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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. |
| First day of spring break! And, yes, it is raining and only in the low 40's and they're predicting snow for tonight. That being said, it was such a nice day. . . Everyone woke up on their own. No trying to pry a little body out of a warm bed as they groan at me. No fits about me having picked out the "wrong" clothes for them. No "hurry, we're going to be late"'s. No buckling three car seats (and one who buckles her own). Ahhhhhh. Just a lazy breakfast and then some cartoons. Ashley had a friend over and all five of the kids played downstairs all day. We made our own clay, cut shapes out of it, baked them, and then painted them and coated them with a healthy helping of glitter. Also, the floor, but that's easily vaccumed up. The girls and Nate played "tickets", which apparently means you have to buy tickets for almost any thing you may want to do. Jack wandered all around, took a few tickets, played with trucks, checked out the toy shelves. I smiled at him and asked him, "Are you playing with the big kids? Are you a big boy?" To which, he looked at me with a delighted grin and said, "Yeah!" and then moseyed off to check out something else. Pure, uninterupted child's play. . . so sweet . . . |
| Jack goes in for his third surgery next Friday. They are removing the birthmark above his right ear. It has gotten darker and two small dark spots have appeared in it. He had his pre-op visit this morning. The nurse said the surgery will be outpatient and should take less than an hour. We had to visit the OR nurses and found out that we won't know the specific time of the surgery until the day before. The pathology report will be back two weeks after the surgery. The nurse assured us that it will be benign. Can she do that? All health professionals are usually so careful to say that "most" are benign or "the majority" are not malignant. (I hate even thinking that word.) I'm starting to get those little panic attacks again. Where I start thinking of all the things that can go wrong and every horror story I've ever read about hospital mistakes. . . My Jack. He'll be okay. God has great plans for him, remember? Good, now remind me! His latest toddlerism is to yell, "Mommy! Mo - mmy!" for no particular reason. I'll say, "Yes, Jack?" and he'll grin at me. I love it. |
| Jack came through surgery wonderfully! The birthmark is gone and has been replaced with an inch or so long incision with stitches and steri-strip bandages. There's dried blood crusted underneath the bandages. I said he doesn't look any different right now, because he still has something right there! Poor little guy had a rough time coming out of the anesthesia. The nurses had told us that some kids come out of it with something called terrors. They scream and cry and don't really know what's going on. Sure enough, that's what happened with Jackson. The nurses actually came to get us and brought us to phase I recovery because he was crying so hard. When I held him and he snuggled up against me and calmed down to gulping sobs, I would have given anything to just walk out of there with him right then. Within a few minutes, they sent us over to phase II recovery and Jackson slept on either Dad or I for almost an hour. When he woke up after that, he was ready for business. He started drinking and talking and smiling. Sweet, sweet Jack. We got him dressed and took him down to the cafeteria for lunch. On the hour and a quarter drive home, he slept. At home, his brother and sisters were playing outside and so happy to see us. His dad took him inside the house while I started talking to the kids. When I came in, my husband asked me to feel Jack's head. He had a fever of 102.5 degrees. I tensed right up and got out the surgeon's call number. Jack, glassy-eyed and limp, lay on his dad's chest. The nurse I talked with said she didn't think it could be from the surgery that quickly, but she was going to confer with anesthesia and the surgeon and call me back. I love Mott's Children's Hospital. Within ten minutes she had called back after talking to the surgeon, who had consulted with anesthesia. They all agreed it was too soon for an infection from the surgery. The nurse told me to give Jack some more tylenol and try to get him through the night, comfortably, and bring him to his pediatrician in the morning. She said it was probably some infection that had been brewing before surgery. While talking with her the second time, Jack's temperature was up to 103.5 degrees and he threw up. I panicked while on the phone with her, but thankfully she calmed me down. She said it was common after surgery (and he had eaten a lot for lunch) and to wait to see if the tylenol took his temperature down. If it did, he could wait until morning. If not, he would have to be seen tonight. God graced us with a lower temperature of 102.7 and he began walking around the house and eating Grandpa's ice cream. Thank you, our Lord! We brought him to his pediatrician in the morning and, sure enough, he had an ear infection. From fear the night before, God let me know that He's in charge and even if something seems to be going so wrong, God is always in control and with Jack. He has proven this to us so many times that it seems so unloving of me that I still sometimes doubt Him. God, forgive me. You have been so faithful and so mighty. You have proven Your love and Your care over and over, especially with all that Jackson has been through. Forgive my worry and my fear. Forgive my doubting and my weakness. You are always with us. Always. Keep my faith and my trust strong and true. I love you, Lord. You are truly amazing! Amen. |
| Pathology report is back and the birthmark was benign. Our Lord's arms are firmly and lovingly around Jackson and keeping Jack safe . . . for Him and for us. How blessed we are that we know our Lord and that He is with us. I just talked with our oldest daughter about baptism and what it means. I explained, simply, that we are publicly delcaring our love for God and asking Him to make our life new in Him. We talked about how the only thing God asks of us is that we love Him and ask Him into our lives. What an amazing thing to be able to explain to her, again, that God doesn't judge us on our good deeds, or bad. That there is nothing that we have done or could do that would stop us from entering Heaven. Anything and everything is forgiven the moment we ask Him for forgiveness and His love. Think about it for a minute. . . this is especially poignant if you have children. Is there anything they could do that you wouldn't forgive them or that would make you stop loving them? My children disobey me, disrespect me, and try my patience every day, as all children do, and there is never a minute where I don't love them or wouldn't do anything for them. And that's just how God is with us. There is never anything we could do that He isn't just waiting for us to come to Him with a humble and loving heart. And He doesn't frown at us when we come or hold a grudge against us. He's actually smiling and motioning us forward with open arms! And there's no "list of requirements" that we need to check off before He'll let us in. There's no age limit or time where we've waited too long. There's never a time where He sighs and just writes us off. There's no checklist for Heaven. Just to love Him. Incredible! Take a moment and talk to God, our Father. He loves to hear our voices. God bless! |
| Our Jack is doing great! His scar from his birthmark is healing well. The doctor said we have to protect it from the sun for a year or it will discolor and stay that way. A whole year! Well, we'll definitely do our best. He is running and climbing and being a mischevious little toddler with the best of them. (I was going to add a picture, but couldn't figure out how to do it.) His physical therapist can't get over him. She still can't seem to believe he has spina bifida. I love that! "I want that! I want drink! Come!" He is talking up a storm - sentences at 18 months! He has a large vocabulary and it grows daily. For awhile, everything was "Ohhhhh, man." Thanks for checking up on our little guy and God bless. |
| Action Jackson is one of Jack's nicknames. Just some silly little thing we came up with. But that old adage, "What you say about your children will come true," is profound. Jack loves to be on the go. It's so fun to watch him that I sometimes forget to chastise him for things like climbing on and standing in the middle of the kitchen table. He used to sit so contentedly in the stroller and watch our oldest daughter's soccer matches, now he yells, "I want get OUT!" at her softball games. At church, he is terrified of staying in the nursery, but won't sit still on our laps during the sermon. He loves the water and, at a zero depth entry pool, walked right in until the water started going over his mouth and nose. I pulled him back and put him down where it was knee-deep and he repeatedly went back to deep water. Ahhhh, life isn't going to be dull with this one around! People continuously ask me how old he is after hearing us talking. Jackson and I, I mean. Just last week, while camping, we were waiting his turn for a pony ride and he kept demanding, "I want to ride horse!" and I would remind him he would have to wait his turn, whereupon he would cry out, "No!" Then, to distract him, I would ask him questions about birdies, Grandma, and swimming. The lady in front of us turned around and asked me how old he was. "Two?" she questioned. "No," I smiled at her, "He's only one." Her eyes widened and she looked at Jack again. "He's really talking well!" she exclaimed. I nodded and said, "Yes, it's actually a little sad. He's our last baby and it doesn't seem like he was a baby for long." He's really growing up. (Right now, he's pulling on the door to his bedroom and yelling, "I don't want lock the door!" and "I want Mommy!" at 11:15pm. We've already held him and rocked him twice, so we're trying to wait it out.) God bless you and your families! |
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