Tag: Family

Broken

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In Japan, there’s a term called “Kintsukoroi”; it refers to broken objects which are repaired with gold. This way, the flaw is seen as a unique attribute to its history and adds to its beauty.

Shortly after my first surgery, when my small intestine was removed and I was told I would never eat or drink again, I was in ICU and my mom was there visiting. I was obviously processing this grim news and spent most of my waking hours in tears. I was broken in every sense of the word. My mom took me in her arms, as much as she could being that I was attached to multiple IVs and oxygen, and with her head next to mine she whispered to me that she would take me broken over not having me at all.

Although these words comfort me on a daily basis, it still hurts my heart. I’m broken. I have pieces missing. And no matter how far I may come with medications or surgeries, I will forever have the scars that remind me that I am and forever will be broken.

But really, who isn’t broken in one way or another?

I love the idea, however, that maybe this brokenness can make me more beautiful. That gold can be added to these cracks and scars. Who doesn’t like to add a little bling to their life?

Ok, physically I’m not a fan of the scars that have been left on my body. But I have noticed how my being broken has changed me in other ways. I don’t get offended easily – it’s not worth the energy that it uses up. I make sure to spend some quality time with friends and family and I get family photos any chance I can. I’m more patient now. I’ve learned sympathy is a great asset to have. I’m slowly outlining my scars with gold. Making my brokenness beautiful with things I may not have had in my life if my life didn’t take this turn.

I woke up from a dream last week full on sobbing and I whispered “Jesus, I’m too broken. I need you to carry me.” I don’t remember what the dream was, but I’ve been hanging on to those words all week. “I’m too broken. Carry me.”

I’ll never get through this on my own strength. I’ve had to rely on family, friends and my church. Now I really need to let Jesus carry me for the time being and let more gold fill in the broken parts of me.

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What I Post On Facebook vs My Reality

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We all know that what we see on Facebook isn’t always what exactly happens in real life. Everybody posts the good stuff. They want to show off, show the progress that’s happening in their lives, and boast the highlights of what’s happening in their life. Well, here’s the inside scoop of what my reality actually looks like vs what I like to show on Facebook.

When I’m Put Together vs My Everyday “Sick” Look

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Anytime I go out in public or have people come over, I make sure I look good and 9 times out of 10, I post a selfie from that day because I feel good. I feel like garbage 99% of the time, no point in giving people a visual of what I’m actually feeling on my down days. I’ve heard “but you don’t look sick” so many times. Trust me, if you could sneak a peek at me while I’m at home alone, you wouldn’t be saying that! And there’s a reason for that – I use a lot of my energy to look good because it helps me feel good. So why use up that energy on days that I’m A. not feeling well and B. sticking around home anyway. I’ve limited the audience to a very select few who get to see me on my terrible days. It’s not how I want people to see me.

To get ready for a day out or for a visit takes an insane amount of energy. Any of you who deal with a chronic illness or pain totally feel me on this one. I can’t simply jump in and out of the shower and get ready quickly. My routine takes a long time as I really need to pace myself. Simply standing in the shower for more than 5 minutes winds me – forget the days I need to actually shave my legs! I’ve needed to put a chair in the bathroom to do my hair and makeup. I even get tired holding my arm up as I dry my hair. My outfits are carefully chosen, making sure I wear something that flatters me as my surgeries have left me with many lumps and bumps. I always need to rest whether that be just sitting down or sometimes even laying down, as this entire process exhausts me.

Some of you may say “well why waste so much energy?” I’ve come to discover, for myself anyway, that if I’m always in my pyjamas and not put together, I feel sicker. I do try to at least get dressed on days that I stay in, it doesn’t always happen, but even just putting jeans on helps to change my mindset from being ill to just really tired.

Going All Out For Projects vs How I Pay For It The Next Day

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I’ve always loved projects. I love learning new skills. And although I’ve had to put many on the wayside because of my energy levels, I still need to indulge in them from time to time for my own sanity, even though I know that it’ll cost me greatly in energy.

Just the other day, I decided to try my hand at making marinara sauce. I got the recipe from an Italian, so it’s got to be the real deal, right? The amount I made came out to about 35 litres which was way more than I anticipated, but we’ll be stocked for pasta and pizza sauce for a while now. It was a delicious success! Thing is, three days later and I’m still exhausted from it. I loved making it though, even if it means I’m out for the count for the next week. I love the aftermath of a finished project – is there anything better than seeing a task be completed?

I knew that this would tire me out, but it still surprises me when I get knocked out for so long from something that in the past a good night’s sleep would’ve cured.

Going Outside With My Daughter vs The Rest Of My Day With Her

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I like to share a lot of pictures of my days with my daughter. Although the plan was to go back to work once my maternity leave was up but plans changed when I was diagnosed with Ultra Short Bowel Syndrome. I am very much enjoying the extra time I’m getting to spend with her, but any of you who have spent any amount of time with a toddler knows that they never stop. Like ever. I wish I could do more with her. I wish we could spend more time outside and on the play structure. But after 20 minutes max of playing outside, I’m tapped out. I physically am unable to continue. The rest of the day is spent watching her play from the comfort of my couch.

I’ve tried play groups, but chasing after her for 2 hours is impossible. I’ve looked into swimming lessons, but I can’t go in public swimming pools as it could cause me to get an infection. We have most of our play dates here as I know the environment and I can more or less control it.

Thankfully our living room closes off from the rest of the house, so we spend our day in there. Me on the couch and my daughter playing with her toys. She is a very independent child and is perfectly content playing on her own. I really wish I could keep up with her, but it’s just not possible.

Events I Go To vs How I Prepare Leading Up To The Event

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I love sharing pictures of events I get to go to. It gives the illusion that I do have a life sometimes. What you don’t see however is how exhausting the smallest event can be for me. Each incapacitating me for at least a couple days afterward.

Being chronically ill has changed pretty well everything in my life, but I still do my best to make it to events such as concerts, weddings, trips, etc. I do however have to plan ahead for them differently than I would have previously. I went to a concert back in July and literally stayed in bed until supper time so that I would have the energy to stay at the concert as long as possible. At weddings. I unfortunately don’t have the energy to dance anymore, and I miss it, but I stay as long as I can and at least try to enjoy the dinner. And my trips so far are planned around leaving the hotel mid-morning, napping for 3 hours in the afternoon, and returning by 8pm for the night. None of these are ideal, but if it means I get to enjoy these moments, then it’s what I need to do.

My Family vs My Family

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I brag ALL THE TIME on Facebook about my family and it’s the same in reality. My husband is the most loving, caring and supportive man I could’ve ever asked for. Those pictures of my daughter always smiling, that’s pretty well how she always is. My family brings me so much joy and happiness. They keep me grounded and they give me hope for the future. There’s no point in showing it any differently on Facebook because they’re already pretty freakin’ great!

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I Can’t, but We Can

I’m a very blessed woman. I have always had a community of some sort around me. Through every walk of life, I’ve at least had one person to turn to and as I grow older, my support systems have grown – both in depth and numbers. More importantly though, I have come to appreciate them so much more in the last year.

I have my family – my husband and daughter, my parents and siblings, and my in-laws. I also have my friends that may as well be family, those both far and near. These are the people who were the first ones there when I was sick. Waiting with Joe while I was fighting for my life in surgery. Hopping on the first flight to be by my bedside day in and day out. Friends who, over the last year, I have been able to call while in tears because I am so fed up with my situation. I realize not everyone has family and friends like this, but I have been immensely grateful to have these people by my side.

There are so many other forms of community out there though, and take it from me, no matter what you’re going through, you need community. Whether to help you celebrate or grieve different situations in your life, they are a necessary part of it.

Church – I found a great community in my church and I literally had hundreds of people praying for me, feeding my family, and helping care for us in many ways while I was hospitalized. These are the people who have held on to hope and faith and kept praying for me when I just wasn’t able do it for myself.

Online Community – I so love and appreciate the fact that everything is online nowadays. I have been able to connect with people from all over the world who also rely on TPN as a form of nutrition. Through Facebook, I’ve been able to meet a mom here in Ottawa whose daughter is on TPN (and am so looking forward to meeting her daughter). I’ve also become great friends with a woman down in Texas who went through a very similar situation as mine last April and hope that we can one day meet in person. I am forming friendships that I never would have found otherwise. They are under very unfortunate circumstances, but nevertheless, I am very thankful for my new friends.

Being diagnosed with a rare illness makes it hard to find answers (my doctors don’t have answers to many of my questions), and through online forums I’ve been able to ask many questions to others who have been on TPN for longer than I have. The best resources have been through these online communities.

Even just through Facebook and writing on my blog, I have regained contact with old friends who are also struggling with a variety of life’s hardships. It’s interesting how when life seems to dump on you, it can bring people together. Hurting people tend to know how to encourage other hurting people, no matter how different their situations may be.

Support Groups – The last form of community that I want to mention in this post, is support groups. This isn’t necessarily finding a group that is going through something similar to what you are, although it can be, but it’s also to find a group that will uplift and encourage you and that you can do the same for the others in the group.

I’ve been going to a Mom’s group which has brought into my life such wonderful women. Although we all come from different walks of life, it’s 2 hours a week where we can forget life’s troubles and just come for a laugh and a good time. It’s something that I really look forward to going to and again, it’s introduced me to people that I may not have necessarily gotten to know.

I’m also starting a book group with a few others to study Walking with God through Pain and Suffering by Timothy Keller (check him out, I love his books)! This is obviously a very different type of support group than the one I previously mentioned, but I really didn’t want to go through this book alone. I know that it’s going to bring about some very difficult issues to deal with and why not go through it with other people who are also grieving different losses in their lives.

There are so many different forms of community out there. You don’t have to be a part of a big family or a church. You don’t have to be ill or going through a difficult time. But everyone needs a community of some kind. It’s so important and so necessary for the soul.

I really don’t think I could have gotten through this last year without my different communities. They’ve all played their parts and for that I will be forever grateful.

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