Musing

I don't know why I am meloncoly tonight so I apoligize now. I was reflecting on what it is like to be a parent with a child with a brain tumor and this is my thoughts.

One day when the world is right and you feel secure someone tells you your child has a brain tumor. Except they don't say tumor, to make the blow easier they use the word "mass" thinking that makes it easier to hear. Then they try to tell you its not cancer (but in your heart you know it is) and they argue about when to take it out. You are screaming to get the evil thing out of your child but you are powerless and wait. Eventually they concede that it must be cancer and do the surgery. 6 to 8 hours later you are relieved that he is alive and can breath without a machine. You are grateful for the the tears and pain he is in because it is proof you have not lost him yet. When you finally relax and his pain seems to be easing a stranger comes in and starts using words you have never heard. They tell you its cancer and a type you have never heard of. Before this sinks in you are given a "schedule" for treatment. There are no options offered, no more words of comfort. You sign forms and pray it will work. Every day becomes a struggle to survive. You close your heart, praying you can keep everybody you love inside and not lose anyone. You let everything go and stop dreaming. You tell everyone you are fine but inside you are broken and it is not fixable. After many months of terrible terrible treatments during which you watch your child drift to the edge of life. You watch his spirit shrink and his will to fight barely hold on. You watch his dreams die and see him surpass you in maturity. (that sounds good but no child should grow up this way) Anyway, after what seems like forever you are done with the treatment. But what does that mean? Can he go back to "normal"? He thought he would if he did everthing you told him but it can't happen. He will never be who he was before and nothing you do can fix it for him. Sadly you know that he will deteriorate over the next 18 months or so and once again you are powerless to do anything but wait for the bottom. The terrible joke of it all is that in the backround is still that evil cancer and it can reappear (and usually does) at anytime. At the end of everyday you are sooo very grateful that you had another one with your family. Grateful for the support you have. But you are left in the end still holding on and life goes on but is never the same. How do you move forward when you are not even sure you want to. Moving forward means letting this unfold completely and you certainly don't want that. So many nights without sleep, so many days without genuine fun, no more dreams. The fight now becomes to make that my reality not his. Or the other children. To give them another day of just being kids is all I want now. To hear them squabble and laugh, no thought to tomorrow. If I could only keep the world out forever......

Is That a Dog or a Baby?

Ok, I spoil my dogs, I will admitt it. And I know that Lanae will read this and think it is further proof that dogs are bad, but that is just not true. When you see your child lite up and hug that puppy or dog, you know it is worth it (like everything else you do for them). Ok, with that out of the way.,,,, We have a new puppy. However, he is not really a puppy, he is 7 months old. However he spent the first seven months of his life on a farm. No human contact other than an elderly couple that fed him and did not play with him. No name, no training, not even a treat now and then. He is beautiful and sweet and very loving. He is also scared of everything. The last 2 nights I have been up half the night because something frightened him. First a cow (yes you read that right) was crying and he howled along with it. We think it was a mother who's calf was hit by a car. I was up till 2:30. If I crate him away from the girls he got more frightened. Last night I turned off the porch light and went to bed and he started barking again. At about 1am I figured it out. If I turned the light back on he settled down. I guess I have the first dog in history to be afraid of the dark. I am sure in a month or so he will be settled down and some training will help him feel safe but right now it is like having a baby. The children named him Malachi and I hope he is powerful like that prophet. We are also hoping he makes a good father, that is why we bought him. Meanwhile, I will try not to fall asleep during homeschool time and sleep when I can...........

Funraisers and Fitting In

Ok, in the last year we have been invited to alot of fundraisers for children with cancer and so forth. I have not been comfortable attending any of them. I know what I am about to say sounds weird but I really felt that attending would make us one of "those families". You know, you see them on the news, they look so sad and you feel so bad for them with a sick child. However, I could not miss this one. We were invited to attend a motorcycle ride for the Pediatric Brain Tumor Foundation. The kids got to do a ride on bikes and I knew they would love it. It was SUPER! The girls rode in side cars and Ted and Josh got to ride on the back of some really cool motorcycles. They went on an hour ride around Houston with 600 or so bikes. When they came back there was lunch and a program where Josh got to go up on stage with the other kids with cancer and they introduced him and later he got to draw a raffle ticket where someone won a new motorcycle. It was fun, I didn't mind going at all. Gordon and I laughed, we put them on bikes with total strangers and as they were driving away I said to Gordon, do you know where they are going? He laughed and said no. The people there were so nice we weren't worried at all. It is funny to put your 3 and 4 year old on a bike with a Hells Angel and wave goodbye. I guess it is all part of our new reality, normal but definitely different. After that we drove most of the way to Austin and picked up an new dog. He is really cute. However he is very lonely and crying in the back yard so I have to go help him fit in with the girls. It was a long day but lots of fun and the kids had a blast

A Great Vacation

I am not sure where to start. We went on vacation to Gordon's Uncle's Ranch (boy that is a mouthful) and I guess I could start this blog with "It was the best of times, it was the worst of times". It was a great trip and we really had a great time. However, it was a typical event for us and full of drama! First, I packed and got us out the door alone because Gordon was busy doing taxes. Then we traveled 2 hard days ride and arrived at the ranch late in the afternoon on the 2nd day. I had not slept in about 4 days and was exhausted. When I got there I made a triple batch of funeral potatoes. Then we ate and played cards till bed time. When I finally got to bed I had a panic attack. I have had a small one before but never this big. I was up all night and could not stop shaking. I kept thinking that I just wanted to go home. I think I was just so overwelmed by suddenly being out of our home and seeing people that are so important to us. They seemed so ordinary, there was hope and dreams and future plans for them. Everybody talked so casually about things. Our lives have not been like that for so long. We live every day waiting for the other shoe to drop. The only hope and dreams we have are just to get through the day. I guess when you are in the middle of it you don't realize how isolated you become and to suddenly be in the middle of "normal" is hard. Anyway, the reason I am sharing this is, in the morning when my wonderful sister-in-laws got up - instead of feeling bad they made me feel great. I didn't feel embarassed to tell them about it and after I did I felt a weight lifted off my shoulders. I don't miss Arizona but I sure miss them. I didn't feel different anymore I just felt peaceful. That afternoon I slept 5 hours and felt great when I got up. It was great to be with such special sisters and all the family. We had a great time and even the long drive home wasn't bad. (Ted threw up in the night in the hotel and the second day was rough, driving as fast a we could to get him home to rest.) Sometimes I am sad, I don't think there will ever be a normal for us but I just have to remember that I have been blessed with special sisters and I can't help but smile. (funny - writing that makes me cry) Anyway, Gordon has huge bruises from a fall from the horse and he is sore but secretly I think proud that he can still take it.( men are weird) The kids loved it and Luggable Lou got us through. That counts as a great vacation.

Calling all Insults

Ok, this has been a personally rough week. Very funny though..... I went to an endrocronologist. He thinks I have sleep apnea and when I asked why he thought that he said my tongue was too big for my mouth. I know that is a clinical finding but it really hurt. Then I was in the walmart and the sales girl saw me with all the children and asked if I was their grandmother. Ouch. Yesterday the doctors office called and told me that I was deficient. Apparently I do not have any vitamin D. They want me to start taking large doses to help. Boy my confidence is shot. Gordon was kind enough to tell me that my tongue probably got that way from over use. (talking - don't get any ideas) I turned to my mother for support about the grandma comment and she fired off an email with grandmother jokes and tips. So much for the support system! It is pretty funny. I guess that there is so much stress and tension in my life as a mom and wife that my own life is just goofy. I am still searching for mediocrity. To be average, look normal, to blend in. All of this is really funny but also pretty sad too. Most people don't get one of these let alone 3 in a week. Oh well, I will keep laughing and try not to keep looking at my tongue in mirrors.

Call 911 - Call 911

Ok, my sister-in-law said I should tell the ticket story and it does involve police but I think this is a better story. Yesterday morning I was in the shower and the doorbell rang. The children came up and told me that no one was there but there was "white foamy stuff on the door" I told them to lock it and I would come down and see about it. When I got dressed I came down and the foam was almost all dissolved but you could see it there. I then saw about 6 police cars and 2 teenagers in the street several houses down. I told the kids to stay in the house and went down the street. I asked the officers if these were the boys who sprayed my front door and they said they didn't know what I was talking about. I gave them a statement and asked if I could clean my door. They said to go ahead. I came home and Joshua cleaned the door for me. About an hour later the doorbell rang again. (you are right, I was not getting much done with all this ringing going on) It was the police with the boys and a roll of paper towels. They wanted to clean the door. I told them that it was already done and then told the boys that somebody always has to clean up the mess when they make bad choices. They tried to apologize and I told them they would have to apologize to Josh. I then explained that he was 9 and has a brain tumor and that you never know who is having to clean up your mess. I thought the one boy would cry when Josh came out and showed them his scar. They said sorry and promised to never do it again. It was probably mean to pull out the cancer card but it was priceless and I think they learned a lesson they will never forget. Also I think I made the officer's day, as they left I heard him say see what happens when you do things you shouldn't?
One funny thing about this story is that just the night before I commented to Gordon that in the first 9 months we lived in Nebraska the police came to our house 3 times (no - I never got arrested) and I thought that it was very quiet here in Texas. I can't believe that the very next morning I was dealing with the cops!
I guess the more things change the more they stay the same. I will let you know if that is a good thing.
PS. I did not get a ticket just a warning, thanks to my wonderful children. (refer to first sentence in this post)

More Ramblings, Read at your own Risk

I have been so down lately. There is no one that understands how I feel. I found out this week that one of my sister-in-laws is pregnant. (another is too) That is the best news ever! I am glad that both of them are expecting and can't wait to see these precious babies BUT (yes that is a big but ((hahahaha)) ) it is hard to see people going on with their lives. I am not going anywhere and I am frustrated. It is hard because a lot of people think that with Josh finishing chemo that everything will go back to normal and we will be ok. It doesn't work that way. This is never going to be over. We will be done chemo but there is always something to deal with and we still have the worry. Every decision in our lives in now made by this terrible monster. I wanted to go to a time out for woman meeting but I couldn't, we had appointments. I don't mind the sacrifice for Josh or the other children, that is more than ok, I just feel like everything is closing in. All the things I want or planned for just don't matter. I don't have anything to look forward to, now my life is reduced to taking care of the kids and waiting for the next obstacle that I need to overcome for them. I know I can't get pregnant, and yes I know that right now we don't have the energy for a little one but the thought of new life and hope sounds so wonderful. One of the things that I have lost in this fight is that, I did not think we were done having kids and everyone is very quick to tell me now that is not possible. It breaks my heart to think that maybe there was another baby but that door is now closed. That is kind of what I mean when I say I have lost my dreams. There are no choices now I just have to get through the days one by one.
I know that I have to get over feeling this way but it is not that easy. I will find a way, I have to for the children and Gordon but it doesn't change how I feel today. As for the new babies, I am not sad about them, how could I be? If I had heard that someone got a new job or any other great life changing news it would have been the same thing, How I feel is completely about me. (sounds selfish doesn't it?) I just want my life back, I want Josh's life back, I just want to be average.