Saturday, June 23, 2012

How We Really Feel

People comment on how relaxed and laid back that Chris and I are when discussing Simon's surgery. For those who fully get the reality of what our baby has to endure again this week, they shake their heads in amazement when we mention that this surgery will be "minor" compared to the previous two. Well, if the tests show no pressure and the surgery ends up being a cover-up procedure, then, yes, this one is minor in comparison. It's all relative, though. This surgery is nowhere being as minor as, let's say, ear tube placement. (Oh, don't get me started about the moms who spend days freaking out about ear tube surgery. They really need to find a hobby.) The reality, no matter what they do, is that my baby will once again get slit from ear to ear, have his scalp peeled back, and have a bunch of strangers poking around his skull. We will sign paperwork that acknowledges that we are aware of death as being a possible complication. Blood will be waiting in case a transfusion is needed, and insurance codes have been pre-approved just in case they have to go further and take his skull apart again. Taking the skull out means that the only thing separating Simon's brain from open air will be the dura, the brain's covering.
Yes, we've been through this before, but that does not make it any less scary. We just now have advanced knowledge of what to expect during recovery. Add to the equation Simon's age, and this whole thing just got downright terrifying. How are we going to cope with a very aware 7-1/2-year-old through this? We will find out this week. So, when we talk about the surgery and seem to shrug it off, know that you are not seeing how we really feel. Me? I am fucking terrified. We just do not see a point to having everyone around us, including Simon, get too worked up. Simon needs for us to be calm and steadfast, his rocks in this storm. He has to trust that we are there and that everything will be okay. Inside, though, is a different story.

Thursday, June 21, 2012

Surgery Week Details

Monday, June 25:
MRI at 10:00 a.m.; Dr. Tuite visit at 1:00 p.m.
Tuesday, June 26:
ICP monitor at 7:30 or 8:30 a.m.
(This will be done by Dr. Tuite in the OR under sedation and will be left in for 24 hours.)
Wednesday, June 27:
Surgery at 9:00 a.m.
We will have a meeting with the surgeons that morning before the surgery to discuss what needs to be done based on all the tests plus the CT images.

Wednesday, June 20, 2012

Our Needs

I have received a couple of messages these past weeks of friends and family saying that they are there for us, whatever the need. Considering where we live and the time of year, I am doubtful of the honesty of those messages, but then I realize that I need to make the needs known before anyone can have the opportunity to help fill them. The needs I am about to list are actually a mix of needs we have due to my mom's death and due to Simon's surgery. This blog is supposed to be about the surgery, but the timing of my mother's death makes the events intertwined. So, what do we need?

1. We need a housesitter next week. Our neighbor has agreed to collect the mail and papers, but it would be a huge relief to have someone here to watch and maintain things. An added bonus would be to come home to a freshly mowed lawn.

2. My dad needs visitors. After my brothers and sister-in-law leave soon, he is going to be all alone in the house. Phone calls and physical visitors will go a long ways to helping him.

3. My dad needs ideas on how to do everything for 1, especially cooking.

4. We need meals. The weeks after Simon's surgery will be difficult as we will be exhausted and occupied with caring for Simon and driving to post-op visits.

5. We need (healthy) visitors. We will be going stir-crazy in the post-op weeks.

6. We need prayers. First, pray that Simon is quickly over the cold he has right now. Then, pray that the surgery and recovery go well. Also, pray that we find energy and strength, as the reserves are low.

7. We need gas cards. I have done a ton of driving between home, Brandon, Tampa, St. Petersburg, Winter Haven, and everything en route over the last few weeks. We have a ton of driving to look forward to in the upcoming weeks.

8. In a few weeks, we need a date night. Chris and I go out together maybe twice a year. We are long overdue and will need some time together once Simon is on the mend.

9. Chris needs some job leads.

10. We need encouragement.

Friday, June 15, 2012

Full Circle

My mother passed away on Sunday after a long battle with multiple illnesses, both physical and mental. I am assured that she is at peace and can watch over us with a clarity of mind and emotion that she has not experienced in a very long time, if ever. This week has been a time of intense reflection and remembrance both within myself and with family. Memories of times and conversations keep flashing about, much like an old film strip that has been cut into millions of pieces and then spliced in no particular order. So much of those pieces of film center around her love for us, her family.
During the last years of my mother's life, I found it necessary for both me and my child to remain separate from my mother. Due to the nature of her mental illness, I felt that it was my responsibility as a parent to protect my son and to protect myself. I do not regret having done so. I spent many years grieving the loss of the wonderful mother that I knew as a child, and I spent some time this week again grieving that loss. As I grieve, I do not feel guilt or regret. I do feel sadness and disappointment and longing. I so long to still have the mother that I once knew, the one who stayed so devoted to my bedside during my worst times. At the same time, I am incredibly thankful that the events of my growing up did lead me to get to know my father better. I am still finding out so much about his love for me as well. He no longer has the exuberance of my mother to hide behind and now shines forth brightly. I see him, and I see him in me.
This week, as we recalled memories, I was sharing more details of Simon's upcoming surgery with my father. Naturally, the conversation also brought in their experience with me when I had surgery for craniosynostosis at 2 months of age. I long to know more, and my dad wants to share. I shared that Simon's new neurosurgeon, Dr. Tuite, was actually mentored by my old neurosurgeon, Dr. Thompson. Dad shared how my mother kept in touch with Dr. Thompson over the years and how it was Dr. Thompson who literally saved my life. In 1977, doctors had the understanding that the pressure on my brain was going to kill me if left any longer. My father looks at the surgeon and the procedure as lifesavers for his firstborn. I shared the schedule at the hospital for the week, and my dad shared how he changed his schedule to be at the hospital that month. My mother was the one at my side with no real breaks, but my father was there too.
I knew that he worked in the building next door, but I had no idea that he made sure that the job lasted longer than it had to. My father was an elevator and escalator mechanic, and he had a job at Bayfront Medical Center during that time. So that he could stay in the area, he made sure that the equipment kept "breaking" and needing work. He alerted the building managers of what was happening so that they would not keep calling, and he was able to stay right there, literally on the roof over our heads. When his shift ended, he would join my mother by my side. Together, my parents held my hands and each other's hands.
Today, my father no longer has her hand to hold, and neither do I. As I go into my son's third surgery, I so wish that I had my mother for support. I am incredibly grateful for my father and what he can share, but I wish that I could have my mother to be with me, a mother. Since she cannot be here in person, I have to take comfort in my belief that she will be in that hospital that week anyhow. We will be at the same hospital 35 years later. She will be with us as we wait, and she will be with Simon as well. She did not know Simon while here on earth, but I know that she loved him. I also know that she loved me, and she will never be far away.

Thursday, June 7, 2012

Thinly Veiled

Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are. ~Arthur Golden, Memoirs of a Geisha

This journey with my son has been my adversity, uncovering the very depths of who I am. In my past, I prided myself on being a good person and following the rules and doing my best. When the preacher would talk about sins and forgiveness, I had an inflated ego, for I did none of those things needing forgiveness. My prayers were that I would have the strength to survive the difficult circumstances I faced at that time and that I would always commit myself to His will. Never were my prayers about forgiveness. After all, what had I done lately that needed forgiving?
I faced adversity, some of which those around me never knew and likely never will know. Close family and friends know, though. I did not realize at the time that I was committing one sort of sin: pridefulness. I carried pride because I was able to successfully accomplish so much with so little sleep and with much emotional pain. The pride stayed buried, so much that I did not even recognize it as being there.
Today, I know the ugly truth: it has been there all along. Pride has been there; and apparently so have greed, jealousy, and scorn. They have been so buried that I did not even know I was capable of them until I started on this journey. I make an effort to keep them hidden from view, as I am ashamed that they even exist.
How do I see these sins? I continue to have pride, but now it translates into a pride about how good I am at managing things. This pride is not the good sort that you feel when you have a successful child. No, this is the ugly one that causes me to look with scorn at someone who is not managing so well.
The greed and jealousy are twins. I see others who have it better. Better, to me, is in being able to have multiple, healthy children. Better, to me, is being able to afford to raise multiple, healthy children. Better, to me, is a household where the family gets home at a decent time every night and the parents are not sick with exhaustion. I see these people, and I feel jealous pangs of wanting what they have. I see these people, and I feel the greed of wanting more. Then, starts the guilt.
Immediately, I recognize that these feelings need to be kept under control. I feel guilty for having them in the first place, and then I have an internal war with myself about what it means to be human and have these emotions in the first place. Should I push them down? Is that unhealthy? Or am I sinning? Or is this natural and the sin comes if I do not act on them properly? It is horrible and leaves me feeling wrung out.
Then, finally, comes the scorn. I feel scorn and contempt towards God for us being in this situation in the first place. I mean, I am okay with having the burden to care for the child, but why can't God ensure that we can financially take care of it all? Why are we given something without the proper provisions? My God takes care of all my needs? That feels like bull honky. I guess, if you count credit cards with high limits as taking care of our needs, then we are covered.
I feel scorn and contempt towards certain people for not realizing how good they really have it. Their complaints are impossible to stomach, and I immediately do a mental retort of "Well, if you were in my shoes, you wouldn't be complaining about that."
Then, in swings the guilt again. I am not in their shoes, and they may very well have it way worse. We do not know everything going on with every person we encounter, and it is not right to issue judgment.
I know the truth about how I should be, and the guilt comes because the truth shouts in my brain after my knee-jerk emotions. It is a war that stems from my adversity. I am seeing myself as I really am.

Tuesday, June 5, 2012

Nesting Instinct

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?

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.