I’ve received some messages from our sweet readers and followers, wondering where I’ve been. Wondering why I haven’t posted blogs, photos, or many updates for that matter, on the girls. Wondering why there has been silence. And I’ll admit. I have been silent. I’ve felt like writing, I’ve felt like sharing, but each time I sit down to do so, I draw a blank.
**I believe this post goes for any medically fragile child or traumatic experience or tragedy anyone faces; however I can only speak from the childhood cancer perspective**
There are some things veteran childhood cancer families tell you at the beginning of your childhood cancer treatment that you take seriously. Like “It will be hard” “They will puke a lot” “You will be tired” “Childhood Cancer Sucks” “This will change you” and so on. But then there are the things you brush off. The things like “Ask for help” “Take breaks, you will need them” “Childhood Cancer is hard on a marriage” and “You will lose friends and family over this”.
I thought “What? I’ll lose friends because my twins have cancer? How can that even happen? All of our friends have been so supportive. More than supportive. Without us even asking they’ve thrown fundraisers, made meals, watched babies, brought/sent care packages, checked in via facebook/email/phone/text. Our friends have helped carry us through the hardest thing we’ve ever faced. How would we lose them?”
I have recently shared a few fellow cancer fighters pages and updates on my personal Facebook page. I don’t do it often, but sometimes my heart compels me to do so. I share so that a child or family can receive extra thoughts, prayers and love. Also to continue to bring awareness to pediatric cancer. Some of the reactions I’ve received from doing so, have been surprising. I am so thankful for those friends and family members who have been supportive of my girls as well as other cancer warriors. And who do comment so nicely and heartfelt on my posts about them. Some friends have reached out via text that they are thinking of our friend, or they are heartbroken when I posted about Grant passing away, or praying for Hannah hearing the news of relapse. Thank you, sweet friends. Thank you.
But then there are the other messages I’ve received, or comments I’ve heard. Some have asked me to stop posting about childhood cancer. “Your girls are in remission, stop being a downer.” “I can’t look at those posts of sick littles, it makes my stomach hurt.” These comments hurt me. Hurt my heart. Yes, my girls are in remission, but remission IS NOT THE END. It’s a great step, but our nightmare isn’t over. And it never will be. (I don’t let that define us, though. We are happy and we continue to move on with our life, but that doesn’t mean that we never talk or think about childhood cancer or the others still fighting.) I am sorry that the photo of our friend fighting for his life made your stomach hurt, I hope you never have to experience the feelings his family feel. That my family feels. I don’t wish it on anyone. I don’t post to make you sad, but to bring awareness to the issue. To give you a small, small glimpse into this life. Our forever changed life that includes childhood cancer. It’s our reality, and I’m sorry if that reality makes your stomach hurt or makes you sad.
If you follow me on social media, you would have seen a post recently about my Saturday dates with Teagan. Since being back from the hospital with the twins’ treatment, I’ve made a point to spend extra quality time with her. We usually go shopping for groceries, sometimes to get breakfast and a coffee, other times on a walk or a run. Whatever it is, Saturday mornings are Teagan and mommy time. It’s usually pretty low-key, until this last weekend when we attended a Disney Princess Ball.
In the last 6 months or so, Teagan has really started getting into Disney and the princesses. I secretly love that she likes the classics like Sleeping Beauty, Snow White, The Little Mermaid, Beauty and the Beast and Cinderella more than Frozen (don’t get me wrong, there’s plenty of Frozen fan-girling going on in our house) but I just enjoy that she is well rounded in her princess obsession. About 2 weeks ago I started talking about the Princess Ball that we would be going to. I wanted to keep it a secret at first, but I realized that I would need to get her a new dress and it was also suggested we don’t keep it a surprise because that tends to upset children sometimes and I wanted her to have the BEST time, so we didn’t risk it.
I hear this phrase from my threenager often. Usually it’s shouted in a loud shrill “NO! I DON’T WANT TO!!” And that’s how I’ve been feeling for the last few days, friends. I just don’t want to.
When my alarm goes off at 6:00 am, I just don’t want to get out of bed.
When Teagan is being a threenager, I just don’t want to deal with her shenanigans.
When it’s cold outside, I just don’t want to take Ammo out.
I just don’t want to do the dishes.
I just don’t want to string up the feeding pumps again.
I just don’t want to sweep the floors, do laundry, or pick up baby toys.
I just don’t want to work out.
I don’t want to meal prep.
I don’t want to try and try and try to get Kenedi to eat or Kendal to crawl forward.
I don’t want to pack everyone up and go to follow up appointments for the twins.
I just don’t want to.
**Informative post. This is in no way directed at anyone in particular. Many of these things haven’t even been said to my family, some have. Those who know me know if you say something that offends me, I tell you right away. This is just meant to be informative to those who may not even know what they are saying or how they are saying it is hurting our (tubie parents’) feelings**
Having twins usually causes a bit of a spectacle when we are out and about, but with Kenedi and Kendal we get a few extra stares and whispers. I really do understand the curiosity. It’s human nature. I’ve spoken to other parents of tubies and together we’ve compiled a list of what not to say to parents of tubies. This is by no means a complete list, but a list of the most common questions and comments we get:
Bear with me as this is a bit of a long one…
So March 20th marks my one year anniversary of “not working”. I use the term “not working” loosely since I am working ALL DAY LONG with the girls. But I mean putting on my BEAUTIFUL work clothes, heels, dressy blouses with blazers and cute necklaces, and going to my office, drinking coffee without screaming tiny people, talking to other professionals, meeting deadlines, typing documents, researching through records and all the things that come with my career. Prior to cancer, I was a paralegal at a law firm in town. I’m lucky enough that when the girls are cleared I will be able to return back to work. That being said, I have no idea when that will be. The waiting game that comes with cancer and the unknown of everything is excruciating. I haven’t worked in one whole year. That’s the longest I’ve gone without working since I was 15 years old.
Many of you know me and have started following our journey after our twins were diagnosed with cancer in August, so why haven’t I worked in a year? There’s more to the story than just cancer with my little ladies.
SPRING CLEANING IS HERE!!! This weekend Aaron and I spent a lot time cleaning out the garage, the basement extra bedroom, packing away all the Christmas stuff, going through last year’s paperwork, filing taxes and all of that fun adulting stuff you have to do. It’s not always that fun, but has to be done. In our purge I came across something that made me stop and take an hour (okay 3!) and go through. Two giant totes in the twins’ room filled with love.
How can a tote be filled with love you may ask? Well in these totes there are handmade cards; store bought cards; typed notes on letterhead; hand written notes from the elderly; hand written notes from small children; coloring book pages colored by children; notes on post-its, on note paper, on lined paper, on napkins; messages from churches; prayer books from prayer warriors; prayer blankets; guardian angels colored and strung together crafted by an elementary class that were hung in the girls’ hospital room; posters with signatures from sports teams that were praying and thinking of the girls; trinkets of guardian angels; necklaces for the twins; long letters to me, Teagan, the twins and Aaron; letters and photos from kids who held lemonade stands, or bake sales and donated their money to our family; a card from a family who decided to not have Christmas gifts this year and donate that money to our family; Items not in the totes, but I know were sent and received were donations of $5 dollars and donations of $5000 dollars and everywhere in between; teddy bears for the girls (all 3 of them); dolls and toys for the girls (all 3 of them) clothes; headbands; books; goodies for me and Aaron; I could go on and on but I think you get the picture.
These totes are filled with love. Love for the twins, love for Aaron, love for Teagan and love for myself. Some from people we know, a lot from people we don’t. I spent hours this weekend reading through all of this love. I sat down and read every single word that was in these totes with tears streaming down my face. I do not think that I could every express how grateful we are as a family. How thankful we are to everyone who has supported us on our journey thus far. I REALLY wish that I could sit down and personally write a special thank you note to each and every person who has supported us with prayer, with written words, financially, and everything else, but that wouldn’t be possible right now. So this is the best way I know how to show our gratitude.
Thank you to everyone who wrote, donated, prayed, sent positive thoughts and vibes, sent gifts to any of us, donated items to the auctions, donated time to organizing and running fundraisers, donated food for the meal train, donated food from your place of business, donated services (whatever they may be) to anyone in our family and everything else that I could possibly be forgetting. Thank you to our current community, our past communities, our online communities, and our care team. Thank you to the strangers that have now become our friends. Without the LOVE and support we have received from all of you so far, we would not be where we are.
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Since we’ve come home from the hospital with the girls from their cancer treatment, I get asked a lot of questions which I’m usually happy to answer. But the question I get asked the most is “I bet you’re so happy to be home!!” To which I smile and nod. Or say “yeah, it’s pretty nice.” The truth is, although I AM happy to be home, I’m not as happy as people think I should be. Hell, I’m not even as happy as I think I should be. And I feel guilty about that.
Let me go back and repeat. I AM HAPPY. I love being home in my house with my girls and all my things. I love being out of the sterile hospital room. I love being home together as a family of 5. Yes. I love all of that. That being said, being home alone all day with 2 medically complex babes that can’t talk but require hours of working with them, is exhausting. And on top of that, I’m still learning how to be a stay at home mom. If I’m being honest here, that was never a dream of mine. I’ve held a job since I was 15 years old so to lose my identity as a working mom, as a career woman, has been a little challenging for me to get used to.
Every morning we get up, start a feed at 6:30 am. Then hope and pray they keep it down so that at 8:30 when you weigh them, their weight has gone up. Change diapers, change clothes, clean up any puke, start laundry so puke filled rock n plays are clean for the next feed (this happens after every feed, so, 4 times a day), get them in high chairs, spend an hour working on oral feeds, hook them up to some formula while they are eating, unhook them from feeds and put back in rock n plays for remainder of feed, clean up cereal, baby food mess and clean both high chairs to be ready in 2.5 hours for another hour of oral feeds.
After their mid-morning tube feed and tiny cat nap we do a lot of tummy time and therapies on their belly. Kendal is doing pretty well in terms of motor development but Kenedi is a bit behind. Although she can sit up on her own, at 10 months, while on her belly she still won’t lift up her head. So we spend between 1-2 hours working on the floor, playing, rolling, trying to push our head off the ground, then hop back in the high chair for more food practice, followed by their long afternoon nap. During this time I get dishes done, laundry done, everything cleaned up from the morning, any other cleaning that needs to be done, phone calls and appointments set up, ordering of feeding supplies, calls to our dietician with updates, etc., (sometimes I can sneak in a 30 minute workout here if they sleep long enough!) and start dinner for the rest of the fam. And I do all of this usually without speaking to anyone except the girls. Yes, therapies come into the house a few days a week which is awesome, but most of the time it’s just me and the twins.
When Aaron and Teags get home it’s usually busy with dinner for us 3 and then a different dinner for the girls, cleaning up, showers or bath if necessary, some quality time with Teagan before she goes to bed at 8, some play time with the twins for her, then Teagan’s 30 minute bedtime routine (PLEASE tell me this gets easier with her age – she’s such a staller right now! “I have to go potty” “I need a drink” “I need another hug” “I wanna cuddle” “mommy I love you”), then get the twins ready for bed and their final feed started between 7-8, clean up any puke and change them after, then put them in their cribs at 10 and mosey up to bed myself. Also thrown in here throughout the day are all the different medications the girls are taking, each one taking a different dose of each med. I have so many alarms set on my phone these days that I don’t even remember what they are for when they go off until I read the note I’ve written for it.
**I just want to note in here, hats off to stay at home moms who do it all. Seriously, you all are my hero! Teagan goes to daycare and I can’t imagine throwing her into our mix during the day**
Not only am I dealing with a new life at home, I’m dealing with the grief of losing my old life. I’m grieving the loss of my twins’ infantile months, years. I’m grieving the loss of their health, the loss of a year of Teagan’s life being normal, the loss of my normal life. I’m learning how to live in the now, very different world. Not just the cancer world, but the life after cancer world.
I also kinda miss the hospital a little bit. I miss the comfort of those 4 sterile walls, the comfort of being able to push a button and get help whenever necessary. I miss having the ability to take a shower without worrying if someone was pulling out an NG tube, puking everywhere, or screaming their head off while I was in there. I miss the conversation with our nurses. I’ve said it before but our team became our family and I miss seeing them every day. They went through the hardest days with us and they understand me. Understand the girls. They understand when I say that I’m frustrated about their eating and they wouldn’t judge if I told them “I was crying again because the girls wouldn’t take their bottles.” They wouldn’t judge me if I told them that “I just needed a minute to myself because the whining is driving me crazy”. They understand the demands that come with taking care of the girls and their medical issues. And they would understand if I told them that even though I am SO HAPPY and blessed that my girls are doing relatively well, I’m just still mad that they aren’t “normal”. I’m mad that they won’t drink from a bottle. I’m just mad that this happened. And I’m sick of being patient waiting for these lasting chemo affects to wear off. They would not judge me and they would understand.
I am so blessed to be able to stay home with my girls. I’m so grateful to be able to do that and to work them constantly to get them back up to speed developmentally. I’m not unhappy about that at all. All I’m saying is please don’t judge me when my response to the question/statement “you must be so happy to be home!” isn’t an overwhelming “YES!” because it’s just hard. But then again, what part of parenting is easy?
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The girls turned 10 months old yesterday. 10 months. I can’t even believe it. We are fast approaching not only most time spent out of the hospital than in during their little life times, but also their First Birthday. Stop. It.
Both girls are doing very well. They have VERY different personalities that have blossomed since being off treatment. They both have two bottom teeth which all came in at different times….two teething babes is it’s own form of torture! Both girls are also sprouting hair and I’m obsessed with it. I can’t wait to do pony tails!!!
Kendal is our chunky baby weighing in over 17 lbs. Her nick name is “chunks” or “chunky monks”. I love her baby rolls. She sits on her own like a champ and just in the last few days can bear weight when in the crawling position. She is a talker. And DEMANDS you pay attention when she’s talking. She also is making huge strides in the eating department. She’s taking baby food SO WELL and just today we found a sippy cup that is working for her. She’s not good at it yet, but I’m convinced with practice she will have that tubie gone soon.
Kenedi is our “peanut” (because she weighs 14.5 lbs) or “lovey dove”. She is so calm, cool and collected all the time. She has the sweetest demeanor and will offer you a smile whenever you need it. She is getting much better at sitting on her own but still despises tummy time. She refuses to lift her head while on her tummy but that’s something we are working on! She doesn’t talk much but definitely observes everything around her. Recently she started blowing raspberries as her mode of communication or attention seeking. Her fine motor skills are very impressive and she will examine a toy for hours. She hasn’t been eating very well lately but she has been battling a double ear infection. Today she seems MUCH better and I’m excited to start up with trying some food again tomorrow.
I have started planning their first birthday party, which is also their golden birthday and I am so excited! I cannot wait to celebrate with them. I think if anyone deserves an over the top gold party, it’s these two little survivors!
The girls are wearing Love Your Melon hats in this photo (Kendal on left, Kenedi on right). Please check out their website and their cause. Such a wonderful organization!
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