Last year Sarah Kate was given a Disney cruise by Magic Moments, an organization that grants “wishes” to Alabama children with chronic or life-threatening medical conditions. She got a few extra perks onboard the ship, like small gifts left in her room daily and a private reception with Mickey Mouse for all the “wish kids” and their families. The other two wish kids on our voyage had received a cruise from the Make-a-Wish Foundation, which means they were chosen because they had life-threatening medical conditions – not chronic ones like Sarah Kate.
When we sailed, Sarah Kate was about nine months out from her surgery and almost five months out from the end of the summer of rehab. She wasn’t yet back to where she had been before surgery, but we were well past the hardest parts of it. Gone were the days of weeping and constant struggle. She was still working hard, but we were confident in her ability to progress.
When we arrived at the reception with Mickey Mouse, we found two girls – one with no hair, and the other very, very young. I don’t know if their two families had previously met, but it didn’t take them long to connect and compare notes about their shared childhood cancer experiences. Save the missing hair, both girls seemed to be in good health and good spirits, but my heart ached for their parents. Although they were friendly and cheerful, their faces held a trace of an ever-present concern, and a need for their children to enjoy the moment with Mickey.
I felt out of place, and a little guilty.
Later that day, Mr. Andi and I talked about the reception, and he confessed to me that he felt like we didn’t deserve to be there, because our daughter didn’t have a life-threatening condition. Our daughter was healthy, so she wasn’t like the other kids. I told him I’d felt the same way. I couldn’t imagine what either the girls themselves or their families were going through, and I believed that what they were facing was much worse than anything we have faced. With some distance, though, I realize I was wrong to feel that way.
I don’t know where those girls are now.
One or both of them may, in the end, have not survived their cancers, and there’s no doubt in my mind that losing a child is infinitely worse than having them be permanently disabled. But my sense from both families that day was that their prognoses were good. Many children do survive childhood cancer and go on to live full lives, and my gut tells me those two girls will probably be among them. If I’m right, their cancers will eventually be like a bad dream, much like our NICU experience with Sarah Kate. Their triumph over illness will simply be one dark thread in the fabric of their lives.
I wonder now what those families thought about us.
Did they think we didn’t belong in that room with them? Or is it more likely that they saw Sarah Kate in her wheelchair and Nathan with his extra chromosome and wondered how we do it? Did they think that their suffering was temporary, while ours was permanent? In their eyes, on the other side of the victory over cancer, do they perceive that their children were less deserving than our child to be in that room with Mickey Mouse?
The truth is, all suffering is relative.
For a long time, I used the old standby of telling myself “there are worse things than what I’m going through” to get me through rough times. It’s always true – someone always has it worse (and better) than each of us – so it seems like a reasonable way to pull oneself up by one’s bootstraps, and when I’m wallowing in self-pity it can be a good kick in the pants.
But what if the hard thing is REALLY hard?
Sarah Kate’s surgery year WAS really hard. She suffered through a tremendous amount of pain, was isolated from her friends, was unable to do the things she loved to do, was frustrated and tired, and I had to witness and participate in all of it. Knowing that there were other families and other kids out in the world somewhere with more difficult struggles or more pain or more frustration didn’t make our situation any easier, because the pain and frustration and struggle was still there. When things were really hard, trying to deflect my own pain by forcing myself to think about other people’s suffering not only didn’t help, but it made things worse, because then I felt guilty, too – guilty that my pain wasn’t worthy of acknowledgement.
It’s never a good idea to wallow in our pain; self-pity can be poisonous to our souls. But one thing I’ve had to learn – and keep having to remind myself – is that it’s okay to acknowledge our pain, to experience it so that we can move on from it. When something sucks, it sucks, and it’s okay to admit it, even if just to ourselves.
There is always someone who has it worse but when you are in the thick of the pain, the fear, and the isolation it does feel like the worst. Because it is the worst you personally have ever been through. I had surgery in the fall and it was the biggest one I had ever had but it would probably be considered minor on the scale of things. How is Sarah Kate doing now?
Andi, you always speak from your heart. It always seems to be exactly what is in my heart, too! You’re definitely Bringing the Sunshine to me and to so many others. You can’t even begin to know how many times you’ve been used of God to lift my heart.
Sometimes the easiest response is to cave to sorrow and hardship. Truly, to stand up and go forward, when you really want to run away, feels lonely and difficult.
You bring a gentle breeze of clarity to me.
I know I’ve said it in the past, but I still mean it. You are a treasure. Thank you, so much!!
My favorite of all the blogs you have written, so far. I have loved all of them, but this one speaks to me. Comparing our sorrows is unavoidable. And, to be in that position, and develop such wisdom, is a gift.
I also like what you say about not wallowing, but allowing oneself to admit that something hurts, that it is painful, so we can move forward. I really like that, because its something that took me a very long time to learn how to do.
Thats for sharing.
I know that feeling all to well. Giftedness comes with an ugly curse, especially when it is coupled with another neurodivergence. I hate being dismissed as a malingerer when I’m just trying not to go home with a raging headache.
Andi, I know this is difficult. I was so happy Sarah Kate got to go on the cruise with you folks. She needed some time to just be a pre-teen young lady, and put surgery struggles, and heavy PT behind her. And just be a pre-teen. Her road was not easy, she had to work it hard, and push herself way hard. Her efforts are not lightweight, even if she’s not dealing with life threatening issues of her own. Sometimes young folks need to be young folks, and routine be pushed aside a while. As she sacrificed a lot to get better. Just some thoughts of mine. This means she can get some emotional space. And focus on her future and what she needs to do to function best. Call this good. I try to mix pleasure and poking and prodding and intensive rehab. I need some perspective even at 52. As I need reward to couple with the grunt work. And to keep motivated. As it is too easy to let go. Be mindful of this. She’s got so much normal preteens and teens don’t have to do or think about. Every movement I do, is not automatic, requires careful thought, and logistics, as it is only part of my day. My legs are jello, a day with two remote broadcasts, two counties, one day, and wheelchair man in the street interviews, remote recording sounds of the 4th celebration, and music and food, and heat. Then mom and dad visited and a lot of activity. so, two or three days of rest to recover, to stretch, to get focused on a studio renovation not finished, and to let bodies recover and loosen up. And to gain perspective, to manage life and professional responsibility, to get wheelchair back to health (caster fork issues) and let life live and roll on. And in my case, to let Kent be Kent and be what Kent can do. As SK said, “Set your pace, Finish Strong”
Everybody has something hard. Life is hard. Illness is difficult. I have friends who have very challenging teens, mentally ill parents, children with cancer, dads with cancer, dad and son with different cancers and parents with dementia. Long ago a friend stated she had never been through anything really bad, like death or illness. A few years later, she had 3 very late miscarriages, where she had to deliver deceased babies and bury them. I think we need to be kind to each other and respect each others difficulties. Challenges can’t be compared on scales of pain and difficulties.
We had a child with a brain tumor. We went on a Make a Wish trip to DisneyWorld, with our daughter who had completed radiation treatment and didn’t look ill, except for a limp and right side weakness. At that point, we had full confidence that she was cured. 99% of people at Disney were kind and wonderful. The one unkind person was a grandmother of another child, who berated my husband and insulted my daughter because Mickey saw the Make A Wish button and stopped to see my child, not that lady”s grandchild. I felt sorry for that lady, because it’s sad that she had darkness in her soul in the happiest place on earth.
After our daughter passed away, I spent time with a friend who lost her daughter to a sudden illness, finding her 5 year old deceased in her bed. She thought our loss was worse because we saw it coming and I thought it was worse that she lost her daughter suddenly. Perception. We helped each other through grief.
Andi, you have a special way with words! Thanks for sharing your thoughts. I miss you, friend!!