Holiday Shit storm.

Well, we’ve officially made it to the part of December where we endure the weird five day limbo stage between holidays.

Personally I love it, because new years eve/day is my favorite holiday. I really enjoy the in-between where things slow down just enough for me to cross off the final things on my “end of year to-do” list and then prepare everything I need to start the new year out fresh.

I love making plans for the new year, and the five day limbo is just long enough for me to do that. I feel motivated and excited for a fresh, clean slate, but that’s not always the case for everyone. The holidays are a hard time of year.

Let’s be real. December is a crazy month because it’s all about making big plans and meeting expectations. I’m sure you’re one of many who gets to the last page on the calendar feeling a little sluggish from Thanksgiving and all the shenanigans that come along with that, and then you begin to worry about if you’ll be able to meet expectations and do enough in December.

“Have I cooked enough? Have I cleaned enough? Decorated enough, gifted enough, visited enough, celebrated enough, seen enough, rested enough”…the list goes on. Whatever it is, it’s been floating around in your head for the last 28 days, and right now, as December is a mere three days from coming to a close, you’re probably still feeling like shit about your ability to meet expectations and wear 5 million hats during the holiday season.

Maybe you’re realizing you never used to feel this way, not up until the last few years.

I can explain that in two words: social media.

The holidays are already a difficult time, but they become increasing challenging when you’re staring, day in and day out, at everyone on your facebook and instagram pretending, not only that they are doing enough, but that their enough is easy and flawless.

I know you spent at least a few days looking at Suzy’s freshly published photo album on facebook, eyebrows furrowing at her immaculately decorated tree, pinterest-esqu living room, spotless dining set, and too-perfect family photos. With each swipe you feasted your eyes on another picture perfect photo and with every one the expectations grew and grew.

I know you did it. I did it too. And so did Suzy. Because we all fall victim to the comparison game, and that’s what social media is good for: making others jealous of their ability to pretend things are merrier than they actually are.

Here’s the thing though, for every perfect photo you see this holiday season, there is most definitely a disaster going on behind it.

I can promise you that Suzy’s cat probably knocked that immaculate tree down twice, and she had to sweep up the broken ornaments while her belligerent husband shouted and took swipes at the satisfied fuzzball. I’m almost positive that instead of hand crafting those living room decorations, she took out a small loan to fund her unnecessary show. And I can guarantee you that those family photos did not go as smoothly as all those rosy red cheeks would have you believe- minutes before the camera flashed, Suzy’s husband was probably bitching about how much he hates family photos, little johnny was wiping boogers on baby Madeline’s shirt as she screamed in horror and Suzy was sitting in her deodorant stained red sweater wondering why she wanted to go through with all this in the first place.

It’s not just her though. It was you too.

Uploading that photo of two wine glasses and a plate of cheese and crackers immediately following a huge fight with your boyfriend. Posting that status about how excited you were to see your parents when you were actually dreading being in their presence. Commenting on your mother in law’s post about family dinner explaining how delicious it was, when you actually placed your napkin over half the food you didn’t eat so no one would know you were throwing it away because the potatoes were lumpy, and you have never liked fruitcake. But it was all a show. Changing your profile picture to that angelic photo of your 11 month old who just shit all up her back 5 minutes ago and has begun regularly saying the word “shit”.

Don’t worry, it was me too.

I uploaded photos of the stockings I made when my mom was actually the one who bought the supplies because we’re too broke to afford dollar store materials. It was me when I posted photos of stuffed peppers that we made and only ate half of because I filled them too full and the beef wouldn’t cook through no matter how many extra minutes I put them in for. I added an album to facebook with photos of my tree that I purchased five days before Christmas from walmart for $20 with money I got from cans I returned from my dad’s canoe trip.

That’s right. Facebook saw the holiday card we sent out to family members, but they didn’t see the thank you note to the women’s resource center for paying my fall term tuition or the past due heat bill that went out with those holiday cards.

Yes, I admit it. I’m guilty too.

We’re all making sure our most highlighted moments make it to the facebook homepage face-tuned and photo-shopped because we’re trying to meet expectations set by others who are just as good or better at setting the bar for pretending.

Suzy, you, and me.

So before New Year’s eve, while we’re in this limbo thinking about our past year and making plans for the new year and/or just trying to stay afloat and keep swimming, let’s take some time to acknowledge this comparison game and take note of the shit storm that’s probably lurking behind every perfect photo we see.

Let’s assert that our life, too, is one wild moment after another- ripe, and beautiful and messy all wrapped in one, and that’s OKAY. We don’t need to be perfect all the time, and we shouldn’t feel like we have to make everyone think we’re perfect all the time. It’s perfectly okay to show the raw, unfiltered moments too.

All that being said, as you gear up for the last bit of the holiday season, whatever your major or minor struggle or unexpected circumstance: financial hardship, loss of a loved one, trouble with the law, mental illness, recent breakup, academic pressure, failed semester…whatever the case, keep it in the back of your mind and just be gentle.

Please remember that while it doesn’t always make the front headline, your friends and family are struggling, just like you. Commit to finishing the year out by going easy on yourself and on others.  Maybe take a break from social media. Maybe pledge to keep the last holiday of the year simple, and maybe follow that theme through 2018 to reduce the expectation/comparison game that had everyone chasing their tails in 2017.

Relax, give thanks, celebrate, count blessings, rest, enjoy, live (even if everything’s not perfect).

Merry everything and a Happy always from mine to yours.

xo

No Big Deal

Tomorrow morning Kinsley will have her first swallow study since July, which means that soon after we will be able to start oral feeds (hopefully) at occupational therapy. After this test we will be one step closer to getting the NG tube out of her nose, and one step further away from needing to have the G tube surgery.

Because all of her appointments are at a children’s hospital 3.5 hours downstate, when we have appointments I often spend a lot of time preparing for them. This morning while I was packing Kinsley’s diaper bag, our overnight bag, getting the pack and play together, and tidying up the house so we can return tomorrow afternoon and rest without any chores or errands, I had the opportunity to spend plenty of time thinking about something mentioned to me a week or so back.

It was said that Kinsley’s problems are “no big deal” and that I don’t do anything but sit at home [and twiddle my thumbs].

Initially I laughed it off, because I know that’s simply not true. I know that a comment like that could only be made from someone ignorant, someone clueless- someone who has obviously never seen or heard my child breathe, because if they had, they would understand immediately that an airway disorder IS a big deal. Breathing sustains life, and airway disorders threaten that action.

Initially I wasn’t super offended that someone thinks I don’t do anything but sit at home, because once again, that’s simply not true. Furthermore, how would anyone know what is done daily if they hadn’t spent a day in the life of a mom with a child who has special needs, appointments and routines? So, I shrugged it off.

I chose not to defend my position and said nothing because proving what I do on a daily basis is useless- I know that there are a number of people who have seen first hand all the work that goes into taking care of one happy, healthy child, let alone one with health issues. I know there are several people who can attest to the time I have spent on hold, making calls to doctors offices, and scheduling countless appointments to make sure my child gets the care she needs and can continue to develop normally. I know there are many who recognize the struggle we face with finances, travel, work, and life in general, given our situation. More importantly, my partner and I recognize how far the other goes in order to provide our daughter with everything she needs, which is the most important thing here- above what anyone else thinks.

That being said, this post’s purpose is not prove what I do for my daughter. I don’t need to list everything here that I do day in and day out to prove someone wrong. Instead, I am writing this post as a call to action for anyone who looks onto another person’s life making assumptions and conjectures without any actual knowledge about it, to STOP.

Making comments when you don’t know if they are true or false is rude and hurtful and can be especially oppressive to a person dealing with a lot already. If you don’t know something, either ask, or don’t say anything at all.

Quit whispering. Stop staring. Don’t be a coward- find some courage to understand a diagnosis, situation, lifestyle, struggle- whatever it is you are unsure about…until then, you are not entitled to an opinion.

If you haven’t asked me about my child’s diagnosis, or our daily routines, and if I haven’t shared with you what they consist of, you are not entitled to an opinion about either. That aside, why anyone would feel the need to put down a person in a difficult situation they have no true knowledge of and have never been in, is unbeknownst to me. Perhaps before projecting opinions on others’ lives, we should spend a little more time critiquing and improving our own.

Good day, friends- enjoy your cozy Tuesday- I’ll be spending mine calling my job to give them my availability involving next week’s appointments, finishing a few lab write ups, studying for a midterm for the last class I need to get into the nursing program this spring, and completing housework before I fill the Jeep with what our family needs to stay overnight downstate to make our daughter’s appointments tomorrow, you know, because her issues are no big deal. First I’m going to sit at home and twiddle my thumbs all day, though. 😉

Breastfeeding

Let’s talk about World Breastfeeding Week. 

Kinsley was born June 25th. Leading up to her birth I did everything I could to prepare to be a breastfeeding mom. I purchased a pump, I stocked up on storage bags and nipple cream, and I told myself every day that no matter how hard it was, no matter if she couldn’t latch, or my milk didn’t come in for a week, or my supply wasn’t what I’d like it to be, or my nipples cracked and bled, or I got mastitis, I told myself these things would not be excuse enough to formula feed my baby when I have what she needs right inside me. I told myself I would find a solution to any problem we had. I told myself I was not allowed to give up because I wanted so badly to provide for her in a natural way. It’s something that is important to me.

She was born via natural vaginal birth. No drugs, no pain meds, no epidural. Just sweat, tears, and pure love. I was so proud of myself and at that time imagined breastfeeding would be the same way- hard work but worth every bit of sacrifice and resulting pride. 

But I hadn’t planned or even considered the complication we face today. It wasn’t that my milk didn’t come in. It did, and within 24 hours of birth I was making more than enough for her; it wasn’t that she couldn’t latch, the nurses and I came to find out in the third week after her birth that she was a better breastfeeder than bottle feeder. It wasn’t that my nipples cracked; they didn’t, not even from pumping so much. It wasn’t that I got mastitis; I DID, and I figured it out.

I prepared for these kinds of things because they were the struggles I’d read women often had. But our struggle is different.

Kinsley just can’t eat altogether.

Her congenital defects make it difficult, painful and dangerous for her to take any food by mouth, something I am still coming to grips with.

We got to breastfeed for a little over a week, but when her feeding therapy became dangerous and she needed a second surgery, all oral feeds, including by breast, were forbidden. It isn’t me, it’s her, and no one told me this might happen, in fact it was the farthest thing from fathomable. It still is.

But I still want to provide for my baby, even if she is unable to eat right now and for months to come. I said I would do this no matter what, and I will.

So I have been exclusively pumping around the clock, every two hours to provide the volume that her body needs now, which is 2.5 ounces every 3 hours or 20+ ounces total per day.

It’s really hard. Harder than the struggles I was imagining we might go through.

I don’t get to wake up in the night and put her to breast in our bed for 20 minutes and place her back in her bassinet once she’s full, only to turn over and go back to sleep myself. No, instead she sleeps soundly in the NICU while I wake during the early hours of the night to sit on the second bed in our hotel room and turn on my pump. After 20 minutes I unhook myself from it, turn it off and clean the parts. I walk to the second floor and place my labelled liquid gold in the fridge. Then I return to my hotel bed feeling angry at women who complain about waking in the middle of the night to feed their child, feeling the need to scream, “AT LEAST YOUR BABY CAN EAT.” And then I try to sleep for two more hours until I must repeat the process.

The anger and sadness I’ve felt have been hard to deal with, because I want someone to blame and it isn’t anyone’s fault. I feel angry when I see other moms who have it so easy and don’t realize how lucky they are that these struggles aren’t part of their every day lives, when I would do almost anything to struggle with latching issues or milk supply instead of my child’s inability to eat. I sometimes look at my child and feel so sad that she has to eat through a tube in her nose that nick and I have to learn how to put down her esophagus. It’s scary. It’s painful for me, and it doesn’t feel normal because it’s not for many others. But it is for us.

It’s not glamorous. Its not what I imagined. It’s not fun. But it’s honest motherhood.

I have struggled so many days and nights with the blind commitment I made months ago, to continue on no matter what. At night I have sat up in bed with both shields attached to my breasts, wondering why I am still doing this when many women have quit before enduring half of what I’ve been through to do this for my child.

But then I think of how different this is for me, and the perspective I have now because of this. Then I remember how my story can be inspiring to others, and how the pride I feel by providing for Kinsley this way is 10 times the pride someone else feels for providing for their child because the struggle I have endured is so much greater. I remind myself that nothing about this is easy but that’s okay, because these results are so much greater to me and mean so much more in my heart than if we had had smooth sailing from day one. And the bond I have with my child is something no one can even come close to measuring because they have no clue what this has been like.

All that being said, I hope if you’re struggling with breastfeeding this week or in the future that you remember how much more difficult it could be and it helps you keep going. And if you decide you can’t, I hope that you feel confident about your decision. I know what that’s like too.

Recently I was faced with the decision to go to 50-50 feedings (half breast milk, half formula) temporarily because I had to return home for a short time and had no way to transport milk 200 miles to the hospital while I was gone. Even though I knew she would be back on straight breast milk when I returned, it was devastating and I felt at first like a failure, but babies are fed formula all the time, and there is nothing wrong with that. I had to remind myself that you can only do what you can do.

So no matter what, I hope if you’re a mom, breastfeeding, formula feeding, or otherwise, I hope you know that even women like me, who have fought tooth and nail to do this for our babies, even we support your decision whatever it is, because FED is truly best no matter if it’s formula or breast milk and no matter how it’s given- by breast, by bottle, or in our case, by feeding tube.