When we arrived things started of normal enough. They recorded her family history since they hadn't seen her before. I felt a little disoriented because the Sparkle was begging me for her iPod and Shine was too busy sticking her owl stickers to the toddler chair. Finally, what seemed like an eternity, the talking was over. Miss Stephanie, as she called herself, pulled out her stethoscope and moved in for the
They continued until they were quite sure they had a diagnosis and the next step I needed to take. First up, Lovely's was extremely constipated. She is already on a prescription laxative and has been since I introduced solids at ten months. She probably has fecal matter compacted all the way through her intestines. We had a abdominal x-ray done today to check that. She also had an enema and has to go through a "cleanse" tomorrow, which includes getting a laxative every two hours...all day.
She is also being tested for celiac disease. I took her completely off gluten at twelve months and she gained four pounds in two months. I know in my heart that she has a gluten issue. I also think she might have an issue with corn, dairy, oats and sugar. When I was nursing her I had INCREDIBLE body pain. It was so bad that I couldn't walk, carry things, open anything, use my hands or basically be any use to anyone around me. It was intense and constant. I was tested from a Naturopathic doctor and it was discovered that I had an issue with those same things. I've never had a problem with them in my life. Once I stopped breastfeeding, it went away completely. Lovely has joint problems as well. They click and are incredibly painful for her. She would cry hysterically when getting her diaper changed if I pulled on her feet to lift her up to scoot the diaper under her. Or when changing her clothes and if I caught her fingers, even minutely. Once I took the gluten out of her diet, within a month, those symptoms went away completely. I always know if she has gotten gluten in something because her joints will click again. It's very strange.
They also discovered that Lovely has a sacral dimple, which I knew she had but my pediatrician said that I didn't need to worry about it with her or Shine. Shine's was much more prominent that Lovely's. Combine the sacral dimple with not have good muscle tone in her legs, delayed motor skills and we have a recipe for disaster. The doctor is pretty confident that Lovely's spinal cord is fused to her sacrum, which it's not supposed to be. It's supposed to hang free at the base of your spine. They referred her to the Neurosurgeon. When talking about this with the doctor, I brought up Shine's dimple. She asked me a few questions, "Does she have pretty poor balance?" and "Does she complain about leg pain?" Both of these were very strong yeses. When I showed her Shine's dimple, I was told, "I need to get you over to the Neurosurgeon immediately." I've brought both of these issues up with our pediatrician before without ever realizing that they were connected. I was told not to worry about them. Both girls will have to undergo a spinal MRI done under anesthesia in the very near future to determine if and where the spinal cord is fused. They will both need to have spine surgery and have their spinal cord severed where it attaches to their sacrum. Hopefully this will correct the low muscle tone, leg pain and delayed motor skills.
The doctor was also very concerned with Shine's chromosome 22 defect. Just on the way down to Denver today I was talking on the phone with a dear friend who's son has an extremely rare disease and I told her that I wasn't sure that I wanted to find out if Shine had this defect or not. I feel that it will be a label on her and that she will be judged with a skewed lens. Either one of letting her get away with more than she should because, "she has a chromosome issue". Or two, folks will treat her differently because she has a defect. Nether of which I want. I want them to treat her like a normal kid. She's not normal in any sense of the word. She's a independent, strong, stubborn, and fierce little thing. If that makes her "not normal" than so be it. Labeling her with a "defect" just pisses me off. Yes, this defect causes behavioral and learning issues. And we have dealt with them all just fine without knowing she had it and we will continue to do so. Getting creative with her defiance and anger is a new trick we will have to learn since it is becoming much more noticeable as she gets older. I did end up having the blood work done for this because Lovely's doctor is concerned that she may have the same disorder. To cover all our bases, I chose to know. Had this not come up, I highly doubt I would have done the testing.
With all this that happened in the morning, while walking down to the cafeteria in the hospital, I watched parents gather children in wheelchairs, children with oxygen tanks and still others without any hair. As rotten as this day was, there were other little lovelies out there facing a much darker battle. Ones that they could possibly never recover from. Ones that will have their mothers and fathers burying them before their time. And I felt blessed. "At least it's not that." I kept saying to myself. At least it's something very minor when compared to a cancer diagnosis. How I have two children with very similar issues, I will never know. How I am blessed to have three beautiful daughters and a whole bunch of children in heaven, I will never know that either. Part of me felt like a victim. Here I was, alone, and dealing with a high strung preschooler who just wants to run and jump, a toddler who's exhausted and a 3rd grader who doesn't really know how to handle the grief she feels inside so she gets bossy, angry and controlling. I just had my second miscarriage THIS YEAR, two weeks ago, and now this. And part of me feels like a caged tiger. Just let me out and I will show you how to stay strong in the face of adversity. And still another part of me is saying, "How can i glorify God in this?" I'm torn and exhausted.
I am so grateful for all the text messages, phone calls, emails and Facebook messages. I am thankful for the prayers I know many of my friends and family prayed today. And then there is my husband. We thought this was going to be a pretty simple and quick visit today. When my husband was able to call me back this afternoon, I hit him with everything I was told. I can't imagine the helplessness he felt when I told him that I wish he could have called into work and just come down here. I needed my knight in shining armor. I needed him. Of course, it was completely unrealistic for him to come almost two hours away when we would be done soon. (Three hours later.... ugg) Much less, his desire to be there for me and for his girls, to grab up those girls in his arms and keep them safe. Dads are superhuman and that's the way it should be. And it's pretty amazing that he kept his game face on for me. I didn't hear one crack in his voice, one waiver in his strength. Just a steady, "We will work through this, honey." And that carried me though the day, Just knowing I could count on him to be the rock for our family while he solely relied on God. I didn't even realize how much I was relying on him until I got home. And then it all come crashing down. I melted into his arms and held still. I clung to every part of him. I focused on the parts of him that I didn't have today: his muscles under my arms that were flung around his neck, the way he smelled, the smoothness of his freshly shaven jawline pressed against my temple, and the unseen sense of safety. It's almost as if his soul whispers to mine, "I will keep you safe. I will protect this family with everything I am. I am yours." God gave him to me. The last time we went through this with Shine, we were in a very dark place in our marriage. It was torture. I didn't feel those things coming from him and it killed me. I felt alone even though he was in the same room with me. We were distant. Almost like roommates that slept in the same bed. It was ugly. But in comparing this time with then, I can see where we've grown in our relationship. Watching him become what he is today is impressive. And I have a lot of ground to cover in growing myself to be where he is. I only pray that I can be the support and strength that he needs when the time arises.