Born @ 27 weeks
2lbs 7oz

Friday, August 25, 2017

Hopeful and Waiting

I have started and stopped this update the last two weeks. 
One day, I would be so emotional that I couldn’t see the screen to type.
The next, there was hope and writing seemed mundane in the hurdles we had ahead.

I haven’t returned many calls or texts. Not because I haven’t wanted to talk to each of you reaching out. I think:
1) It is hard to explain our situation over and over. It has changed within hours. Besides worry, often I don’t know where I stand or am ‘fighting’ for or if I'm asking the right questions, so remain in this purgatory of waiting. 
2) I honestly think every day I have been waiting for something positive to share.

Your calls, texts, messages and dinners have been so uplifting. Thank you. Such wonderful and thoughtful surprises.

Today, I have some good news and time to share it. 

Since Shaw’s surgery in early August, our family has more or less been in a spiraling shit show. Shaw has been in and out of the hospital. Michael and I are consumed with worry, overcome with fatigue and clambering for any knowledge we can gain to be the best advocates for our son. 

Nash is starving for some time and confused over the fuss and tension in our home. Yesterday, he drew “The DeathTrap” at school. Just a drawing of chainsaws and bullets and lava and poison… you know. Light and Fluffy. (I’m sure this picture will rear it’s head in therapy when he is 16). 

Thankfully, this team of Mommas, while they may not know one another...they have just called me and said, “Can I take Nash swimming?” “Can Nash come over?” “Can I take Nash for a playdate after school?” 

To anyone reading this. Let it be known that some people have a hard time asking for help. Others may not even have the capacity to think about it. Those that just do… Just drop off food. Just stick a card in the mail, just say, “Drop him off! Or I’m coming to get him.” It is so helpful and appreciated and… when things are good again, like today, I think back and am blown away by the support and kindness. It’s almost like your brain just doesn’t have the ability to make decisions or take on anything else.

Thank you! Even if we couldn’t make It for one reason or another, I am grateful that you tried.

Back to Shaw and his medical complications. 
He does have Chronic Lung Disease. He was a 27 weeker, which makes him complicated in the medical field. 
Things are just not wired the same.
Only in addition, this time the doctor made a mistake. 
It’s an honest mistake. Everyone is human, right?  
At least that is what I keep telling myself. 
Only these mistakes just affect life and death and everything in between.
I feel differently when it directly impacts our children.

The mistake(s), we have shelved temporarily. We are not people that blame or want to fight. 
Instead, we have chosen to focus on Shaw’s health and getting him on the correct path to healing. 

Monday, the start of 2nd and 1st grade, came and went. 
Nash bounded into class, excited to see his friends (and likely hungry for some normalcy). 
Shaw was allowed to stay at school for two hours. He loses his breath just walking to the bathroom or climbing a flight of stairs, so recess without stamina was out of the question. 
Shaw and I watched the eclipse together from the doctor’s office.

Tuesday was a different kind of hard. 
Tuesday, we had our post op appointment. 
Tensions are high and I’m so grateful Michael could be there for this one. 
The jokes he has been telling me for the last ten years, seem to lighten any air and set an ease to my shoulder blades stiffly crawling up my back, a knee jerk response to the things swimming in my head and on the tip of my tongue.  (Ironically, Michael took Shaw to the bathroom and left us for only five minutes. He returned to find me standing from my seat, fists clinched, tears streaming and heatedly saying, “I don’t feel like anyone has a pulse on this!!!!”

Thank God he wasn’t gone long. 
I returned to my seat and buried myself in my script of notes and questions and we continued.

Shaw’s voice has not returned. It remains a meek whisper, three weeks post surgery. He is only complaining slightly of agitation in his throat, but when I sent him to the deli to get a cookie on his own, his feeling of deflation is enough to make your heart break. “Mommy, I saw someone back there and called to him as loud as I could, but he couldn’t here me. “ 

I can’t imagine feeling invisible.

The pressure swelled to great heights on Tuesday as we were to find out if Shaw’s vocal chords were permanently damaged from the trauma of the surgery. 

After ANOTHER procedure where Shaw had four adults holding him down, writhing and whisper-screaming “STOP!!! STOP!!! STOP!!!" while a camera was shoved up his nose and down his throat…. We learned (or at least were told and are hopeful) that his vocal chords are not paralyzed, but still swollen from the pneumonia Shaw caught immediately after the surgery. The intense coughing for an additional week has left his airway extremely agitated and trying to heal.

The doctor says Shaw’s voice is expected to return in 4-6 weeks. 

Wednesday, Shaw really wanted to stay through lunch. 
I anxiously hovered. 
Working from my car. 
Lunch next to the school. 
Popping up on the playground at recess with emergent asthmas medicine, just in case.
He made it. 

Yesterday, Shaw stayed the entire day at school. He even ran towards me in a full embrace begging to play on the playground with friends that afternoon. 
Reluctantly, we came home. 
One step at a time.

In the grand scheme of things… unimportant, but as fate would have it, Michael and I have been planning an epic adventure to celebrate our ten year anniversary. Not only is this the first time I have ever left the boys for longer than four/five days, this is continents away. I’ve had angst and anxiety about leaving the boys for the year and a half we have been planning this trip, without the recent medial challenges. We are/were to leave next week. Now, we aren’t entirely sure. Of course, not important given our children’s health, but just another ball to juggle. 

This weekend, we are resting and relishing this trajectory of (hopefully) good health. 
It’s 1pm and I still haven’t had a call from the school, so I’ve convinced myself no news is good news.

These little troopers, Nash and Shaw, haven’t had the best end to summer, but they are stronger and more aware for it. Let the road ahead be bright and hopeful and healthy. 

Thank you so much for the love and support - especially to the boys' teachers, who have been unwavering in accommodations, patience and kindness this week.

First Day

We did manage to pull off a dinner party/fundraiser for our beloved school with the Beuggs. 

Bee Mighty also held a golf tournament in Atlanta, GA raising over 10k while we were in the hospital! 🐝❤️🐝

❤️Ms Terri

Thank you William Benedict!

Someone is coming home....

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