Chemomom · Childhood Cancer · grief · liver disease · loss · pediatric cancer · support groups

Childhood Cancer/Pediatric Liver Disease Grief

Last day of the Childhood Cancer Awareness Month, and I find myself approaching a subject that I don’t really know how to articulate.  I want to make clear, that I haven’t experienced the loss of a child, and I will never be able to articulate that kind of pain (I hope, God, I hope), and I’m not trying to say I can.  But from the start of this process with Sophie’s cancer, I became very intimately aware of death and what it can do to those who survive.  You do lose something when your child is diagnosed with cancer or liver disease, or some equally deadly thing.  You grieve for what you thought her life would be like. You grieve for the loss of the normal toddler stuff she will never go through, and you grieve for what she lost, and you grieve for the hopes that die because you have to create new ones. It hurts and angers and saddens and frightens.  It’s grief.

And then as a spectator, you grieve for your friends that lose their babies.  The ones that can’t beat the cancer or the liver disease.   You grieve over the loss of feeling normal because of the ups and downs from seeing that a warrior lost his battle with histio on the same day that another one got a desperately needed liver.  Those days where funerals are held on the same day some other warrior gets to the ring the “no more chemo” bell.  It’s a roller coaster ride and it’s hard to hang on sometimes.

With the rarity of Histiocytosis and pediatric liver disease, finding a local support group and being able to fit time in to meet the people would be near impossible.  But I was blessed with both a Histio and a Pediatric Support Group online.  Online we can, and do, reach hundreds of people, giving out information for where we have been, what chemos do what, what might happen with portal hypertension.  My two support groups are incredible and have gotten me through some very hard times and have honestly helped with Sophie’s treatment in ways they will likely never fully know.  The plus of being in those two groups is the incredible people you meet (online) and the relationships you forge.  But there are times it’s hard to be in the groups when you watch the cancer win or the liver fail.

I find myself often in the evenings with my computer in my lap and tears on my cheeks.  For both the horrible losses, the warriors with the brilliant smiles, the bright blonde curls, the incredible blue eyes, and contagious giggles, the brave words.  And then for the rushes of relief when the word remission is in a post with a photo of a little girl in a pink tutu, the words “WE GOT THE CALL!” from a liver mom who held her little boy as he vomited blood not a month before.  I want to reach through the screen and hug these moms and cry with them, but I can’t, so I sit on my couch crying in front of my husband and children who think I’m nuts.  It’s such a crush of emotions.  And the weird thing is I’m sitting in front of a computer screen feeling these things.  I wonder if this is normal.  If I’m just weird.  If I should just stop it and get over it, but I got so much from the support groups when I needed them that I can’t just turn and walk away.  And if I’m not turned away, then I’m sucked in and the emotions roll over me like a tide.

Online support groups are no joke, people.   I had to take a hiatus a few years ago from the histio group because I got overwhelmed with all the children we lost.  We were just coming down from the crest of horror we had with Sophie’s vomiting blood and I just couldn’t feel the pain from the other children on top of my own anxiety.  It was too much.   I actually removed myself from the group for about a year until I got my feet back under me and stopped having panic attacks and started sleeping again.  PTSD is an evil thing, and it was making me it’s B**ch at that time.

I find myself unable to articulate how much agony I feel for my support group members sometimes.  We came close to losing Sophie a number of times.  That horror and fear never cost me my child, and while I can’t thank God enough for that miracle, but I still feel so horrible that I was so lucky.  Survivor’s guilt…. that’s what I’ve heard it called, and it sounds like a cop out sometimes.  Not for others.  But I shouldn’t think it’s about me cause it’s not about me.  But I’m so Catholic that my guilt has guilt. And my guilt causes more guilt. Cause guilt.  Welcome to the stupidity that is my head.  It’s not about my Sophie.   She’s made it.  She’s doing great! But as a parent, I can’t help but have that selfish thought.  And I’m sorry for it.

So I have some general tips on life that I wanted to share for those that haven’t been here in the hopes that it helps someone going through something horrible.  Some of these tips apply to everyone you meet every day.  Some of it is for people dealing with illnesses, and some of it for how to treat people who have lost someone they love (and please, if I am wrong on this, please feel free to correct me.  I am not speaking from personal experience on this, but from what I have seen with friends who have lost their loved ones).

For Parents of children who are fighting disease:

Talk to us!  Include us!  It’s okay to talk to the moms and dads about their babies.  If they have a sick baby or child, it’s okay to do more than just ask how the child is doing and then just sit there awkwardly staring at their shoes.  Their child is still a child.  Please talk to them about their child as if they are normal children, cause they are children and will go through many of the same things your child is going through, and talking about the normal can make a parent feel more grounded and make the parents feel like they are more accepted.  It’s a hard club to be in when your world is completely different than your friends’ worlds because of disease.  You feel very alone and very excluded from things like play dates and girl talk about diapers and bottles and daycares.  It hurts.  So please, include us.  Our babies are babies too.  They just have extra accessories and worries that we would like to be distracted from.

For Parents who have lost a child:

Talk about their babies.  Don’t get quiet when they mention their child.  They might want to talk about their children.  Just because their babies are gone to heaven (or whatever you believe), doesn’t mean they are gone for their families.  While the thought of their children being gone might make them feel sad for their loss, thinking about the beauty that child brought to their lives can bring a smile to their faces.  If you can share that light with them again, it could bring some of the happiness back that they lost when the light left.  Their child is still their child, so include them in the conversation when you talk about things with them.  One of my friends called her kids Thing 1 and Thing 2 before her daughter passed on.  Well Thing 1 is still Thing 1, even if she’s in heaven now.  Cause that’s her title, D**m it! And we need to understand that.  They don’t disappear from the love and family’s lives just because they aren’t physically there anymore.

It’s okay to not know what to say.  And you can say exactly that, that you don’t know what to say to help.  One of my favorite mothers on the histio group taught me this. I love this woman with all of my heart.  She lost her amazing little man to the horrible cancer that is histio.  And I didn’t know what to do or say.  She taught me that I can say that I don’t have the right words, but that I love her and I’m here.   Acknowledge her pain.  Acknowledge what she lost and talk about it with her if she wanted. Just extend that hand, even if you don’t have any clue what to do once they put their hand in yours.  Sometimes it’s just the gesture they need, and even if they need more, you can figure it out once you get their hand in yours.

Everyone handles grief differently.  Some of my friends have disappeared for a little while.  They needed to hide and find the ground under their feet again.  Some of my friends have needed to hear people talk about their kids and the wonder that their children brought around when they were alive.  I have learned to try to mold my actions to what my friend needs. Though I still need help in knowing what to say. So you can ask them.

Ask “What do you need from me?”  Show up uninvited and say “I’m here, put me to work.”  Or get them online on a PM and say “I’m here, tell me what you need me to say.”  Or call them and say “Go ahead and cry or scream or curse.  I’m used to being cursed at.” Take the action.  Do it.

For everyone (parents with sick children, or those who have lost a loved one…. OR generally everyone!)

When you get aggravated at someone out in public for whatever reason (they are blocking then aisle at the grocery store and are staring at the same can of green beans for 10 minutes, won’t make a decision, are driving too slow, pulled off the side of the road in the way, whatever….) please give them the benefit of the doubt.  There are a lot more of us out there that are dealing with the crappy hands we’ve been dealt than those of you out there that have it all together.  I might be standing in the grocery store trying to pick which green beans to buy and be unable to make a decision, not because I’m slow or stupid, but because I’m so overwhelmed with deciding whether to start chemo on my baby that I just can’t seem to make ANY decision and my brain is sludge.   I might be on the verge of tears.  I might be so numb that I’m unable to do something because I lost someone that means more than air to me and I just can’t function anymore.   Life sucks…  and it leaves you reeling, and you have to try to function while you are broken, and it’s HARD TO DO!!  So be kind to the people around you.  You never know what has hit them recently.

Want to know what NOT to say to any of these parents?  I’m sure there’s more to this list, and please add in the comments if I left them out and I’ll edit them in.  I’ve heard some of this.  I’ve seen some of this typed on FB.  But just try to not say it, especially to me if I haven’t had sleep.  I have a temper.  Some of these words would unleash whatever unholy demon I might be able to access.  And I was born in Louisiana… I can find a way to Voodoo up something terrifying.  yeah…

1. “It’s part of God’s plan.”  Honestly, no one wants to hear that it was God’s plan.  It wasn’t part of his plan.  You are just plain wrong and it’s just infuriating and should be a sin to even say to the mother who lost their child or who has to hold their child while chemo is pumping into them.  God would NEVER wish this kind of pain on a child.  God is not cruel enough to be the reason a mother has to bury their child.  Not MY God.  I don’t know what your God is doing, but shoot…. if that’s what he’s like, please keep your God outta my life.  He sounds mean and I don’t like mean people near my kids.
2.  “It’ll get better.”  I call bullshit.  If you have lost someone you love, that hole they left doesn’t close over time.  You can’t place something in the hole to fill it. You can’t fix it.  There is no better.  If you are facing cancer for your child, you have lost what you expected that child to be like.  You have lost those smiles and play-dates and all these wonderful visions that you have of your baby that you nurtured through the 9 months of pregnancy, and that can’t be filled in.  What DOES happen (and I’ve seen it only from the sideline for those who have lost their child, so if I’m wrong in this case, please correct me.  I’m having to write from my experience here.) is you figure out how to compartmentalize in order to be able to function.  You have no choice but to do that, but the pain you feel from the loss is still raw, it’s still there, and you learn to put it in a box and open that box when you are at home and can cry over it.
3.  “Time heals all wounds.”  Again, bullshit.  See #2 above.
4. “(your child or whoever you lost) wouldn’t want you to cry.”  Just DON’T SAY THIS!!  You are saying it because my tears are making you uncomfortable.  Loved ones in heaven understand my tears.  My child that is sick and being treated in front of me will understand my tears and will learn that it’s okay to feel and to cry and helps to get it out.  It is NOT okay to say this.
5. “I know how you feel. (followed by how you lost someone or you were sick or something).”  If you were never actually in my exact shoes, with a deathly ill child, NO, you didn’t.  And comparing my kid’s 4 years of cancer and liver disease to your child’s long term NOT DEADLY disease or something difficult you’ve gone through medically?  Nope…. not close.  The baby with cancer wins, hands down.  Not to say that you can’t commiserate on problems your child is having.  We would LOVE to have a normal parenting conversation about issues with kids.  But do NOT say “I know how you feel” unless you have nearly lost that baby.   And comparing your grandmother’s death to the death of someone’s child?  Nope…  I’ve lost my grandparents.  I KNOW that pain, but it’s NOTHING like I’ve witnessed from my friends that have lost their babies.  I can’t even fully fathom the pain of losing a child.  I know that from the sidelines it looked like watching someone have their heart ripped out of their chest and being left holding  in their arms and sobbing for the loss, not knowing how they will take the next breath because they can’t be alive without their heart and not knowing how to put it back in.  I hope to never know that pain, and I can never compare what I’ve gone through to it.  And unless you have BEEN THERE and had to bury your child, YOU CAN’T COMPARE ANYTHING TO IT.
6. “You’re still young.” Or God forbid, “You’ll have more children.”  My response to this is a reflexive curse word followed by a slap.   I shouldn’t have to explain this.  If you don’t get it, you need to get out of the gene pool.
7. “Be strong.”  Why?  Why should I be strong?  Its HARD to be strong and we should be allowed to break down, d**n it!  If it makes you uncomfortable, please leave the room.   Cause my grief isn’t done to make you uncomfortable, and trust me if I could avoid feeling these things, I WOULD, cause I’M UNCOMFORTABLE TOO, but it’s happening and I’m not sorry.

Cancer and pediatric liver disease are horrible horrible things.  They are cruel and evil and unfair and painful. And though I might be more sensitive to the pain because of where I’ve been with Sophie, the pain is universal for nearly all mothers watching and holding their children.  You could be there any moment.  Please, when you get angry or uncomfortable with someone for whatever reason.  Please just be nurturing and caring and don’t do or say something that could be potentially harmful to them (or if the person you are talking to has my temper) or to you.  ❤

And if you are going through any medical issue or have lost someone, PLEASE find a support group, online or in person.  It will change how you handle the hell you’ve been tossed into.

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