I’m not here to convert you. You don’t have to believe in God or Jesus or the Spaghetti Monster or anything. I just want to relate to you an important message I was given when I needed it.
I am Catholic, though I’m more cafeteria Catholic than anything. I’m happy in my faith, and I’m happy for the people around me to be happy in their faith, regardless of what that faith may be. I’m not going to preach to save someone’s soul. I don’t think God brought me here to change people’s minds about Him or religion through words. I firmly believe that, if I’m going to change someone’s belief in something greater than us, it’ll be through my actions, not my words. So I try (key word here… “try”… and I fail… often) to be a good person.
I say all this to preface the rest of this story. I am not here to convert you. I just want to give parents out there a gift I was given. So here’s my background story leading to my motivational speech…. cause this is how I roll.
Back when Sophie was still in the early stages of her diagnosis, we went through a holiday season. She was diagnosed with Multisystem Langerhans Cell Histiocytosis (LCH) in her liver, spleen, GI tract and pituitary gland the day before Thanksgiving in 2008. Happy turkey day, right? The curse words heard that holiday should be immortalized in stone, ’cause I was getting creative.
A little background on the background: LCH is a type of rare cancer that causes white blood cells called histiocytes to clump together in whirled patterns, forming tumors that then erode away, leaving lesions or holes in the organs in which the cancer is located. It’s most often found in skin and bone, and sometimes if that’s where it’s involved it can be treated with a chemotherapy protocol called LCH III, which is 6 or 8 weeks of a certain combination of chemo and drugs.
They started Sophie on the LCH III protocol on December 2, 2008. We went in for her chemo and lab work and all that fun every week for three weeks. We’d get her labs run and then wait for them to see if she could take the chemo, and then sit int he infusion room while the chemo was infused, catching puke and trying to keep her calm.
If the chemo was going to work, they expected to see some improvements in her labs and scans by three to four weeks. On December 22, we went in for her chemo and labs and they ran a scan, and they didn’t see any improvement. Which meant that she had what’s called “refractory” or “recurrent” multisystem LCH.
At the time, there was little research into what to do to treat Sophie’s particular brand of LCH, but what there was regarding refractory LCH wasn’t good. They really didn’t know what to do. There was no set protocol on how to treat it. Looking for a chemo that would work was kinda like finding a needle in the haystack.
We sat in an examination room while an oncologist that wasn’t normally her oncologist came to talk to us. She dropped the whole “refractory” nature of her cancer bomb on us, three days before Christmas, and then walked out, no questions answered, no explanation, just “it’s not working.” Not the warmest moment of my life, let me tell you. She was not on my Christmas card list.
What she DID say was that they considered the cancer’s failure to respond to the chemo to mean that she had a “poor prognosis.” I’d done my research by then. I knew the term “poor prognosis” put her in the percentage of LCH kiddos that wouldn’t beat it. It meant that she had a low chance of surviving. Something like 18% of all those with a poor prognosis survived in the only study I was able to find at the time.
Essentially, they were saying they didn’t think they could stop it before her liver went into full failure, but they were going to try. They scheduled us to move into the hospital in early January for two or three rounds of what they referred to as a “salvage protocol,” a chemo typically used for children with Acute Myeloid Leukemia. A chemo that would essentially kill her bone marrow for a few days each round to kill off the cancer. And they didn’t even know if this new, high dose combination of chemo would work.
I was distraught. Okay, so this is where I go into the story all moms and dads need to hear when times get hard.
What did I do? I went to mass. I don’t normally go to mass. The husband and I disagree on faith somewhat… long story, I’m not upset, I go when I need it. We went to Midnight Christmas Eve mass, Dan got a baby sitter and took me because I needed it. He gets me.
So I’m going to preface this with “I’m weird, but I’m not THIS weird; don’t judge me.” I heard God in that church that evening. Talking directly to me. I started to cry. In church. Surrounded by strangers. I heard the voice of God or Allah or Fate, or whatever you want to call him/her/it. And it gave me strength. It wasn’t some heavenly voice from the skies or anything silly like that. It was the priest, giving the story of the birth of Jesus, but from Mary’s point of view.
The story of Mary, a very very young woman (let’s be honest, she was a child at 14), who was pregnant and married and not pregnant by her husband or other worldly man for that matter. This is a basic tenet of my faith, please don’t go off on me for it. I don’t question your faith, grant me the same respect. She was the mother of God. Imagine that responsibility. I can’t even manage to not burn dinner, she had to raise God. And she had to raise this innocent little baby to adulthood so he could save the human race. No pressure, right?
How fearful she must have been. Scared and afraid, a refugee seeking a safe place to have this little life she was suddenly responsible for. How terrifying that must have been. How she questioned being able to do it. How she questioned whether she should be given this responsibility.
But the Priest pointed out that it was okay, because she was able to get through it. She was specifically chosen for this task. Not because she was stronger than anyone else. But because she would be able to find it within herself and within her love for her child to carry on. She could do it because, as a mother, she had it within her to do anything for her child. That simple. Parents come equipped to do it all, apparently.
She was supposed to be His mother. She was strong enough because she found it within her, within the love for her son, to be strong enough to get through everything.
All parents have these questions. As a mother or father, holding your child, you wonder if a wiser person should have been in your place. You wonder if you can do this. Even if you have a normal, healthy child. Being a parent is not easy. And having a sick child, or a special needs child, that just ups the ante. Can you do this? Can you handle the chemo and the medicines and the therapy and not being able to communicate effectively with your child or your child’s doctor? Can you do this with this amazing little life you have and get him or her to adulthood to be a happy and productive member of society? Can you get them to who they are meant to be without screwing it up?
Being the parent to a sick child or a child with special needs leaves you asking yourself this question at least every day, if not several times a day. I’ve actually asked OTHER PEOPLE if I really was strong enough to get Sophie through. Because I just didn’t know. My mother, my friends. “You think I can pull this off? You think I can get her out of this alive?” Most of the time they’d answer yes, but the alive question? That one was hard for some people to answer sometimes without pausing first. As if they didn’t know but wanted me to keep hope alive.
That night, on Christmas Eve, I heard what I needed from the man who stood in the shoes of God, speaking to His congregation.
Unless we have some serious issues going on like drugs or drinking or abuse, all us parents are pretty much all doing what we are supposed to and are where we have the children we are meant to have. That’s not to say that I left that place thinking I’d get Sophie through it alive. Because I knew the odds were against us. I was still scared out of my mind. I still had moments of questioning and fear and horror to follow. I just knew that I had the ability to get through this and do my best for her. I wrote it down, what I remembered from that sermon, and pulled it out to read as I needed it.
So I’m passing this on because of what I often hear from other parents when I talk about Sophie’s ordeal. It’s always, “I couldn’t do that. I’m not strong enough.” Yes…. yes you are. Whether you have a child that likes to color on the walls in permanent marker, or have a mother in law that meddles too much, or the house and life just aren’t perfect. Whether you work two jobs and have to struggle to get through life to provide anything for your children. You.Are.Strong.Enough. Why? Because you find it within yourself, for the love of your children, to BE strong enough and to endure. And whether you believe in God or not, you are where you are supposed to be. You have the children you are supposed to have, and you have got this.
So this holiday season, I know it’s super hard and you’re super stressed. But you’ve got this. You can find it within your love for your family to get through without throttling the lot of them. You don’t have to believe that you were chosen by God to be there, because you are where you are supposed to be, regardless of faith. You are a bad@$$ and you have it within yourself and the love for your family to get through this.
Just tuck your head down and keep plowing forward.
Finally, for those of you fighting what feels like an unending fight against odds that are stacked against you, for those of you with the stats just stacked so high against you, just remember something else I was told by an amazing nurse. 18% is just a number. It’s not a breathing, living child. Your child is not a number. He or she is a person with a path to take. And whether that path is to beat whatever statistics there are or not, he or she is NOT a statistic. They are so much more than that. So ignore the numbers. And keep pushing. You’ve got this, and so does your child.
Disclaimer: Despite all the aforementioned pep-talk, I am not responsible for any family throttling that may come from mothers or fathers who were not permitted a frickin’ nap during the holiday season. Naps are necessary to prevent said throttling.