blowing off the dust

I was curious if this space was stll around. It is a little weird to go back and read the last couple of posts here because I was in such a bad place. It is funny how things have changed and I had no idea what life would really be like living with cancer. Things are a lot more normal than I expected. The kids have had so much joy and laughter this year and I have gotten to be present for all of it in a way I never would have before. I truly know my children and love the people that they are. It seemed that I always thought that pediatric cancer kids were these pitiful children who lived in saddness and pain. Maybe that is true for some but it certainly isn't for us. Elijah can go from getting chemo to running, jumping, and terrorizing his sister within seconds. He is not nearly as bothered by treatments as we are. Elijah doesn't live that differently than a lot of 4 year olds. He isn't in preschool because we chose not to send him but he is no longer restrictied from going. Even wedn't live in the constant fear we lived in a year ago but every once in awhile we are smacked into the graveness of this world. Those times are hard and I still don't have a great outlet for the emotions that come in those dark times. Thankfully those times seem far away right now as we go to swim lessons, Kumon, play groups, and normal everyday life.

Anyway it seems this place still exsists and I may write in it every once in awhile. I am not making any promises though.

Dismissed

Tonight I got a message from an old "friend" on Facebook and it just irritated me so much. I have been in contact with her as well as the rest of the group of friends from college since Elijah's diagnoses and so you would think she would be in the know, so to say. So she sent me a message saying I just saw the picture of you that says cancer sucks is that your little boy? (elijah?) I'm sorry. Oh and I see you have a daughter now, she is cute.

WTF! Our kids have played together and we used to have lunch together once a month and you can't even be bothered to know what his name is. First why not f***ing look at my page and see what is going on before you message me. Second I sent an email to you specifically saying I couldn't go to your event because of Elijah's chemo and treatments. If you have cared so little up to now why bother writing to me now. I don't take your letter as genuine concern, instead it just irritates me. So yes my son, whom you know and is the same age as your daughter, has cancer. Yes I have a daughter who you haven't bothered to know and will never know now. She is more than cute, she is my blessing. Why don't you just crawl back into the self righteous, self important cave you have been living in and stay the hell out of my life. I am done!

Normal Life

Since Elijah was diagnosed I have heard a lot of people, including myself and other cancer parents longing for a normal life. Today it finally occurred to, why? Why in the world would I now want a normal life for my son? When I was in school did I strive for a C, no I wanted the A. I don't want a normal life for my children, I want an extraordinary life for them. The reality is their lives can't be normal, but that doesn't mean I have to allow the circumstances to give them less. In so many ways we are learning that we have incredible people in our lives and that we are more than ordinarily blessed. I think that solely striving for normal cheats everyone. I want my kids to know joy and laughter. To see beauty and love. To be able to face hard times with courage and strength. I want them to believe in themselves, and to know that both of their parents believe in them too. To solely strive for normal, misses the mark that I want in so many ways.

This week we had to make a very hard decision in the future of Elijah's care. The picc line that we had in his left arm fell out the other day in the hospital. Elijah needs some sort of central line to give him all of his treatment. There are several options for this and we had to decide which one was the best. Each option had strong points and weak points and we needed to evaluate that with what is best for Elijah. Ultimately Brad and I decided he would get a port o cath. The advantages to this is that there is nothing external sticking out of him that we have to take care of and keep dry. It also is less prone to infections. The down side is that it has to be accessed with a needle each time it is used. This is where we struggled to deal with normal. We worried that he may be abnormally bothered by the needle pokes. I kept weighing back and forth with what I thought a normal reaction should be to being poked with a needle. Then it hit me, normal kids hate getting shots and they react from it. So many times I sat in the pediatrician's office and listened to the wailing and screaming of "normal" kids getting vaccines. I already knew that Elijah handled getting shots and vaccines better than most kids his age. With this knowledge I have to believe that he will do ok, eventually with the needle accessing his port. The rest of the advantages allow Elijah to get back to striving for an extraordinary life, not restricted by tubes dangling from him as a constant reminder he is sick. We may be wrong in our decision, we may never know, but right now I am confident in our decision. This is just one more step in the path we choose for our son.

Screaming in an empty forest through a megaphone

Ok so I came up with this title a couple days ago and at the time I was alone here, so please no disrespect meant to you P as I know you are hearing my rants. It is funny though that I have chosen to write here again knowing that really no one is checking here. I guess the reality of my situation is that I really need to vent and just get everything out being heard isn't nearly as important. It has been a bad couple of days around here, and considering our new baseline for bad days you can guess they have been really bad. We don't seem to be getting anywhere with Elijah's fever and hospital life is frustrate g at best. We have had a string of not very good nurses and problems escalating. Yesterday after a day of the nurses not listening to me say there was a problem with his picc line Elijah rolled over and his entire picc line came out and dropped on the floor. Let the drama really begin, because he didn't have a picc line they needed to start an iv, the nurse couldn't do it in his left arm so instead they put it in his right hand and then splitted his whole hand. Yes take a three year old and completely immobilize their dominate hand and see how that goes. All night long Elijah moaned and whimpered and curled into the fetal position. By 5 am the iv was beeping every 2 minutes that it was occluded. They try to change the dressing to see if that will help. Two minutes later it is beeping again. By now the good day nurse is on as well as our resident. They discuss it and finally decide to pull the iv and give Elijah a little drug break. But they will have to put the iv back in an hour for his next antibiotics, and they will have to draw labs separately for the level of antibiotics in his blood. Just in the nick of time the residents and our oncologist do rounds. The Oncologist decides to keep Elijah off of everything. In the short time Elijah has been cord free he has been happy, he has started eating. He has improved so greatly it makes you wonder why we are here in the first place. All the drugs and intervention aren't helping him any. Perhaps just leaving him alone to heal on his own from this infection is the best course.

Living in the spot light

I am just a mom, I am not that special, talented, or unique. I like a lot of Moms am just trying to get through the day. Some days I can look at my kids peacefully asleep and think, today I was a good mom. More often though I think of how I came up short, missed things, or just didn't give them enough of my attention. I don't think that any of this makes me any different than most moms out there, we all struggle but we still love our jobs most of the time. Last month though my world changed. My 3 year old was pale so I took him to the doctor, thinking I was over reacting. They then sent me to the ER and by the end of the day I was told my son had Leukemia. So now I am a cancer mom. Let me assure you that the new title did not come with a cape. I am not a super hero, I don't have all the answers, and I am not now a better mom than anyone else. I am still just a mom, it is just I have some different problems to navigate my kids through. So please don't look at me with awe, don't treat me like I am the center ring at the freak show. Don't assume that I am handling things any better than anyone else would, because I am not sure I am. I now more than ever second guess every decision or choice I make and if I screw up we are back at the hospital. It is a lot of pressure and due to that I can't always meet every ones expectations of me. So don't expect much because I can't deliver.

I am dealing. I don't have a lot of choices in this because both my kids need me. My daughter is only 8 months old and she is being cheated. I can't be there for her like I want to be. I had to wean her and start her on formula because I can't nurse her and run my son back and forth for treatments. Something had to give and right now she is the one to always get the short stick. I am dealing with the guilt from this. So when I get out of the house without my kids, it is because I am taking a break. Give me a little space, I know you feel like you need to say something to me because we are going through a lot, but you don't. Really it is ok, just pretend you didn't see me. If you really can't help yourself and you have to say something to me, just say you are thinking of us and then walk away. It isn't that I don't appreciate the sentiment because really I do, I just would prefer to be emailed rather than cornered in a store. The thing is I am trying to clear my head sonI can get back to my kids and be a better Mom. I don't know what to say when people corner me, I get weird and babbly, and would rather chew off my arm than continue to fumble through an awkward conversation I am not prepared to be having.

I miss him already

In 48 hours I will be at the hospital preparing to have my baby girl. As excited as I am to have her I am also a little sad, Elijah can not visit us in the hospital. Since I will be having a repeat c-section that means up to 4 days of being in the hospital and I have never been away from him that long. I know he will be ok with all his grandparents watching over him but still I can't imagine not seeing him all that time. I know I am going to cry on the way to the hospital. I guess part of the thing is that I know we are turning his world upside down and I am just leaving someone else to deal with it.

I am also over flowing with emotion right now so I guess it is easy for me to stress. Not only am I nine months pregnant but today is the third anniversary of my Dad's passing. I wouldn't want to be a person to get on my bad side today that is for sure. The good news is with me having the baby on Tuesday the whole family is here today to celebrate my Dad's life. He was an amazing man and I was lucky to have had him in my life for as long as I did. We will have BBQ spare ribs and potato salad in his honor tonight. So food will be plentiful and the stories will get loud.

Language

Elijah is talking more and more. I will say that this is a great thing for many reasons, and I look forward to hearing his crazy stories and posting them for all to see. The problem is that as his language develops he loses some of the really cute Elijah words. For the longest time all liquid was Woe. Last week he began asking for juice or Woe. That was still fine and I liked that he was being more specific with what he was asking for, but then yesterday he asked me for water. It broke my heart a little for his word to go away. Last night for dinner I made pizza. In Elijah that would always be Pia, last night though he said oh Pizza. Why oh why can't he learn more words before he loses his cute words? He is turning into a boy everyday and this is the first time I look at him and want to slow time.

I know it is good that he is growing up and becoming more independent, especially with his sister quickly coming, but I love his being a toddler and am a little sad to see him grow up. The thing is I am not really a baby person. I see the first year as a blob year and was so happy when Elijah started walking and playing. Yes I loved him dearly the first year and I will love his sister too, but now is the first time in Elijah's life that I want to keep him at this age just a little longer. On Monday he will turn 2 1/2, each day he becomes more fun to watch. His imagination as he plays cracks he up. As I am typing this he is on the floor playing with his plains flying them. He then goes and gets his little farm and Moo's as he opens the cow door. He is learning and I for one love it. Yes my house is littered with toys that he brings out and then abandons, to run to the next thing, but it is a small price to pay.

All this makes me a little nervous for when the baby comes. I love where we are with Elijah and am scared about starting all over. How will she fit into the mix, and will Elijah get lost in that. Will she get the special time and attention that I had for Elijah? Will Brad and I have time to be a couple with two kids? I know we will work all these things out, but I am nervous for the transition. I will also say I am nervous to leave Elijah while I am in the hospital for almost a week. Yes his grandparents will all be there for him and will do a wonderful job with him, but he is my baby and I know I can't be there for him. I know I was just as nervous about how our lives were changing when I was pregnant with Elijah and now I wouldn't change anything, but still I worry. Since there are no answers that is all I can do for now.