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.

The Things We Don't Say

Emotions in our house are high pretty much all the time, but I think mine are starting to push everyone else over the edge.

Kids are smart, they know when things are bothering their parents.  The trouble is, they tend to add to it because they don't know how to handle all the tension bubbling beneath the surface.  I try to be transparent with them, but I can't be a blubbering mess every time I want to cry.  Honestly... I've probably worn out most of my "Big Girl Panties" if you know what I'm saying.

I try really hard not to throw pity parties for myself.  I try to keep my frustrations and disappointments to myself or the people closest to me.  There are so many things that we don't say, and I don't think we are an exception to other families like ours.  If I'm feeling the pressure, I know other families are as well.

Did you know that there is a nursing shortage in our area?  Did you know that Lennon and other children like him need in home nursing care, have hours allocated to them, and still don't have a nurse assigned?  Do you know how HARD it is to accept the fact that your kid needs that kind of care in the first place?  Do you know how HARD it is to have your caregiver change?  (If not, check out my previous blog post.)

It is hard to make your "other kids" feel important when they have a sibling who needs care like Lennon.  It breaks my heart to refer to them as the other kids too.  There shouldn't be a separation between them.  I will never forget hearing "You love Lennon more than us."  It wasn't even said in a mean or hurt way... it was just the way that the boys understood life to be.  Even when I explained that we don't love Lennon more, he just needs more care, I don't think that mended what was broken.

I can't tell you how many times we have skipped something for the big kids because of the baby.  Nursing and attendant care are supposed to help with that, but even if we had someone in place, there's still the emotional struggle of leaving Lennon to miss out on what his siblings are doing.  This goes so much against my idea of what family is.  We are supposed to build our lives together. 

I can't tell you how many times we've said no to the big kids when they wanted to join an activity.  Sometimes it is because of finances.  (Lost wages are tough to overcome.)  Usually it is because of logistics.  Dad and I can't commit to getting them to and from practices or events given Lennon's daily care schedule, much less if one of us is in Wichita for a 5-10 day stay.

Lennon pretty much operates on a 3 hour schedule: 1 hour hooked up to his feeding tube and then 2 hours free for play, therapy, or snuggles.  He eats every 3 hours to help him compensate for his body's reduced ability to produce energy.  His amino acids, supplements, and anticonvulsants are given at every other feeding throughout the day.  We carry his emergency protocol and a diastat syringe with us at all times. (Diastat is like an epi-pen for seizures, only it's rectal gel... TMI... you're welcome.)  For longer outings we need formula, feeding pump, extra enteral feeding bag, extra mic-key kit, bottled water, medications, syringes, and pill crusher/splitter in addition to the normal diaper bag contents that "normal" kids need.  And we pretty much have to have the stroller everywhere because he is getting so big and can't sit in high-chairs, shopping carts, etc.

I feel guilty for even writing this... but these are just a few of the things we don't say.

I think families have enough moments where they feel like they are alone in their struggles.  I think there are probably many of you reading now that wish someone just understood what you're facing too.  Be kind, be compassionate, be patient... do what the feel-good memes on the internet tell you to do.  It will make a difference.

My last thought for the day:

When someone finally gets the courage to ask for help, give what you can, and don't be afraid to let them know that you don't know how to make a difference.  Chances are that they don't know what they need either.  Being an friend is usually enough.

The End of our Summer Chapter

Today was rough... had it not been for Dad, the Bestie, the Fam, and Nikki, I don't know if I would have made it out in such good shape.

School starts Wednesday.

That means I go back to work Monday.

That also means that our last day with Miss Nikki is Tuesday.  She will be going back to school with another one of her precious kiddos.  I am so glad that she was our first nurse!  I'm going to miss her terribly.  The last couple of weeks have been tough for both of us, knowing that we don't have another nurse in place.  More than that, we have known that our "see you later" has been rapidly approaching. 

When you first learn that your child needs in-home nursing care, it is a HUGE adjustment.  You worry about how this person will care for your baby... and how their presence is going to change the dynamic of your household.  Are they going to be clinical or are they going to love on them like you would?  Are they going to judge you on the days when you're still wearing the same thing as the day before?  Are they going to notice when you spend most of the day in the other room fighting back tears from this "new normal?"  Are they going to be able to take over what you think are YOUR responsibilities without making you feel like a slacker that can't care for your own kid?

And then, if you're as lucky as we were, you'll find that you look forward to seeing your nurse each day.  She will start to bond with your kiddo and you'll see all the love and caring there.  You'll get comfortable leaving the house to run errands.  You'll start bouncing ideas off each other to make the best use of your space and organization.  You'll share tips and tricks for things like getting the most use out of syringes and alternatives to pill crushing.

Then if you're REALLY lucky, you'll feel friendship start to blossom.  And when you're having one of those days when you've been fighting back tears from a "things aren't going according to plan and we are running out of time" moment, she'll hug you and not say anything when a few tears drop on her scrubs top.



This is the end of our summer chapter...

Grandma is coming back to care for Lennon while dad and I work, at least until we can establish nursing or attendant care.  We are optimistic about what lies ahead. (It's funny how mornings can be so starkly different than afternoons.)



Tonight I'll leave you with Lennon dancing in the Upsee with Nikki.

First Summer Hospital Stay

Well, we almost made it through our summer without a hospital stay. I'm not going to lie, I kind of feel like Wichita is inherently tied to doctors of some sort. We spent a long weekend here with our family and the morning we we're going to leave, we had vomiting and seizures, so we brought him to the Wesley ER.

Thankfully we are able to communicate more effectively with Dr. Beltran and Dr. Shah now, so we made it upstairs fairly quickly. When we got here, we we're very happy to see our A team on staff. Dr. Haws, Judy, Beverly, Tiffany just to name a few... Yes, people who know our kiddo and how tricky he can be.

He was swabbed to determine which kind of respiratory infection he had and came back with rhino/enterovirus, which is the same thing he had in April.  Even though we didn't suspect seizures by the time the EEG started, there was nearly continuous seizure activity on the right hemisphere of his brain. We gave a course of three medications before the activity stopped.  We are currently working on the second 24 hour infusion of Argenine. If he stays stable throughout the night, we will get to go home tomorrow.

We may be moving to general PEDS floor tonight, so send some extra prayers that we don't relapse, which is what seems to happen when we go to PEDS before dismissal.  At least there we can snuggle a lot easier!

Love Makes a Family

There is nothing quite like family and I love mine. Throughout the last week, we spent loads of time laughing, causing trouble, and just being lazy with Aunt Rhonda and Bev. I'm pretty sure I want to keep my neice!

Then last Friday we met up with Uncle Al, Grandma and Grandpa Kennedy, Uncle Scott and Aunt Christy and cousin Anson. Grandma Renae made a couple of apprearances as well. This made for a fantastic time! Our hearts are so full!

 

 

Unfortunately, we ended up back in the hospital Monday, but that has its own post.

Ironically, we may never have found part of our family if it hadn't been for Lennon's illness. It was last summer that we were able to reconnect dad with Rhonda.  Since then, we've shared one visit and about a million Marco Polo / Snapchat / Facebook / Duo / phone conversations. This summer, we finally got to meet the rest of her bunch in person. I'm so glad for this opportunity to get the Moody family and the Kennedy family together!

I know I'm probably repeating myself, but seriously... Full heart ! Dinners, Tanganyika Wildlife Park, The Arcade, just relaxing by the pool, it was all wonderful! I can't wait to do it again!