Nov 25, Peter Pan & Reflections/Thoughts

Lindsey had a melt down this evening, and earlier today Stacy had to give me a bit of a pep talk.  So if it seems like I am rambling or complaining, I am not, just getting it off my chest. More of the same ole' stuff on a different day. 

 Report on Lindsey. Same old walks, feeding tube, play room, games, take meds, but tonight it caught up with her. She was crying and wants to get out of here. She is tired of the monitors, Berlin pump, and pokes. What started it was Sierra and Megan went with Meghan Cleary from Berkley to a Peter Pan musical in San Jose. Meghan Cleary had a high school friend in the play and had a few tickets for Sierra and Megan.  The girls had a great time, but Lindsey wanted to go too. We tried to keep it from her, but she found out. She feels good enough to go, and just wants out of here.

So tonight Linds and I laid on her bed looking at the ceiling as if we were home laying on the trampoline looking at the milky way and big dipper. We talked about everything we could think of that bugged her and everything she misses. She still really wants to go home. 3 West is nice and the nurses are doing the best they can, but she wants out. She also understands the situation, and is glad to be as healthy as she is.

Stacy is still at the RMH with Gage.  She and Gage have not been over here since Friday night. We are just trying to keep as much distance between Gage and Lindsey as we can, just to be safe.  So I had the kids today at church and here at the hospital while Stacy and Gage were partying at the house.  We still watch Gage pretty close. He eats so little and looks pale most of the time. Sure hope the heart meds keep him out of acute heart failure. Time will tell.

Sierra continues to concern us.  She has been complaining of her tummy feeling and looking bloated. And she is right, it does look a bit more pudgy. When we were at her last checkup a few days ago we told them and they noticed her liver was a bit enlarged.  They didn't act overly concerned about it (around us), but it has been weighing on me.  For my own sanity, I need Bernstein or someone to explain what they think is going on.  In the past, these things have usually been med adjustments. I have also learned, if we tell them and they don't get too excited about it, then I'm not going to get excited about it.  It doesn't do me any good to get all worked up over something I cannot control.  Sometimes, when Stacy and I see things like this, I go into a bit of denial.  I don't want to talk about it, I just want it to go away.  I know that is wrong, but I do.  When we add this issue to Sierra's other challenges with school work, friends, and physical activity, she can occupy a good portion of my prayers.

Megan and Hunter are doing great. Megan and Sierra are turning into young ladies. I'm not sure I am prepared for that, but Stacy said I better get ready because it is happening. Just another way the RMH is pretty cozy.

Today in church, they talked about where we often put our focus in life; money, wealth, job, activities, sports, etc.  I cannot even comprehend a world where I would have the option, or luxury, of focusing on something other than my kids.  There is a faint memory of a day when we would get up, exercise, and go to work without worrying about any of the kids.  I know I am wrong, but I often get the feeling like this is never going to end.  I'll admit, sometimes it is hard to pray.  Feels like I am asking for the same old things. I still believe, and have a strong faith and hope, that God hears my sincere prayers. I also know patience is a virtue and that we are all getting stronger from this experience. Lindsey is tired of this, I am tired of this, but we also see a lot of other kids and families in the hospital we would NOT want to switch places with.  From that, we thank our Heavenly Father for the blessing and miracles already poured out for our family, and that is sincere.

This week I am going to start working out of an office here in Palo Alto. Despite my concerns above, our kids are now good enough where I can get out and work from a real live office. I know it will be good for my sanity. I have been able to work out of the RMH, but the cell phone and internet service is horrible. There is a guy in the church that is allowing me some temporary office space as needed. There are so may good people out there willing to help. Thank-you and good night.