Just a few nights ago I scoured my house looking for an old hat. I looked in the attic, the garage, my room and every closet. I looked everywhere. I ended up in the spare room again searching through drawers. The last drawer that I opened captured me. It was filled with teddy bears that William had received from CHKD for each surgery. He’s had 12 surgeries. I hate those teddy bears. They remind me of all of our trips to that hospital. I am reminded of the sick feeling that I get when I walk through the doors. They remind me of the waiting room and the pain that William has endured. I hate that for him. I hate that he has had to face that pain. I hate that he has had to do it alone.
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.
Perhaps that was my way of dealing with the pain. Ignore! Ignore! Ignore! In my mind, those babies were Goliath. William was David! It wasn’t long before I, myself, started calling William, Jumbo! Lisa hated that. Looking back, I guess it was my way of seeing my son as bigger than life. He was really tiny. But he was my world. It is said that the apple doesn’t fall too far from the tree. If that’s the case, and William is the apple and I am the tree, then how strong am I? I just don’t see it that way. I see it as, “This is how it is. Now deal with it! Everyday is everyday.” I still marvel at William’s strength! He actually went through it all. A turbulent birth, several brain surgeries, spinal taps, central line surgery, eye surgeries, hernia surgery, and more.
Yet, I never asked God why, until I visited a friend and his wife in the hospital about 2 years after William was born. It was actually a few days before William’s 2nd birthday. They had a little boy, Brody. I held him for a while. I’ll never forget how blown away I was. I wasn’t blown away because I was holding a newborn. I was blown away because I was holding a newborn in a hospital, in a private room with a TV, carry-out pizza, with no monitors, no oxygen, no beeps, no Bradycardia and no apnea. I WAS HOLDING A BABY AND I WASN’T IN A NICU!!! Frankly, it was very strange. I didn’t say anything to my friends. I just sat there numb. Brody was gazing up at me and I was gazing right back at Brody, IN AWE! I said my goodbyes, held Brody one more time, then left. As I walked out of the room I began to cry. I held on until I got back to my car. I had all the happiness in the world for my friends. So happy that they gave birth to a perfectly healthy baby boy. On the other hand, I was in anguish! I lost it completely when I shut my door. Melt down. I had never held a baby in a hospital outside of a NICU. Why couldn’t we have been in a normal room with our son? Why was William so different? God, what have I done wrong? God, why my son? God, why? Why? Why? Why? Why? Why?!!! I drove away. I needed windshield wipers and it wasn’t even raining outside.
I never asked why because I didn’t think I had a right to question God. I was me and God was God. That was that. Finally, I couldn’t take it anymore. I questioned God. I felt I deserved to know why! If God were going to punish me for questioning Him, then He couldn’t hurt me anymore than I was already hurting. I had hit the bottom. I had nothing left.
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….
Just when I thought there was nothing else the doctor could say to me that wouldn’t offend or upset me, he asked, “What do you want to do?” To me, that question was cruel on many levels. Maybe it wasn’t the question. Maybe it was how he prefaced it….
“Sure, your son made it this far and I didn’t expect him to be here this morning, but now he has a grade IV brain bleed in both sides of his brain.” (Grade IV brain bleed is the worst possible….cerebral palsy is certain) The doctor continued on, “On top of this he, is on 3 blood pressure medications, has a collapsed lung, has blood coming out of his stomach, has acid in his blood, has jaundice, and is unable to breathe on his own. Your son is likely to be in a wheelchair for the rest of his life. He will probably be blind, will have to be fed and won’t be able to care for himself. That’s IF he makes it. I’ve seen a number of these cases. 35% of these babies don’t make it. Now we’re talking quality of life. Is this the life you want for your son? WHAT DO YOU WANT TO DO?” (He walked out to give us time to think about it)
This was it. This was the day. This was THE worst day of my life. In the prenatal consult we met to discuss my son’s fate; the doctor, the head nurse, my mom, dad, Lisa, and me. Life changing. Not an easy topic. In spite of the group setting I had a very lonely feeling. There’s something about a person wearing a long white (pure white) doctor’s coat with a Dr. So and So monogrammed on their chest. The words that came out of his mouth were real! They were scathing. I mean they felt alive. Like they had more life in them than William! There was a part of me that thought, “What if he’s right?” I actually visualized my son slumped over in a wheelchair, blind while I fed him. Yet, I could not give up on my son. I’m his father. I’m his dad. I refused!
When you’re sitting in a small, white room where the couch is too small and there aren’t enough chairs, faith takes on a whole new meaning. Despite the strife looming in that room, I could feel faith. Faith has a feeling. I could touch it. Faith had His arms wrapped around me. The doctor told us that 35% of these babies don’t make it. We were going with the 65%! I tearfully said, “Doc, we believe in a higher being. My son’s in there fighting. If he’s fighting, then we’re out here fighting for him.”
That night Lisa and I sat with William. He held our hands. He opened
his eyes and looked at us.
When the doctor told us that he didn’t expect William to survive through the week I hurt to my soul. It was debilitating. I thought, “How can he say something like that? How can he be so heartless?” The problem was that this stuff was real. I mean it was real, yet I still couldn’t wrap my head around it. I couldn’t process the information. I was angry, hurt, and offended that he even said it. Why? Because my son was down the hall fighting for his life, literally! It wasn’t that I thought my son was going to die. It was the possibility. That’s what scared me.
William had a number of obstacles in front of him. At first, he just had bleeding in the right side of his brain. A day later the bleeding was in both sides. In addition to that, he had a collapsed lung, high
blood pressure, his blood sugar was through the roof, and he was unable to breathe on his own so he was on 100% oxygen. Uphill battle? There’s no feeling like helplessness. I just wanted to do something for him…anything! Nothing like looking down at your child, who can fit in the palm of your hand, eyes covered in gauze because their underdeveloped, who’s laying inside of a container the size and shape of a cookie sheet wrapped in saran wrap with steam being blown over him (along with a heat lamp) to keep him warm.
Unfortunately, despite William’s uphill battle, life went on. My day started at 430am and still does. I’d arrive at our gym before 6am, went to visit with William around 7am for about an hour, return to the
gym to work, close the gym at 8pm, go back to visit with William until 11pm, go home and hopefully get some sleep without hearing from the hospital, then get up the next day and do it all over again. This went on for 92 days. Some days were better than others, of course. Either way, I got to see my boy! I guess everyday was a good day. Perspective.
Our favorite nurse, Debbie, told us to keep a journal. She said to write in it every day and one day we would appreciate looking back at it. Today is one of those days. Regardless of the storm William,
Lisa and me were going through I was able to write some encouraging words in our journal.
September 11, 2006 was an awesome and traumatic day for me. Awesome because my son, William, was born just after midnight. Traumatic because his birth was 14 weeks early AND he weighed 1lb-14oz. Ya, they call that a 26 weeker. That was my introduction to the word preemie.
Just the evening before my wife, Lisa, and I spent a few hours at Virginia Beach General getting checked on by nurses because of cramping. They gave us a thumbs up. Everything was fine. So, around 10pm we left the hospital reassured. At 12:07am reassurance went out the window. I was awakened by excruciating screams from Lisa. She was in the bathroom, on the toilet, doubled over, bleeding! The only words I could get out were, “what’s wrong?” I was in a panic, a frenzy! My wife was in agonizing pain and I felt helpless. I picked her up, put her on the bed, put her clothes on and the next thing I know we’re flying down Laskin Road headed for the hospital. I pulled up and tried to go to the same office that we were at just a few hours earlier BUT IT WAS CLOSED! To the emergency room we went! I ran in looking for help and found the security guard. All he said was, “Sir, what’s the matter?” and I lost it! I broke down and cried. “My wife. She needs help. She’s out in the car.” The security guard followed me outside with a wheelchair. I helped Lisa out of the car and as soon as she stood up her water broke. At the time, I had absolutely no idea that William would be born shortly thereafter. I just thought my wife was in a lot of pain, the doctors would help her and we’d go back home. NOPE!
The security guard led the way upstairs. Well, actually I led the way. I was pushing Lisa in the wheelchair while he was 4 or 5 steps behind me giving me directions! We got to an empty room that was quickly filled with doctors and nurses. Unreal! It was as if they all just appeared. Moments later one of the nurses tells me to hold Lisa’s leg back. I had the right leg and the nurse had the left. At 1:57a William M. Yancey Jr was born!!!! Life as we knew it changed in that instant.
Amongst several other serious complications, William’s most severe problem was the IVH Grade IV brain bleed. Grade IV is the most severe brain bleed possible. It leaves babies with severe brain damage, Cerebral Palsy along with a list of other complications assuming they even survive.
William was born on a Monday. His Neonatologist met with us and would be off until Friday. I’ll never forget what he told us when he returned that Friday. He said, “When I came in this morning I did not expect your son to still be here.” That cut through me like a knife. It wasn’t a feeling of hitting rock bottom. It felt more like I was falling in an abyss.