and only if we choose to be.  I think that along the way there are many people, angels if you will, who are there to help too.  Those walking in our lives daily leave those same footprints on our hearts.  They may not be able to step into my shoes and feel the weight at times, but many of them are mothers and can imagine .  They are also friends who sometimes sit there on the sidelines feeling helpless in trying times, other times they feel the excitement of good news.  Those are God Moments too.

Most often the strangers yank me back into reality and remind me that I am making choices to perceive myself as journeying alone.  Last Sunday we stopped at a restaurant for dinner on our way back home from the beach.  We were about to leave when two elderly women asked if Ivey had a problem with her eyes.  As my mom held Ivey, I explained Ivey’s condition and answered various questions about her medical situation.  They both shook their heads saying that Ivey is a miracle baby.  Finally, one of the women asked if she could lay her hands on Ivey and pray.  So they both did.  And right there in the restaurant they began praying aloud for my daughter.  I watched as my mom fought back tears.  I watched as Ivey smiled at the two strangers touching her hand and leg praying for her. 

Sunday as I sat in the ER watching Ivey have her second seizure, I thought about those two women.  The thought brought comfort – not loneliness. 

We are surrounded by people who are willing and wanting to help us carry the weight.  Some come in the form of strangers - others we call friends.  Either way, God has placed very special people in our lives as a tangible means to feel that we are not going at this alone.  There are others out there.  Sometimes you have to go find them; other times they find you. 

 

Welcome to MAPS.


Life

by Gwen S. 

(May 2007)

It is actually beginning again. Life. I had my doubts that it would ever be possible, for me that is.

It has taken fourteen months for Life to begin idling and slowly proceed forward. Fourteen months and one day ago, the assumptions that I had about my life were much different than they are today. Fourteen months ago my daughter entered into this world. Her new Life began; my life stopped, or so it seemed. The glass house that I lived in came shattering down around me.

My daughter was born with many medical complications that were not detected before her birth. Her resume of medical trivia is long and extensive. Her resume at one time made even the best physicians and specialists cringe at the possibilities of her life, all of which were skeptical. Fourteen months later, my daughter astonishes those same people. She beat many odds and thrives in a world that she was never to participate. She, like all children, is a miracle. My daughter is what remains when there are no assumptions. She is faith at its best.

In the race for my daughter’s Life, I found myself questioning whether or not I would ever enjoy many of the wonders of Life ever again, where exactly did I fit in the puzzle? Life became dependant on medical jargon and fear of my daughter’s diagnosis. It was as if I existed only to provide medical care to my daughter. So I set out to find my Life. I began gluing shards of glass back together, but the pieces were always chipped beyond repair. I was trying to make Life what it was fourteen months and one day ago; Life before a special needs child with anophthalmia, a trach, feeding tube, a cleft lip/palate, a heart defect, and mental and physical disabilities. I kept looking for the old me to submerge from the rubble. Then the picture became very clear, the pieces were not meant to fit together. The old me no longer existed.

Just as my daughter is feeling her way around her world, so am I. I am learning that as hard as it is to let go of the past, the person I was, I must accept who I am now. Acceptance of change is a very big pill to swallow. My Life is challenging, but it is far from boring. Fourteen months later my daughter’s life is in full swing and my own life is beginning with a new foundation. There is no blueprint. My daughter has taught me through faith anything is possible, so is Life.


Musing: A product of contemplation; a thought.

Commentary: A series of explanations or interpretations.

Here we share those personal topics and thoughts that we feel need to be shared.