Like most parents, I often think about how Henry will reflect back on his childhood. I want him to remember growing up in a happy home full of love and laughter, with parents that would look for monsters under the bed and sing the dinosaur song.
I don’t want him to feel as if he grew up in the shadow of his mom’s cancer. I know children are resilient, but weeks like this make me especially paranoid. I’m in a clinical trial where I travel to Houston for infusion once every three weeks, and while I’m grateful the chemotherapy is working (Hallelujah!), one of the biggest side effects is the toll the drug takes on the immune system.
On Monday, a spiking fever and dangerously low white blood cell counts landed me a three-night’s stay in the hospital. When anyone goes to the ER and gets admitted to the hospital, he or she will likely stress about the job or responsibilities that will be missed, but when a parent of a toddler gets the "WE’RE ADMITTING YOU" verdict at 9 p.m. on a Monday, it starts a babysitting panic!
This week I relied on all my resources, stringing together three days of grandparents, school, friends, cousins and “faux grandmas” to take care of Henry during the day while Chris was at work. Henry asked each person, “Where’d Mommy go? I want to go see Mommy.”
Talk about heartbreaking.
He’s turning three years old in a few days, so even though he’s not old enough to know exactly what’s happening, he knows that something out of the ordinary is going on. We tried to use honest, plain language that he can understand, explaining that Mommy is staying with the doctors, and they are giving her medicine.
When Chris and Henry came down to the hospital Tuesday night to have dinner with me, I was fully expecting a meltdown of nuclear proportions when it was time for them to go home. The last thing I want is for visiting Mommy in the hospital to be a defining moment of his childhood, so I tried to look as normal as possible: I changed into plain clothes, ran my I.V. line down the back of my shirt and rolled my I.V. pole over to one side. I even bought a package of gummy bears in case we needed heavy artillery to calm him down. (Hey, don’t judge. Desperate times call for desperate measures!)
Henry was so happy to see me when they got here, it made me feel better than any medicine possibly could have. He showered me with hugs and kisses, and with Henry being Henry – he also climbed on the furniture, pressed the call nurse button, and flushed the loud toilet about 15 times.
And when the nurse came to change my bag of antibiotics, Henry sat very still watching her, then said very matter-of-factly, “That’s Mommy’s medicine.” The nurse agreed with him, and he went back to watching a YouTube video about dinosaurs.
After a few hours, it was time for Chris and Henry to leave. They walked out of the room, with Chris telling Henry they were going back to look at the fish aquarium in the lobby. No meltdown, no bribe, no traumatization to discuss in therapy 20 years from now. Just a little distraction and a simple explanation seemed to do the trick.
As for me, well ... when they left and my fever spiked again, buying me at least another night’s stay, the loneliness of my quiet hospital room consumed me, and I couldn’t smile and fake it any longer. As I sat in the dark with tears streaming down my face, I realized I had been trying so hard to take care of Henry’s emotions, I hadn’t given any thought to my own.
In the end, I was the one having the meltdown and finding comfort in the bag of gummy bears. My secret to sanity despite living with metastatic cancer is putting one foot in front of the other and trying my best to stay optimistic. But some days are harder than others, and it’s taken me a while to accept that sometimes it’s OK to not be OK. Because sometimes the only way to keep moving forward is to let yourself stop and have a pity party first.
Of course, I don’t have time to pity party very long – I’ve got Henry’s third birthday to celebrate this weekend. After all, one foot in front of the other, right?
Oh my gosh. I just realized who you are. Yes I know you. You have always been the sweetest person. I am so sorry you are going through this. I know I prayed for you the first time every day. I did not know it was back. Of course I will continue to pray for you. Thank you for sharing your story. Love you girl. Hang in there for this too shall pass.
Hi, Carrie. I'm the sister of one of your brother's old friends (Jeff Perkins) from Atlanta. Thank you for sharing your experience and emotions. As a wife and mom of three, I hope that the love of your family will give you joy and peace. Peace of Christ to you.
Praying for you! I came across several pictures today from our trip to Disney with the HS band. You have always been such a fun loving, caring, & upbeat person! I know that God has great things in store for you & your family! I certainly hope your doing better! & were able to enjoy his 3rd birthday party. Much love & hugs sent your way!
I enjoyed your story....I can relate completely. I was first diagnosed with breast cancer at age 32 and then again 25 years later....then metastatic cancer was found 2 years ago. I have 4 legged children, but like your Henry, they require a lot of care ( although less explanation) and I love them dearly. We all have days like yours. They can even be just a regular day when I ask myself "why do I have to deal with this?"......I have a husband who is just amazing, but I try to be less sick because I want to be his wife and not always someone he takes care of. I find its best just to cry it out and then move on. And if I need more than a cry, I reach out to a friend. The difficulty of dealing with this is harder than words can describe. But we know, all too well how precious life is, so we embrace every second we can. I wish you the best......hang in there.....you are doing a great job with Henry! I cannot imagine having a child and dealing with cancer at the same time. God Bless.
My mom died of cancer when I was young and now I have the same thing that killed her. I remember as a child her being ill, but the love of her and my Dad, Aunts, Uncles and all the other people and the times we had fun on a vacation or sitting together watching a movie and eating popcorn are what sticks in my memory...and the hot fudge sundays in the hospital cafeteria that we had when we left to go home (our fish aquarium distraction I now realize) You sound like an amazing person, God bless you and your family. A "pity party" is what is needed now and then the tears clean the soul.
Bravo to you, Carrie! You didn't let your "pity party" affect your children...you put others first and took the "high road." Thank you for this story that will stay with me as I walk through today with leukemia.