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 |  Journal writings about my youngest son's journey with spina bifida |
| My youngest child was born with a spinal anomaly. From the 17th week of my pregnancy, we knew that something was not right. This journal chronicles all the feelings and experiences we have gone through. From utter helplessness to wracking tears to immeasurable gratitude to God for His blessings. I will take you on this path that we have walked and I hope you will see the encompassing love for our son and our faith in the Lord. God bless. |
| My husband called back after about half an hour. He had talked directly to the surgeon. He told me the nurse was right. Jack's official diagnosis was spina bifida. He talked slowly and reassuringly. Yes, a myleomeningecele was the worst form, but Jack had a very mild case. In fact, the surgeon said, it was only spina bifida by default. The opening was at the end of the spine, too far down, they thought, to affect him at all. Oh, he may have some delay in being able to be potty-trained. Maybe he wouldn't be potty-trained until 6 or 7 years old because the muscles and nerves were weaker. But there would be no fluid on the brain. There would be no paralysis. "He has full use of his legs, as far as we can tell. He also seems to have full sensation in his feet and toes, from the tests we've done," the surgeon had told my husband. Spina bifida is not a degenerative condition. However Jack's physical condition was now, it would stay that way. I listened to my husband and began the trip back from the fear and the grief. It turned to anger. How could that nurse call the house and tell me Jack had spina bifida, with no explanations??? How could she leave out the information that his was a mild condition? How could she be so thoughtless? So oblivious to the feelings a parent has for their child? So ignorant. Why would the surgeon have a nurse call with such unexpected and potentially devastating information? Didn't he understand that we would have questions? That this was something that wasn't even on our radar? I indignantly questioned my husband. And, later, the reality hit me. Yes, the surgeon's office had acted carelessly. But, it wasn't so much the way the information was presented that hurt me. It was the diagnosis. It was having to say Jack had spina bifida. Before, we could say that he had a saccrocogheal teratoma and it had been removed. Taken care of. Fixed. This diagnosis was a life-long diagnosis. One I would have to say aloud and know that it was forever. Whether or not it was mild, it meant forever having to say that my son had a condition. And it hurt to say those words. Right or wrong, it hurt to admit that my son had something wrong with him. Even worse, it was something that might be my fault. |
| From the first time that the doctors suspected a neural tube defect, they asked. "Were you taking vitamins?" My oldest daughter is eight years old and I had been a subscriber of parenting magazines since before she was born. I knew what they meant. A deficiency in folic acid can cause neural tube problems, specifically, spina bifida. The ironic thing was that my oldest son was only eight months old when I got pregnant with Jack. I was still nursing him, so I was still taking prenatal supplements. But, you know, that doesn't take away the guilt. I went over and over in my mind whether I had missed taking my vitamins some days. Whether or not that could have had anything to do with it. My older son was a voracious eater and nursed a lot. I hadn't known I was pregnant for the first month. If I had known right away and quit nursing right away, would that have made a difference? I read an article that said that nursing one baby while pregnant with another baby could cause a deficiency in another vitamin that also causes neural tube defects. What had I done? For the first month or two after this new information, I would feel like I was getting through this. That things were calming down, emotionally. And, then, the thought, "it's probably my fault," would rip through my mind. My mind would clamp down like a vise on that thought and push it harder and harder against my heart. Looking back, maybe I was trying to punish myself for what I might have done. The more it hurt me, the more penance I was paying. The pain would be relative to how sorry I was. Which was everything. Jack. How I love him. His big blue eyes and his toothless grin. His chubby thighs and his blond hair that has just the hint of curl. His one ear that sticks out the littlest bit farther than the other. The way he grabs onto me when I pick him up and rests his head on my shoulder. How he grabs at my shirt and pulls at it when he wants to nurse, sometimes giving anyone around a good peek at what color bra I'm wearing. How he squeals in delight when his sister gets right in his face and goes, "Boo!" The tiny dimples in his hand. The way he quiets down when I pick him up, no matter how upset he is. He feels safe with me. And he is. Now, we face more surgery. In September, we'll be at the university hospital for an operation to untether his spinal cord. I'm scared to death. Sometimes, I want to just pick him up and carry him away from all of this. To let him be a baby without tests and ultrasounds and operations and evaluations. I thank God for every moment with him. Because there was a time when I wondered if I would get even a few minutes. Every moment with Jack is a reminder of how great our Lord is to us. How miracles happen in the lives of just the average family. Where would we be without the Lord? We would be without Jack. |
| So, Jack's next surgery is only a little over a month away. I feel claustrophobic when I write that. June and July kind of sailed along. I didn't really think that much about it. But, now, it's almost the end of August and Jack's surgery is at the end of September. . . I find myself crying at times. Especially when I lay him down in his crib for either a nap or bedtime. He looks so little. His light blue sleeper pajamas (in size 2T at 9 1/2 months old!) and his full, round cheeks. I love the way his lips "pout" out when he sleeps, soft and pink. I love it when he rolls over and sighs. I can picture him, then. Lying in his crib in the hospital. They have metal rails. I can see him, attached to an IV, with monitors taped to his chest. How scared he will be. He's going through stranger anxiety right now. Will they let me stay with him until he falls asleep from the anesthesia? He'll be so scared if they take him away while he's awake. That thought destroys me. When he comes back, after the surgery, he'll be drugged. Swollen from the IV and fluids they give him during the operation. Pale. My little boy. My little baby. Do you see what I do? Every day is a little closer to that reality. My mom, so solid and there-for-us, told me that she took the week of Jack's surgery off to take care of our other kids. I felt panic. When I told my husband, later that night, I sobbed. "God, You have given us this little boy. You have saved him from so much, already, and blessed him in so many ways. I know You love him, Lord. I know You feel it when we cry for him. I know You ache with us. And I know, my dear, sweet Father, that You are telling us that You are with him. That You are protecting that boy with a love so fierce that we will only know it when we come to You. You are a warrior standing next to him, keeping him from any danger. And, yet, you take off the armour, and kneel down to kiss his forehead. As gentle as the mist. He is safe. He is loved. God, please hold this prayer in my heart over the next month. Your strength and Your love surrounding this one, little boy. Our Jack. Amen. |
| Oh, I love that little boy so much! He has four teeth on the top and two on the bottom. The bottom ones are just the tiniest bit crooked, giving him the cutest smile when he grins. Which he does a lot. This little guy, who has every right to be just the crabbiest, grouchiest, leave-me-alone(!) kind of baby, is a peach. That's what we call him. A Peach. My husband will call during the day and ask how the kids are. We'll run down the list and he'll get to Jack. "So, how's Jack?" The answer: a peach. Ready with a smile and a laugh for his siblings. Crawling down the hall, at full speed, to grab my legs, pull himself to standing, and grin up at me. Sitting on the living room floor, munching on a graham cracker with complete contentment - that's our Jack. His hair seems to have a tint of strawberry to it, in a certain light. My husband likes to "rough it up," as he walks by, which leaves Jack with a funny, pointed tuft of hair on the crown of his head. Jack's latest thing is to pound. On his highchair tray. On the couch. On my shoulder. Even on his own head. Then, he laughs up at us, as if to say, "See how funny I am?" When he's tired, I carry him to his crib and cuddle him in my arms. He lays his head on my shoulder and nestles into my neck. I sing him the same song, every night. "You are my Jackson, my only Jackson . . . " Then, I kiss his cheeks over and over and over, soft and gentle. And I whisper, "Good night, Jack. I love you." When I'm making dinner, he comes crawling around the corner into the kitchen and gives me a broad grin. Then, heads to the screen door to pound at our dog, Sam, a big black lab. That's my Jack. |
| We went on a walk around the neighborhood last night. My husband was working, so it was just myself and a whole passel (it seemed) of kids. My daughters, eight years and four years old, rode their bikes. They both chose flip-flops as their shoe of choice, over my protests that the shoes would "flip" and "flop" right off as they pedalled. Their helmets both safely on and blond hair flowing out the back of both, they argued, as they rode, about whose turn it was to be in front. Nate, who is a little over two years old, and Jack, at almost ten months, rode in the double stroller. Jack rode in back, so he could grab onto the back of Nate's seat and bounce. Their blond heads sailed smoothly down the block as I pushed. Nate looked for trucks and an opportunity to steal Jack's pacifier when I wouldn't be paying attention. Jack made noises into his hand. "Buh-buh-buh-buh-buh" he babbled, sitting straight up so he wouldn't miss anything. We stopped and dropped off some hand-me-down clothes at our neighbor's house. They have a baby boy who is almost three months old. He still has that baby smell, so as I held him for a minute, I inhaled deeply. My girls laughed at me. We were about halfway through our walk, when my four year old decided she was done and alternated between crying and complaining for the rest of the trip. At one point, she laid her head down on her handlebars and refused to budge. At another, she haughtily announced that she was going home by herself and she would even cross the road . . . all by herself. "Buh-buh-buh-buh-buh." We turned the corner towards home and we could hear our dog, whining. He was pouting at being left home. My daughers got new energy and rode ahead to comfort him. A neighbor who lives a few houses down from us, called out, "Are all those yours?" meaning kids. I grinned, proudly, and called back, "Yep! They keep me busy!" He grinned back and watched our procession down the sidewalk. Thank you, Lord, for our family. |
| Surgery is getting closer. Twenty days away. We see the plastic surgeon tomorrow. I find I'm talking too loud, sometimes. I'll be in conversation with someone, family, friends, anyone, and I'll hear my voice, loud and bright. I'll listen to it as it keeps going. I'm sounding cheerful and happy and care-free. I smile and nod and gesture as we chat about something. But my voice is just a little too loud. Inside, I'm thinking of Jack, and something is breaking. This little house of strength that I have built up inside, of positive thoughts and encouraging prayers, is being pushed apart. Fear is pushing at it from all directions and I feel like the house is breaking. It's breaking and I'm grabbing at the pieces and trying to keep it together. And the whole time I'm fighting, quietly and desperately, my voice is too loud. My husband, Brian, and I have always, throughout this whole experience, tried to be brave and strong and positive. For our other children, most of all, but also for everyone we love. This is hard enough to go through. There's no reason to make anyone else feel worse or worry about us, instead of Jack, by breaking down and showing that we're really terrified that we might lose him. (It hurts so much to even type that. As if, by typing it, I might make it come true.) My mom can sense it, sometimes, when I feel like I'm teetering on the edge. She'll hug me and won't let me go. And, then, I have to pull gently away. Because if I start to let go, I don't know what will happen. So, I keep chatting about nothing, my voice just a little too loud and my eyes just a little too big, and no one will notice. God? I'm scared. |
| The appointment with the plastic surgeon went well. The surgeon was wonderful, as we've come to find all the doctors at the children's hospital to be. He explained that the pediatric plastic surgeons are brought in to "close," because they overlap the muscles and tissue. Everyone's spine is bone, covered with skin. Because Jack's spine will need to be protected better, they pull the muscles, that are usually on either side of the spine, to overlap the spine. This gives the spinal cord more protection, especially for any possible leakage of spinal fluid. The various layers of skin and muscle will be overlapped, in varying degrees, so that there will not be straight sutures to the spinal cord. The surgeon was confident and very kind. We felt so much better after speaking with him. One of our great worries for after surgery was how we were going to try to keep an eleven-month-old still until he healed. The surgeon said that 99.95% of children healed with no problems, due to leakage or infection, with this type of closure. It's funny, isn't it, how my journal entries go from completely emotional to completely factual. I feel like that a lot. People ask me about Jack and I launch into a lecture on the basics of tethered spinal cords and surgical interventions. I calmly discuss bladder reflux, which Jack also has, and the varying degrees (Jack has level II). Medical terminology is fluent and common. Plans and schedules are set for my husband's work, for both of our daughters' school, for after-school activities. . . I explain, and plan, and discuss, and decide. And try to forget why we're doing it all. |
| Oh, God, it's getting closer. Lord, I'm so scared. I need your strength and your comfort. Please, Lord, please let him be okay. He's just a little boy. Just a baby. Please, God, be with him. Be with him through the surgery and the recovery. Keep him safe in your arms and take him through it safely. Let everything go okay. Oh, God, please. We love him so much. Please, God, keep him safe. Please keep our little boy safe for us. We need him. |
| What a morning. My husband got our oldest daughter off to school, while I was in charge of the other three. Jack pulled Nate's full bowl of cereal off the table and all over himself and the floor. His expression of surprise made me laugh. I managed to get everyone dressed and fed and was getting ready to bring desserts to the teachers at school. It was our "teacher treats" day. There was also an assembly at 8:30am that I wanted to get to. Hurrying, I rounded the corner to the kitchen and, behold, there was Nate, our two year old. He was sitting on the counter, a bowl of powdered sugar between his legs and powdered sugar layering him and everything around him. He was dressed in a blue T-shirt and blue jean overalls. Now, covered in white handprints and smears. Luckily, that made me laugh, too. However, now we were seriously late for the assembly and we still had to bring in the treats. A morning that started with love and laughter, which could have been filled with frustration, is God's grace. And, then, (now I'm starting to cry, yet again) I turned on the computer to quickly check our email. I find this wonderful collection of blog comments on writing.com. Prayers and thoughtful, caring words that came at a time when I needed them most. Little Jack, who is so loved and so blessed, is surrounded by prayers. It's a soft field around him that will keep him close to God. And I will never be able to explain how much comfort and kindness I have found in your words. Thank you for praying for Jack. As heartfelt and as simply as I can tell you: thank you. |
| Three days. Three days to fill him up with all the love and health and strength he will need. Three days to ready ourselves for one of the scariest moments of our lives. Three days to hold him and kiss him and hug him. Three days. . . to pray. |
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