If you haven't read the first post, maybe do that now. It was just long so I broke it into pieces. I still will post them at the same time, because waiting is one of life's cruelest tricks.
Casey and I decided we would go ahead and do blood work to check for infection. We would hold off on an amniocentesis because we didn't feel like right now it provided any long term benefit for Myers for us to know sooner then birth the cause of his ventriculomegaly. We would decide on the MRI at our next appointment.
I went and got my blood drawn on the following Monday. The results would take 2-3 days but I would get them at our next appointment. That Friday, I called the dr's office and asked for the results. The counselor called me back just before 4 pm. The blood work tested for some kind of flu/virus that had a 3 letter name, toxioplasmosis (?) and one other thing. All of the blood work came back normal. I was so grateful because the infection cause seemed to have a lot of the less desired side effects. It helped us get through the weekend knowing.
I felt a little bit meh for the two weeks. It's hard to know what to wish for and pray for. I wished for a positive outcome. I researched. A part of me felt really selfish wishing that my child would be okay when so many other people continue to deal with this diagnosis each day.
I tried to be fair with myself with every article I read. I stayed away from baby chat rooms and looked for educational studies. Everything I could find had really good outcomes for kids with a number less than 12. I couldn't find a study with a child that matched Myers. It was frustrating. I needed to know what I was looking at, but I didn't find it. I looked at neurosurgeons, trying to decide from a picture and a brief history of education which one I wished would do the surgery. Which one would be best? I can tell you every provider our insurance covers for miles. Finally, I watched a shunt surgery. I don't know if I would recommend most parents watch it, but for me it was really helpful. I needed to see exactly what the surgery entailed. I didn't watch a home movie. I think I watched something from Harvard or somewhere equally noteworthy. It seemed to be prepared for medical students and the surgeon did a really good job explaining as he went through each step. Old Kalli could have watched it without flinching and would know it was a good thing. Mom Kalli got queasy twice. But, it was helpful. I am glad I was able to see it. It made me feel better about the whole thing.
I hurt for Myers. I hurt when I read side effects like feeling dizzy or headaches. I felt real pain when thinking that I couldn't make any of the symptoms go away. I felt sad not knowing what the right decision was with each test/ cause/ outcome. There were some decisions I was scared that I might have to make that I wasn't ready to make.
Case and I told our families and a couple of close friends. It's kind of hard to tell people when I don't exactly know what I'm trying to tell them. This could be really scary, but we don't really know yet. We may learn a little more, but not everything. I'm continually learning patience in this earthly life. I wish I would have read that manual in Heaven before making my way here.
Some days, I am completely okay. We've got this. No fear. And, other days, I'm mostly okay. But there will be a time during that day when I have to take a minute and completely lose it. I'm nervous. I don't like the unknown. I can't prepare for unknown. I guess in ways that's what all parenting is, Unknown. But, I'm better with knowing. I have rational thoughts and thoughts that are completely normal. One minute, I'm planning and deciding which next big purchase to make. The next, I'm thinking it would be best to pack up all his big clothes until he needs to wear them. And, 5 minutes later, I'm buying him a stuffed lion. He needs a lion. Every brave little boy only needs a lion and everything will be fine.
Case is a rock. And, he read that book on patience. There wasn't anything else we could do but be patient, but I just can't be putting up with that.
My sleep got worse as the appointment got closer. I thought I actually was handling things better than I was, but I completely stopped sleeping through most of the night. I would just lay in various rooms in the house and try to go to sleep. It got worse the closer we got to our next appointment.
Our families have been really awesome. My mom calls me no less than 3 times a day. She went grocery shopping for us. She stops at our house, makes a dinner and all I have to do is put it in the oven. She comes over every night that Casey has class to "decorate". She's not decorating. She's cleaning, and sitting at my kitchen table for hours so that I'm not alone. And, she'll talk. She'll talk when I'm scared. She'll talk when I'm fine. She always is, but really, she has been such a blessing. Casey's mom has brought us a cute treat once each week. We had a pizza in our fridge one weekend so we didn't drive out for Sunday dinner. We could stay home and sleep. (and we did) Countless numbers of people have told us that we are in their prayers and we have felt it. And, what we really needed we got. Two weeks went by really quickly. And, that was the biggest blessing. We were busy. We had tasks. We didn't have time to slow down and dwell. And, I'm so grateful for that.
We've appreciated other people's patience. Even if they didn't know why. We've been scattered. We've dropped the ball on commitments. We are only half focused in conversation or text. We'll be back to the real world now, and we're sorry we left you for a minute.
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