This wonderful, sweet, beautiful, precious family needs all of our prayers. 🌸🌼🌹🌼🌸

Jubilee Charlotte Love

Yesterday was a big day for Jubilee. We managed to be able to bring her outside. It took a lot to get this picture. It wasn’t as simple as just walking out with a baby in a carrier or your arms. We had to have a nurse& and RT come with us. Along with them came Jubi’s IV line, 2 large tanks of oxygen, and her high flow breathing support. This was all wheeled along with Jubi’s stroller.

Jubi was freaking out the whole way down. She was confused as to what was happening when she had to get strapped into a stroller that is made for a baby 5 times her size. I couldn’t enjoy myself because of her crying. All I wanted to do was to hold her in my arms the whole way down. Again, that wouldn’t have been any easier due to her entourage of medical…

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A guide to good self-care

I love this. While I did not come up with it, nor do I wish to take credit for it, it is brilliant.  And very important to remember for people who continually feel as if they have to be a certain way for people to ‘get’ how they are feeling.

An amazing guide to good self-care:
  •  Are you hydrated?  If not, have a glass of water.

    Have you eaten in the past three hours?  If not, get some food — something with protein, not just simple carbs.  Perhaps some nuts or hummus?

    Have you showered in the past day?  If not, take a shower right now.

    If daytime: are you dressed?  If not, put on clean clothes that aren’t pajamas.  Give yourself permission to wear something special, whether it’s a funny t-shirt or a pretty dress.

    If nighttime: are you sleepy and fatigued but resisting going to sleep?  Put on pajamas, make yourself cozy in bed with a teddy bear and the sound of falling rain, and close your eyes for fifteen minutes — no electronic screens allowed.  If you’re still awake after that, you can get up again; no pressure.

    Have you stretched your legs in the past day?  If not, do so right now.  If you don’t have the spoons for a run or trip to the gym, just walk around the block, then keep walking as long as you please.  If the weather’s crap, drive to a big box store (e.g. Target) and go on a brisk walk through the aisles you normally skip.

    Have you said something nice to someone in the past day?  Do so, whether online or in person.  Make it genuine; wait until you see something really wonderful about someone, and tell them about it.

    Have you moved your body to music in the past day?  If not, do so — jog for the length of an EDM song at your favorite BPM, or just dance around the room for the length of an upbeat song.

    Have you cuddled a living being in the past two days?  If not, do so.  Don’t be afraid to ask for hugs from friends or friends’ pets.  Most of them will enjoy the cuddles too; you’re not imposing on them.

    Do you feel ineffective?  Pause right now and get something small completed, whether it’s responding to an e-mail, loading up the dishwasher, or packing your gym bag for your next trip.  Good job!

    Do you feel unattractive?  Take a goddamn selfie.  Your friends will remind you how great you look, and you’ll fight society’s restrictions on what beauty can look like.

    Do you feel paralyzed by indecision?  Give yourself ten minutes to sit back and figure out a game plan for the day.  If a particular decision or problem is still being a roadblock, simply set it aside for now, and pick something else that seems doable.  Right now, the important part is to break through that stasis, even if it means doing something trivial.

    Have you seen a therapist in the past few days?  If not, hang on until your next therapy visit and talk through things then.

    Have you been over-exerting yourself lately — physically, emotionally, socially, or intellectually?  That can take a toll that lingers for days. Give yourself a break in that area, whether it’s physical rest, taking time alone, or relaxing with some silly entertainment.

    Have you changed any of your medications in the past couple of weeks, including skipped doses or a change in generic prescription brand?  That may be screwing with your head.  Give things a few days, then talk to your doctor if it doesn’t settle down.

    Have you waited a week?  Sometimes our perception of life is skewed, and we can’t even tell that we’re not thinking clearly, and there’s no obvious external cause.  It happens.  Keep yourself going for a full week, whatever it takes, and see if you still feel the same way then.

    You’ve made it this far, and you will make it through.  You are stronger than you think.

    This post is available as a downloadable one-page PDF here.


My Greatest Loves

Imagine for a second that the waves are rushing at your feet, or the fresh grass is cool between your toes.  And the air smells like hydrangeas and lilacs, and a few gentle clouds leisurely roll on by.  Now hear the sounds of the water, and the bees gathering their nectar from the flowers and head off towards the skies, and you’re smelling the grass beneath you.  You are curled up in a hammock, swaying ever so gently, while your favorite book that you swore you would only read a page or 2 has now been swallowed up to chapter 16.   Sounds so heavenly, right?

Now imagine your baby smiling for the first time. A really big smile, not one associated with gas and bodily excretions.  And hearing her laugh and giggle, and discovering that her feet can actually fit in her mouth! Or your son has pulled himself up for the first time and is almost, maybe, kind of at the point of taking his first real step! And hearing “mum mum mum” over and over.  And your son with his little head that fits so perfectly on your shoulder,  just like a perfect fit in a puzzle, and falls asleep in that moment. Pure magic.  To me there is nothing better.

My kids are growing way to fast.  By September, my son will be starting college and my daughter will be in grade 11.  I am lucky.  They still like me, and want to hang out with me.  They still like to snuggle up (more so my daughter, but sometimes I can sneak one in with my son) and watch a movie.   And I can read them like a book.  These two are my favorite stories.  My unfinished work in progress, only there really is no editor. Just the whole wide world to share their story with.   No rough drafts to correct, no revisions, just one perfect, final copy.   Well, MY perfect final copy. I would trade any beach, grassy meadow or hammock just to BE in this moment with them in this life.  And all the hydrangeas in the world don’t have nothin’ on the sweet smell of my beautiful daughter.  She smells like hope, dreams, promises, and cotton candy lol.

My kids will always be a greater reward to me than any diploma, work recognition, likes on a blog post, or followers to the never-ending list of social media.  We have trudged through shit canyons together and always smell like strength and accomplishment.  This is my heaven.  All the positives and hugs and love and comfort and self confidence that I was never given as a child are now finding their home in my children.  They help homeless people, they shared lunches at school when they were smaller, they help out their friends now by offering them a safe place to be, and always stand up for the underdog.  They work after school jobs, have money saved, and respect themselves and others.  My daughter volunteers any chance she can get, and my son is the first one to reach into his pocket to put money in the kettles at Christmas.

These are my greatest loves.  Stronger than any ocean wave, cooler than any fresh green grass, better than any New York Times best seller.   Nothing beats “mom”, or “momma” which my daughter still calls me quite often (which i love more than clear blue skies)..  Not even “free cheesecake”.  And they are almost cooler than a hammock.  Just kidding. Maybe.  Hammocks are comfy.  And I can always eat cheesecake with my kids.  They might even be nice enough to buy it for me. 😊🍰

Let’s all live a little more, and hugs our babies a little tighter: young, old, big, small, furry, purry or otherwise.