Why can't mom do this anymore....Are you sick again???



"Cousins"
My Son and Daughter
(with their younger cousin)

Cancer isn't just an individual thing.  Cancer affects all who have a relationship with the person suffering from the disease, especially the children.  Adults usually have acquired the coping skills to help them through those difficult times, but children, depending on their ages, haven't fully learned what those coping mechanisms/skills are.  Whether your a parent, grandparent, aunt/uncle or even a friend, each one of us tries to be there for the children.  Some of those individuals plan many activities to keep them busy, so that they have little time to think about the current circumstances, while others sit and discuss openly what is going on and answering questions that the children may have.

When it came to our children, my husband and I, did not keep much from them.  We both explained to them, on a level of their understanding, what was going in and what they might expect and will expect.  As a parent, it was one of the most difficult things to do.  That is one of the last things I expected I would ever have to explain to a 5 and 7 year old child. 

There were many tears...many hugs and kisses.  I can't even fathom the number of phone calls and Skyping that took place.  Thank God for technology.  Especially Skyping, it really seemed to help the kids to be able to see me and see that I'm okay versus just hearing my voice over the phone.

The actual visits at the hospital and the apartment in Pittsburgh were very difficult.  I was so excited to see them but also very anxious.  My anxiety level would be through the roof because of possible germs and their high energy was very emotionally and physically draining.  I was very exhausted after their visits.  Many times I had to wear a mask because of germs.  I couldn't hold them and just snuggle with them and reassure them everything would be okay.  First, because of possible germs and my nonexistent immune system, and secondly, how could I promise something that I didn't even know if I could survive or not.

We, as parents, are suppose to provide for and protect our children.  I felt helpless.  I felt myself as a failure as a parent.  I kept thinking "this is so not fair...why do they have to go through this...why do they have to witness this...how is this going to affect them now...how will this affect them as they continue to mature and become adults...will this experience help them to understand that life isn't static, its constantly changing, sometimes for the better and sometimes not so good.  Other times I thought...will they shut down...will they bottle this inside...will they become resentful...etc.  It was such a scary time for me in regards to what they were thinking and how they may be feeling. At times, I would explain to them that if Mommy did go to heaven, its because God needed her there.  And that just because Mommy went to heaven to be with God doesn't mean that I don't care for and love them.  I will always be a part of them and I would always be in their heart.  I didn't want them to think that I left because of them or something that they think they may have done. I needed to reassure them of how much I love them and how proud I am to be their mother.

I remember so many tears and struggles when it was time for them to leave after a visit.  I could hear their cries as they left the room and walked down the hallway.  I remember a day that I was able to go outside and enjoy the warmer weather and we were all outside enjoying being with one another out in the open air rather than being couped up in a hospital room.  They had been there for awhile and it was time to go.  I remember my dad loading them into the vehicle and both screaming and crying that they didn't want to leave.  Both of them stating they wanted their mommy.  My heart was shredded and torn.  I was helpless.  I didn't even know what to do or say.  I wanted to reassure that everything would be okay, but I couldn't.  All I could do was embrace them with hugs and kisses and let them know how much I loved them and was so proud of them.  Every departure I tried to leave them with something positive, because I didn't know whether I would see them again.  I had to let them know how grateful I am to have them in my life and how proud I am of them. 

Even as I sit here now reflecting back on those days, I become so angry that they had to experience such an ordeal.  It still affects them today.  Even though it will be two years in November since my transplant, I still have days that I'm not feeling well.  My son will usually say "Awww great...you sick again...why can't you do _____with me".  I try to explain that even though much time has passed that I'm not 100% better and that I may never be.  I explain that the cancer could come back but that the doctors say I'm doing really well. 

When I make my monthly appointments to Pittsburgh, my daughter exhibits more anxiety than my son.  During the whole months of treatment and living away in Pittsburgh, my daughter, who is the youngest, held a lot in.  She would say "I will be strong...I won't cry".  She said this so many times, while my son, showed his emotions and cried if he wanted to cry and became angry when he wanted to be angry.  We were so worried about how differently they were coping with everything, we even had them go to a therapist, who stated that for everything that is going on, the are remarkably coping well and not to worry because they are coping in different ways. 

So now, my son is older and seems to be doing much better.  My daughter, however, has her good days and bad days.  Finally, when I was able to be home full-time, she was glued to my side.  She wouldn't go anywhere or even stay anywhere.  She used to love to spend the night at her grandparents house but she couldn't do that or even visit them unless I was there.  After about a year of being home, she was able to spend a night or two and than would regress for a period and then begin to become less attached to me.  This past summer, we were at the community pool and she, her brother, and my mom and sister-in-law were in the pool swimming enjoying the hot, humid day.  I was sitting under a pavilion talking to a friend of mine and all of a sudden my daughter comes up crying, saying she doesn't want me to go to Pittsburgh again.  I really wasn't sure what was going on and why.  So when I asked her what happened she stated that she just heard a song that her, and her Dad and brother would listen to on some of their trips to Pittsburgh and it made her think of those times which made her sad and scared.  It really hit home on how much this has impacted her.  It was this stupid song that triggered this horrible memory for her.  And now, she won't stay anywhere again.  She has stayed at a friends house but won't go to her grandparents or anything.  I think its because she associates her relative homes as places she went when I was sick. 

So all I can do now is let them both know how much they are loved and how proud I continue to be of them.  I still can't promise tomorrow...but I can promise today...and we need to continue to show love and respect for each other because you never know what tomorrow will bring.