Connected

This morning I spent nearly an hour on the phone with Maria (Jacob's mom... the original CARS2 mom) talking about our boys and life with Mito.  It feels SO GOOD to be connected with someone who understands the feelings of isolation, jealousy, and frustration with the ongoing uncertainty.  But we also talked about the importance of not missing out because of all the downsides of having a medically fragile child.

Yesterday, I learned that another mama in Dodge City has a child facing a serious genetic condition.  I very quickly offered my support, even though she has MANY people on her side.  I knew how hard it is to wait for a diagnosis, but luckily hers came through before the end of the day.  I was amazed by the quick turn-around.  I'm so happy that she doesn't have to worry and wait for weeks or months to know what is affecting her little one.

One of the big worries I haven't talked about in the blog directly is the feeling of being invisible.  The feeling that you are completely alone in this.  The feeling that nobody else understands.  Talking to Maria helped with that.  Having our nurse this summer helped with that.  My dear husband helps with that, but we can only do so much to help each other.  Unfortunately, most of our support network of family lives states away.  The ones who are here are grieving too.

Maria told me it takes a village.  I think we all know that it takes a village, even with a "normal" kid.  I NEED our village.  I need to know that you're there.  When I'm overwhelmed, I don't see anyone who isn't right in front of me.  I don't hear anyone who isn't speaking directly to me.  I don't feel the connection with my friends that I am so known within my circle for feeling.  Please don't hesitate to send a random message that you are thinking about us.  Please don't scroll past a post and smile without commenting or giving a like. (I'm sad to say that your feedback on social media contributes to our feelings of self-worth right now.) Many of you have asked what you can do to help us... reach out.  Make sure that we really do see, hear, and feel you... because we are lost.  Even when we look like we have it together we aren't.  We are just getting by.  School friends who have learned about trauma... we are living it.  (Think about the picture of the brain from the slideshow.)


I'm happy to be connected with Maria.  I want to make sure that I stay connected with my friends and family here because we all need somebody to lean on... yeah, I know... using song lyrics again.

I took away four very important things from the converstation this morning:

1. Don't stress about his end of life, you can't really prepare for it.  You'll know when it is time.

2. Realize that worrying takes away from your time to ENJOY him.

3. Trust yourself and your knowledge of what is best for him.

4. Take care of yourself.

I scream, you scream...

Shameless plug...
CHOCO FRUIT
TOMORROW
Your rolled ice-cream purchases help to support All In For Lennon!

Obstacles or Opportunities

I'm not sure how far our "fanbase" on the blog goes at this point, so I'm going to assume that most of you know I'm a teacher.  I talk to my students a lot about "Growth Mindset."  It's a pretty big buzzword in the education community.  It's all about seeing every obstacle as an opportunity to learn.  My goodness is it hard to practice what I preach.

The name of the blog is Life Lessons from Lennon... because we are constantly learning.  Learning new normals, learning how to cope, and learning how to help people around us cope as well.  I sometimes struggle to post because I'm afraid that each entry will sound like a complaint about the life we live with our beautiful boy.  There are significant difficulties in having a complicated child.  That doesn't mean that everything is bad all the time.

I've been reflecting lately on my teaching practices, wondering why my students are giving me so many compliments and why I'm not seeing the same behaviors in those few who have "history."  The only thing that I can come up with is that I'm trying to practice what I preach.  I've shared with them Lennon's diagnosis. They know that I have a family of my own and kids who are not much older or younger than them.  I'm honest with them when I'm struggling, and I genuinely care when they struggle too.  (As you can see, struggle is a buzzword in my vocabulary right now.)

I got called "mom" today by one of my students... he usually calls me by his 4th grade teacher's name.  I giggled because he loves them both, so that must mean that he associates me with good feelings.

Today, I gave my kids a pep-talk today after a rigorous PE experience and less-than-stellar behavior in the hallway.  I told them that even when we are tired, even when we just want a break, we can still choose to do the right thing.  Normally, I would have given the CHAMPS speech: "Voice level in the hallway is a zero, etc.)  Maybe that reminder was more for myself.

I am tired.  I just want a break from the chaos that is going on with the nursing, insurance, attendant care, fundraiser, dad working doubles (because he is stronger than we know), and the brain-fog that has settled in over the last month.  But I can still do what is right.  All these obstacles might just be opportunities in disguise.

So let's end with the positive developments:
Sister is loving school, making friends, and playing volleyball.
Biggest brother is actually reading in the evenings and doing his homework without a big fuss.
Bigger brother is a comic relief and keeps us guessing.
I received donations to sponsor my class with Scholastic Book Clubs (at least 3 FREE books per student already)
Lennon's new attendant started training with him this evening.
Dad actually got to spend the evening with us instead of working a double and will have Sunday and Monday off!

OH, and Choco Fruit 212 Gunsmoke, Dodge City is donating part of their sales THIS SATURDAY to Lennon's All In fund!

Thank you all for reading and sharing Lennon's story on your own social media feeds.  We appreciate your support.