It has been eight months since Nick left this world and the wounds on my heart run deep. The healing process is so slow. As soon the wound shows even a slight scab, a painful memory or image comes and causes this wound to reopen. This is the process. This is normal. This will take a long time. A wound this big will leave a big scar. I still have so much anger about what happened to Nick. I am still trying to figure out how to live with all that is in my head.
On this date one year ago, Nick had been in the hospital for thirty-six days! This picture was taken after Nick had gotten his "hair" washed. Of course, he didn't really have any hair to wash. His skin was sloughing off due to the radiation treatments (which he completed on April 2nd!). Nick was on some form of oxygen for the duration of this admission. He would never be off oxygen again because his lungs were so bad! As you can see by his skinny arms, he had lost a lot of weight by this point. When I see these pictures, the memories of this time come back so strong. It is like it all happened just yesterday. I don't know if I will ever be able to forget these images and the sad eyes of my son. Nick was really hurting during this time. His mouth and his throat were a mess from the radiation. He was not able to eat for weeks and pain medicine really didn't do much at all. There were so many things going on throughout this admission. But, ultimately, it was the status of Nick's breathing that continued to be ignored and attributed to anything and everything under the sun. No one really knew what the hell was going on with Nick's lungs. There was always feeling that if this was an infection it would get better right?????????
It would be on April 14th that Nick would finally go for pulmonary function testing, almost
EIGHT MONTHS AFTER HIS BMT!! Not at the three month mark, not when all the coughing and respiratory symptoms started, not when there were suddenly changes noted on CT scan,
not at the six month mark,
not when he continued to have increased breathing rate, increased heart rate, FATIGUE, FATIGUE,
decreased appetite,
WEIGHT LOSS, exertional dyspnea, and generally an ongoing overall shitty experience for weeks and months after his BMT, no let's wait until Nick has to be readmitted to the hospital and discover that his room air sats are 88% and he needs to be on oxygen FOR THE REST OF HIS LIFE (which would be four months!!!) And then let's wait until he is thirty-seven days into an admission from hell to get pulmonary function tests!!Today I was down at the hospital...ran into someone from 5B. He asked me how I was doing. I said, "Not good." His reply, "Why, what's wrong?" I couldn't believe I was asked this! In my head I said, "Oh nothing, my child is dead that's all." Out loud I said, "Well it has been very difficult learning to live without my son." Similar experiences have happened in the last few days to weeks and
I have suddenly come to the horrible realization that while these wounds are so fresh for me, they are not for everyone else. I feel like Nick just died yesterday. I am hurting. I am crying. I am struggling to find meaning. I feel like I am going crazy. It has been eight months and I feel that "you need to move on" sentiment starting to roll ashore. No one has ever said that to me in words, but, that is how it feels. Now I can see why the longer my grief continues on I will not be able to say how I am really feeling. Not without getting that kind of "Oh, what's wrong?" reaction anyway. I will have to resort to my prepared answer, "I am doing OK all things considered."
This response is what the Compassionate Friends group suggests to say when people ask how you are doing. I say, "What the f&*^%k kind of bullsh*t is that?" The problem is most people will take that answer to the bank. That let's everybody off the hook. People can go on their merry way and breathe a sigh of relief, "Oh, hey, she is doing OK
all things considered." No need for more discussion. No need to delve any deeper into that one. It is so hard to hold things in all the time. To put a fake smile on my face and pretend everything is OK for what purpose?? This is why I have to stay away from people. I don't feel safe in most environments. It is not worth the emotional energy it takes to go about pretending everything is OK now!
NEWSFLASH: IT IS NOT F%$#@*KING OK!!!!! I just have to keep myself contained to those few people who somehow get it and are there for me. That is all I can do. And those people have lives and I have to get that and figure out how to do this pretty much on my own. It is the most horrible thing. I wish I could explain it so people could understand. Eight months without my boy. The sadness pulls me down. I am doing all that I can. I don't want to do anything but see Nick and be with him, wherever he is. There are times when ending all this seems like a good idea. I am tired and I see no end to this pain, no purpose for this wretched existence. When I see how it goes when people leave this world, I think what is the big deal? People will move on, that 's what people do. In eight months or so, all will be fine with the world.
One More Time With Feeling by Regina SpektorYour stitches are all out But your scars are healing wrong The helium balloon inside your room has come undone And it's pushing up at the ceiling And the flickering lights it cannot get beyond Everyone takes turns Now it's yours to play the part And they're sitting all around you Holding copies of your chart And the misery inside their eyes is Synchronized and reflecting into yours Hold on! One more time with feeling Try it again, breathing's just a rhythm Say it in your mind until you know that the words are right This is why we fight You thought by now you'd be So much better than you are You thought by now they'd see That you have come so far And the pride inside their eyes Would synchronize into a love you've never known So much more than you've been show Hold on! One more time with feeling Try it again, breathing's just a rhythm Say it in your mind until you know that the Words are right This is why we fightI am so sorry my sweet Nick. You fought so hard. I fought for you as hard as I could. I wish we could have won this fight. I miss you my sweet boy. Please come home to your Mama.
I Saw From the Beach
The Well of Grief
Here are two of my favorite Easter babies. This is our first Easter without Nickolas. It is very strange and sad. When I was working as a nurse when the kids were young, I always had to work on Easter. We had to do every third weekend back in those days and for YEARS, my weekend fell on EASTER. I remember putting their baskets together and writing in their cards and being so upset that I couldn't be with them. This picture was taken at Pip and Nana's house. Glenn would take them over for the Easter egg hunt and dinner. This is Nick and Sara in the back yard looking for eggs. Obviously, Sara was pretty young because she is still wearing dresses! And then there is my little man Nick with his dapper penny loafers! I missed so many of those Easter memories when the two of them were little. I don't even remember last Easter. All I know is that Nick was in the hospital for all of March and April and Easter fell in there somewhere. Now all I can think of is my son's sweet face and how there won't be any more Easter memories for us with Nick. I made a basket for Sara last night. It doesn't feel right not making one for Nick. It is such a horrible realization each time I think about Nick being gone. No Easter basket needed. No Easter card needed. Another Mom who also lost her 20 year old son Grant to leukemia a little after Nick told this story on Grant's Caring Bridge site. She told of how she had gone shopping and she put three chocolate bunnies in the basket without even thinking. Then she realized what she had done and she said, "I still have three children in my heart." And I still have two children in mine. I am so sad. I miss you Nickolas. It will never be the same without you near. I love you always, Mom.
This is Nick on his way to radiation via wheelchair with one of his favorite nurses. On this date last year, Nick made his last trip to the basement of the cancer center! Nick was only supposed to get twelve treatments, but, they decided to make it a baker's dozen and he had to go for thirteen treatments instead. This was hospital day #25 and poor Nick was totally wiped out and exhausted. Of course the biggest part of this fatigue, weight loss, and lack of energy, had to do with the deterioration of his lung capacity. At this point, the doctors hadn't even done the pulmonary function tests yet, so they had no clue how BAD his lungs were. I really don't know how he did it. It is surely a testament to Nick's will power and his ability to put mind over matter. God bless his heart and soul. When I think of all he went through it is just agonizing for me. I try not to think about it all the time, but, right now, this is what I am doing. I have to do this. I don't understand why, but, I just know. There is so much to process and I have to find a place to put all this pain, all the bad things that happened to Nick that I had to witness and I was powerless to control. Pictures like the one below bring back those memories and all the emotional pain that goes with watching your child go through something like this.
William Wordsworth
