New Balance: Lagom

Rachael and I returned to working in the brick and

mortar classroom on our campuses. We have been

training, collaborating, planning, and researching.

We are organizing, cleaning out, and arranging

student seats. We are re-imagining, re-learning,

re-trying, and re-tooling education. We are comparing

masks and how to keep our glasses from fogging

and our nostrils from drying out.  This is a relentlessly

stress filled, overwhelming time for teachers and yet

it’s exciting! Nevertheless, it is good to be on campus

with my peers preparing for my future Loves to join us.

My fellow teachers, administrators, and staff bless

me every day and make me a better person. 

The flip side of this is that I am not with Libby every

day now.  I am at school and she is either with Mariah

or Jennifer depending on the day. This is hard as I have

not ever had the chance to spend this much time with

either of my children. I have spent my parenting years

working at least one job and going to school for my own education.  I lost a lot of time with my girls.

The last five months have been challenging

and a great blessing. I didn't get to see Mariah as much,

but we were able to talk more. There are many other words to convey what this time meant for me, but words fail me.Truly a stressful godsend to have that time with her.  She is now up several pounds and has filled out quite a bit! She is even wearing some adult-sized clothes again.  

After her drastic weight loss a year and a half ago, I went through her clothes but held on to many that I hoped she would gain back the weight needed.  That alone is wonderful as we have scaled back on the number of tube feedings she gets in a day. She got her tube replaced last week and we were lucky to get her in when we did- right before the tube popped out.   I'll continue to monitor her intake and struggles with Parkinson's swallow to adjust her caloric

intake as needed.

The stress is real in the land of education. The level of uncertainty as we create new norms in education is real and overwhelming. The cognitive load is great and overwhelming. Yet, we will preserver. We will learn and adapt and do what is needed for our students, parents and peers.

Beautiful teachers stay strong. We can do this.

To all reading this please that you are loved and are worth far more than you know. 

Ileana

Complicated: We are all weird cases here

We are all weird cases...

We’ve now had two failed attempts to get a feeding tube placed in Libby.   Each attempt is more invasive and hopes get higher. 

The first doctor  said her bowels were up high.  The second said that her stomach is up very high in her chest cavity, and so he could not proceed safely.  Wait.  What?  I couldn’t listen to anything else- just need my kid to be able to get more nutrients into her body.  Such a heart wrenching fiasco. At that moment the why wasn’t as important as when we can try again. 

Next is a true surgery.  Full anesthesia.  We asked for the full surgical process for the feeding tube in the beginning.  She’s terrible to get an iv into- tiny squirrelly veins.  She doesn’t relax enough to be laid totally flat unless she is under anesthesia.  Fully knocking her out is the way to go, but protocol  states that we go from least invasive forward. 

Of course, I always want to be cautious where her health is concerned, but I have a sense of urgency here.  

While we wait I’m trying to not lose patience.   Coming from the land of pediatric hospitals where we are all weird cases to learn that Liberty is “complicated.”  They said complicated.  

Yes. She is.  She is strong. A joy. A fighter. A hope, and some days a pain.  But she’s also still alive because specialists in the pediatric realm listened to our worries, ideas and, dare I say, our gut.    

So here we are holding in a pattern until we meet this surgeon next week.  Meanwhile, she’s losing more weight and eating less at every meal.  

I know she will be okay until we can get some nutrients into her through the tube.   We fought the idea of this procedure for so long that since we made the decision to get it I’ve become more and more impatient.   Every bite, every meal is a fight.   Her favorite foods.  Her favorite drinks.  Doesn’t matter. It’s a battle.  It’s not supposed to be this way.  

Truthfully, the combination of the Parkinson’s and dystonia will only progress making her less able to chew and swallow food.   These same conditions cause her to be so very spastic that she burns thousands of calories a day.  That my beloved friends is a bad recipe. 

I know there is so much that is out of my control.  I can’t stop her stiffness.  Her loss of motor control.  Her loss of speech. Can’t stop so many things, but have been able to make sure that she gets food she loves.   Now we’ve lost that.  The feeding tube will allow us to get the nutrients into her body and then supplement with whatever favorites she can get down.   

So, she’s complicated.   And a miracle.  We’ve come this far on our bonus time, and I will continue to refuse to lose her this way.  Not this way.  

As we approach Thanksgiving I pray we get the tube by the first week of December.    It will just happen or another solution we present itself.   I will not be without hope. I refuse to give up. It will happen. 

In shared determination we send out love and hope, 

Ileana