So, an update: after Aidan's hospitalization after his port placement, he recovered well and we went home (and stayed home) for Christmas. There was one chemo treatment between discharge and Christmas that went fine.
December 27 Aidan spiked a fever again, and had a cough that I was not comfortable with. I packed a bag and took this shift, leaving daddy and the girls at home. I was pretty optimistic about this stay since the last one was rather routine. At least until the respiratory swab came back positive for influenza A. One of the two things our oncologists told us would be the most life threatening things for Aidan to catch. OF COURSE!!!!!! I'm pretty confident that I am the poster child for Murphy's Law: whatever can go wrong, will go wrong.
Days passed. Neutrophil counts continued dropping, or stayed the same. He dipped down to 30 on his lowest day, but by the way he acted, you would've never known. My neutropenic superhero. Then New Years Eve came, and in the hospital we remained. I was, and still am, in a world of hurt. We only made it two weeks before landing in the hospital again-is this going to be how it goes for the remaining 58 weeks we have left of treatment? Am I going to be this nonexistent mother to my daughters, because Patrick goes to work and I go with Aidan? Are my daughters going to think I abandoned them, and worst of all, will they REMEMBER that mommy was gone a lot.
If you would've asked me almost 3 weeks ago, how I was doing, I would've said I'm hanging in there. This is going to happen and we just got a taste of it firsthand. I thought I had began to deal appropriately. Ask me today how I'm doing? The truth is, I'm not okay. I'm angry. I'm depressed as hell. I'm lost. I'm hurting in a way I never, ever knew existed. You name the emotion, and I've played it out in the last 5 days. I've lashed out at those I love the most and caused hurt. I've made a fool of myself. I've found myself to be having the pity party I said I didn't want, only to realize that maybe somewhere deep inside, I did want it. I wanted people to comfort me and allow me to cry. Maybe it would've been a little healthy to feel sorry for myself?? But I didn't allow it because I know what happens when I let myself go there-its a land of no return. Pity Party City: population 1.
I've had so much one on one time with Aidan this week. When he's getting tired, he will say, 'momma rock,' meaning sit your butt down in the rocker and snuggle me, darnit! In those quiet, lovey, snugly moments with him, I've had so many conversations with him, with myself, with God.
Ones with God are usually me begging for protection of Aidan during this, and also me saying that I know He gave me this battle because I'm strong enough to fight it (with Him), but God, I just don't feel very strong.
Ones with myself deal with shame, anger, sadness, embarrassment, and lots of tears. They just won't stop falling.
And the most precious conversations, with Aidan are of me rooting him on and giving lots of reminders. Telling him that I know this sucks, that I'm sad that he understands a lot of what's going on, and how I will do everything I can to get through this with him. I tell him how sorry I am. I tell him that things may not always be easy throughout this, he might get sick, he might lose his hair, he might spend a lot of time in the hospital. But that no matter what I'm always going to be there, right beside him, wishing and begging that it would've been me that was diagnosed with cancer-not him. I hope that no matter what, no matter how psycho I may become, how emotional I am and will continue to be....he knows that he's my hero.
6 comments:
I read another blog about a child with cancer and I think it could be helpful to you.
http://highhillhomeschool.blogspot.com/
Thank you!
Hang in there! You are doing a great job and I can not even imagine how awful this how thing is to everyone involved. When my babies were born one of them had to be life flighted to another hospital, 10 hours away! Luckily, another triplet mom (with 7 year olds at the time) worked in the hospital where I delivered. I was feeling guilty abut leaving two of them to be with my little girl while she had heart surgery. She gave me some cherished advice. She said that there will be a time that each child needs you a little more than the others. That it is ok to do what is needed for that child and to not feel guilty about leaving two behind for a short while. Being a good parent is knowing where and when you are needed most and to do the best that you can. I just thought her advice might help since it helped me. I still felt guilty about leaving my babies, but knew they were in good hands. Aidan needs his mommy now and I am sure the girls will understand. Prayers to you and your family and know there are tons of people thinking about you all!
GO KICK CANCER'S ASS ADAIN!!!
Thank you for sharing that piece of advice, you are totally right!
I would love to say Hang in there Courtney. But sometimes I know I need people to plainly say, this sucks. Its okay to cry, to thrash out, that is what friends and family are here for you to do. Its okay to realize you aren't a superhuman, you are a mommy (although we do act as super humans). you are supposed to cry, supposed to yell, supposed to be angry. This is a normal reaction to the card you are being dealt. Aidan needs you right now. The girls - as crazy as that sounds will understand. They understand more than you and I think. They know Aidan needs you. Rely on your faith at these moments when you just want to crawl into a hole. He will pull you through. Use Aidan's testimony- because he already has one- as a witness. You already are. Aidan will change lives in this. You will change lives in this. Yes this sucks. Cancer sucks. It isn't right, but he WILL pull through. I just know it. I know God has BIG plans for you all. I am completely inspired by you and hope you know I wake up daily thinking of your precious family, praying for Aidan as soon as I think of him. I promise I will continue to do so. Now- Aidan- give it your all buddy, we are all cheering you on.
Thanks Sarah, it is so nice to know that some people understand. You, too, are a wonderful testimony for your faith. I an truly blessed to know you!
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