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Letters

Dear Cancer Mama

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Mar 19, 2014 –
This is a letter I just got from a fellow Cancer Mama! WONDERFUL! Thank you Pam! (I got her permission to publish this)

Dear Cancer Mama,

It’s 4am. I’m up changing a feed bag, checking temp and of couse, worrying about my sweet little boy. Like your son, he is fighting Rhabdomyosarcoma but his is on his upper arm. Like you, he is 2 years old. Like you, I’m just barely hanging on. Like you, I’m surfing the internet at 4am. Like you, hey! I AM LIKE YOU!

As I’m sitting here, reading your words, it feels like you are right here with me, sitting on the couch chatting. I’m laughing as your mother rips out Griffin’s Feeding Tubey playing tigers. I’m crying with you as Austin passes away. I’m praying with you to find a cure.

Thank you for sharing your experiences on your blog. Thank you for being brave enough to share not only your experiences, but your thoughts, opinions and feelings. It gives me hope. It gives me hope that like you, we can survive this. Like you, we can come out the other side better people. Like you, I want to help others. You have inspired me to look up my local Cancer Society and volunteer. I’ve decided that no matter how our “cancer journey” (as you call it) turns out, I will make the best of it, look for the silver lining, and not let cancer win.

Thank you for giving me hope,

~Pam, fellow Cancer Mama from Maine

Letters

Hi Emily!

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Mar 19, 2014

This is a letter I got from another Cancer Mama, from England! (I asked her permission before sharing this note) Thanks Amanda!

Hi Emily!

Don’t ask me how I came across your blog, totally by accident yet totally wonderful! I am absolutely amazed at your ability to explain a cancer experience with total grace and humour at the same time. It is just smashing to find a similar situation to ours, even all the way across the pond!

Our daughter Emily (!) has Rhabdo which has grown in her lower jaw, she is six and a mighty trooper as we are nearing the end of her battle and will soon cross into the land of remission! Thanks to your blog I kind of have an idea of what to expect and not be surprised if my feelings/mood changes, etc. Why doesn’t the hospital tell us such things?!?!

We are wishing you and your family all the very best.

Cheers!

Amanda

Letters

A WOW Letter-This is WHY I do what I do!!!

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Mar 27, 2014
I got this letter today, and I spent the rest of the day all sniffy and emotional. When you start a blog, you never realize how many people it will touch and in how many ways. I was WOWed when this Mama took my quotes and stuck them together…how powerful! Its very rare that I am speechless. This was one of those times. I rarely look back at what I write. Thank you for putting it all together for me. WOW And I thank you too! XOX*******************************************************************************

Dear Emily, I am also a “Cancer Mama” as you call them. What a shitty club to be part of. And I’m a hoarder of information. I spend my sleepless nights trolling the internet for bits of information I can write in my book. It can be anything from inspiration quotes to cancer facts to germ fighting recipes. And then one night, I followed your pin to your blog. It was a life changing moment reading your posts, shifting through your story, following your adventures. I laughed with you, I cried with you, then I laughed again. But most importantly I took the good bits. I started scribbling them down, then I moved on to cutting and pasting, stealing good tidbits of info. I ended up sharing your blog with everyone I know, including all the “Cancer Mamas” here and now have bookmarked your blog. I check it everyday, hoping for a new post, wondering what you will come up with next. And as usual, I’m surprised every time. Congrats on building an amazing go-to place for Cancer families. Thank you for opening your heart and sharing your soul. You are doing an amazing job. I wanted to share with you what connected with me the most. Here are the quotes I “stole”:

Ahem, Attention, Attention please. I, Mama Emma will now share my secrets as to how to “deal” with Cancer…Um, yeah, I have no idea.

Then cancer hits us and rocks my little boat. I’m suddenly clutching the sides and trying not to be thrown overboard.

Welcome to the wonderful world of Children’s Hospitals filled with sick children. Please wash your hands.

And the sad part? I didn’t spend my money on booze or drugs or tattoos or vacations or fast cars. I spent my money on Cancer. Fucking cancer. What a complete waste of money. A waste of my money and my time and my health and my sanity. Fuck Cancer…

Dear Cancer, Because of you, our family grew stronger as you grew weaker. Because of you we have gained the friendship and kinship of other cancer families that I consider as close as family. Because of you, I don’t take anything for granted. Because of you, I wake up each morning thankful for the day I had yesterday with my child and looking forward to the day I will have today. Because of you I will never be the girl, daughter, wife, mother that i was before. There is no “going back to normal”, there is a new normal now. Its stronger, bigger and badder than Cancer.

I’ve put my whole life on hold to dance with Cancer.

Yes, I said a “family with Cancer”, because really, when one member has Cancer, it affects the family unit as a whole. One member suffers, all the members suffer. We work as a group, as a team, with one goal. KICKING CANCER’S BUTT!

Hold their hand through the most terrible, stressful, awful time of their lives. Their baby is sick, their marriage is rocky, their finances are in the ditch.

Another issue would be the tube itself, being there. Your child will get stared at, babies will try to yank at it, children will ask about it. Some cancer parents would get upset. But just like any other medical disability, instead of getting insulted, or awkward, turn the situation into a learning experience.

And they were wrestling on the camp cot, you know, like tigers do, and “somehow” Griffin’s feeding tube got pulled out. Off to the camp medical office we go. We decide that we are not going to put it back in, Griffin will have to struggle through the last couple of days of camp without it. Fast forward a couple of hours, we are back in the medical office, now his leg needle has “somehow” came out as well. With our heads hung low, we have to explain that a “tiger did it”. Griffin thought this was WAY too funny and giggled himself silly as we had to explain the story to the camp medical staff, the camp director, and also the nurses and doctors as we had to attend the hospital to get everything put back in!!! hahaha LOVE IT! Tiger wrestles is the best kind of wrestling! teehee!

Of course, it could be me! I like to think that I have not changed, but that would be a lie. I HAVE changed! (I hope for the better!) I’ve lost my innocence for sure. I’ve faced my child’s mortality and of course pondered my own. I’ve buried chemo buddies, I’ve watched children waste away to nothing. I’ve watched cancer rip families apart, tear apart marriages and drain every cent a family has. I’ve watched child take medicine that poisons thier bodies to the point of death, meds that take thier hair, sight, hearing, mobility, and watched thier parents give it to them. I’ve put on a lead bib as my baby gets radiated, over and over and over again. I’m not the same person. I’ve seen the dark side of life. But because I’ve seen the dark side, I hang on tight the bright!

I’m here, my heart hurting for my fellow Cancer Mama. I’m here to represent all us Mamas out there. I’m here to respect and say good bye to the littlest cancer warrior I’ve ever met. I’m here, I’m present and I always will be.

I hope we can blaze a trail of friendship and understanding for new cancer families coming in behind us! Do not be afraid to love your fellow cancer kids and supporters! You will be thankful that you did! Thank you fellow Cancer Parents for opening your hearts to me, to us.  Thank you for putting your heart on the line and your heart on your sleeve. I understand the risk you take opening your soul to others. I understand and I’m thankful.

Once your life is ripped for you and you work HARD to but the pieces back together, you savour every moment you’ve got left.

Put altogether we get these amazing “words of wisdom” which I recently read at a cancer support group. Again, everyone laughed, everyone cried, and everyone laughed again.

Thank you from the deepest depths of my soul. Thank you for letting me out, for giving me permission to enjoy the blessings as well as the ugliness of cancer. Thank you for opening my eyes and letting me see the light as you see it. I look forward to your next post! (no pressure or anything! Hahaha)

Your fellow Cancer Mama from BC

My Thoughts as a Cancer Mama

For no reason, and for many reasons all at once.

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“As I was driving in today, I felt like I was on the edge of tears.  For no reason, and for many reasons all at once.”

~Linda Wilson, Cancer Widow, and Friend

 

Our little cancer buddy just found out that 80% of his bone marrow is cancer…

 And my printer would not work today. I balled my eyes out over the printer. I don’t think it was really about the printer? And I forgot my shaker cup at home so I can’t have my diabetic shake for lunch, so I know I will feel like crap later so I’m pre anticipating the crap. And I bit my tongue now it hurts every time I answer the phone.

 And a co-worker asked what was wrong so I told her about our little cancer buddy and she proceeded to tell me about some relative she knows that died of bone cancer as a 35 year old. (not the same…at all) And how each death is meant as a lesson (A lesson from who? And I HATE these lessons and what the fuck am I going to learn from a little innocent boy’s death?!?!) And she blabbled on and on and finally I just got up and walked away. I need to protect my heart.

 Cancer is ripping this little boy away from us and tearing a family apart and ruining my heart. What kind of “lesson” is that?!? And its certainly not his FUCKING TIME TO GO!!! Don’t tell me a child is “meant to go” no mother should bury her child. Ever. Period. Or a husband. Double periods and an exclamation point.

***********************************************************************

I would like to send a little thank you to my friend Linda. I’m not going to hide her name anymore. She deserves her real name today. Thank you for listening and hearing me. (not the same things) Thank you for sharing and understanding. Thank you for being wise and sharing your knowledge of life and everything that goes with it. Thank you for having the courage to get out of bed each morning and face the day.

Thank you for being honest with me.

Thank you for the cold leftover toast…it’s an English thing…lol

XOX

 

 

My Thoughts as a Cancer Mama

Support Groups…I don’t like that Phrase…

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Support Groups.

Those words make me think of alcoholics drinking crappy coffee in a moldy church basement, forced to be there by the court. This picture in my head was put there through various media influences, not based on real life at all.  Is this picture true? Maybe…but not our Support Group!

When Griffin was going through treatment, I asked my social worker if there was a support group for parents like us. I was basically laughed at. “Nobody wants that” and “why would you want to hang around other depressed people?” were the responses I got. I felt like an idiot and very very very alone.

Luckily, Griffin happened to get sick at the same time as some wonderful other kids whose mums are absolutely fabulous! These warrior women have held a household together, kept their marriages alive AND kicked Cancer’s butt all while supporting me in my greatest time of need. I’m not at all surprised that this Cancer Mamas got together and started their OWN support group with zero help from the hospital.

And the PARENTS OF CHILDREN WITH CANCER-HAMILTON was born! These amazing parents meet up once a month at the local Ronald McDonald House which has lovingly opened their doors and supply warm baked cookies. We meet in the library of the RMH, a comfy cozy place with big relaxing chairs and soft couches to melt into. You cannot help but to breathe a sigh of relief when you step in there. These Mums and Dads come together, no matter if their children are still fighting, in remission or bereaved, they have found a safe place to speak, to tell their story, share their worries and make friends. We cry together but we also laugh together, a lot. We have battled the same disease together and watched our children grow up along side each other. I DEPEND on these people to get through my daily life! From sharing a funny story of how a feeding pump went awry in the middle of the night to a 3 am shout out for help over facebook. These people keep my head about the water and breathe the sweet sigh of relief into my soul. I know I am safe here. I can speak my truth, without sugar coating it to not hurt someone’s feelings or depress yet another person wanting an update. It is a safe place to fall and a protected place to grow. These parents are all knowing, they have wisdom beyond their years in all things, not just cancer! From parenting advice, to recipes that kids will actually eat to temper tantrum tactics to potty training know how. These are people that can help you with anything. I wish I could tell you about the wonderful stories shared, so inspiring and some are heartbreaking, but all are very important. They have forced me to DEAL with Griffin’s illness, treatment and recovery and also other feelings that pop up along the way like survivor’s guilt or serious anxiety over scans. (aka scanxiety) It is easy to push all these feeling down and not deal with them. But the boiling pot of feelings is going to boil over and attack when you least expect it! I’m so glad and blessed that I found a group that is so amazing!!! (PS, I can’t share any stories that have been shared in our group because A) they are not mine and B) We have an understanding of confidentiality that I would not want to break)

So what am I trying to get at? Support Groups are not just for Druggies and alcoholics. They can be a powerful healing tool for you when your child is fighting cancer. Is it for everybody? Heck no! But if you need someone to talk too, reach out. Ask your clinic if there is such a thing in your area. And even if there is not, there are great groups on the internet that are wonderful as well.

The major message? You are NOT alone.

Hug your babies tight tonight folks…

My Thoughts as a Cancer Mama

Nobody Told Me Life AFTER Cancer would be so Hard!

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My son’s last day of chemo was a Sunday. I watched as the very last drop of poison dripped into my baby’s IV line, and then we were officially discharged from our very last hospital stay. He got out of bed, put on his batman cape and walked out of the Cancer ward. Some of the nurses clapped and kids cheered, others just looked and smiled. My little bald 2 year old stopped and turned to wave like he was the King of England. The nurses cried and there were hugs all around. I had a goofy smile on my face…but it wasn’t real.

I was more scared than ever. For 48 weeks, I had dreamed of this day, the day that my son’s chemotherapy would be done. It was my light at the end of my cancer horror tunnel. I had dreamed of this day ever since Griffin was diagnosed with Rhabdomyosarcoma behind his eye when he was 22 months old. We survived 48 weeks of chemo, 25 radiation treatments directly to his face, 11 blood transfusions, neuropathy (so bad that he still has trouble walking)  and had no use of his thumbs and fingers. He had mass amounts of pokes, prods, xrays, blood draws, etc. I cuddled him as his hair slowly fell out. I rubbed his back as he would sleep through the pain. Even though I did not have cancer myself, this Cancer fight was just as much mine as it was my son’s.And now it was here. The end of our Cancer fight! So why was I so terrified?

I felt lost. I felt abandoned, I felt alone.

When you start your treatments, your cancer team gives you a piece of paper with your timelines. Everyone is different but most people have a basic idea when and how long treatments are going to be, when your MRIs and CT scans are, when radiation is scheduled, etc. You are on a strict schedule of clinic visits and then in-patient time. Your day is filled with medication schedules, feeding pump schedules, outpatient therapy schedules. But once you hear that word, “remission,” you are suddenly dropped like a hot potato.

We went from clinic visits at least twice a week (sometimes three) plus once a month, a full week of treatment admitted to the hospital ward. You had access to all your doctors, to child life, to physio, OT, dietitians, plus nurses to answer all questions. Yesterday you were a cancer patient, a team of 6 doctors at your beck and call. And today? You are told to transition back under your family doctor’s care. WHAT? My family doctor had no clue about the meds my kid is on or the effects it has on him. How long do all these meds stay in his system? How long do we live like hermits, avoiding germs and germy people? When can my life go back to normal? What if he gets a cough? How long do we keep his port in? Why do I feel like I’ve been abandoned? There is no schedule for my life now! What do I do? I was the only one in charge of his care now. If he gets sick, it’s on me, I make the decisions. I did not like this at all.

I could not believe how high my stress and anxiety got at this point.

I was warrior mama up until then, beating cancer down with my bare hands. And then I just became a pile of mush. I think I finally let myself FEEL everything I had been bottling up over the past year. Now that my son was cancer free, there was time for me to deal, to feel, to cry. I was processing the fact that my baby could have died. I never really let myself think about that fact before. I had to suppress that fact just to get through the day. Now I have to deal with the fact that my boy with never be the same — he has scars that will be with him his entire life. And I have to deal with the fact that I will never be the same either. I have seen the dark side of cancer.

It was at this low point when I had to choose if I wanted to keep fighting or let cancer take over my life.

I chose not to be a victim anymore.

I was going to control my journey and take my life back. That is when I started these “Cancer Mama” blogs. At first it was just a place to vent, a place to barf all my feelings down in print. (That is why there is no editing) It helps me to share my experiences. I hope it helps others to read that they are not alone.

Nobody told me how hard ENDING cancer treatment would be. No one talks about the feelings AFTER remission. I expected that once October came around, I would get out of my PJs, put on my dress clothes and head back to work with a smile on my face and a spring in my step. I didn’t go back to work until the following April. I spent a lot of time at my therapist’s office (THANK YOU AMY!) who was able to hear my woes and turn them into healthy living and healing. It’s easy to stay in a funk —the cancer cloud can hang onto you, and over you, forever. But don’t let it win Mamas! Climb that mountain and don’t be a victim anymore – it’s not easy, but you aren’t alone.

My Thoughts as a Cancer Mama

And then Today Happens…

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You think you are going along ok…you think you have everything under control, you think today is just another day in the life of a cancer mama. Then a series of events happens, to where I’m sitting in a stall in the bathroom at work trying to cry silently so no one will hear me. The more you try to cry quietly, the louder it gets. FYI lolA very dear friend a work lost her husband to cancer a number of years ago. She still wears her wedding band and talks about him like it was yesterday. We have very different views on cancer. She looks at it like a curse, like the black spot of death had attacked her family and took her husband. And she is right of course. I just SEE it differently, yes, cancer sucks, but its also brought my family together, my bond with my son, hubby and family is stronger than ever! I guess maybe, if our path was different, maybe I would have a different outlook as well?

But lately, she has been very hard on herself, I can see that she is struggling in her daily life. I can see that she is struggling to see the good. Time is not going to heal this woman’s wounds. Neither is a good cuppa tea (as my Nanny would say) This woman needs more than I can give her and I just don’t know what it is. Everyday I sit beside her and I see her shrinking, slowly slipping away, looking more and more sad and older. The stress of cancer has taken its toll on this beautiful woman. She wears her battle scars across her face. I see the pain, the heartache and the loss. I weep for her, I weep for all the mothers, wives, sisters, and aunts would have lost a loved one, its not fair. It will never be fair. This woman will never be the same, her heart will never be healed, but I hope one day she will find the strength deep down inside and start to pick up the pieces of her broken heart. Its a painful process. You spend all that time, building a wall up, to protect yourself from the pain, but its really just a numbing effect. You are not really healing if you don’t. You just build up a scab that is harder and more painful to rip off when you are ready to deal with it. Yes, it hurts, yes its not easy but in the long run, its better for you!!!

I wish I had a secret formula to fix people like this. The broken hearted. Cancer victims that were never sick but will never recover from thier dance with cancer. I wish I could wave my magic wand and *poof* she is happy again, she smiles without it looking painful. Her smile would reach her eyes and her soul. Now her smile is just a mask to get her through her day.

Days like this hurt my heart, like an actual painful throb that I can feel. I mourn for my friend that is hurting and there is nothing I can do. I mourn for our innocence that is lost. I mourn for her happiness that looks so very far away. I hate that she never learned anything from her husband’s cancer fight, like how strong she is, or what an amazing mother and wife she is. She only sees the negative. She didn’t bond with other cancer wives or families, she doesn’t participate in the amazing walks and fundraisers that bring like minded cancer fighters together…

Keep Calm and Remember.All I can do is listen as she shares her stories, her worries and her troubles. I have nothing to help, this is a fight she has to do herself. But I can be here for her as she battles, its just up to her to WANT to do it!!!

Sigh…some days like this I wish I was a Wonder Woman, able to take everyone’s troubles and fix. Oh hum, I’m just a regular wife, mother and Cancer fighter that works a full time job and writes this very odd blog while sitting in the stall in her work washroom. Odd, i know, but it works! heheheehe

My Thoughts as a Cancer Mama

Holidays-It’s the little things

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appreciateI’ve never been really huge into the whole holiday thing. I love getting together with family and friends and the feasts are always wonderful, but other than that, holidays could come a go and I really wouldn’t care.

Then cancer hit, rocked my world, now I count my blessings each holiday we have with our little boy. We came so close to losing him, I can’t help to cry each holiday dinner we sit down as a family and raise our glasses to other year.

Easter/Ostara just passed, we didn’t do much of anything special, we got together with my parents a couple of times over the weekend for dinners. But Marty, Griffin and I had a relatively “lazy” weekend at home. We washed all the cars and trucks and cleaned them out (There is that lost mitten! Ooo, that french fry looks several months old!) Griffin was all into helping us, he even vaccuumed out the back seat! This time last year, he couldn’t climb into the car, his fingers were not strong enough to hold a pencil, nevermind the vaccuumm hose…so many big changes in his life! With a lot of hard work, so many things are going back to normal!

I’m beginning to relax a little, letting myself ENJOY these moments we do have. We are so very lucky that our dance with cancer was short n sweet. I intend to never dance that dance again!!!

So a very Happy Easter/Ostara/Spring to everyone!

Cheers!

My Thoughts as a Cancer Mama

Pondering, Rainy Day Doom

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The snow has finally melted here in Ontario Canada, its been a very long winter for us. Today its a rainy day, lots of grey clouds, fog and rain. A cool wind whips your hair around your face as you dash to your car, avoiding puddles in the empty parking lot. I sit in my car enjoying the thunderous spattering noise of rain hitting the roof and windsheild. It’s a calming sound for me, it clears my head. It’s been a very busy couple of weeks for me. I organized our local Daffodil campaign for the Canadian Cancer Society, then I worked a lot of shifts, on top of my full time job. I’m physically and mentally exhausted. It’s not just selling a few pins. It’s standing on your feet for hours, smiling, but you also hear story after story of how cancer has affected people’s lives. My heart reaches out to each and every person that shares their story. Lots of hugs are exchanged, whispers of good luck, as they hustle along doing thier errends. Some are survivors, some lost a loved one, some are still fighting and then others are angry. They think that a cure as been found but drug companies are keeping the secret to make more money. I have trouble shaking the lasting effects of these people. It must be so hard living a life filled with so much negativity and hate. And then to feel the need to spread your negativity to an innocent volunteer who has nothing to do with drug companies? sigh…I take a deep breath, breathing in the glorious spring air and the smell of rain. It’s wonderful. I feel my body relaxing and my mind starts to wander. I remember sitting in this car, in the parking lot of Ronald McDonald House when Griffin was at his sickest. I remember the rain and the gloom and sitting there balling my eyes out. I retreated to my car to cry by myself. I remember thinking I couldn’t do this anymore. I remember questioning why me? Why my child? Why my little family? I remember wishing that I could take Griffin’s cancer, I would sacrifice my own life for his in a heartbeat. Why my only little baby? Why cancer? Why so much sickness and pain? I sat in that car for a very long time, hoping the rain would wash me away with it…

Fast forward 2 years and look at us now? I’m still tired and exhausted but for different reasons (thank gawd) I made it through to the other side. The doom and gloom only lasts for a little while, then it passes by, leaving everything washed clean and fresh.

As horrid as your cancer journey seems at the moment, just know, this too will pass. Your journey will continue to march forward. Some of you may lose your child, some may have complications that they have to live with the the rest of thier lives, but we move on, we survive, we conquer.

I sit back in my car seat and smile. No gloomy day can keep me down. I no longer cry in the rain. I now smile and jump in the puddles.

Don’t let the dark cloud consume you ladies, look for the silver lining, if there isn’t one? The cloud will move on, taking with it the cold and the rain and the wind, rainbows will follow, from heaven or from earth, our children are our blessings!

Loss

Let us Talk about Loss

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© Joseph Cortes
Early Walk © Joseph Cortes

When it comes to Cancer Kids, we must talk about the loss we all feel when we lose one. It hurts the whole community. I can only talk from an outsider’s point of view. Our son Griffin is still with us, but we have gone to a lot of funerals of his Cancer Buddies over the years. Yes, they are not my children, but it still hurts, almost like they ARE my kids. And I have a loss of innocence. I have survivors guilt. Why did my child live and theirs did not??? So I share with you my thoughts on child death:

Words of Advice From a Cancer Mama

When speaking to a recently grieved parent, please do not say things like, “It was his time”. We are talking about a child here. This was not his time. No parent should have to bury a child. A child that dies? Its not his time. Cancer stole his time…

Other things to avoid? Talk like, “God has a plan” or “God only gives you as much as you can handle”. When a parent loses a child, its a very trying time for them and they could be questioning their faith. Phrases like these do not help. I would HATE any God that did that too me, no matter the religion.

I know you are trying to relate, but please refrain from comparing a parent’s loss of a child to a dog or a Grandma. They are not the same. And it can hurt, a lot if you think that they are. This loss is a hole, their child has been ripped from them after a long hard journey. Be their safe place to fall, be a shoulder to cry on, be the supportive hand to hold. Do not be the jerk who thought that Fluffy’s passing was the same as a child. It can be insulting and hurtful.

Please DO ask if the parent would like to hear a story about your favourite moment with their child. (Some parents will not want to hear anything, others will love it, so its always best to ask) Tell a funny or touching story, how you will be remembering their child. Or tell them a story about what reminds you of their kid. Maybe every time you see a penny on the ground, or a cloud shaped like a dog, the colour lime green or whatever. It lets that parent know that you a are thinking of their child all the time and that they are still alive in your heart.

Do dedicate something for the family. A bench or tree in your favourite park, a song on the radio, anything to touch their hearts. I love to see people walking/raising money in honour of these little ones we have lost. The more money we can raise, the closer we will get to a cure. Let the family know what you are doing to honour their family.

Do listen to the parents. See what wording they are comfortable using when they are talking about their child. Some people do not like the word “loss”. To quote a Cancer Mama, “I did not ‘lose’ my child, I know exactly where he is! Right were cancer left him!” Some don’t like to refer to them as angels or their fight as a battle and they “lost” the fight. They tried their very hardest, saying they lost their fight makes them sound like losers! Some families refer to them in the present tense, others start talking in the past tense right away. So I would recommend listening closely to how the family is referring to the child and follow their lead. Every family is different, it can be very tricky but its worth it!

Sometimes there are no words…

Let that sink in for a minute.  No words. You being there, present, is words enough.  Sometimes silence is worth a thousand meaningless conversations.

Don’t be afraid to smile and even laugh. Yes, this is a horrid time. But its like a roller coaster, their world is crashing in around them, and then someone reminds you of a hilarious story about your cancer kid, you can’t help but to laugh right along.

Please don’t be silent, be vacant or disappear. They are still your friend or family. Don’t be afraid to reach out. Please call, take them for a walk, dip your feet in the sand together, connect, please cook food, please hold a hand or give a hug. Everyone needs a hug sometimes…

Please hug your babies tight tonight, even if they are just in your hearts.

XOX

Many thanks to the Cancer Mamas that helped me out on this one. I talked to some of you directly, and then some were just experience. But thank you for sharing your baby with me, even for just a little while. They will live forever in my heart…

A very special RIP to Kerry’s child (name withheld), Rowan, Austin, Matteo, Alivia and Kelsey.