A long journey begins with the first step…

Stephen eating pudding, with a smile and a drip

Today I’m thinking about what got me started on this blogging journey…

 

When I started this blog I was thinking of my son’s feeding difficulties and how far we’ve come. It still amazes me to see my son try new foods. As soon as our son could walk, he would take off at the sight of food. He’d shake his head and refuse cake and ice cream. Offer him a cookie and he’d get up from his seat at the table with record speed.

You’d shake your head in disbelief to see a kid who wasn’t at all tempted by sweets. Who could ever imagine chocolate being equated with torture? (deprivation maybe – but torture?) He was in kindergarten before he had his first bite of candy. It took two more years before he started eating solid food regularly…

Stephen had acid reflux since birth. There was very little else that hinted at what the future would hold for us. Stephen was born full term and the only minor complication was the cord wrapped around his neck. The doctor quickly cut the cord – as soon as his head was out. His color looked good. He wasn’t blue. The doctors handed him to me after looking him over for just a minute.

The first few weeks home were exhausting. At night, the few hours of sleep I got were interrupted by nursing and cleaning up. Stephen often spit up everything he ate. Half awake, I changed the crib sheets in the middle of the night and gave my newborn another bath. The pediatrician suggested keeping him upright in his car seat for about a half hour after each feeding. He prescribed some prevacid and sent us on our way.

The first sign of trouble came when our son was 5 months old. A few days before Christmas our whole world changed. Stephen was diagnosed with Infantile Spasms, a serious life threatening seizure disorder. The prognosis wasn’t good. He had a 70-80% chance of moderate to severe mental retardation and a 10% chance of death due to related complications. We were heart-broken over the loss of all the unspoken dreams we had for our baby.

Steve cried and said he’d sell his soul to the devil to save his son. I scolded him for saying such a thing. At the time, he didn’t understand why I would be so critical during such a difficult time.

The children’s hospital was nearly empty. Everyone who could go home did. So we spent our son’s first Christmas on the oncology ward with the other families who couldn’t bring their children home for the holidays. I couldn’t help but be reminded of the other parents grieving. Our son was spending his first Christmas in the hospital, but another family was spending their last Christmas with their child, just a few rooms down.

I wouldn’t allow myself to cry like someone who has no faith. As surely as there is a God above, there is mercy for the little children. God’s love surpasses all understanding. If it weren’t so, who would ever believe? So I went to the chapel and wrote a prayer in the book. I prayed for all the children and families who were spending Christmas in the hospital. Then when I was done praying for the other families I prayed for Steve, and last but not least, I prayed for our son.

I have so much to say about faith, hope and love. In this life, all that we see is temporary, but what is unseen is eternal. Faith is the unseen essential. No matter what the odds are against it, if we have love in our hearts, and hope for the journey, faith will get us through. Without knowing why I prayed this way, I did, and by doing so the weight of grief was lifted. Maybe you’ve heard it said – no matter how bad you think you have it – someone has it worse. When the world is falling apart at your feet, it’s the last thing you want to hear.

Hope is the anchor of the soul. When we need it most, all we have to do is believe. Somewhere behind the scenes there is a greater Good at work.  If we hope for what we already have, then what’s there left to hope for? I know in my heart as long as I breathe, there is still hope. So we hold on to hope always.

There are three things in life that endure, faith, hope and love, but the greatest is Love. When your faith is tested, and the outlook is bleak – It’s love that will get you through. Love gives us the strength that we didn’t know we had. I couldn’t stand to see the love of my life falling apart in despair. So yes, I scolded him. We must hold on to hope.

“Love feels no burden,
thinks nothing of its trouble,
attempts what is above its strength,
pleads no excuse for impossibility,
for it thinks all things are lawful for itself and all things are possible.”

~Thomas Kempis

Stephen drinking from a baby bottle at age 6
Stephen drinking from a baby bottle at age 5

For years these feeding difficulties tried my patience. At one point I spent 8 hours a day feeding my son (no exaggeration.) I have since learned it’s best to spend only 30 minutes per feeding. In the end it wasn’t the hours I spent feeding him, but the hope that he would outgrow it that made the difference. Now I giggle as I watch my son attempt to eat a banana without pulling the peel all the way off. He gets half way down, then tries to get every last nibble before he asks for help getting the rest of the peel off.

Wait a minute! Let me peel that!
Wait a minute! Let me peal that!

In the past, I got down on myself for letting him go without eating in favor of having a pediasure. Now I realize that patience and perseverance pay off in the end. I can’t win every battle. I must always remember a long journey begins with the first step…

Stephen stuffing a cookie in his mouth before it can be taken away
Dont steal my cookies!
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4 thoughts on “A long journey begins with the first step…”

    1. Thanks! I think we each have our own kind of struggles in life. The important thing when you’re struggling is to gain some perspective. I think the journey begins with believing (or finding something to believe in) in any given situation. It’s like putting one foot in front of the other and taking the first step. I like to be open-minded and draw inspiration from anything good. It doesn’t have to be religious (sometimes it is.) Sometimes it’s just taking a walk to clear my mind and enjoying nature. Sometimes it’s relaxing and reading a book. We can all draw strength from something (or someone) we love. I’m glad you enjoyed my story even though you’re not religious!

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