Month: March 2019

Adulting, Mental Health, Self-growth

If Nothing Else…Be Your Own BFF

by admin March 29, 2019

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We always say to treat others like how we would like to be treated, but the truth is… we often treat others how we DO treat ourselves. And, it ain’t pretty.

Have you ever taken a moment and reflected on how you talk to yourself? Maybe it goes something like this, “Gosh, I’m such an idiot… why did I do that?” or “That is so dumb of me to think this way” or “Nobody likes me because I am too boring” or “I’m not a good enough mom/friend/wife/sister”, or my favorite “what is wrong with me????”

Let’s pause here a minute.

Have you ever said these things to your friends? your loved ones? even a coworker? I’m going to guess, no. But, maybe you have in a less direct way. I see these things happen on social media ALL THE TIME. Mom shaming or just shaming in general is so prevalent and it literally makes me sick.

I have learned over the years that people put others down because that is how they react to themselves when they feel like their behavior is “bad” or “wrong”. We project our own stuff onto others.

I say all of this to bring to light the real issue…. our focus shouldn’t just be on building compassion for others but on developing self-compassion.

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When we can collectively engage in self-compassion, we will naturally give it others. Our focus needs to be on improving our selves in order to have a second order effect on our society.

If you think about it, how can we tell others to have compassion for another when we continue to berate ourselves day in and day out? That is like asking someone to tie another person’s shoe when they cannot tie their own shoe.

 

So, I am sure you are wondering how do we develop self-compassion?? The answer is quite ironic.

Treat yourself how you would treat others.

 

  1. Be your own BFF. We often treat our best friends soooooo much better than we treat ourselves. So, the first step is to be your own best friend forever. Quit being mean to yourself. Watch your self-talk and ask yourself, would you blatantly say this to your BFF’s face? If the answer is a no, then change it.
  2. Honor yourself. Don’t beat yourself up for what you think, feel, and do. This only leads to self-criticism. Honor what you think, feel, and do. Remind yourself that you do your best. And, your best changes from minute to minute. Have empathy for yourself.
  3. Give yourself grace. Be thoughtful and courteous to yourself. Treat yourself with respect and try to not put impossible standards upon yourself. Let it go.
  4. Invest in yourself. When we invest in another person, we inherently build a sense of understanding and love for them, and all that they strive to do, including their failures. It’s important that we do the same for ourselves. Creating a vision board is one way to start doing this!
  5. Build healthy boundaries. So often, people harp about having boundaries with others, which are definitely important, but we neglect the boundaries we have with ourselves. I have been guilty of allowing myself get pushed around by my own self. Honor your desires. Respect your needs. Stop beating yourself up. Allow yourself to take care of your self, say NO when you want or need to. And be quick to catch your negative self-talk.

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Of course, these are all easier said than done. It is going to take time and lots of practice to make these habits. Awareness is key though. When you catch yourself doing any of the self-compassion-killing things, just acknowledge it, and try harder next time.

Stop focusing on all of your “failures” and “shortcomings” and look at yourself as a whole, be mindful of yourself. 

Eventually, that window will become smaller and smaller, and you will be able to practice self-compassion more consistently.

In essence, trying to have more self-compassion is an act of self-compassion in itself. So you are already in the right direction. I wholeheartedly believe that with these “simple” steps, our world could be a better place. Or at least we will treat each other a little bit better and we will love ourselves that much more.

I challenge you today. Hug yourself. Do something you want and need today, purely for yourself. You deserve the best. You deserve to be your best, whatever that may be at this moment in time. 

 

How do you practice self-compassion? I would love to know, leave a comment below!

 

xx, Mary

Feeding Tube, Micropreemie, Parenthood

How I Stayed Afloat As An Unemployed Special Needs Mom

by admin March 23, 2019

When you join the Special Needs Mom group, you are thrown for a loop. Everything changes about your life. Your day-to-day routines. Your relationships. Your work. Your finances. Often times, you have to give up your job to take care of your little one.

This is what happened to me when I gave birth to my micro preemie baby. She was born 3.5 months early and was in the NICU for 5 months.

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During the first month, I was out of work to recover from my c-section…which hurt like heck!

I was fortunate enough to have maternity leave so my job was protected, but it wasn’t paid. I had accumulated sick days to help cover some of our living expenses in the first few weeks. Thankfully I have a wonderful workplace where generous colleagues donated their sick time to help me out too.

When I was able, I returned to work while my babe was in the NICU. But, I was at a lost for when my baby came home. I was out of any paid time off and my position was no longer one I could fulfill. So, I had to make the difficult decision to leave my dream career so I could begin my new job, a stay-at-home-mommy.

After the first couple of months, it became very apparent to my husband and I that there was no way I could have continued to work outside of the home and still provide the care my daughter needed.

Every week was filled with numerous specialist appointments, therapies, and countless hours on the phone with insurance and medical providers. Not to mention the tube feedings and vomit clean up duties around the clock.

I was exhausted and drained every day. Although my husband works very hard and makes good money, we, like most of you, were accustomed to living off two incomes and it was a stressful time to figure out how to continue to pay for everything.

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Above the obvious suggestions of budgeting, cutting out some luxuries, consolidating, purging and selling stuff around the house, and being frugal; it wasn’t easy, but I have actually been able to thrive in my new SAHM role and here’s how:

Disclaimer: Some of the things I mention are SC state run programs, which may or may not be available to you. I still share in that maybe you can research and find something similar where you live.

  1. MEDICAID

    This wonderful yet very complicated resource provides low income families the ability to receive medical services. It is basically like health insurance that is free to qualified individuals. When my daughter was in the NICU, she automatically qualified for Medicaid due to her prematurity. But once she was discharged, that all changed because now it would be based off income. My husband made too much but we desperately needed health benefits for all of my daughter’s medical needs for appointments and supplies.

  2. TEFRA aka KATIE BECKETT

    This is medicaid for children with disabilities. This program only looks at the child, their disabilities and THEIR income, which should be zero. This program has been an absolute life saver so we could continue going to our appointments and getting feeding supplies at little to no charge.

  3. GAS MILEAGE REIMBURSEMENT

    I learned of this from our case manager. The program is through Logisticare, a transportation service for medical appointments. This program offers two things: actual transportation for Medicaid recipients to and from medical appointments, or gas mileage reimbursement if they are being driven by someone. The reimbursement rate is $0.32/mile. It isn’t a ton, but it adds up when you’re driving to specialist appointments and therapies every week and you’re getting money to do what you would normally do anyway. I generally receive anywhere from $100 to $200 a month depending on our schedule.

  4. MEDICALLY COMPLEX CHILDREN WAIVER 

    I learned about this through our caseworker. This waiver allows us to receive in-home nursing care for my daughter at no charge. My daughter qualified for this program due to her prematurity and her g-tube. The interview was fairly straightforward. They asked about her medical conditions and what it all takes to care for her throughout the day (e.g. medications, tube feedings, etc.). This has been such a blessing! I was very apprehensive at first, but I don’t know what I would do without our nurses. They have become like family, and they allow me some reprieve, as well as the ability to do part-time work and side hustles for extra money.

  5. BABYNET

    This program is typically available in all states, but it is called something different. For instance, in Florida, it is called Early Steps. It is a program geared to providing therapeutic interventions for children under the age of 3 with anything necessary for growth and development. Our Early Interventionist comes once a week to provide therapy to help L meet developmental milestones, such as grasping, climbing, walking, talking, etc.

  6. HEALTH INSURANCE PREMIUM PAYMENT (HIPP) PROGRAM

    This program is through Medicaid and is a life saver too. Currently, we have private health insurance through my husband’s employer, but since it is a smaller company, our monthly premium is insane (like a mortgage insane)! We have Medicaid as our secondary insurance, and so Medicaid has this program that will pay for the child’s insurance premiums. The notion is that this would be cheaper than being our primary insurance and paying for all of the child’s claims in fully.

These resources are beneficial in two ways: by giving us the medical support for services and supplies; and giving me the time and energy to seek out part-time employment.

I never thought I would ever need to take advantage of resources like these, but here we are. Knee deep in specialist appointments, therapy sessions, and down one full-time income. I am SO thankful that there are programs like these because honestly things would be much more stressful. Now, I am a work-at-home-mommy, and I love it.

If you are in SC, feel free to reach out and leave a comment with questions or resources. If you are in another state and have suggestions on resources, share the love below so other mamas can benefit!

xx, Mary

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Mental Health, Micropreemie, NICU

“This Is Us” in the Preemie World

by admin March 19, 2019

NBC’s hit show, This Is Us, has captured many hearts since its debut in September 2016. Recently, this show has aired an episode where Kate has a preemie at 28 weeks gestation, and it has had created an uproar amongst the preemie community all across the world.

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Some moms have stated, “I was crying so hard…it hit too close to home”, and others have blatantly said they “can’t bring themselves to watch it”.

Moms who have had preemies all experience trauma. Their birthing stories are far from the normal sweet moments we all envision after becoming pregnant. Many moms are hospitalized days or weeks prior to try and prolong pregnancy through the use of medications and medical interventions. Others are whisked into emergency surgeries due to life threatening complications such as HELPP or placenta previa. All of these moms are frightened down to their bones that their baby may die or live with life threatening or altering conditions.

If the birth was not traumatic enough, the aftermath may even be worse. Typically, these preemie families spend months in the Neotnatal Intensive Care Unit (NICU) afterwards as their baby learns to do the most basic functions, such as breathing, eating, and keeping their heart rate going.

Here, these families are greeted with so many heavy emotions, fear, panic, worry, guilt, exhaustion, confusion, sadness, helplessness. The list goes on and so does the time in the NICU.

Many preemie moms share that even after their discharge from the NICU, they are scathed for life. The trauma continues. Often, these preemie babies do suffer from lifelong conditions (eg cerebral palsy, genetic abnormalities, feeding disorders, etc) that lead to a life of special needs no mom ever imagined.

When Kate’s water ruptured spontaneously, my heart immediately sank. First, I feared the worst, but then, I felt this weird jealousy. I KNOW, RIGHT? It was as if I was like, “yeah, no way… she will probably carry to term. Lucky her.” Now, don’t get me wrong. Never, EVER, do I wish the NICU upon anyone. But for a fleeting moment, some of my darker emotions from the early NICU days came over me.

Then, Kate and her husband, Toby, meet their baby in the NICU and the tears flow. They flow hard. My instant reaction was to shut it off but I forced myself to watch it. I didn’t want to avoid my fears. So, I grabbed my tissues and sobbed along.

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NBC / Rob Batzdorff

NBC did a wonderful job capturing all the nuances of the NICU, the beeping, the wires, and most importantly, the baby. It all looked so real.

I don’t know about you, but I empathize so hard when I watch This Is Us. It gives me all the feels, and this episode was no exception. All of my emotions came rushing back, the sadness, the fear, the worry, the despair…all of it. I was scared for Kate and Toby. Not just for the immediate situation, but what was to come.

I just kept repeating, “Oh my god…he is so small…. he is so tiny”

It made me realize how small my L was, but I never “knew” it. Of course I knew how much she weighed and saw her every single day, but it never truly registered until that night. It seriously made me think about how numb I was in our NICU days.

My post-show reactions are conflicting. I hate that it was so hard for me to watch it. But, I love what this episode has done for everyone else.

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My sweet L (26 weeker) at just a couple of weeks old

It has given us preemie moms a voice. It has shown the world (the millions of viewers at least) a glimpse of our reality. Of course, I have yet to see what is to come on the upcoming episodes, but I am inclined to think that it will increase the awareness of our journey and let non-NICU families “feel” and understand our world a little better. And, hopefully it will bring to light the importance of mental health during a medical trauma that many have been unaware of up until now.

Unfortunately, moms of preemies, including myself, will likely continue to be triggered through the upcoming episodes. I know I have cringed a little at the thought of the next episode but I am also excited to join Kate’s journey (if you can’t tell already, I’m the type to get real involved in shows 🙂 ).

NICU PTSD is real. Certain sights, smells, noises, and situations can trigger strong emotions, and even make functioning difficult for some. But, I’m here to tell you that it shows up in all degrees. It isn’t always the clinical PTSD we are familiar of when we think of combat veterans. It is in the mom who cries and trembles after a they watch a television show of a NICU. It is in the mom who spends countless hours taking care of her special needs child every day but then falls apart at night when she finally gets a moment to break down.

I don’t say this to scare or diagnose. Actually, quite the opposite. I say this to validate our experiences as preemie moms. And, to know that regardless of the degree of PTSD some of us walk around with, you are not broken. You are living through a very traumatic experience. You are not crazy. You are not alone. You are most definitely not a problem to be fixed, but rather healed.

These recent episodes have helped me to see that I, too, have some degree of PTSD from our NICU journey, and that is OK. It is OK to not be OK, and I will be OK.

It is my hope that these new episodes will nudge some moms out there to seek professional counseling to work through their experiences. I cannot stress enough how vital it has been for me to heal through counseling.

And for those who are already working through their experiences, I hope this helps them to feel validated and just a bit more desensitized to the trauma so that each show day gets just a little easier to bear.

I would love to hear how this episode has been for you. NICU mom or not. All experiences welcome. Leave a comment below!

xx, Mary

 

Feeding Tube, Parenthood

Everything You Need as a Tubie Parent: Emergency G-Tube Kits

by admin March 11, 2019

Having a child with a G-Tube is not your typical motherly experience. Your lifestyle is… different. Not bad, just different. Whether your child has a g-tube because of genetics, prematurity, or an illness, it is an unexpected curve ball. I know you can’t plan for everything, but having a g-tube emergency kit is an absolute must. It will ease your mind, trust me. You have enough on your plate as it is.

Here are the g-tube emergency kits I have created. The first is one to toss in your diaper bag. The second is one to keep in your cars for the big emergencies, like a long trip and potential strandedness.

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Some might think having two different ones may be much, but in my opinion, you can never be too prepared when you have a special needs child.

Mini G-Tube Emergency Kit

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Johnson & Johnson Mini First Aid kit – you can find these for $0.99 at Walmart or Target

This little box is perfect to stash in your purse or diaper bag. It is big enough to house the essentials in case you need to replace your babe’s button, but small enough to not take up so much space in your bag.

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Filled with all the essentials should I need to replace her G-tube

The essential things you need to have with you in case of an g-tube emergency:

  1. Alcohol wipe You never know when you’ll need it, especially if you have dropped any items
  2. G-tube button Ours is a AMT Mini One
  3. Lubricant I got this from our g-tube kit, but you can easily use chapstick, or so I am told
  4. Blue Tee Not exactly sure what this is technically called but it looks like the tees you use in golfing. You use this to insert into the button to keep the shape’s integrity as you insert
  5. Syringe I include a 5ml syringe so you can inflate the balloon with water
  6. Extension Important if you forget yours, lose it, drop it in nasty stuff, and need to give baby some meds, food, water, etc.
  7. Gauze Something clean for absorbing or wiping away the area
  8. Bandaid This is important in case your balloon has malfunctioned and you need to tape down a button into the stoma so it does not close up. The stoma can close rather quickly if nothing is inserted, so it is important to keep the stoma open to avoid another surgery

Big G-Tube Emergency Kit

The next G-tube emergency kit is for the bigger emergencies, like being stranded on a trip without supplies of any sort, or you need to something to hold you over for 24 hours.

This is a Red Cross First Aid case I got from Target one year. It was free as long as I purchased three first-aid items (e.g. bandaids, Neosporin, etc.).

I just love the cute colors and design!

 

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Here is my big emergency kit opened

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All of the items in my big emergency g-tube kit:

  • Nourish ready-feed meal replacement L uses this as a part of her daily diet. We feed this plus a homemade blenderized diet
  • 60ml and 35ml syringes I bolus feed L’s feed now via syringe, other syringe is for water flushes
  • Infinity feed bag I have this in here just in case I need to use our pump (not pictured, and assuming I have it but if I don’t, I have my large syringes) to feed over long periods of time
  • AMT Mini One Extension
  • AMT Mini One G-tube
  • 5ml syringe to inflate g-tube balloon and/or administer medications
  • Lubricant for inserting button
  • Antiseptic wipes
  • Split Gauze To dress her stoma
  • Waterproof Bandaid In case we plan on getting wet
  • Tape If the balloon will not inflate and I need to tape the button into the stoma so it won’t close

 

There you have it folks. Both of my G-tube emergency kits, big and small… both of my sanity savers. I remember in my early tubie days, I used to feel so anxious about things going wrong and not having the tools on hand when out and about. After being a tubie mom for 15+ months, I have had to use these a handful of times. Thankfully, I never needed to scramble or freak out too much because everything was right there.

Now, I never leave home without either of them, and I no longer feel anxious about potential tubie emergencies.

I hope this was helpful to some, and that maybe you will feel a bit less stressed as a tubie parent. 🙂

 

xx, Mary

What’s in your g-tube emergency kit? Leave a comment below 🙂

Adulting, Parenthood, Personal

Why Making Friends Is So Hard As An Adult

by admin March 3, 2019

 

Confession: I am a 34-year-old mom and I don’t really have any much friends.

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My birthday just passed and as I was wished happy birthday throughout the day, I realized they were all from afar. Five years ago, my husband and I moved from Florida to North Carolina, and I still struggle with creating a circle of friends here. I still keep in touch with my group of friends in Florida but it just isn’t the same.

I keep hearing the same story from many other women that they have recently relocated and are having the hardest time building their own village. And, no…we are not those crazy chicks. We are normal, down-to-Earth, funny, and real people that legit struggle to build close and meaningful relationships as an adult.

After my ritualistic boo-hoo cry on my birthday (I know, I know.. it sounds so pitiful but my birthday has always been a sensitive time for me, but that is another post), I was on a mission to find out why it was so hard to make friends at this age.

I went through the usual questioning, Am I that unlikable? Am I a bitch? Am I that closed-off? I couldn’t understand why I felt so lonely, though sometimes I tout that this is my choice. Truth is, we all need friendships. Including myself.

First, I had to think about what a friendship meant to me before I could go digging at what was going awry.

For me, a meaningful friendship is one where you can be your self and not be afraid to verbalize your crazy thoughts for fear of judgment. It is where you know they will be there for you when you sit on your kitchen floor in tears about x, y, z, and they will know what to say to pick you back up. It is having someone to just watch shows with without any expectations to entertain. It is having support in any troubles that come your way, and having a sounding board whenever you feel uncertain. It is having someone to experience life’s joy and learn new things with. It is having someone you genuinely care about and want to add to their lives. It is having someone who accepts you for who you are. It is all of these great things and then some.

But, the problem is… we have had X amount of years to develop this schema about what a friendship should be and we sometimes (me all the time apparently) go into each interaction with such expectation. It isn’t fair to either parties. It is bound to lead to disappointment and feelings defeat, hopelessness, and loneliness.

Okay. So don’t have these high expectations. Got it. Done. But, just lowering expectations wasn’t enough…

I had to learn how to even build a meaningful relationship… like how do you even do that? Most of my friends are my family, old school friends, people who I grew up with. I can’t just get more siblings, nor could I re-grow up. So what now?

A friendship is built on trust first and foremost.

Not only trust that your friend won’t betray you, but trust that you can be your REAL self and not be judged for your silliness, or your ugliness. How many times have we felt like we could not be our authentic selves and suffered through this superficial friendships that make our skin crawl? Me, too many times.

With lifelong friends, you have had years to build this trust. You have had countless opportunities to test this trust, but with new potential friends, we carry this expectation in without allowing the time to grow this deep trust and it results in this oh-super-fun-ficial-friendships-that-make-you-gag.

I firmly believe a lot of what we think others will do, has a lot to do with our own stuff. If we think others will judge us though we don’t have anything to base this off of, it is likely a result of our own baggage… our own self-talk. As much as I practice metacognition, and self-love, I still make self-judgments here and there, and I unknowingly project this onto others, making potential friendships unappetizing.

Another thing I am noticing is, being a mom, and just adulting really makes it so hard to make friends.

Every day I am doing a million and one things, and I just don’t have the time to “hang out”. A lot of my friends came from just being somewhere together, such as school, or growing up in the same place, but when everyone is new to you and you are busy taking care of life, your energy and chances to hang out are next to nil.

Adding a traumatic life event further complicates things because sometimes it can be hard to connect. And I don’t know about you, but my threshold for BS is real low. So there might be a chance I have walked away from things that I did not feel worth it. This isn’t wrong and can be a healthy thing!

I thought I had this wonderful friendship here, but unfortunately it has hit a turning point where feelings were hurt. I am realizing it was either not a strong enough friendship and/or that it was with someone who does not want to or cannot discuss through difficult things. And, I am learning that is OK. Not every attempt will pan out. But it does not make this futile.

I wish I could give step-by-step instructions on how to have more meaningful friendships or on exactly how to be 100% OK with no friends, but that wouldn’t be helpful nor feasible. We are all different, with different lives, and different needs. But if you are like me, who crave those deep friendships but are just too dang busy or tired these days, then the change must come from within.

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So what does this all mean?

It means I will continue to cultivate the meaningful friendships I already have. Thankfully technology is on our side, so texting, calling, and video-chatting are at our fingertips. And, making plans to visit a few times a year is a priority of mine now.

It is not to say that making new friendships is off the table for me, it just means I will not hold each new-potential-friendship with an expectation destined for failure–but with a fresh new exciting start with tons of potential for all-kinds-of-friendships. Not all friendships will become those ride-or-die kinds.

It means that I need to keep it lighthearted and allow things to grow, and expect that it will take work on both ends. All friendships require this, though our lifelong ones don’t feel like it did because a lot of the early hard work happened many moons ago, and now you are in maintenance mode.

So, the next time the opportunity to have a friendship knocks on your door, answer it. Answer it with open arms and a light heart. And, if we have the chance to cross paths… you know where I stand. So…don’t make it weird, k? 😉

And maybe, the fact that I continue to have these meaningful relationships from afar means even more. Blessed, I am.

xx, Mary