I thought I knew what pain was. I remember how nervous I was the morning we went to Vanderbilt to have Christian. I was so scared because I knew what could happen. I knew what the doctors had said. I knew that it was going to be hard. When Christian was born at 9:32am, I was so happy. I was scared, but relieved that he was OK. At 4 o'clock that afternoon I was finally able to make the 1/3 mile trek to see him in the NICU. When I saw him for the first time, I knew immediately that he was blind, although I wouldn't admit it for weeks. The first time I had ever laid eyes on my baby boy besides in the OR, and all I could see was that he was blind.
And then, the pain grew. I would go to Wal-Mart, proud mama I was, with my baby in tow. And naive little me learned a hard lesson. As I would get groceries, I would notice people walking by my buggy and slowing down for a second. I was happy to show off my beautiful baby until I realized that these admirers were not smiling and cooing at Christian. Some had a look of sadness on their face. Some would mouth "Poor baby." Others would look at him with disgust or unbelief on their face. Some would get brave and ask "What's wrong with him?" Little children would walk by and ask, "Mommy, what is that?" or "Where are his eyes?" The first time it happened I wanted to run out of the store, forget my groceries and go home. But I didn't. I fought back the tears and finished shopping. I tried explaining Christian's condition to people. I tried conveying to them that this was my precious son. But most people couldn't stop staring long enough to hear. After that, I promised Christian that when he was old enough to understand, he would never hear anyone say anything negative about his appearance, at least not without some recourse. I could not imagine, and still don't, why people who looked at Christian saw his disability first. Why couldn't they see Christian? Why couldn't they see how beautiful he was? Why couldn't they see that he was my baby and I loved him? I still don't know the answer to those questions.
And then, the pain grew. A lot of people were pregnant at the same time as I was, so obviously, everyone was having babies when I was. The difference was, their babies were healthy. Their babies were born two weeks after Christian and they were already home from the hospital, while I sat at Vanderbilt with my 4 week old. Their baby was learning to smile, Christian didn't know what a smile was. They would get pictures made of their baby. I was too scared to get professional pictures because of the reaction I expected from people in the photo studio. They were taking their babies out and having fun and enjoying them. I was taking Christian to the doctor three times a week. They were crying cause their baby had to get shots. I was holding my baby down three times in one week to have blood drawn. I just wanted to be normal. I just wanted to have a healthy baby. I just wanted Christian to smile. I just wanted to not go to Vanderbilt today. My heart was broken because I didn't get to do the special mommy things, or enjoy those first precious days with him. I didn't even get to hold him until he was two days old. I was too busy going to doctor appointments, changing out gauze's, running feeds through a machine, giving medicine, prepping for surgery.
And then, the pain grew. I would go to Wal-Mart, proud mama I was, with my baby in tow. And naive little me learned a hard lesson. As I would get groceries, I would notice people walking by my buggy and slowing down for a second. I was happy to show off my beautiful baby until I realized that these admirers were not smiling and cooing at Christian. Some had a look of sadness on their face. Some would mouth "Poor baby." Others would look at him with disgust or unbelief on their face. Some would get brave and ask "What's wrong with him?" Little children would walk by and ask, "Mommy, what is that?" or "Where are his eyes?" The first time it happened I wanted to run out of the store, forget my groceries and go home. But I didn't. I fought back the tears and finished shopping. I tried explaining Christian's condition to people. I tried conveying to them that this was my precious son. But most people couldn't stop staring long enough to hear. After that, I promised Christian that when he was old enough to understand, he would never hear anyone say anything negative about his appearance, at least not without some recourse. I could not imagine, and still don't, why people who looked at Christian saw his disability first. Why couldn't they see Christian? Why couldn't they see how beautiful he was? Why couldn't they see that he was my baby and I loved him? I still don't know the answer to those questions.
And then, the pain grew. A lot of people were pregnant at the same time as I was, so obviously, everyone was having babies when I was. The difference was, their babies were healthy. Their babies were born two weeks after Christian and they were already home from the hospital, while I sat at Vanderbilt with my 4 week old. Their baby was learning to smile, Christian didn't know what a smile was. They would get pictures made of their baby. I was too scared to get professional pictures because of the reaction I expected from people in the photo studio. They were taking their babies out and having fun and enjoying them. I was taking Christian to the doctor three times a week. They were crying cause their baby had to get shots. I was holding my baby down three times in one week to have blood drawn. I just wanted to be normal. I just wanted to have a healthy baby. I just wanted Christian to smile. I just wanted to not go to Vanderbilt today. My heart was broken because I didn't get to do the special mommy things, or enjoy those first precious days with him. I didn't even get to hold him until he was two days old. I was too busy going to doctor appointments, changing out gauze's, running feeds through a machine, giving medicine, prepping for surgery.
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| Before surgery |
And then the pain grew. I thought I knew pain. I thought I had been through a lot until May 23rd, 2011. Christian had his first reconstructive plastic surgery. The week leading up to the surgery, I was a mess. I couldn't think straight, I snapped at people, I cried non stop. I was a wreck. I wanted to close my eyes, and wake up and it all have been a dream. But it wasn't. It was reality, and it was my life. The day came, and we had to be at Vanderbilt early. Christian hadn't eaten since about midnight the night before, and I was stressed. I had to hold him down one more time so they could draw more blood. This was the first time I ever cried when he got a needle stick. When they took Christian out of my arms to take him to surgery, I thought I was going to faint. We waited somewhere around 7 or 8 hours before the surgery was over. When they called us back to recovery to see Christian, he was just waking up from anesthesia. He was swollen to twice his normal size, breathing frantically, and moaning in pain. I broke down. I burst into tears and grabbed Chris. The anesthesiologist was standing there and I asked him if Christian was OK. He yelled at me. I ignored him and went to Christian. I talked to him and tried to not let him hear me cry because I knew he had to be so scared. I told him he was OK, and that he was the strongest person I knew, and how much I loved him. When they began moving his bed to the PICU, he began to cry harder.I begged them to give him more pain medicine. He could barely open his mouth from the swelling, he was covered in blood, bruised, and I couldn't help him. I stayed with him for the 5 days he was in the hospital. The first night, he cried all night and so did I. The morphine wasn't working. I finally talked the nurse into asking for different pain medicine. When he got oxycodone, he finally seemed to get some relief. My heart was again broken because I could only imagine what kind of pain he was in, and I knew that this would be repeated on his little body a dozen more times. I'm still not sure if I can handle the next surgery or not. I know that I have to find a way somehow. Christian needs me and I need him.
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| All of us in the holding room, waiting for Christian to be taken back to surgery. |
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| After surgery |
Lacey, I cannot begin to imagine what little Christian is going through, or you and your family members are going through. He is precious and God knows what we can handle. I feel as if I were in your situation, trusting God is the only thing that would get me through. I will keep praying for you guys.
ReplyDeleteLacey, i wish i could give u a hug. I had the same kind of surgery 3in times. I never knew what i was in for until my daughter went through the same thing. It was the hardest thing ever. And like Christian, Delilah will need more surgeries. But i have faith that since we have connected with other mom going through the same thing that it might be a little easier to cope. Stay Strong Mama!
ReplyDeleteLacey,
ReplyDeletethank you for sharing your story. Our first son was born with a unilateral cleft lip/palate. And I can relate to many of the things that you share, although certainly not all. I can understand praying that our son's disability would only be a cleft lip/palate. When I was pregnant, Clark had many markers for chromosome abnormalities, and I cried, begging God to give him only his cleft. I also remember the stares and comments he would get, which if I were in your shoes, may seem minimal. But they still hurt, none the less. Because Clark was so beautiful the way God made him too. I remember how emotional I was before Clark's first closure surgery. How indescribably sad. He would be forever changed, forever different. For the rest of society, he would look more "normal", but for me, he looked like Clark with his cleft. I remember the first time we saw him in recovery room, I broke down, hysterically crying. I told my husband, he looked awful! Of course he was swollen, bruised, bleeding, and in a considerable amount of pain. But it's something that no one can imagine until they've been in your shoes. How much you can love your child who is "different" or "birth defected". And love them just the way God made them. I'll be praying for you and your beautiful little boy.
i dont have any words. im glad you and christian made it thru all this. my heart is with you all
ReplyDelete