I have discovered that nesting is not just for soon-to-be mommies. It is also for those of us seasoned mommies who know that our kiddo is about to go through a long, traumatic ordeal. Knowing that the summer is going to kick off with at least a week in the hospital followed by 6 weeks of recovery time, I feel an insane urge to get it all done. Just like with nesting, I feel like a deadline looms and that everything will fall apart if I do not finish. Just like with nesting, my self-imposed tasks do not all make sense, either.
When I was 9 months pregnant, I felt a need to start tearing apart the garage and mopping it. In my mind, I knew it was insane. What the heck does the garage have to do with the baby? It was not like he was going to be sleeping or playing in there! Still, I was up late, exhausting myself with moving things around and mopping. I didn't finish before the baby was born, and it took about 4 months after for me to find the time and strength to at least move things to the side.
Now, my task has to do with the yard. I feel this need to get it totally cleaned up and beautified. I have moved the bird bath and planted flowers, and I have plans for more flowers and rocks. I tried to mow yesterday, but the machine conked out again and is beyond my limited ability to fix. I have this insane urge to go get a professional yard monster, but I will definitely refrain from that one. Still, I am drooling over the features, and I feel extremely irritated at the partially shorn front lawn. I hate leaving tasks undone anyhow, but this is really bothering me. It's too bad that I can't do more today. My night class looms, and then that will leave me useless for most of the day tomorrow from exhaustion. What was I thinking in signing up to work the summer term? Oh, yeah, we need to pay bills. Darn it! It's standing in the way of my nesting...err, therapy?
Tuesday, June 5, 2012
Monday, June 4, 2012
Personal Answers?
It is probably too much to hope for this, but I am thinking that I might be able to get some more pieces to the puzzle that is my head history. Our new neurosurgeon, Dr. Tuite, is at the hospital where I had my cranio surgery in 1977. I asked him if he knew Dr. Thompson, and it turns out that Dr. Thompson was his mentor! Dr. Thompson has since passed away, but maybe Dr. Tuite can enlighten me on the procedure done to my head. I crave more information to understand myself a little better and to compare with my son's experience. I won't get my hopes too high, but it is still something I am looking forward to on June 25.
Feelin' Groovy
Today, I am feeling optimistic, hopeful, and eager. Maybe this has to do with having a good weekend with my boys? I caught up on missed sleep Friday and Saturday. Then, we went out most of the day yesterday and had fun together. We went to a place where we could ride go-carts, feed alligators, and play arcade games at a huge markdown thanks to a Google offer. Then, I had a coupon for Logan's Roadhouse so that I could finally have the steak dinner I had been hoping for since Mother's Day and then my birthday. We hit Barnes and Noble Books so that I could spend some gift cards, and we checked Target for a bicycle that I have saved for. The bike was not in stock, but I should be able to get it soon. We were able to go out for a while and just forget about things, and I finally had a day where I did not keep reminding myself to treasure it because of the "what if's" that loom with surgery.
So, today, I am rested and ready to tackle the various household things that are staring me in the face. I keep thinking about how this is the last week of school for my boys, and then I think about how I just have 2 more weeks of the summer term after this week. Then, I think about the surgery the week after that, and I am seeing it as something to look forward to getting over with. Maybe, after this round, we will be done with the surgeries. We will get through this and be able to move on with things, achieving a sense of normalcy. I really have that hope this time around.
So, today, I am rested and ready to tackle the various household things that are staring me in the face. I keep thinking about how this is the last week of school for my boys, and then I think about how I just have 2 more weeks of the summer term after this week. Then, I think about the surgery the week after that, and I am seeing it as something to look forward to getting over with. Maybe, after this round, we will be done with the surgeries. We will get through this and be able to move on with things, achieving a sense of normalcy. I really have that hope this time around.
Wednesday, May 30, 2012
Dates
Yesterday, I realized that I had not updated the blog with our schedule.
Monday, June 25:
Drive over to St. Petersburg for a 10:00 a.m. MRI followed by a 1:30 p.m. visit with Dr. Tuite
Tuesday, June 26:
Placement of a Camino Intracranial Pressure Monitor
Wednesday, June 27:
Surgery
Monday, June 25:
Drive over to St. Petersburg for a 10:00 a.m. MRI followed by a 1:30 p.m. visit with Dr. Tuite
Tuesday, June 26:
Placement of a Camino Intracranial Pressure Monitor
Wednesday, June 27:
Surgery
Tuesday, May 29, 2012
Paperwork and Feelings
I can't believe that surgery is less than a month away! I vacillate between calm and worry from day to day, and my best coping mechanism is to put my full focus on what needs to be done each day as a wife, mom, and teacher.
For the surgery preparations, I called the Ronald McDonald House today and got us on the waiting list to check in on June 25. I just have to call again that day to see where we are supposed to go. I guess that they have multiple houses by All Children's? I do hope that we are somewhere within walking distance like we were with Arnold Palmer. I also sent the directed blood donation paperwork to Dr. Ricalde today. My blanks are filled out, complete with the names of 3 donors. (Thank you, Michele, Amanda, and Valerie!) Now, the surgeon has to fill in details and fax it to the appropriate office.
With each little step, I feel both relief and dread. We are that much closer to getting it over with, but we are also that much closer to being there. This time around, I don't feel like our lives are going to drastically change for the better when the surgery is done. For the last surgeries, I knew that Simon needed relief from the pressure on his brain; and I looked forward to seeing my son recuperate and move forward. I can't describe how it feels to see your little baby withering away and going backwards in development or to deal with your pre-schooler not communicating well and not sleeping well. I knew that he needed the procedures done to make those bad things stop happening, even somewhat if not fully.
Once the surgeries were over and he had time to heal, Simon bounced back and caught up at lightning speed, bringing us much happiness and hope. He had nearly full recoveries. This time, the biggest change will be that I will not see that pulsing on his forehead and worry that he is going to get hit in the head somewhere. I also will not have to wonder what is going on in his skull, as the MRI and ICP monitor should give us some clear answers. So, good changes will happen, but my mind keeps questioning whether we absolutely have to do this or not. My mind has actually questioned every time, even though it was illogical. Maybe that is part of my defense system as a protective mommy?
I worry that he will somehow end up backwards, after making so many gains with his speech and academics. I worry that he will come out with a different personality and not the happy, sweet kid who is absolutely my world. He will always be my world, no matter what. Still, I can hope that he is my same son. Again, these are "normal" worries with this sort of surgery, but the knowledge that they are normal does not stop me from having them. I just have to remind myself that, no matter what happens, we are doing the best that we can with this situation. I have to pray that God will guide the surgeon hands and hold our hands. I have to pray that Simon will come roaring back like the champ that he is.
For the surgery preparations, I called the Ronald McDonald House today and got us on the waiting list to check in on June 25. I just have to call again that day to see where we are supposed to go. I guess that they have multiple houses by All Children's? I do hope that we are somewhere within walking distance like we were with Arnold Palmer. I also sent the directed blood donation paperwork to Dr. Ricalde today. My blanks are filled out, complete with the names of 3 donors. (Thank you, Michele, Amanda, and Valerie!) Now, the surgeon has to fill in details and fax it to the appropriate office.
With each little step, I feel both relief and dread. We are that much closer to getting it over with, but we are also that much closer to being there. This time around, I don't feel like our lives are going to drastically change for the better when the surgery is done. For the last surgeries, I knew that Simon needed relief from the pressure on his brain; and I looked forward to seeing my son recuperate and move forward. I can't describe how it feels to see your little baby withering away and going backwards in development or to deal with your pre-schooler not communicating well and not sleeping well. I knew that he needed the procedures done to make those bad things stop happening, even somewhat if not fully.
Once the surgeries were over and he had time to heal, Simon bounced back and caught up at lightning speed, bringing us much happiness and hope. He had nearly full recoveries. This time, the biggest change will be that I will not see that pulsing on his forehead and worry that he is going to get hit in the head somewhere. I also will not have to wonder what is going on in his skull, as the MRI and ICP monitor should give us some clear answers. So, good changes will happen, but my mind keeps questioning whether we absolutely have to do this or not. My mind has actually questioned every time, even though it was illogical. Maybe that is part of my defense system as a protective mommy?
I worry that he will somehow end up backwards, after making so many gains with his speech and academics. I worry that he will come out with a different personality and not the happy, sweet kid who is absolutely my world. He will always be my world, no matter what. Still, I can hope that he is my same son. Again, these are "normal" worries with this sort of surgery, but the knowledge that they are normal does not stop me from having them. I just have to remind myself that, no matter what happens, we are doing the best that we can with this situation. I have to pray that God will guide the surgeon hands and hold our hands. I have to pray that Simon will come roaring back like the champ that he is.
Friday, May 11, 2012
Slight change in surgery date?
The surgery date might change to June 27. They are thinking about doing some monitoring for intracranial pressure and may need the extra day in between the MRI and surgery to do so. I will keep everyone posted. It does not affect us, the patient and parents, but I know that some people are trying to arrange work schedules around it.
Tuesday, May 1, 2012
Blood Donation Time = More Worries
The craniofacial surgeon sent the paperwork for the blood donations today. I may have a Master's degree, but this stuff is confusing me. Can I chalk it up to being tired right now? One thing that leapt out at me, though, is that they do not advise using the same donor twice. What do we do, then? We have had 3 people do directed donations for both surgeries. On the second surgery, two of them donated, and both units got used. On the first surgery, three of them donated, and two units got used. We know whose one of them was, and we are not sure about the other. Who do we call? What exactly is the risk of using, possibly, the same donor three times? How am I supposed to sleep at night with these sorts of questions bouncing around in my head!?
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