Showing posts with label special needs parenting. Show all posts
Showing posts with label special needs parenting. Show all posts

Thursday, January 28, 2021

Love God and Love People

Words matter, opinions matter, but we matter so much more. 

These last two  months have been rough for many of us. Politics and prejudice  have divided us in ways I would have never believed. It’s as if the ocean of humanity is stuck in low tide.  We’ve spent so much time stewing in our own corner and now our water is foul.  Our little ponds have become isolated and damned up: the water has turned rancid.   

 I can see a way to change our shared predicament.  My idea is hard when your feelings have hurt.   It’s hard when your ego has been devastated by someone you care about.  It’s hard when you see how passionately others cleave to their opinions and physically, emotionally, and  spiritually  harm you or people you love. It’s just hard.  My response: be kind. 

This isn’t a new idea, but it offers us the freshwater we all
need.   Every act of kindness brings with it a small ripple. And we need the ripples.  Every ripple influences the tide. 
Every single act of kindness offers the tide of  acceptance we all crave. And what we need more of today is the mighty power of kindness.  

The tide of change is coming and it is time for us create a wave. 

Let’s put our opinions about others back into our pockets  and focus on the amazing miracle each of us are.  The ripples we make need to be positive as there is a true deluge of ugly negativity all around.  If we don’t create positive ripples, then there will continue to be negative waves.  

Most people that spew negativity are hurting or have been hurt.  Or, they are driven to share their opinions so that they can feel justified and right. We don’t have to swim in every pool.  

I’m going to focus on spreading kindness and throwing out any negative thoughts that float through by brain.  Here are my three goals for every day of February: 
1. Give three random compliments.  This is one easy way to add more positive light into the world. Ripples. 
2. Focus on listening.  Truly listening to those around us.  If words matter shouldn’t we practice listening? Offering one person our attention with a positive intent is a gift to us all.  Ripples. 
3.  Concentrate prayers/kind thoughts/meditation on people who have hurt me, or even disagree with.   This may just mean sending positive light out to those who are spewing darkness. Ripples. 

Practicing kindness is one way to recognize the amazingly complicated and wondrous people are. In God’s eyes, we are magnificent- even when we are cantankerous.  Even when we are afraid. We are loved even when we are mean, because there is no “even though”.  We are all loved-perioT.    Our attitudes matter, but we matter more.  
Be kind and love people.  
We need each other. And it’s time to be kind. 
Attached is one of my new favorite songs.   It’s just this simple.

Friday, November 13, 2020

"I'm Okay" is NOT Okay

 

      Here is how many conversations go with my peers and students at school: 

"Hey, haven't seen you in awhile. How are you?"

"I was out for two weeks.  Two in my family had the virus. Everyone is better now, so I'm okay, how are you?"  Her eyes were surrounded with heavy bags and she seemed smaller.  Her answer of okay or fine brought a halt to any further exchange.

"Wow.  Glad they're getting better......" 

    It was on a Monday, when I am excited to see my peers and students, that a similar exchange happened.  I had this urge to follow this student and ask again how she is doing.  So, I did.   

    "Wait. I don't feel like you really told me how you are doing.   I ask because I care.  I know you've been in quarantine and I know that can't have been easy.  So, how are you doing now that you are back at school?" 

    We had a lovely conversation about what she had been through, quarantining in her home where she stayed in her room, trying to safely help with house work, and feeding her younger siblings.  Plus she had schoolwork of her own as well as the work her siblings needed to complete.  

    Missing this much time in our regular daily routine is not easy.  Even if you maybe don't enjoy all of you classes, or your peers, or your work in general, the disruption of repetition within your schedule negatively impacts our own social and emotional health.  

    I think many of us are carrying around a lot of stress, anxiety, loss, and fear.   There are so many unanswerable questions in our daily lives, that there is a pervasive feeling of  uncertainty.  Because of this, I believe we need to practice truly checking in with the beautiful people around us.  

    According to Anna Goldfarb, in her New York Times article, we need to be using more open ended questions, such as: "How are things?" or "Is anything on your mind?"  One of my current favorites, "what is making you smile today?"

    Not only do we need to ask open ended questions, we also need to know why we say we are okay or fine when we really aren't.  It's so easy to keep the veneer up and shine people on when we really aren't okay.  Really aren't fine.   We're sad, scared, anxious, or a myriad of other emotions that mean we are not okay.   But keeping that invisible mask on makes us feel safe somehow, or even protected.  For me, it is easier to dismiss what I am feeling or going through, if I don't talk about it.   Then I store it away.  That is a recipe for being even less okay.  

    It's okay to say I am not okay, but I am working on it. But I am learning to let myself cry. But I am trying.  But I see the beauty in everyday.  But I know that this storm will pass.  But.... It’s also okay to say, “thank you for  asking, but I can’t talk about it right now.  Check in on me later today.”  

    We already have so many things separating us; I believe it is time to open up and work through our struggles together.   We all have something we are dealing with and maybe we can share the load.   Every day the focus needs to be on how to lift and shore ourself and others up. 

    Rachael had her emergency diverticulitis surgery six months ago.  We have been holding our breath since her surgeon said that they may have to postpone her surgery until sometime in the spring.  The local hospitals are struggling to meet the needs of the COVID cases as well as the need for scheduled and elective surgeries.   As of today, 11/14, her surgery is still a GO for Wednesday, 11/18.  Praying and hoping that she can get the last of the infection removed and get everything in her belly safely connected once again. She will have to be alone while in surgery and afterward.  Please lift the doctors, nurses, and all of our wonderful hospital staff and Rachael up as this will be a tough week for her.  

    Praying that you can all see the beauty in sharing and lifting each other up.  Be kind and stay safe.  You are loved.  

https://blogs.psychcentral.com/imperfect/2020/07/why-we-say-im-fine-when-we-arent/

https://www.nytimes.com/2020/07/28/smarter-living/coronavirus-how-to-check-in-with-a-friend.html?auth=link-dismiss-google1tap


Saturday, November 7, 2020

Family

       When Libby’s body started quitting on us and her brain decided to show its damage in 2009, it was both a struggle and a gift to get to school everyday.  Between new physical, emotional, and intellectual challenges and the rough rodeo that is medical insurance I was a mess.  A lost mess.  
      My school family  were amazing.  They sent us to each new children’s doctor, new hospital with love, hope and extra money for food. I had to learn to lean on other people.        

       I’ve always relied on my God, my Grandma and myself.   Going through the devolving of Liberty’s health taught me that I would have to rely on others.  And I didn’t want to.  I didn’t have the heart space to be open to any new people.   Then the bubbly, curly headed, bossy little lady came into the teacher’s lounge: enter April Wolterstorff.  Now those who know me, know I’m not a fan of very loud and bossy women.  I like calm and this beautifully boisterous woman wrecked my quiet in many ways. Keep being your bold and fierce self! 
       She told me she was going to be my friend.   What did the little weirdo know about me and my life.  And friend me she did.  She told me about her son, Kyle and how she’s leaned to be his Momma.  
       April gave me lists of people to call and organizations to become a part of.  How to reach the Special Needs departments of health insurance. How to ask for the right person to get the right appointment in the confusing world of children’s medicine. 
        April also tried to help me voice my emotions.  I had become stoic as a shield.  Six months into Libby collapsing on the way home  from school and I had not cried.  Doctor had asked me if we wanted to focus on quantity or quality of life Libby, she was 12, and I hadn’t shed a tear.  Nine months in and I hadn’t been able to  release  the valve. April told me it was okay.  I could feel what was happening to Liberty  and my family and not fall completely apart. She taught me so much. 
         I ended up bringing Liberty to Caprock with me for her high school years.  April was in charge of the ACC department and she continued to amaze me with her knowledge and patience in training me. Libby started her freshman year walking the halls and finished in her wheel chair.  (She did kind of zombie walk at her graduation with immense help.) April adapted and adjusted with Liberty as her disease progressed taking more and more from her body. She allowed me to be the teacher and not be the broken momma.
         April also calls me on my shit. If I’m hiding my emotions she will often shoot down my shield until I tell her the truth.  Everyone needs a gentle truth detector in their life.  I’ve loved her healthy and as her body had rebelled against her.   When she had to leave teaching I was devastated, but I knew that her body needed what it needed.   And I love her still.  
         She has been my “go to” for all things since that day in the teacher’s lounge. Now she’s moving away to embrace wonderful opportunities for her family. 

 I don’t have a place to put these emotions.  

  I will forever be grateful for her love and support.  You keep on with your glittery self.   Shine on my beautiful friend.  My sister. My claimed family.  
 And thank you. Thank you.   Thank you my Texas unicorn.  



Mariah and I made the trek this week to Cook Children’s to get Liberty’s Baclofen pump refilled.   Because of the upcoming surgery Rachael will need, I jumped at the chance to spend some time with Mariah.  We have never had any mother and daughters trips, so off we went.  There and back again within 36 hours. Grateful for any time I get with Mariah. She has truly grown into the woman I dreamed she would be.  
Thank you Mariah for being my chaperone.    


Actually let Mariah drive and then I crashed.  
Mariah always be your fearless and bold self!    


Take the time you get with your loved ones and your chosen family and embrace them for the bodacious people they are.  

Today is November 7 and our nation is beginning a transition.  Please focus on the beauty in your life and do joy spew negativity on other people.  Be kind. Be uplifting.  Be the light we are CALLED to be. 
  
Yes there are places for anger, but spewing anger at others isn’t going to help us ALL heal and grow forward.    Both sides have fear and claim injustice.  Stop yelling and listen with an open heart.  Hear before hurting.   Be gentle with one another as we all learn to navigate this new era. 

Saturday, September 5, 2020

Lagom introspection

Introspection:

My life is full of extremes if I'm not careful. For a Libra I find myself searching for balance. Always trying keep my world centered. When my world feels off center then I cannot keep the stress in check. Too often, I will over do whatever it is. For instance, I like to get my jellies made in late July and early August as the fruit is plentiful and I have time. It is not as if I could just do a single batch. I have to do all of the batches. Whatever it is, I go 110% or none.




This holds true with all of my habits. When I smoked, I smoked a lot. When I exercise, I work out a lot. When I binge, I binge a lot. When I study, I study a lot. And so forth. In May, two months into quarantine, while Rachael was in the hospital, I decided that I was going to force myself to stop binging. So, I ate less. A lot less. Then I had a hard talk with myself because I have battled this pendulum many times in my life. Many times. Disordered eating is an old frenemy of mine. (I remember being on a diet at the age of 8.) In a world of so many uncertainties, controlling my lack of control has been my jam. I am trying to be better to myself and handle the stress in healthier ways.


I’ve struggled throughout my life, but especially since Liberty’s body has changed and deteriorated. A sad and honest part is that for a long time I didn’t want to take care of my body for me. It was terrible eating well while Libby dropped weight everyday. It was hard to not binge and over drink when I knew her body was shutting down.  It didn’t seem fair that I could be so healthy and she isn’t. Actually, it sucks. I’ve punished my body in many ways and yet, still blessedly strong as hell (knocking on wood now). And Libby’s body won’t be strong. 


Yet, she is still here and fights her body in her own way. And although we are emotionally symbiotic, I’m pretty sure my body isn’t affecting her health. (More on this to come. Caretaking others is a mind mess in many ways.) We are a work in progress.


I tell you this so that I can share the importance of this word. I learned of "Lagom" from a Podcast; one of my True Crime podcasts- no doubt. The archetypical Swedish proverb, “Lagom är bäst,” literally means “The right amount is best” but is also translated as “Enough is as good as a feast” and “There is virtue in moderation”. I don't have this near magical thing called moderation. I have to work for it. I have been pushing to recognize when I am full and have enough. As in every thing, I am a work in progress. As are we all. 


What makes enough: “Enough is as good as a feast”. Every day is enough. We are enough. You are enough. We create what is enough as we learn to be tuned in to what is feels right for us as individuals.


 I’m learning to create limits that are healthy and support who we want to become is important. We are all on a journey of our own. Sometimes our paths overlap and diverge. It’s vital to protect and support the road we’re on. Learning limits is like choosing my favorite roads to run on my long runs: I know the layout and feel positive and uplifted by the scenery.  I am supported and secured within my new healthy limits, even if I am testing the boundaries at times.


Finding healthy limits makes sense especially during the time of such uncertainty.


For all of us I hope we find Lagom in our lives.


Each of you is enough. Even while we’re working to improve and strengthen. Even when we fail. Especially when we fail. When we’re ready to give up, you’re very enough.

Share the blessing that you are.



Monday, August 3, 2020

Selah

Selah is found 71 times in the book of Psalms
and three times in the book of Habakkuk. There
are many different definitions for this
beautiful word: in Greek, it is an interlude or
intermission, in Hebrew, it can be a break,
a silence, a pause, in Arabic, it is a prayer or
a connection.  Other sources refer to Selah
as a rock or even forever.  Early in my church
years, I learned that this was a time to rest. 
A holiday. A break.  Respite.


Although this was forced upon us, quarantine
has offered Selah, a time to slow down. 
To enjoy the time with Liberty and to see her
for her beautiful self as she is today. To
embrace the time with Rachael
and love her through her healing. 
To relish the conversations
with my family and cull out time
together. To delight in seeing Mariah and
her new husband as they create
a life of love. I have also learned many
things about myself.  To appreciate the
beauty that is to sleep and sit and be
still (as best as I can).
Selah. 


With this forced rest, I have come to realize
that I need to listen to the immense noise in
my head and categorize it as
useful or useless.  Much of the discordance
in my world is my own symphony less and
full. Useful noise may be reminders of what I
need to get done and has notes I can follow. 
Useless maybe guilt over believed past
transgressions or even presumed failures
and follows no rhythm. Useful noise can be
unpacked and taken care of.  Useless
noise cannot.  Too often, the useless noise
has occupied
my mind and kept me doing what needs
to be done. 

My brain tends to go 100 miles an hour 24
hours a day. I have spent years forcing it
to slow down so that I can sleep.  I’ve often
mused that it takes a freight train to slow
me down. Once I gave myself permission
to stop and listen,
I can put that cacophony into a pile and
either deal with it or throw it out.  Mostly. 
I am a work in progress.  A new skill I
am hoping to hone over time. Like most
things worth listening to, well done practice
is key.

Blessed with a beginning melody of Selah of
the mind untangling these noises have been
easy- in a way.  Useful noise is positive and
useless noise is ugly.  I’ve learned that the
most important conversation
I am going to have is with myself, and my
interior dialogue was terrible.  Mean. Ugly.
And riddled with self-deprecation.  Now,
when my revelry is interrupted, usually
when I am exhausted or overwhelmed,
I can call the useless noise what it is and
move on.  Just like in real life, I don’t have
to join the refrain.  

Being a mom to a child with many special
needs is a heavy gift to bear. At times is a
heavy burden that broke me. Other times
it has hurt so much I wish I had broke.
But at all times, loving Liberty is the
easiest thing to do. Even when she is
crying and no one knows why except her.
Even when she lost the ability to control
her speech, arms, her legs, her bladder
and her bowels. Wonderfully, she hasn't
lost her smile. This isn't any gig full of restful
phases; it is too often a crescendo
of heavy overwhelming growth. Yet it is
so worth it.
The moments of Selah are beyond.


Rona has forced me to listen.  To hold the
rest as important as the notes in between.
In this, I have been blessed.  This
time is ending.  I hope to keep the true
sense of Selah with
me in all of the varieties
of the word.  
For all of us, I hope that we can find and keep
our concerto of Selah going as we return to
in-person working.  Taking the positive lessons
from the quarantine with us may be the hardest
lesson of all. I wish you will know you are needed.
And appreciated. And capable.  And loved.
And your own Selah.  And maybe, we are
Selah to another who
needs it.


I am grateful.
Be safe and well.

ileana
 **Capitalizing the word Selah for effect**