Tag Archives: Therapy

Coping, Tips for a Cancer Mama

To a newly Diagnosed Cancer Mama

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I Wear Gold 12 Little Hero CHILD CANCER Light T-Sh

So your baby has just been diagnosed with Cancer. Now what?

The Web

Calm down, take a deep breath, now breathe…and get off the internet…seriously. You will scare yourself silly with the horrors you can find on the web. I did.  If you must troll the interwebs, ask your Doctor for trusted sites and stick to sites like the Canadian Cancer Society or the official site for your type of cancer. (Sarcoma Foundation, etc) You cannot trust everything you read on the net and most importantly, you can easily mix up actual fact that your doctors give you with the crap you read on the web. Stick to the internet for things like fundraising or support but leave the info and investigating to the professionals!

Get Organized

Start a binder/notebook/journal. Something to keep track of your child’s day to day. I had a binder that had different sections. The first was a business card plastic holder thingy that I kept all the businesses cards of all the doctors we saw, as well as any other business cards that were important (social worker, travelling nurse, and even the serial number of his port that they implanted!) It was a great go-too in a pinch because I can NEVER remember a Doctors name when put on the spot! LOL Second was  a calendar, on that went all his appointments. Yes, I had one on my phone, but this was the master list. Everyone referred to this and it was all knowing. Next was a chart of his meds. At one point he was on 24 different meds, all at different times, different doses and some were before a meal, some with food, some after. Just thinking about it gave me hives. Once I was able to make a no fail chart, it was actually so easy! We had a little tray that I would line up all the syringes, in order for the day. It actually worked quite well! I even numbered the chart and then wrote the corresponding number on the top of the medicine bottle to help me even further! (some of the meds had kinda the same name so it was hard to tell the difference or the generic name was on the bottle but the brand name was on my chart-non helpful! LOL) Next came all the results. I had all the paper work from scan results, as well as lab results. Whenever we met with someone, I would ask for the readout. I can’t tell you how useful this was! You could actually spot trends in his blood work! AMAZING! And lastly, misc stuffs like camp info, disability papers, etc. Carting around all this info is heavy but it is sooo useful! Now, I mentioned a journal. When Griff was first in the hospital, we didn’t know what he had, just a large, fast growing bump above his eye. The doctors would ask a million questions and I found if I kept a journal, I could better answer those. Like how long has the bump been this colour? When was his last bowel movement, how long as he been on this med? I kept a journal of his daily life. It was great if my hubby was not there, he would know how the day went and which doctors came to visit etc. I would highly recommend it!

Clean

Clean your hands, clean yourself, clean your house, your car, your freaking cat. Clean EVERYTHING. Because your kid will no longer have an immune system, he will catch everything. Scrub your hands, right up to the elbow, clean every toy you have in your house. We even rolled up the rug in the living room, the hardwoods were easier to clean! There are some organizations that will clean for cancer families, but we were not so lucky. My Mum was a godsend and would help me out a lot in the cleaning dept. (and laundry…oh gawd the laundry…)

Connect

Yes, your hair is a mess, but that lady looking at you from across the room? She just wants to talk to another Cancer Mama like her but is too stressed or too tired or too scared to reach out. Children are a great ice breaker. Give your kid a snack and send them to the middle of the room. He will attract other steroid raging children that will gobble up the snacks like sharks! You and the Mamas can laugh about it and it will get the conversation started. I was lucky enough to connect with and keep in connect with some amazing families throughout Griffin’s journey and today they are some our most dearest friends. These Mamas understand what you are going through, something that your friends and family will never truly understand. And that’s okay, personally, I never want them to understand. Its just too heartbreaking.

Support

There are a gaggle of support networks out there for you, depending on what you are comfortable with. (Please see the “helpful links” on the sidebar) Depending where you are, there are groups and foundations. Inquire with your hospital, our Social Worker had great resources. Anything from “wish” programs, to support groups, to Cancer Camps to government funding, there is something out there for you and your family. Just reach out.

Talk

You need to talk. Get things off your chest. I personally found that I did not want to “burden” my friends and family more with the gory truth so I looked for outside help. Inquire with your social worker at the hospital. There might be a therapist or support group that specializes in your child’s type of cancer? I had an amazing therapist that helped me through the good times and the bad. But its not just about sitting on the couch and crying. She gave me great tips to combat anxiety when I’m not in her office. She also gave me awesome tips and “go-tos” (words or sentences to say when people ask you/say something that makes you uncomfortable or is something you can’t talk about at that moment.) Example: When I returned to work, every person I encountered asked how Griffin was. This can be exhausting to try to answer this question, in full, 1000 times in one day. So we came up with an answer like, “it is quite complicated but he is very happy and comfortable at the moment. Can I explain over lunch?” It avoided the hard stuff that made me cry, it answered their question for now and shut them up. win, win, win.

Camp

You might not be a “campy” sort of person, and that’s okay, but the odds are your kid is! Here in Ontario we have Camp Trillium and Camp Ooch which are fabulous free camps for Cancer Kids that lets them be themselves in a safe and understanding environment. Those memories will last a lifetime and the time us Mamas have alone/together is priceless! Yes, it seems like more work to bring a cancer kid to Camp, but trust me, it is sooooo worth it!

YOU

As a Mother, your child usually comes before you always, but as a Cancer Mama, you tend to neglect yourself. Remember to eat. I thankfully had a very good support system that would remind me to eat but not everyone has that. Doesn’t matter if its just a granola bar or a shake. Eat something. And remember to take care of yourself. You cannot look after your child properly if you are a mess yourself. Allow yourself to have a quiet moment for a tea, do Yoga in the hospital room! I even know a Mum who sewed, she brought her whole sewing machine into the hospital when her child was admitted!!! Give yourself an afternoon and get a pedi. You deserve it!!! Yes money is tight, but what is your sanity worth?!?!?!

 

And the most important thing? YOU ARE NOT ALONE. I know it may seem like it, but there are millions of Mamas out there, just like you. We would love to talk to you. Reach out, spread your wings, kick Cancer’s butt and love yourself while doing it!

Hug your babies tight tonight!

 

XOX

 

Feelings

Feeling Guilty

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All cancer survivors! Walking together, surviving together!
All cancer survivors! Walking together, surviving together!

Have you ever felt guilty about something? Maybe you stepped on a bug on the sidewalk? Elbowed your kid in the head by mistake? Ran over a squirrel in your car? I think we have all done these things, felt guilty about it for a moment and moved on. I once was shopping in Zellars (The Canadian version of Kmart) with my Mom, and I was young enough not to be able to see over the counter, so I was five maybe? I was REALLY excited over this new Barbie my Mum let me pick out. I clutched her in my arms throughout the entire store, I looked into her eyes and day dreamed of the dressing changes we would be doing and plastic car rides we would be going on. My Mum bustled me along, as she grabbed her bags to leave. Out in the parking lot she realized I was still clutching the dang Barbie and had not paid for it. I remember her DRAGGING me back into the store like some common criminal. I was embarrassed, but more than anything, I felt GUILTY. Like a deep ache of guilt, like would be Mum ever forgive me? Could I ever forgive myself? Will I still get into College?

Fast forward 20 years and here I sit, snuggling with my beautiful healthy five year old boy that happens to be a cancer survivor. Yes, we have a few side effects and setbacks due to Cancer, but in the grand scheme of things, we had a very lucky journey. As I sit here, running my hands through his hair that grew back a much darker colour, I cannot help but to think of the friends of ours that are still battling the disease. Why is my child ok but theirs has relapsed? Why did they go through 12 ports and ours was perfectly fine? Why is my child alive while theirs is dead? The guilt swallows me up some days. Do I deserve to have a healthy child when some great Mums out there are missing theirs? I can’t wrap my head around it. Logically, I know it’s silly, I should be shouting from the roof tops and dancing a jig at our luck. But how can I be celebrating when other kids are dying? When other kids are still fighting? Apparently it’s called Survivors guilt which is a part of my PTSD. That’s great that there is a nice little name for it…but how do I fix it?

The long and the short of it? I DID make it in to college, LOL the Barbie trauma is long behind me. But the Survivors Guilt? I find myself inserting myself into my Cancer Community, doing things like running a Parent’s Support group, organizing a Super Hero sewing bee so every sick kid gets a Courage Cape and lots of fundraising events through the year. Events like Relay for Life is a great day where Cancer Families and their supporters plus great members of the community get together to walk together and raise money. Its a way of connecting. Look up your local Cancer Society or Ronald McDonald House as they always never volunteers I feel like instead of filling my heart with guilt and dread, I actively fill my heart with love from these other Cancer families. Yes, by putting myself out there, I could get hurt again as our friends may relapse but the love far outweighs any of the bad.

The guilt? I will never be able to fix it but I CAN put it in a figurative little box, with a pretty little bow. I know it’s always there, tugging at my heartstrings but I don’t have to open it all the time. I keep it close to my heart, I think about those kids all the time but I’ve learned that it doesn’t have to take over my whole day, I don’t let the guilt consume me anymore. I’m allowed to laugh and enjoy my cancer-free child. We all know life is just too precious and too short to be worried about something I cannot change.

Hug your babies tight tonight…and remember, you are not alone.

 

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

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

How to “deal” with it

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 How to “deal” with it…

                                        …it being Cancer?

childhood cancerAhem, Attention, Attention please. I, Mama Emma will now share my secrets as to how to “deal” with Cancer…

Um, yeah, I have no idea.

hehehe, its probably the number one question I get asked. How I lived through my son getting sick, how my marriage didn’t fall apart, how I didn’t pull my hair out, how life went on. The truth is, you don’t have a choice! You HAVE to be strong! You cannot crumble into a million peices because your child is counting on you. I’m not going to lie, I certainly thought about never getting out of bed ever again. But you have to get up, no matter your circumstance.

A wise Auntie of mine told me an epic story, its been lost from my memory by now (I dont have a very good memory to begin with) But it was something about a kid that had to go to piano lessons, he was scared and unsure, the first couple of lessons, he would hide under the piano bench. The teacher would try to coax him out but there he sat, hiding. She just went on with the lesson with him under the bench. Eventually, the boy made it ON TOP of the bench and was able to learn his music. He realized he was good at it and only his only fear was holding him back. She told me this story and it really stuck with me. At the time I was quite depressed and everyday life was a struggle. So I started to judge my day like “this is an under the bench kinda day” or “Im on the bench, but holding on for dear life!” And best of all? I realized that even though the boy was hiding under the bench, he was learning, he was soaking in the lesson, getting to know the teacher and the music. An “under the bench” kinda day is not the end of the world, yeah, it sucks, but make the best of a crappy day and keep your ass on TOP of the bench! And also, that my own fear and worry was holding me back! I was missing out on some days that could be really amazing and for what? Worry? Guilt? Depression? No thanks…

Throughout Griffin’s journey with cancer, I had varying degrees of insomnia, but early on in his treatments were the worst! I would lie in bed and worry, I would go over the “what ifs” over and over in my head. I would also go over everything to do with his cancer care, all this meds (24 in all, all taken at different times, different doses, some with food, some with zero food, etc) to make sure I didn’t miss anything. Then I would go over the days and weeks to come, planning out food, what packing at to be done, organizing, all in my head. All i could think of was CANCER CANCER CANCER. When I did finally fall asleep, I would have horrid, life-like dreams and nightmares, most of which centred around cancer (I know, big surprise eh?) The worst one I would repeatedly have is, I would go in Griffin’s room while he was sleeping and take a melon baller (apparently that was hot) and carve out the tumour from his face. I could smell the flesh burning and feel the blood pouring over my hands. I would wake up suddenly and franticly, in a pool of sweat, and I would have to sneak into Griffin’s room to make sure I didn’t actually DO anything (We don’t even own a melon baller! LOL) Needless to say, after having a nightmare like that, it was VERY hard to go to sleep. Actually, I really didn’t WANT to go to sleep for fear that I would dream that again…

In truth, I wasn’t really dealing with “it” well, I was walking around like a stunned zombie. My doctor gave me sleeping pills as well as pills for stress and anxiety. But they just took the edge off, and I didn’t feel emotional at all, like either way, happy or sad. I just, was there. Then one day I realized, that I wasn’t enjoying my favourite song, normally I would have cranked up the radio, opened the sunroof and bopped along to my song. But there I was driving along, not caring. This was not me. I didn’t feel suicidal or anything, I just didn’t FEEL anything. I knew this wasn’t me and I knew I had to find someone to talk too. I reached out to the free therapy available through my work. I met with a man that wanted to deconstruct my childhood, he wanted to “get in my head” and see the true “meaning” of my issues. I was totally creeped out and RAN from his office! I was really really scared to go and see someone else. I waited a couple of weeks and then called again. This time I talked to “A” over the phone. The whole conversation was basically about her, she was a mother and wife, ran a laid back office and she gave me her website to see if I wanted to look her up and see if I felt comfortable talking to her! Well! This was EXACT opposite to the last dude I talked too. I walked into “A”s tiny little office, and sat on a fake leather couch, ikea-style. She was warm and smiling, blonde and tiny short. I instantly liked her. She started out the session just asking me why I was there. Well, that started the flood gates. I BLLLLLLLAAAAAHHHHHed my whole story out in out like a barf for an hour of a conversation. I couldn’t talk fast enough, going over the horror of the past couple of months. It felt SO good telling someone the whole truth, without sugar coating, or holding back to protect their feelings. It felt freeing. By the time I was done, SHE was in tears. Again, I was unfeeling, just telling my story. The first few visits was just me telling my story, going over facts and stuff, making sure I got it right. After awhile, I started to enjoy going to see her! I liked the feeling of bouncing things off of her, seeing her opinion of how to deal with a rude doctor, or an insurance company agent I wanted to strangle or whatever. She asked me one day what the beads were that I held in my hand. I never noticed that I did this, but apparently, i would fiddle with Griffin’s bravery beads (he gets a bead everything he gets a poke, needle, xray, mri, chemo, radaiation, etc) I was using them like prayer beads maybe? They kept me grounded and present in the conversation. Now, this therapist and I are no longer “seeing” each other but we do keep in touch through email and I update her on major events and stuff. She was an amazing part of my recovery. And I am ever so thankful for her!!!

So in closing…my advice to deal with it? I dunno, I just fumbled my way through it, which is probably what you have to do as well. I wish you good luck and remember to trust your gut and hug your babies tight tonight!

XOX