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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. |
| Yes, yes, yes! The power of prayer! Jack's preliminary results are that his urinary function is completely normal. The doc has to read the report, yet, but for now the answer is GOOD! Thank you and thank our Lord! . . . back to the children's hospital tomorrow, to meet with the pediatric plastic surgeon about the mole above his ear. |
| Outpatient surgery scheduled for May 5th to remove the mole under general anesthesia. Three surgeries before he's two years old. Tough little man. He's such a great little guy and we're so proud of him. |
| Church day! My husband had to work all day, so I readied all four children and loaded them up by myself. We got there early, because our church is always packed for the second service. I had about ten minutes to drop off the kids at their various Sunday Schools and nurseries. Caitlin's room is right by the door, so she went right to her class. Nate was next. One of the teenage girls who works in the two-year-old room just loves him and greeted him with a huge smile and an "I know who you are!" He grinned back and away he went. Ashley begged to be dropped off last and objected, for the umpteenth time, that she didn't want to go to Sunday School, she wanted to go to the "big room" with mom. We went to the walker nursery to drop off Jack. Poor Jack. We had to wait about five minutes in line. They're using a new system for drop-off and it's not going too smoothly, yet. When it was Jack's turn and our friend took him, he looked at me with an expression of surprise and fear and began to cry. Arms reaching out, imploring to me, as they carried him into the nursery. Not to be outdone, Ash refused to go into her room. "Look! Mrs. Cooper is teaching." Nothing. "Hailey's here." Not a budge. Time for tough love. "You are going." By the time I had taken two steps toward her, she had darted several feet down the hall, crying out, "No! I'm NOT going!" I picked her up and carried her into her room, stating, "Yes, you are." Setting her down, I gave her a kiss on her furrowed forehead and told her I would see her in a little bit. Whew! That only took fifteen minutes! I found myself a seat in the back and began singing with the music. I love our church's band. At the start of the second song, I realized someone was standing next to me. Our friend, holding Jack and his diaper bag. Jack, who is sniffling and sobbing and looking absolutely stricken. "I have to go in and do a skit," she said, "and Jack was still crying so hard. I knew you'd want him." She was right. I pull Jack into my embrace and rock back and forth with the music, singing softly in his ear. Within a few minutes, he's happily babbling and charming our seatmates. He actually makes it through three-quarters of the sermon before the trouble begins. He's bored with the ordinary objects I'm trying to distract him with. A pen. The bulletin. A bracelet. His bottle. His pacifier. His own feet. So, it starts. Wham! He throws his bottle down and it rolls to the aisle ahead of us. The lady in front of us graciously picks it up and hands it back with a smile. Whip! He takes his pacifier and chucks it across the aisle. A man sitting across from us picks it up, and hands it back to me, chuckling. Foom! The pen sails through the air and lands at the feet of another man. He manages to hold back his laugh as he hands it over. Zip! The bottle, now empty, again flies through the air and rolls along. A friend of ours in the vicinity picks it up and hands it to me, grinning. I grimace back and vow not to give Jack anything else for the rest of the sermon. About 45 seconds later, Jack tries for the pen, again, and when I refuse to relinquish it, he breaks into a howl. The couple behind me snicker. I give in and within a minute, the pen is airborne. Ducking my head, I pretend to be very interested in Jack's shoes. This is quite the humbling experience. For the last five minutes of church, I alternate between whispering Pat-A-Cake in Jack's ear and making his feet dance on my lap. On the way out, one of our friends laughs at me and shakes Jack's hand. "He's got quite an arm, doesn't he?" he says. Yeah, I noticed. I kiss his little blond head and shake my own. |
| Jackson's sick. Poor little man, he has a double ear infection and a sinus infection. He's having such a tough time breathing, because his sinuses are plugged and won't drain. He doesn't seem to realize that he can breathe easier through his mouth. His fever hovers around 103 degrees without motrin. Last night, he woke up around 3am, crying. I went to check on him and he was burning up. We had the humidifier going in his room, so it was damp, which made him feel cold. He was shivering and his lips were blue. We gave him more motrin and tried to compromise between letting the heat from the fever escape his body, but making him feel warm by wrapping him in his fleece blanket. His little hands and feet were cold, even with the high fever, which is a sign of dehydration. Fortunately, God was watching over him and he ended up drinking a bottle and a half of apple juice and water. There is nothing more wrenching than watching your baby or child in the middle of the night, wondering whether to call the doctor, go to the hospital, or wait it out. You just want to do whatever you can to make your little one well again. Logically, I knew that Jack was already on antibiotics, that the fever was giving him the chills, and that being thirsty was good. Emotionally, I wanted to scoop him up, bring him to some doctors, and say, "Make him better! Now!" I don't know if it's because he's our last or because he's had such struggles in his first year, but he seems so little, yet. (You'd laugh when you read that if you could see him. He's 15 months and 25 1/2 pounds!) I'm praying for my little boy to be well soon and to feel better. Poor little man. |
| Well, it took over four days for the antibiotics to kick in. Jack could barely breathe at night, so he didn't sleep well at night and was a cranky bear all day. The doc had prescribed a decongestant/suppressant/expectorant/antihistamine all-in-one deal, but it wired him up like crazy. Just what you want: a sick and in pain baby that is exhausted but can't sleep that is now wired to the hilt. Let's just say it wasn't pretty and we opted not to continue giving him that drug. Thanks for all your prayers for little man! He is now doing really well, finishing up his course of medicine, and tearing the house apart once again. We love this little guy! |
| Is there anything sweeter to the ears than a baby's first words? I love Jack's "ye-ah." Always in the two-syllable pronunciation. Still a little higher pitched and tentative, like he's not quite sure he can say it. Today, I was talking with a friend before lunch and he was fussing. I held him and bounced and continued talking. He kept fussing. Finally, I said, "Are you hungry, Jack?" He looked straight at me and said, "Ye-ah!" |
| I was browsing through some blogs tonight, trying to ignore all those annoying pop-ups and ads, when I stumbled across a blog written by a mom that has spina bifida. Skimming through her entries, I found her thoughtful, courageous, and proud. Then, I happened to glance at the top of the site. There, in a small, rectangular box, black letters on a yellow background, sat the words: Your Baby's Spina Bifida Could Have Been Prevented With Folic Acid. Pain, quick and sharp, went right through me. "Could Have Been Prevented." How many times have I wondered what I could have done differently? How many times will I still wonder that? Every time a medical worker asked me, "Were you taking vitamins?" I would feel this wave of nausea and grief roll over me. Fortunately, I could answer yes, because Nate had still been nursing. But what if he hadn't been? What if I hadn't been taking vitamins and it would have been solely my fault? If I had answered, no, and they had nodded their heads like, well, that explains it, then. Of course, he has spina bifida. You didn't take your vitamins. As it was, just seeing the words hurt me. I drew in a breath and sat there. I felt the tears begin rolling down my face, but I didn't really notice them. The tightness of my chest was too great. Do people even think before they make blanket statements like that? Do they realize the wounding of the soul and the heart, when they say things like that? Tears still falling, I fired off an email to one of the lawyers that placed the ad. I told him that he pissed me off. That he hurt me. |
| My four year old prayed for Jack tonight. His ear infection didn't clear up completely and so is back and painful. Ashley is very succinct in her prayers, usually. "God, thank you for this beautiful day. Amen." Or she'll bargain with me that if I say her prayers for her tonight, she'll say them the next night. Usually, however, as I say Nate's prayers with him, she'll interupt to add various thank-you's and God-bless's. Funny girl. Tonight, she speed-prayed her gratefulness for the beautiful day and listened quietly to Nate's prayers. Then, she popped her head up and said, "I need to add something to my prayers, Mom." "And, God, please help Jack to feel all better and not to hurt anymore, because he's very sweet and such a cute baby. Amen." This little girl has loved Jack forever. When he was in the NICU for those ten days after he was born, she would cry at night and ask us to "bring her Jack home." When he goes to bed at night, she makes sure she gets to give him a hug and kiss first. When he cries, she comes running. She rubs his head and saves him a seat on my lap. When she's loving him and he gets a little too smothered and cries, she sucks her thumb and stares forlornly at him. We call her Jack's "little" mother. And he couldn't ask for a better one. |
| Within the past week, I have had to tell two different people that Jack has spina bifida. One, a friend that I met after Jack was about six months old, never knew. I mentioned that I had declined to be in our church's MOPS group for the past two years because of Jack's surgeries. She looked at me, startled, and asked what he had had surgery for. The answer rolled right off my tongue. "He has spina bifida." "Really?" she asked, puzzled. "I never would have known from looking at him. He must have a really mild case." I said that he did. I explained his various operations and how great he is doing. "Wow," she said. I added that we had known since halfway through the pregnancy, but they had thought it was a tumor then. After explaining, again, about Jack's experiences, I just felt so blessed and grateful. He is so blessed and cared for by God. What a fortunate little boy he is. Really, things could have been so different. I thank God every day for our Jack and how our prayers have been answered. |
| "Jackson, my little Ja-a-ck-son, Jackson, my little Ja-a-ck-son . . ." I bought a Little Einstein CD to listen to in the van. Hoping to take the place of some Jump5 and Lizzie McGuire. I figured a little classical music might be a little more beneficial for the kids than "We are Family" and "Supermodel." Not really having listened to classical music a lot, I didn't know that it permeates your life just like "Itsy Bitsy Spider" and "You Are My Sunshine." Any parent knows that moment when you're going about your day, humming a little tune, then you start singing the words, and realize that, hey, that's "The Wheels on the Bus Go Round and Round." And I'm not within 5 miles of any of my children. That's not good. I did not realize that classical music - same thing. "Bum, ba-bum, ba-bum-ba-bum-ba-bum!" "Da, da, da-da-da-da-da-da, da, da, da-da-da-da-da-da." I interject my kids names. . . "Cait-i-lin, Cait-i, Cait-i- lin!" I sing our directions as we're driving. . . "Here we go, we're going by the cows! Here we go, we're going by the cows!" Listening to classical music is supposed to stimulate your child's brain and help make connections. Yeah . . . I don't think I'm sounding that smart. |
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