October 24, 2012

I know I have talked about my days being constant ups and downs and today was no different. Mac is feeling good and at home so that should be good enough, except it isn’t. We have settled into routines that consist of Mac missing school at least once a week or being dismissed for not feeling well. I can never tell if he just needs a break or is really not feeling well, and to be honest it doesn’t really matter. If he is tired and needs a break he is not going to learn anything at school anyway. So today started out as usual with me dropping off the boys at school then running to the store to get Mac the Ironman Arc Reactor (the glowing thing on his chest) that lights up. The phone rings at 9:30 and it is time to pick him up because he got sick and his stomach hurts. This usually would not change my mood that has been up and down so many times already from the many Facebook friends I have met whose children are also battling this horrific disease or have earned their angel wings far too soon, so I pick him up and bring him home. I pick Liam up at 11:30 because it is early dismissal and explain Mac is not feeling well so we will not be able to go out for lunch and to the movies as previously planned. He is so disappointed, but Liam being Liam while holding back tears says “its ok mom, I understand”. When we get home I go to sign his homework planned only to find he had written in “see movie with Mom and Mac” in today’s to do list. My heart physically hurts. I am so mad that he has learned to accept disappointment so easily. I have learned to make plans but always be flexible knowing things can change at any minute. I am so angry today that my boys have to live this way. I don’t know why any child would have to live battling this disease or any child would have to watch their family torn apart as a sibling physically rages war on their own body. I have accepted this as our life, knowing we will have highs and lows but our lives will never be what they were or even ok again, but how do you explain this to children. How do you explain how great it is that Mac is feeling well and looking awesome, but it’s not good enough? We have learned to be thankful for our time together and live every moment as if it was our last, but wow is that exhausting.

So hug your kids extra tight tonight and remember the laundry and work will always wait for you….your kids cannot.

October 10, 2012

I am completely drained after today’s visit at the hospital, but in a good way. It was a long ride in this morning. It took us a little over 2 hours with traffic, but Mac fell asleep for a bit which was good. He is so tired lately. Our first appointment was with GI. We talked for a bit and they are changing his prescription from Pepcid to something I can’t pronounce and then we will go back next Wednesday for an ultrasound of his abdomen and scope to see if there is anything going on in there causing his daily vomiting. From there we went to our next appointment for his psych evaluation. We had a little trouble finding it and when someone asked me if I needed help I told them the floor and wing I was looking for. She said “That’s the psych ward” with a weird look on her face. I just said “That’s what we are looking for”.  Finally, we stumbled upon it. I have been seeing someone about my feelings about Mac’s diagnosis, but it was a whole different ballgame having Mac with me. I have to say I could not have been more impressed with this psychiatrist. We started talking about what Mac was like prior to diagnosis, and then the topic changed to school. I was explaining how he was in first grade when his tears started flowing. I explained how Mac was still struggling with the idea of repeating grade 1. Mac was able to tell him that he was sad about staying in first grade. Through a series of question he was able to get from Mac that is has nightmares that do not wake him up but scare him. Somehow, Mac ended up sitting on my lap crying and communicated that he is scared most of the time about something happening to him but was not able to yet share the specific fear. I have never felt so heartbroken, sitting with tears in my eyes, with my baby on my lap crying uncontrollably and hurting so much inside. I cannot say for sure what Mac is afraid of but I know my own fears. I guess up to this point I was living in la la land thinking because he was only 7 he would not think about the future or begin to worry if he even had one. His psychiatrist explained that just like we are going through the mourning process for the normal life we wanted for Mac, he too, is mourning the life he used to have. I guess up until recently I have been so focused on his physical needs that I did not think about the complexity of emotions he is struggling with. I have read the poem “What Cancer Cannot Do” a hundred times. Cancer has broken my heart, made me feel sadness and fear to my core, but it has also shown me just what an incredible gift my children have been to me and allowed me to see the beauty in the everyday mundane things in life I used to take for granted. The sight of seeing my boys sitting on the floor playing a game and laughing, talking and even arguing a bit has become one of the most beautiful sights in our home. I am thankful for every moment we have together, it is such a shame in life how it usually takes such a tragedy for us to realize and really see the beauty in our lives.

October 4, 2012

It has been a while since our last update.  I’m not really sure even where to begin. Physically Mac is doing great. Although his Dr. has some concern he may be developing an ulcer so we will have that checked out next week. Emotionally, we all seem to be on the edge of full blown nervous breakdowns.

Liam was devastated when hearing of the loss of the little girl who had been on the news and met Justin Bieber. He has cried several times over various things that seem to get blown out of proportion and because of his heightened sensitivity hurt his feelings.

 Mac seems to be falling into a depression. I started to notice a difference in him when school started, but it has gotten progressively worse. He has been able to share with me that when he cries it is because he is sad, but does not know what is making him sad.

 I feel like every time we have a few great days and I start to feel like I really got this “new normal” life down, something happens. This new life will never compare to our old life, but we are all still home and together so what is there to complain about, right? That is when I fall apart. That is when something will happen like the doctor suggesting a psych evaluation because clearly Mac is struggling with everything, and who wouldn’t be? That is when I feel so helpless. I just don’t understand why all of this happens to children, why they are made to suffer so much, and why parents have to sit back and watch their children hurt physically and emotionally. It is just so unnatural. I hate that I cannot help him. I hate that I am always one wrong word away from tears. I hate that my children are so sad a lot of the time. Most of all, I hate that I never realized how absolutely perfect our lives where and how I took for granted the joy of having 2 healthy children.  I have learned to let go of planning and have started to try to live in the moment. I will never stop praying for a miracle nor give up on my faith. I just wish I could find some way to get past the sadness and guilt for not being able to give my children the childhood they deserve.