Jill Smokler, AKA Scary Mommy
@scarymommy
Latest posts by Jill Smokler, AKA Scary Mommy (see all)
- The Disney Reveal - May 14, 2013
- Met My Match At Disney… - May 13, 2013
- Sunday’s Baltimore Sun - May 11, 2013
Rebekah is a wife,mother,sister, daughter, and friend. She has four boys who keep her very busy. To read more about her journey, please visit The Virtual Wife.
My house is a complete disaster. There are dishes to be done, laundry to put away and a million things to do before the first day of school which happens to be tomorrow. And here I sit, feeling guilty about taking time to explore my feelings. Guilt is a feeling I am quite familiar with lately. Maybe that is normal when your husband has a brain tumor, not sure since this is all new to me.
Lately I have been guilty more than anything else. I feel guilty for all the fights we had over the last year for things, it turns out, my husband couldn’t control. I feel guilty for still getting angry at him even though I know he probably still can’t control it, not to mention all the stress that he is under. I feel guilty that our children have to deal with something so big when they should just be enjoying their childhoods. I feel guilty for letting my house go to shit. I feel guilty for not being more vigilant about my husband’s diet (and let’s face it – mine and the kids). I feel guilty for getting angry at how this has all changed my life. I feel guilty. And that’s okay, because as a woman and a mom, I am very familiar with this feeling. It’s all the other crap feelings that I can’t quite get my arms around.
My husband had been having headaches. We didn’t think anything of it. Sometimes he felt dizzy or unbalanced. We self-diagnosed that he had a sinus infection. Our doctor agreed and put him on antibiotics. Some days he would come home from work and go to bed. I got angry. I didn’t get to go to bed when I had a headache. Buck up buddy! (I, of course, did not say this and instead suffered in silence and let it stew.) The Thursday we found out started like any other day. We had a long to-do list that included packing for my husband’s high school reunion that weekend, football practice and a follow-up doctor’s appointment because the meds she put him on weren’t working (cause dah, he did not have a sinus infection). The doctor’s appointment led to an MRI scheduled for 9:30 pm that night. We were still planning on going to the reunion, so sure the MRI would show nothing. And then the phone rang at 11:15 pm, 5 minutes after we got home. And life as we knew it would never be the same.
In less than a week, we would be in and out of the hospital twice (two different hospitals) including a four hour brain surgery. (Yup, they drilled two holes in my husband’s skull and then used a jigsaw.) We would learn things about the brain and tumors we never hoped to know. I would have to buzz my husband’s hair since the haircut the surgeons left him with was a bad reverse Mohawk. I found a whole new use for reminders on my phone, to tell us when he needed his medicine. Our Facebook pages lit up with wishes from people we hadn’t talked to in 10 years and even from people we didn’t know. Family came to visit and help with the kids. Friends stopped by to say hello and bring food (wishing that part didn’t end ). It was a crazy, whirlwind of activity which left little time to think about the hard truth of the situation. And then all the motion stopped and what was left was real life. Because no matter how much you wish it would, life does not stop for your husband’s brain tumor. Life goes on.
The hardest part of all this has been trying to continue on with our lives. We have four boys ages 4 to 14 and they are very active. We have football and sleepovers and back to school shopping. And of course, they actually want to eat from time to time which involves grocery shopping and cooking. The kids have been trying to be good, but they are kids and there are still fights. There is laundry and cleaning and doctor’s appointments. And all of this must go on while my husband still has a tumor on the other side of his brain which can’t be operated on. I am overwhelmed to say the least and when it gets too much to handle, I feel guilty about that too because my poor husband is the one actually going through all of this. He is my best friend and I share everything it him, but I do not want to add to his burden by telling him how hard this is on me. He is starting to get out and about more because I think sitting in the recliner all day is driving him nuts. And so he is going to play golf. And I feel guilty because I am angry that he gets to play golf while I work, clean the house (sometimes), cart the kids everywhere and remember all the doctor’s appointments. Have fun honey, ahhhhhhhhh!
What I have come to understand is that the trauma of the diagnosis and even the surgery was hard, but finding the strength to go on with life is even harder. I know that people go through their own personal battles every day and I applaud them for all their hard work. If anyone has any secrets to not losing their shit along the way, I am all ears.
May the force be with you, I am certainly hoping it is on our side.
{ 36 comments… read them below or add one }
I am so sorry for what you and your family are going through. I wish I had words of wisdom. I think you have every right to lose your shit once in a while. You also have every right to do something special for yourself every now and then. My thoughts and prayers are being sent your way.
Aimee recently posted..Wordless Wednesday: Apples
Rebekah, that sounds like a lot. It’s totally okay to feel angry at the situation, at feeling guilty, at feeling like it’s too much. I hope that things get better, that your husband continues to recover. It’s very brave of you to be open and honest about this. Sending you love and light.
Alison recently posted..Priorities
I understand what you’re saying very well. My son was diagnosed with leukaemia at the beginning of this year, leading to a bone marrow transplant last month. I’m writing this in the hospital with him while my other kids and husband struggle to keep up at home. Oh yes, the guilt . And the missing of your “old” life” And the tiredness and the resentment, which just leads back to the guilt… Sending hugs and positive healing thoughts winging your way.
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I have no advice, unfortunately. Sending prayers and good thoughts your way.
Gigi recently posted..And this is why we don’t need to tip the paperboy….this time.
All I can say is that we never know how strong we really are until we have to be. You are. The guilt, as you pointed out, as a woman, is inevitable. My husband suffers from PTSD from his time in the military, we have four kids, and I have to do everything. He sleeps most of the day and is no help as a partner, husband, or father. I am forever guilty that my kids don’t have a dad that will take them fishing, play catch, or fix stuff around here. And I feel guilty that I get so angry about it. We’ve been together 20 years and it hasn’t always been like this. But currently, I just do my best. And if we take it one day, one task, one moment at a time, it doesn’t seem so overwhelming.
Good luck to you and your beautiful family.
Mom Off Meth recently posted..Inpatient
Rebekah, I’m so sorry.. In jan I was dx with colon cancer–at age 37 sham, with a 5 yr son and husband who just left a job he was at for over ten years to a new gig that is super intense….it has been interesting journey.ngranted I’m on the other side of this journal, but I think these are things that have helped my husband.
A few suggestions:
1) you need to organize your troops. You can’t do all of this alone. We use a website called lotsa helping hands. It’s helpful, because we can post news on what’s going on with me, thus, not having to talk about your husband’s dx all.the.time. This site will coordinate your needs, be it food delivery, childcare help, rides to doc apps-anything. The site has been so helpful for both me an my husband,
2) give yourself permission to be made, annouyed, etc. cancer sucks. And while you don’t have the cancer in your body… You ave cancer to deal with. So, feel what you need to feel-it is all good.
3) consider outsourcing housework. If you can swig having a cleaner come in–that will help a lot. We have a someone come in once a month and it’s a huge help. It means, I just need to keep up with the daily tidy stuff but the big things will all be scrubbed.
4) consider finding a support group for spouses/partners. There is something so peaceful amd emergizimg being surrounded by those who have been there, done that.
5) be kind to yourself.
6) this one has been the hardest for me: accepting people’s kindness with grace and recgonizimg that y new normal is going to make me a different type of friend. So, that means I might not be able to volunteer, shelp kids, etc. And that is all ok.
7) state YOUR needs: when a friend asks is there a ything she can do..l tell her. Ask her to pick kid(s) or maybe help tidy of the house.l,or maybe you just need someone to sit with you and talk about anything BUT cancer. State those needs and accept it with grace.
I hope so much this give you some peace. Cancer can suck it,
S
Doh. iPad typos abound…. Sorry about that. I also hit sent to quickly……
Love and light to you and your family.rachel
Thank you for your words of wisdom for Rebekah and for me as well. There are so many strong women out there and I love blogging as a way to be a part of this large community.
Thanks you for sharing. I have never had to deal with a brain tumor, but have had a lot thrown my way when it comes to kids, husbands and taking care of failing parents.
What i have found helps is to take it one day at a time and somtimes it means taking it one hour at a time.
You do need to let go of the guilt. We all do the best we can in any given situation and that is what you are doing.
Actually you should be proud of yourself. What you have on your plate right now would make many fold and you are withstanding the storm that has been sent your way.
Remember what doesn’t kill you in life makes you stronger! When it comes to your children and feeling guilty about them haveing to go through this, they to will come out stronger.
Just be sure that you do take an hour every once in a while for yourself. leave the children with a friend or family member, so you have time to regroup.
I don’t know about your spiritual life, but if you are a believe there is straight for you there. Just picture it as a rope that is given to you to hang onto when you need to hang onto something. Like a life line.
Take care now and thanks for sharing this, it does help to talk about it.
My prayers are with you and your family. You Are Stronger than you think.
debbie
I have no better advice than the ladies above, just wanted to send you a virtual hug!
Wow. That’s a lot of shit to deal with. Don’t worry about the house and anything you can let go. Just do the basics to get by right now. Don’t forget to take care of yourself too.
Kelly recently posted..Vagina Is A Real Word.
I would highly recommend reaching out to Imerman’s Angels. They will match you with someone who has taken care of someone with cancer like your husband’s and has a similar life situation. They can tell you about how they did it or maybe just listen to you. It helps to talk to people who’ve been there.
My ex-husband was diagnosed with an oligodendroglioma, grade 2 brain tumor 3 months after we were married. I kept everything bottled up inside and we ended up divorced almost 7 years later. I remember getting to the 5 year mark and he was still battling depression and after effects of the tumor and I just couldn’t deal with the rest of my life being that way.
Turns out a lot of what he was going through was pyscho-semantic and once he got his depression under control (after I left), he is 100% fine. And we are friends and really good at co-parenting our 4 year old.
I wish I had been more vocal about what I was going through so that we could have worked through it together versus me giving everything I had and then having nothing left to hold us together. I’m with a great guy now, but I wish for my son that things had worked out differently.
My best friend of 17 years passed away last October from complications associated with her brain tumor. She was cheated if you ask me. Her doctor kept putting her off; acting like it was no big deal. She died on the 6th. Her surgery was scheduled for the 7th.
I can’t imagine what it would be like to be in your shoes. If it would help at all I’d like to share with you that when grief of losing my grandmother left me in one unimaginable mess I managed to get by after finding http://www.flylady.net. She’s a great organizer and inspiring lady. She does not charge you for advice. She has given me all kinds of ideas on how to keep up with the house. (I’m not 100% perfect but at least I can throw crap away and not freak out like those souls on an episode of hoarders!)
<3 BIG HUGS TO YOU AND YOUR FAMILY! <
“Finding the strength to go on with life is even harder” … you really hit the nail on the head with that statement, Rebekah. And I hope you know that those words are a comfort to people like me who are facing a similar-but-different health situation. I am so sorry that you and your family have to go through this situation. It sucks. Maybe there is a way to phrase that more elegantly or poetically, but my dad’s terminal cancer diagnosis has sucked the poetry right out of me. I don’t know that there is a secret; I think some day are harder than others, and on those days you just get through it however you can.
I think you have to lose your shit sometimes. You may even have to lose your shit and forget where the hell you put it more often than that. Give yourself a pass and know that it is hard to continue. It’s hard enough to keep going after a job loss, a car accident, a lazy Sunday, so it’s natural that you wouldn’t be able to jump back into the swing of things immediately (or guilt-free no less). People think it’s hard to overcome some things in life. It’s not always hard to move past shit; it’s hard to then keep on going.
I commend and applaud you for all that you are doing (ha. As if it’s even possible to just fall down and say “just let me lie here.”) I will say this though: ask for help. When the friends come by and ask what you need — tell them. Whether it’s in the form of grocery shopping or kid shuttling, do NOT feel like you have to manage it all when people are willing to do a portion for you. (And now I’m giggling b/c doesn’t that create even more guilt, that you’re taking them away from something? It’s a horrible cycle, but we are going to tell that voice to back the fuck up). I do wish you the best of luck, Rebekah.
Arnebya recently posted..It’s Not Me, It’s You.
I was in your position two years ago. My husband was diagnosed with AML (a form of non-genetic leukemia) at the age of 27. We have 2 little girls- who were barely 3 and 14 months old at the time…
Your world turns upside down. In my case, we defaulted on several credit cards among other things-andI still haven’t recovered from it…
Do what you can to document your time together. Especially as a family. Go out of your way to create special memories. Let people help! Recruit friends or family to do chores while you take a weekend to watch the kids be kids…
Ease up on yourself. We all have to make decisions and do the best we can with the information and resources we have at that time. Please remember this when looking back- it tends to help ease regret.
November 14, 2012 will be two years since my husband’s passing… I wish someone would have been frank with me about needing to let things go in order to cherish every moment together… and if I had it to do over again, I wouldn’t hesitate to take people up on their offers, nor would i be afraid to ask second opinions on treatment plans.
I am so sorry to hear about your loss, I know that we are lucky each and every day and that it could have been much worse. My thoughts are with your family….
Rebekah, try Reiki. This is the first thing that popped into my mind when I read “If anyone has any secrets to not losing their shit along the way, I am all ears.” I am a Reiki Master Teacher and I have been practicing for over 10 years. There is no limit to the amazing things that have happened. I am also a massage therapist, so I usually just slip a little into my massage sessions and the results are more subtle, sometimes unnoticable other than a more balanced and grounded feeling. But sometimes the results are more profound.
I guess the point I really want to make is I feel it would be helpful to find something that is easily accessible (easily schedule-able, easily affordable) to you that will balance and enrich your life, give you some ‘me’ time, bring you clarity, help you process the difficult emotions you are experiencing, something that is positive and rewarding and takes nothing from you (except a regularly scheduled time of calm, quiet, peaceful receptivity), something that is just for you. —If I lived closer to you I would bring my massage table over and give you and your whole family Reiki. — Maybe it’s recieving massage, taking a yoga class, having a walking group in a natural landscape (park, woods, lakefront, etc.) near your home, taking a guided mediation class….. etc. etc.
I refer to a “regularly scheduled time” above because this time is for you to focus on you and will be most effective in helping you deal if it is something you do on a regular basis. When I give stress management seminars, I put ALOT of emphasis on the preventative management – you shouldn’t wait til you are a big stress ball to do something about your stress, if you take a pro-active stance, you will be less likely to have a breakdown …..
And leave the guilt at the door, whatever ‘you’ activity you choose.. Or bring it with you and breathe it out of you with big gusting deep breaths. Either way this time is not for you to badger yourself with guilt. This time is to enable you to be successful at your life as a wife, mother and caretaker. And so being, it is essential to YOUR health – mental, emotional, physical and spiritual.
Know you are loved. The universe loves you. And we all love you, too.
Blessings,
Kelly
I can’t even begin to imagine what you’re suffering through.
I think that in your position I would be every bit as angry and every bit as resentful and every bit as guilty feeling. I think you’re handling this with an incredible amount of grace. Sending positive thoughts and support your way.
Eddie – The Usual Mayhem recently posted..Prairie Primer, Plum Creek, Week 1
I woke up today, feeling angry and down for no reason at all. ( well, the baby slept for 11 hours straight last night instead of her usual 12).
Now I just want to kick myself.
Don’t lose hope, faith, love.
Wishing I could help out somehow.
xo
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Dear R:
Thank you for writing here, seeking out an outlet, allowing us to share this very significant point in your life.
We are here to listen…do you have anything that makes you feel good in real life? Time to sit at the library or book store alone? A coffee shop? Matinee discount movies? Thrift shopping?
Running? Biking? Walking? A hike at a park?
You know this, but it’s important to get away: you have so much STRESS right now.
Don’t let it affect your perception: you are not alone.
People want to help, they like to help, they like to be asked.
Try it, you’ll see.
Much love to you.
Wow. Really puts things into perspective. I really, really wish nothing but positive, positive, positive for you and your family, and strength for you. As for losing my shit? I’m just beginning to recover mine from buying “the house of surprises” a few months ago. Perhaps I’m not the best person to ask.
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What a raw and honest post. Just by reading it, I can tell what a strong person you are. I recently wrote a memoir (hoping to find a publisher soon!) about my college boyfriend who contacted me when he was diagnosed with a brain tumor. We hadn’t been in touch for 20 years and were both married (to other people) with kids. The book is about our correspondence (mostly via email) during his illness and how he helped me re-evaluate my mid-life. He and his family and many friends approached his brain cancer with a lot of love, teamwork, and laughter. (He referred to his brain with the “head holes” and so on.) He also became involved in an organization called Humor to Fight the Tumor located in Minneapolis. Don’t be afraid to ask for help or support if you need it. You are entitled to it too. Sending positive thoughts your way.
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I could replace very few words in your story and it would be mine.
Mother for husband.
Two children for four.
Pancreatic cancer for Brain tumor.
Helpless for guilt.
Life does go on. I would recommend seeking support groups,
Grief therapy, and medication if needed.
I wish I had. It may have saved me from the three year landslide
I set myself on trying to run from the pain. I lost my marriage, close friends, and
my dignity on more than one occasion.
Get professional help immediately. And cry everyday if that’s what it takes.
I rarely pray. I will pray for you today.
Wow, this is SO much for one person to handle…having 4 kids myself, I have trouble handling it all with just everyday life.
My best advice? Keep talking, keep writing. You can’t predict how you are going to feel from day to day, and you’re human, so your response to the situation is going to be great on one day (or hour), and self-pitying the next. Don’t push it all down. Share it with your readers.
Flylady, which someone recommended earlier, is great for keeping your household routine regular – and it’s something your sons should absolutely help with. They need routine right now!
Mealtrain.com is a site where folks can sign up to bring you meals – that ABSOLUTELY shouldn’t stop, even if it’s only once or twice a week. You can put dietary, food, and schedule preferences in there (like, only bring you completely cooked frozen meals you can defrost and then heat in the oven or crockpot).
But keep talking, that’s for sure the best way to keep yourself sane.
Wow…this is so heartfelt and honest. I am so sorry for what you and your family are going through. Lean on people. Ask for help whenever you can. People want to help. You are definitely in my thoughts.
Annie recently posted..Stop Drumming And Bring Me A Virgin
First, I am sorry to hear about your husband. Life is so unfair. You are an amazing writer, and your story really, really touched me.
I was diagnosed with a heart condition 2 years ago while pregnant with my third child. I’m now on medication to help with symptoms, and if it gets bad enough, I might need heart surgery, which is pretty unimaginable to me. Given that my mom had a heart attack and died at only 56, this diagnosis was a VERY LOUD wake-up call. It does give one a unique perspective, and it certainly changed me as a person. Here’s everything I can think to say to you right now:
The number of people who expect your house and/or your appearance to rival that of a magazine image? Z E R O.
Plus, “Those who mind don’t matter, and those who matter don’t mind.”
–Dr. Seuss
Also: “People first. Then things. Then money.” –Suze Orman
People first, indeed. Make family memories when you see opportunities to do so. My best memories of my mom are not of times she spent cleaning or driving, but of times she spent playing cards, coloring, and sewing with me as a kid. A 10-minute card game doesn’t just last those 10 minutes, you know?
Make a to-do list (or several: daily, weekly, monthly, etc.) and ask friends for help with crossing things off. Laundry, cleaning, chauffeuring, meal cooking/freezing. Divide and conquer. People aren’t mind readers. They won’t necessarily know HOW to help you, but if they’ve offered to help you at some point during this, then it was surely a sincere offer–so take it!
You’re caring for the kids and your hubby, but what are you doing for yourself? Airline mask analogy: put the virtual oxygen mask on YOU first so you can keep your shit together and save your loved ones. Not only should you ask people to help, but you should get a massage, read a trashy novel, sip a fancy calorie-laden latte, whatever seems to work to give YOU a shot of air to breathe. The dishes can wait. Buy disposable/biodegradable ones for a litte while if you can, to take that 3x + daily chore off the list until you feel like you can cope with them again.
Go on dates with your husband. They don’t have to be anything big or fancy. But go. Do you think you’ll regret going? NOPE. Go on a date with each child at some point, too. Just you & Kid A for ice cream, you & Kid B for a bike ride. Will you regret it? NOPE. (Okay, your thighs might regret the ice cream, but a bike ride will burn it off!)
Will you feel guilty for doing all this fun, non-worky stuff, when there are soooooooo many Things To Do?? Yep, but tell that guilt to S.T.F.U. Realize that guilt is normal–but it can be toxic. Breathe in, breathe out, and by all means, lose your shit if you must. But keep going, with intention. Have fun and don’t regret a second of it.
I know that term “YOLO” is out of fashion now (or something). But you really do only live once. People always say that this thing or that thing is a “once in a lifetime opportunity.” I say that *life* is a once in a lifetime opportunity.
Again, the dishes can wait. Really. They are so unimportant in the grand scheme of things.
Clearly you have seen how precious life is, so my advice to you is just…LIVE.
And don’t be so hard on yourself.
Your post made me cry. I’m sure that’s not what you intended to do (no guilt about that please!) but it also made me want to kiss my husband, and my kids, and to be more grateful (and to show it) for what I have. Please, don’t feel guilty for taking time to think about yourself!! You have so much pressure on you–you MUST take time to decompress. What is a messy house and dirty laundry in the grand scheme of things? Nothing compared to the love you and your family have for each other, and the need to be there for each other. You have to take care of yourself, so you CAN take care of all of your boys. I wish I knew you, I would be cooking for you right now!!
Rebekah…I am so so sorry for all that you are going through. My heart went out to you with every written word. What I have experienced, and seen, is that the spouse of the one sick has a more difficult time than the one with the illness. You are completely allowed to have all the feelings you are having. Please do not feel quilty. You can not do it all, be content with yourself for what you can do. Keep loving your husband, keep loving your kids–they are fortunate to have a wife and mom like you. I am praying for you right now! Hang in there and be good to yourself.
Lu recently posted..Why Are We Afraid To Show People Who We Really Are?
Prayers to you. You’re about to head down a rough road. I don’t know if his tumor is malignant or benign, but I can definitely understand what you are being put through. I’m recovering from a brain tumor and brain surgery, myself. Please, don’t go through this on your own. The brain injury network on Facebook has groups of people that have been through what your family is going through. Please email me when you get a chance, and I will be happy to share some resources with you that may be helpful. Take care of yourself, because you will need the strength to be a caretaker if someone recovering from a brain injury.
Sending virtual hugs. I can’t even imagine. If you can find the time anywhere, maybe try a therapist. You could talk to her about your frustrations that you feel bad saying to your hubby. She may be able to offer insight…..
Kelly recently posted..A Raw Look at the Emotion of Going Back to Work from Maternity Leave
Thank you to everyone for your kind words. We are doing great and being able to share this with everyone was so helpful.
I’m a little late to the party, but all of the advice you have gotten above is true. You should be easier on yourself, and lose it sometimes. My daughter was diagnosed with leukemia last fall, and accepting help has always been hard for me and my husband. Remember it is not only for you, but for them. The people who help need to know what you need, and they will be glad to do it. From the smallest (come over and have a house cleaning party) to the biggest. And if your husband can play golf, he can do dishes. Or load the dishwasher, or use a broom. He probably needs direction, too. Best wishes, and keep writing your feelings. It helps.
Actually, loading the dishwasher may be tricky. With a brain injury, your equilibrium can get messed up, so if he has to lean over, it could cause problems. Now, if he’s able to lean over and pick up his own golf ball, he should be fine, but I know if I had to load a dishwasher, bending over would equal falling, but it’s different for every brain injured individual. Good luck to you and your family!!!
This is a brave and honest post. You are going through a hell of a lot and I think the guilt is totally normal. I hope that you can find some bit of every day to do something that is just totally for you, because you NEED IT. It is okay to have things that YOU need in the midst of all of this stress. I second the support group recommendation – it can be very helpful to have people around you (even in cyberspace) that can really understand what you are going through.
Guerrilla Mom recently posted..Hello, Brooklyn. Goodbye Summer.
Rebakah, I certainly understand the agony you are going through, but i know you know that already that you have to hold strong, not only for your self but for the kids. Their childhood determines who they would be in future and you should make sure that there is lot of positives aspects too. If i may, I suggest you to meditate, sit alone quietly for 15 mins to 20 mins, thinking about nothing else. It helps you to handle stress and be there for the kids. God bless you!