Friday, January 14, 2011

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.

Tuesday, January 11, 2011

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.

Friday, January 07, 2011

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.