William will be 5 years old this Sunday, September 11. We rejoice!
Here is a poem I wrote some time ago. Happy Birthday, son.
Barely above a pound jettisoned into life
Peeking through gauze
Poked, prodded, stuck and skewered
Surrounded by white coats, bright lights, beeps and bottles hanging on poles.
Home sweet home
Motionless gazing at the world from the ground up.
Finally! Slithering over carpet and cold tiled floors.
Upright. Leaning. Scoot. Scoot. Scoot. Smile.
Sun shining brightly overhead
Rays of God
Blessings from above
Days of drizzling.
Drops dancing on his head
Rolling down his cheeks.
Is William crying?
Weathering his storm?
Daddy towering above.
Tears from his heart
Tears from his soul
One of the biggest desires of a parent is for your child to get along. I mean really, who wants to have the kid that “Doesn’t play well with others”? That has to be a nightmare for any mother or father. All I knew was that I didn’t want to have “that kid”! You know “that kid”. The kid who is always disruptive! Acts as if they are the only one in the room. As if the world revolves around them. You know? “That kid!”
Well, our day had come. Was our kid “that kid”? We were about to find out first hand. Some close friends were bringing their daughter over to our house. She was a few months younger than William. This would be so good for him. It would be so good for both of them. They’d each have a new friend. I couldn’t wait! My boy would have his first girlfriend.
My whole mood changed when she walked through the door. That was just it. She walked through the door. That’s when it hit me. Our kids were close to the same age yet they were so different. She had two eyes, William had two eyes. She had two ears, William had two ears. She had two arms, William had two arms. She had two legs, William had two legs. But, she was standing on hers. Sweet, darling JJ! I never saw the hurt coming. Figuratively, it brought me to my knees! I stood towering over a couple of two year old kids, yet I was the one who felt inferior.
Amazing how one person can change the mood in a room. I was in my own home and a little 2 year old girl, cuter than cute, made me feel like a prisoner. Her mere presence put me in my own solitary confinement. I was alone again! I felt like the walls were closing in on me. It was like we were in a tiny room where there’s barely enough space for me and JJ to stand up, and William could not.
I was compelled to face a pain that I had no idea existed. I was compelled to face reality. Sometimes reality bites! Deep. These were the facts. JJ could crawl. William could not. JJ could walk. William could not. JJ could run. William could not. JJ could run and play. William could play too, but.
JJ left. Things returned to normal. Finally! Suddenly, my biggest fear was not that William would become “that kid”, but others seeing him as THAT kid. I found myself dreading the JJ’s of the world.
Every parent wants to provide for their child. There are endless thoughts about what your child has and what they do not. The focus always seems to be on what your child does not have or what your child cannot do. Your child wants a toy? You buy them a toy at a toy store. Your child wants ice cream? You buy them ice cream at an ice cream store. Your child wants to walk? You…
William’s haves and have nots. That’s part of my struggle. I have learned to embrace them. All of them. He will walk. He will run and play one day. I believe.
We all have reasonable expectations, especially when we have absolutely no reason to think otherwise. It’d be like entering 2 + 2 into a calculator and anything BUT 4 coming up on the screen.
On September 10, 2006 despite Lisa’s cramping, discomfort, and a lengthy ultrasound, we were assured by nurses that, “Everything is OK.” Therefore, as a father, husband, and human being I had absolutely no reason to think otherwise. My expectations as we drove away from the hospital on our way home were that everything was OK. Well, it wasn’t. A few hours later, in my mind 2 + 2 did not equal 4. At that time in my life 2 + 2 equaled everything BUT 4!
During the moments leading up to 1:57am the following morning I was in disarray. Here I was racing back to the hospital where just a few hours earlier everything was OK. What the heck was going on?!?! I still don’t know, and I never asked why. I never asked God why, that is. William was born 14 weeks early, under 2lbs, with multiple complications, yet I never asked God, “Why, my son?” Nope, not once.
I was going through hell, it seemed. The last thing that I wanted to be asked was “Are you OK?” NO!!! Of course, I’d lie. I wasn’t OK. I was in pain. Sometimes I’d hear, “I know how you feel.” NO YOU DON’T! Let me tell you something. When you’re in your own skin, no one feels it like you do! I was in a constant mental and emotional battle! At times it was as if I were in a trance. I’d walk past the nursery several times each day. That was torture. It was right outside the NICU. This is where the full term babies were placed right after birth, I guessed. For me, looking at the babies behind that paned glass was like looking at giants. Believe it or not, sometimes I saw them. Sometimes I did not. Sure, they were there every day. I just chose not to see them.
When I was a little boy one of my favorite things to do was play my Mattel Handheld Football Game. It was a little bigger than an iPhone. It was about 6″ long and 3.5″ wide. William was barely twice that size when he was born. It was all white and had 6 small buttons to play defense, kick, and score touchdowns. The object of the game was to defend and score. I loved it. I’d play it for hours and lose all sense of time. When you scored, a cluster of beeps would play. I’ll never forget the melody.
As I sat at William’s bedside in the NICU I’d often hear a cluster of beeps. Kinda like my Mattel Handheld. Similar but much different. This was no game. The beeps were indicators, not touchdowns. Indicators of oxygen flowing. Indicators of breathing. Indicators of life. The beeps were constant in the beginning. Intimidating. Overpowering. Annoying! They seemed to play for hours. I’d lose all sense of time. After while, it was just background noise. Until that dreaded squeal! A high pitched sound followed by a really lowww, dull growl. I’ll never forget the melody.
I loathed that sound! It meant apnea and bradycardia. Apnea meant that William stopped breathing for more than 20 seconds and caused his heart rate to fall under 100 beats per minute, bradycardia. (Sigh.) Normal was 120-160! His immature nervous and muscular system gave him a condition called Apnea of Prematurity. Meaning, at times his brain either failed to tell him to breathe or his immature muscular system wasn’t strong enough to keep his airway open. When William lost his breath, I held mine. When his heart slowed, my heart raced and sank. The 6 small buttons to defend and score were no where in sight. I felt helpless.
There is scared and there is afraid. I was afraid! Look at William, look at the monitor, look up for a nurse. Look at William, look at the monitor, look up for a nurse. LOOK AT WILLIAM! LOOK AT THE MONITOR! LOOK UP FOR A NURSE! Finally, a nurse! She gets William settled, resets the monitor, “He’s fine,” she says, and walks away. “Phew!” I’d exhale. Kinda like when I was a little boy when I thought I lost my Mattel Handheld. Look in my room, look under my bed, look under the couch. My mother would find it, hand it to me, and walk away. “Phew!” I’d exhale. Similar but much different….