Guilt

This post is a little exposing of my inner thoughts and feelings.  It is hard for me to be so honest in such an open way but I have been told that I should put everything out there so here goes...

I have been feeling guilt lately for lots of reasons.  Most, I realize aren't fair for me to feel guilt over but I still feel that way.  First, I feel guilt that my son is ok.  I know this sounds crazy, and believe me I am SOOOO very grateful that he is ok.  I am so very thankful that our journey with cancer (so far) has been 'easy' compared to so many other children facing this horrible disease.  The emotions aren't 'easy', the stress isn't 'easy', really none of it is 'easy', but my baby is ok.  He is doing well, he barely understands all that he has been through, and I don't think he has any idea how bad cancer could have been.  Which was always the way we wanted it to be, I fear for the day that my son realizes all that he has been through, when more of his innocence is shattered.  This isn't the case for a lot of children with cancer.  A lot of families have so much more stress, appointments, chemo, hopeful moments then huge setbacks.  Huge, scary, no-clue-what-the-future-holds setbacks.  My heart breaks for these families.  I hurt for these families.  I feel so strange going on with my 'easy' life when they are in the midst of such pain and tragedy.  I remember the feeling of the world going on around me when Channing was first diagnosed, and some families have that feeling for years.  I feel so unfair trying to talk to them, reassure them, and mostly cry with them because my son is ok, and theirs is not (right now, because he will be, he better be, he has to be!!!).  I feel so confused that my prayers were answered with my son, and other families prayers are still waiting for their answer, no idea what the answer will be.  Again, I am so beyond thankful that Channing's journey has been what it has been, but these thoughts and feelings and questions are all still there.

I feel guilt that we are being given a Wish Trip.  I feel that maybe we don't deserve it (I know that everyone will reassure me and tell me that we deserve it and all, but this is how I feel).  Again, I am so VERY grateful that there are organizations that understand the constant stress, anxiety and fear that goes along with life-threatening diseases but I think I am in denial that yes, Leukemia is life-threatening.  I don't think I ever truly let myself think that, because that wasn't really an option.  Channing was going to be fine, just like Ellery wasn't going to be born until after Channing's last inpatient (Channing's last inpatient was 5 days after my due date and it was a long shot, but just as I needed it to and expected it to I didn't have Ellery until after Channing was released from his last inpatient).  Since we have had an 'easy' road comparably to others on the childhood cancer journey I feel so unworthy of accepting this trip.  We are accepting the trip, and I am so grateful to take the trip - I need a vacation away from the daily stresses of life with cancer, but I feel that everyone needs a vacation and that people are judging me because again, our journey has been 'easy' comparatively (Again, I know that many will give reassurances here too, but this is just how I feel). 

I feel guilt over my daughter.  My sweet, crazy, independent 4 yr old who hasn't known a life without cancer.  She thinks its normal to get pokes all the time, she thinks medicine can cure anything even the smallest of owies, she thinks its normal to have a Port, she thinks its normal to have sanitizing parties.  She has also lost a bit of the innocence of childhood.  I feel guilt that I have missed out on the most important years of learning in her life.  Discipline for her has not been consistent, she has lived with a mother so consumed with her older brother that she has fell the the cracks.  I didn't do pre-schooling with her at all, something I did with her brothers.  I feel guilty that she wasn't potty trained until close to 4 because there has been no consistency in our life, and when there is I am just too physically and emotionally exhausted to take on more.  I feel guilty that my kids have a second, third, fourth homes with different families that so willingly have accepted my kids into their home for every appointment Channing has had, people that I can never truly thank enough for their help. I feel guilt over Jakob, who has been known a lot as 'Channing's Twin'.  Who doesn't understand that mommy spends more time with Channing because he is in the hospital, that Channing gets all of these things because he is sick.  I can't count the many times Jakob has said he wishes he had Leukemia.  My heart breaks every time I hear Jakob say that.  He doesn't want it, no child should ever have it, but he sees all the cool things Chan gets and doesn't understand how truly terrible cancer is.  All of my children have lost some innocence and I feel guilty about it, even though I realize that as long as I do my best that is what matters. 

Don't get me wrong here, I know just how hard this journey has been for me, I know just how deep into depression I can get from the stress and worry.  I know how hard it is to make plans because I never know when the next fever or ER trip is.  I don't think anyone but my mom is actually privy to just how much I am affected every minute of everyday by the stresses of cancer, just how many times we have been to urgent care or the ER, just how many rounds of antibiotics Channing has had.  How I joke that we are 10 days on antibiotics, then 5 days off until we are sick again (which sadly has been more than true this winter).  How debilitated I get when someone in the home gets ill, because I am soooo scared that Channing is going to get sick, that he will be postponed again, that maybe this is the time that he will be inpatient, or worse.  How frightened I am whenever Jakob has any sort of ill symptoms that maybe this is the time that we will have a second child with a life-threatening illness.  I try not to let these things consume me, because they could, and some days, weeks they do, but I am not sure this guilt will ever go away.  For now, I will just be grateful, and count my blessings, and pray for miracles for others.  I wish I could do more....