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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. |
| Jack was admitted to the pediatric unit around 3pm that afternoon. The wait was longer, because he was supposed to have a private room. At least until they knew where the infection was coming from and if it was contagious. Going up in the elevator that we had taken so many times just the week before was heart-breaking. This fun, energetic, sweet little guy was supposed to be okay. Not even twenty-four hours ago, he had been pounding on the bathtub while his brother took a bath. Jack had been so mad. He loves his bath and he can't take one for at least a couple of weeks. So, he had stood by the bathtub and splashed his hands over the side in the water. Nate had laughed at him and Jack had grinned back. Then, he had strained with all his might to get into the tub, his little body folded almost in two, diaper in the air. I had laughed along with the boys and shook my head at Jack's determination. . . What happened? I feel so lost. So scared. Jack's white blood cell count is 27. It's supposed to be under 12. God, please let it go down tomorrow. Please let the antibiotic work. Please watch over him. Please, God? Please? |
| Tuesday morning, Jack woke up and cried. Eyes not yet open, he crawled to the side of the crib and reached for me. I pulled him into my arms and kissed his forehead. Upon feeling his skin, I immediately drew back and looked closely at him. He was cool. Cool as a cucumber, is the phrase we use in our family. Jack hadn't had tylenol since bedtime, yet this morning he didn't have a fever. Oh, praise God! His fever had broken. Throughout the day, Jack showed signs of getting better. He began drinking apple juice and eating some rice cereal. He fussed because he wanted to get down and play. That afternoon, the nurses agreed to free him from his monitors and his IV for awhile so he could go down to the playroom. For almost an hour, he crawled around the playroom, loving, in particular, a Fisher-Price car ramp that he could stand next to and play. We let him stay in the playroom until he got too tired. He still tired very easily and was sleeping much of the day. But, he was getting better! The doctors still hadn't found the source of the infection and were having trouble deciding what to do. He didn't have a team of doctors, he had an entire league of them. He had the pediatricians on the 5th floor; he had the pediatric neurosurgeons; he had the pediatric plastic surgeons. From around 7am until 11am, doctors, residents, and interns made the rounds to check on Jack. He learned it wasn't a good sign when anyone with a name badge entered his room. Just the sight of scrubs, a white coat, or a name badge made him cry. Poor little guy. The nurses loved him and tried so hard to make friends with him. Unfortunately, they were also the ones to check his vitals, fix his monitors, and redo his IV. He was scared of his nurses. All these people together, working to make our Jack healthy. . . how do you say thank you for that? How do you say thank you for someone making sure your child comes home with you? I don't know. I said thank you to everyone who came into Jack's room; every time they came in. And I prayed. I prayed for blessings for these people who do God's work every minute of their day. Who go without sleep, without eating, without seeing their own families, to make sure that my child is okay. God, bless them. |
| My dear friends, Over the past several months, I have been writing my youngest son's story. Sweet Jack, who was a surprise blessing to our family, and is the apple of all of our eyes. He has taught us so much about joy, prayer, and faith. It is hard to believe all the highs and lows we have experienced over this past year. We thank God every minute for this little boy He has graced us with. Jack is now home and well, and completing a course of oral antibiotics. We are looking forward to a restful and wonderful winter, simply enjoying our family. Accepting each day as a blessing, just to be together. I look forward to the day when Jack is grown and can read his story. I imagine him, tall and handsome, his grin still melting my heart as easily as it does now, learning about his first year of life, and how we loved him. I want to thank you. For reading Jack's story. For encouraging words when we were having dark days. For caring about this little boy that we love. Writing about this year has helped me through days that I thought would never end and brought me a peace through this gift of writing that God has given me. Please know that your prayers have been felt and your kindness has been heartwarming. We pray that God blesses you in your lives as He has blessed Jack's and ours. God bless you. |
| It's amazing. For the past year, there have been appointments and surgeries looming in the distance, and you never quite fully forget that they are there. I would have different times, during the day and night, where I would feel panicked. My chest would tighten and my stomach would clench up. I would start breathing faster and I would feel terrified. On really good days, I'd even have to take a minute and try to remember why I was scared. On bad days, I would know immediately. My Jack, my baby, was going to have major surgery. Now, the surgery is over. Except for the long, thin, purple line down his spine, no one would guess what he's been through. He laughs and plays and turned one year old. He grows, I think, by the minute. I look at him . . . and I'm forgetting. Forgetting the heartache and the fear. Forgetting the hurt. Sometimes, I wonder why I even got so scared. Isn't that amazing? What a blessing the Lord gives us that He can do this. I got my pictures back from when Jack was in the hospital for surgery. I was sitting in the van, leafing through the packs, when I found them. A picture of Jack, sleeping in the crib in the hospital hotel room. I took that so if anything happened, I would have pictures of the last times we were together. (Oh, that hurts.) A picture of Jack, lying in the red wagon, under his blanket, looking up at us, as he was wheeled away for surgery. Jack in his hospital crib, right after surgery. Wires and tubes sneaking out from under the blanket as he sleeps. A picture of my husband holding Jack, the first day after surgery. Jack's eyes are heavy-lidded and he looks dazed. The drain tube and bulb snake out of Jack's back and rest on my husband's leg. He looks so little in the pictures. So fragile. It reminds me of the fear. It brings it back. I look through them once, quickly, and then go through them, again, slowly. I'm crying by the time I finish. I close up the pack and place them on the stack. I say a prayer to God for the gift He has given us. I am . . . relieved. I am blessed. I am loved. And I know I won't look at those pictures again for a long time. |
| Our little man is taking his first steps! Hurray, hurray! Jack's walking has been a source of worry for us. His sisters both walked at nine months and his brother walked at ten months, so as Jack hit his first birthday and still wasn't walking, we worried. He has been seeing a physical therapist once a month, who evaluates him, and we belong to a physical therapy play group. The two physical therapists shake their head when I worry and haul out their charts. "See?" they say, as they point to age-appropriate milestones, "Most kids don't walk until they're one year old. Jack is right on target. Quit worrying!" Being his mother, which puts me in the position as head-worrier, and knowing that he has spina bifida, I worried, anyway. I would watch how he moved his feet when he walked behind his walker. I would count how many seconds he could stand alone. I would hold his hands and encourage him to walk with me. He didn't like that at all. Crawling was much faster and gave him much more freedom of choice. My husband and I would sit a small distance apart and make a game of him "walking" back and forth between us. Still, he didn't walk. Finally, it seemed, he began to show desire to walk. He would stand by the couch and let go, then bolt toward the other side of the room. He would take two or three fast, off-kilter, lurching steps before falling, face-first, on the carpet. Poor little guy! We were so happy to see him trying that we would laugh as we picked him up and loved up his owies. He had decided he wanted to walk, therefore, he thought he should be able to. He neglected to take into consideration that he should practice and go slow, first. Now, our little toddler is toddling! His record is about half a dozen steps, but he regularly is able to take two or three. We are so proud of him. This little boy has overcome so much and is so determined. He doesn't realize that there was ever even a question that he might not walk. God's love is so much! |
| Yesterday, I had a slight panic attack. Our past year has been slightly stressful. Jack's first year has been, of course, filled with many joys and many tears. We are about two weeks away from buying a bigger house. A two-story with four bedrooms versus the small, three-bedroom ranch we are in at the moment. My husband is the sole provider in our family, while I stay home with our four kids. So, understandably, the decision to commit to a higher mortgage is both scary and daunting. We send our school-agers to a christian school, which is only possible through my husband's bonus every year. This year, his bonus is hovering at 35%; not enough for tuition. So, last evening, when my poor husband came home from work, he had to deal with a panicky, tearful wife. I had my tirade and a few tears. My husband sat and listened, quietly, through it all and said, "We'll be okay. You let me worry about it." Solid and rock-steady, he guides his family through so much. He is our voice of loving calm. I cried that night as I said my prayers. Not out of fear or worry, but out of thankfullness. God, thank you for all your blessings. We have lived in this small house for eight years and it has kept us warm and dry and safe. It has seen our children take their first steps, heard their first words, felt their first crayon marks. We worried when we bought this house, but we placed all our trust in you, and, Lord, you have never faltered. Let us place our trust in you, faithfully again, as we buy this new house. You found this house and showed it to us and gave it to us. May we never forget who is in control. Lord, thank you for my husband. For his strength and his solidness. For taking the worry upon himself to care for his family. For the hours he works, the nights, the weekends, the holidays. May I not grumble at him when he has to work late, but be so thankful that I have a husband that only wants to take care of us. That he works so hard to give everything he can to his family. Christian schools, soccer leagues, horse-riding lessons, and more. Somehow, making sure our children have it, even when it seems impossible. He budgets to the penny, Lord. He is a careful and responsible steward of your gifts. Thank you, that Caitlin and Ashley can to go a christian school. That they come home, talking of bible stories and memorizing bible verses. Caitlin comes to me and tells me she is so glad she can go to her school, because, ". . . they can't talk about God in the public schools, Mom. Isn't that sad? I'm so glad we can!" Lord, let this money that we are using for school, and not for a new car or a fancy vacation, be laying the groundwork in their lives for a strong and lasting relationship with you. Let us, as parents, be showing them our priorities, with you as number one. Every year, Lord, we depend on you for their tuition. From the very first year, when Caitlin was in kindergarten, we have prayed at bonus time. Without that money, we couldn't afford it. And even at times when things seemed bleak, and we didn't think we'd get enough, you were faithful. You have provided. Thank you. Not only for their schooling, but for our trust. If there comes a year, possibly this one, that we can't afford it, then, Lord, let us trust that you know best and you are faithful. Help us to be wise enough to make the right decisions. Lord, I have saved him for the end. Thank you, for Jack. This little boy, who has given us so much laughter and so much happiness. I see him and I wonder at your glory. I am in awe of your grace and your love. We put him in your hands, from the very beginning, Lord. We told you, "You gave us this surprise, this wonderful, new, little baby and you know what you have planned for him." We have trusted as we have never needed to trust before. We have felt comfort in your arms. We have cried on your shoulder. We have thrown our heads back, looking above, and whispered, "Thank you," meaning it more than we have ever meant anything. We have danced. God, thank you for Jack. Thank you for your gift of him. Thank you for all of our children. For Caitlin, so serene and thoughtful. Growing up into a young lady. For Ashley, so full of spirit and joy. Her love is overwhelming and never taken for granted. For Nathan, so charming and sweet. His loving, "I miss you, Momma." when I just run to the grocery store. For Jack. Our Jack. God, you have given us so much. Thank you. |
| Back, again. Logging on, I felt such a familiarity and comfort. My little piece of the world where I am me, not always "wife" or "mom." We have had a crazy couple of weeks and I need this breather. I took the girls to Walt Disney World for vacation. Caitlin, at almost 8 1/2 years old, was reaching that precarious age where she turns her nose up at "childish" things, but has no idea where she belongs, yet. I grieved to think that by the time the boys were old enough for Walt Disney World (WDW), Caitlin would find it . . . boring. I longed to bring her when she would feel the magic and when I would be able to see her eyes light up with joy and enchantment. I also have taken the position that I will never, ever bring a toddler to WDW. There is a ban on bottles and diapers and naptimes for the Magic Kingdom. So, I found myself with a just-turned-one-year-old, who is at least two years away from a WDW visit, and an eight-year-old, who is too close to the passage into pre-teen. I asked my husband what he would think of me taking the girls, while he stayed home with the boys. Proving, once again, that he is truly my prince, he embraced the idea. He looked forward to spending time with his sons, being their sole, responsible parent. He strode about the house, proclaiming, "Just the boys. Boy things. Man things." He planned wrestling events, tickling fiascos, and trips to Home Depot. And, so, we went. We added my sister-in-law and her two oldest kids, Jake (6 yrs) and Whitney (4 yrs), who my kids adore, and grandma, of course. We drove from Lansing to Chicago and flew to Orlando. Five full days of bliss and magic and dreams. Caitlin flung her arms around 7 foot tall, costumed characters and grinned at me, behind the camera. Ashley, dazzled by the Princess Celebration at Cinderella's Castle, eagerly tried ride after ride. The cousins played and giggled and shared a time that we will never be able to redo, and which we will never forget. Coming home, we closed on a new house the second day back. We have spent the last week moving, cleaning, and organizing. Three of our four chiidren are sick. The kids are having a hard time sleeping. Jack's mole on the side of his face has gained two tiny dots and now he must return to the plastic surgeon for more surgery. . . And, yet, I'm content. I feel settled and grateful and happy. I read an article about mothers and stress and how we forget to take pleasure in our lives and in our families because we are always looking at what to do next or what to change, either about our lives, homes, or children. And I realized. I spent a lot of time, even at Disneyworld, trying to train my children to wait patiently, to stand still in line, to not jostle or talk too loudly. All are valuable lessons, but I sometimes forgot just to watch my girls and marvel at them and enjoy them and their excitement, vitality, and energy for this world. I don't want to make that mistake, again. And knowing that gives me such a sense of contentment. A license to enjoy my children, without always thinking of what I should be teaching them next. Bring on the finger paint! |
| Our little man is walking all over. (It makes him seem so much older.) He has that adorable, "just got off my horse" swagger, complete with funny balance adjustments. Proudly, Jack makes the circle from the living room, down the hallway, through the kitchen, through the dining room, and back into the living room. He has that satisfied grin, like a content cat. His jeans tend to drag on the ground and trip him up, so we roll the cuffs to mid-calf length. He's quite the fashion statement - Oh! Little guy toddled up and bopped me on the head with his toy sword a few times and is now grabbing me by the head for a roughhouse break - duty, and fun, calls! |
| Next week, Jack has an appointment with his pediatric urologist to check his bladder function. It's mainly follow-up testing to the testing they did before his surgery. To make sure that he did not lose any function from the surgery itself. Poor little man, he hated these tests the first time around. The second time around won't be any easier. Then, the next day, we go back to see the pediatric plastic surgeon. Jack's mole on his face has changed a little. Now there are two small dark spots in it, making it look a little like a button just above his ear. Our pediatrician suggested we have it looked at and removed. Dr. K. did such an amazing job on Jack's back that we decided to go back to him for this surgery. The scar on his back has healed perfectly and is already fading. I'm assuming that this will be an outpatient surgery, but we'll find out more at the appointment. He doesn't see his pediatric neurologist again until April. He's doing so good that hopefully we can start extending the time between neurologist appointments. He is a funny little man, who has added "cheese" to the list of words he can say. Not for pictures, but for actual cheese. He loves it. Spoiled like he is, he's decided he doesn't want to give up his bottle, even though we're pushing mightily for a sippy cup. But we have made strides in taking away his pacifier and it is now saved for times when it is desperately needed. He's a little charmer, who grins at everyone and then tucks his head into my neck, playing shy. Of course, if they then quit talking to him, he babbles away at them and waves until he has their attention again. He gives the greatest hugs and the biggest loves. Sweet Jack. |
| Ugh, tomorrow is Jack's pediatric urology appointment at the children's hospital. I am already feeling sorry for him; I know how much these tests are going to hurt. He will need a catheter so they can fill up his bladder and then test the strenth with which his muscles push out the urine. He has a really tight muscle in his penis (oh, boy, he's going to hate me for typing that when he's older!), so getting catherized is extremely painful for him. At the local hospital, they tried three times and still couldn't get the catheter in. He screams and cries and tries to get away. It breaks my heart. We're both in tears by the end of a catheter session. I don't know if they'll check his bladder reflux tomorrow. I hope not. That's the test where they fill up his bladder and then x-ray him, as he pees. For that, he has to be stretched out, arms up, and secured to a "spit", as I call it, so they can turn him from side to side like a tootsie roll as they x-ray. They even secure his head in place with a band. Talk about terror for a one-year old. I'm praying for good results. As I've said before, having potty-training problems would be so very minor compared to what he could be dealing with, so we are definitely blessed and grateful. But, as his mother, I agonize over him being teased for wearing pull-ups past the preschool years. I still pray for him for every minor wish, alongside the big ones. Please pray for Jack's pain and fear during the tests and that he finds distraction and comfort soon after. And please pray for positive results. Thank you all. |
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