Tuesday, June 23, 2015

I don't know how to do this.

I thought I had this all figured out, this whole parenting a medically fragile child thing. 

I figured out how to be pregnant with a child with an unpredictable future. The scary parts, the uncertainty. I learned to deal with it, to remain cautiously optimistic for my baby's future, for all of our futures. I learned to focus on the kicks, the rolls, the reminders that my sweet baby was safe and sound inside of me. 

I learned how to be a parent to a newborn, an infant, in and out of the hospital (ok, really, just "in," punctuated by a few brief respites on the outside). The constant worry, the multiple surgeries, the beeps and alarms of machines, the constant and steady hum of life inside of an Intensive Care Unit. I learned to live life one day at a time, to anticipate the roller coaster and enjoy the highs as much as I could.

I learned how to parent a medically fragile toddler, celebrating milestones a little later than his peers. I worked with his pediatrician, his nutritionist and his cardiologist to get him finally, blessedly, on the growth charts. I navigated the regional center system, and added therapists and learned the difference between a "developmental preschool" and a "traditional preschool." I learned the buzz words. And I watched him grow and thrive.

I learned to walk beside my preschooler, watched him try his hand at traditional preschool, watched him excel in some areas and still struggle mightily in others. I saw him through another open-heart surgery, and learned to gauge how much to speak about in front of "listening ears." And last month, I watched him don a cap and gown and graduate from preschool, ready to take on the world of kindergarten.

None of this was easy. It was fraught with fears and failures all along the way. But my husband and I, we figured this out. We got a handle on what it means to parent a medically fragile child and all the ways it was different than parenting our typically developing older daughter. 

And now, we stand on the precipe of his elementary school years, and I realize I have no idea how to do this. I have NO idea how to parent a medically fragile school-aged child. I mean, I really don't. 

I am so beyond grateful to be standing at this place, because we were never given any guarantee we would get this lucky.

But, truthfully, everything is about to change. 

For us. For him. For his teachers. 

And I am terrified.

We will have to start letting go a little bit. Yes, this is true of every kindergarten parent, but is even more so when your child has a major complex medical condition. It is SO hard to let go of the constant surveillance and monitoring, to let someone else step in and do that for you.  I will have to start relying on a teacher to know him well enough to know when he is looking "off." We will have to start having discussions about 504 plans and whether his school has an AED on site. And, most of all, we will have to watch him start to figure out how to live amongst typical peers with this big huge thing that has fundamentally shaped his formative years in a way they cannot even grasp.  

We will have to start scheduling doctor's appointments not whenever the doctor is available, but so as to miss the least amount of school possible. And have to face what will likely be missed days of school due to viruses. Bodie fares pretty well with viruses in general, but with a half a heart, every virus has the potential to take him down quickly and mercilessly, possibly landing him in the hospital. 

Learning difficulties are very common among school-aged children with complex congenital heart defects, particularly Hypoplastic Left Heart Syndrome. Things may be difficult for him that are not for his peers. He may have trouble organizing his thoughts, his writing, his priorities. He will have to learn to compensate for all of this. 

He will have to know his body, and what limits he needs to set for himself. How hard he can play. How fast he can run in PE. And, more than anything, as he becomes more aware of his heart and what it means, and how it makes him different from his peers, he will have to decide how much of his story he wants to share, and with whom. And when not to internalize it when others aren't receptive to his story. That's A LOT to ask of a 5-year old. I think it is this self-awareness piece that scares me the most.

Every bit of his journey thus far, I have been able to walk with him. I have been able to protect him where I could and to love and encourage him where I could not. But the start of his elementary school years mark the part of this journey that he will walk alone, that will be uniquely his. 

And I am not ready for this part of parenting a medically fragile child. 

But I know I will figure it out. And so will he. 

Just as I figured out how to remain upbeat when a doctor has just told me my baby would be born with a half a heart. Just as I learned to find hope amidst multiple open-heart surgeries and prolonged ICU stays. I will figure this out as well. 

I will reach out to hold the hands of my fellow heart moms, the ones who have walked this journey ahead of me and who are walking alongside me right now.  I will learn from their experiences.

I will seek solace and support in my friends and family, who have held my hand and prayed over our sweet boy all along.

Together, we will help pave this next part of Bodie's path for him.

Because my little guy, weak heart and all, is counting on us to figure it out. 
And I am not about to start letting him down now.
He has risen to every challenge we've placed in his way.
So now it's time for me to meet his challenge. 

Monday, June 15, 2015

Nailed it.

Some days, I feel like my life is one giant Pinterest failure. 
Like someone could follow me around creating "Nailed it" memes about my Pinterest failures.

Today, I got to experience another round of me vs. Pinterest. You can guess who won. The same one who always freaking wins.


So I have been reading all about how important it is to keep kids on a schedule for the summer, keep them reading and working on math and grammar, etc. And I've been seeing all these cute and creative schedules and thought "How hard can that be? I could totally do that!"

Mistake #1.

After lots of Pinterest searching last night, I came up with THIS schedule. 

I was pumped and ready to get these kids started off on the right foot for summer.

When I got home at 7:15am from the gym, both kids were awake and were happily enjoying "Free Play" (aka messing the house up).  Meaning I walked into a house that already looked like a tornado had swept through. Some parents of young kids are totally cool with their house looking like a frat house. 
Let's just say we're NOT those parents. 
(Obviously. Those parents don't have THIS schedule. Duh.)

Free time before work = Mistake #2. Seriously, WHAT was I thinking???

They then spent the next hour and half screaming, fighting and inflicting injury with and onto one another instead of cleaning up. Very quickly, they were both in time out (multiple times) and I was headed there myself, since I may or may not have been taking my frustrations with them out on Dusk. Oops. Sorry, hun.

Then, we went to Bodie's ENT appointment, which Bodie protested mightily over. Apparently, he had an issue with "Free play; go outside time!' being a visit to the doctor's office. Picky, picky. 

Then we came home and the kids ate lunch while working their way through their schoolwork. Sierra breezed through her worksheets like a champ. Bodie, on the other hand, quickly got a handle on words like "cat," "sat," and "hat."…and then lost his mind when I tried to get him to figure out "at." (A word he already knows.) As in, lying on the floor crying in fetal position because "I CAN'T FIGURE IT OUT, MOMMY!!!" So, he got halfway through his first sheet before I decided enough was enough, and it was time to jump straight to quiet reading time.

Which was, quite honestly, complete and utter bliss. Sweet silence. No fighting. No hurting each other. No screaming about not understanding easy words. Just happy reading. YES.
And then we moved onto craft time. My bright idea was to make library bags to put our library books in (the kids are both participating in the local summer reading program). Except that they wanted to use the rotary cutter (um…NOOOOO Just NO) and use the iron (Sierra ok, but Bodie, NO). So…

Bodie's "craft time" consisted in him watching me make his library bag. 
At least he got to pick out the fabrics (all turtle themed - reversible with teenage mutant ninja turtles one on side).
And he really liked it!

And Sierra's "craft time" consisted of me stopping every 2 minutes to help her re-thread her sewing machine (ok, maybe not that often, but it sure felt like it). Her bag isn't done yet (I made Bodie's and had her make hers), but she's almost there. Hopefully in the next day or so she'll be done.

By then it was off to ballet for Sierra and back home for dinner. Which means we didn't get the "scheduled" clean up time in…so the house looked approximately like this when daddy got home from work.

So much for great summer schedules.

Ah well, there's always tomorrow, right? 

Does Pinterest give extra credit for effort? 
If so, we're golden.

If not, the schedule for tomorrow may just read:
"Bennett Summer Schedule
8am-7:30pm Silent reading (with some meals in-between)."


Monday, June 1, 2015

Working on that Colgate Smile

This little dude, the one with the adorable ear to ear grin, is headed in to get some work done on that trademark smile tomorrow. Some cavities filled, some teeth sealed, maybe an extraction.

I know, I know, it's just "dental surgery." The thing is, there's nothing little when it comes to a procedure on a medically fragile kiddo. As the dentist reminded me "it's just that it's soooooooooooooooo risky to put a kid with a half a heart under anesthesia."

Well, thanks for bursting my bubble that my child is just like every other kid. That's awesome.

But he's kinda right. Unlike a typical kid, who could have a couple cavities filled in a dentist's office, maybe with some laughing gas, Bodie's will have to be done at CHLA.
In the OR.
With him intubated.
And under the direction of a specialized cardiac anesthesiologist.
And will require pre-op.
And several hours of observation afterwards in the recovery unit.
With the possibility of admission always in the air, in case he gets squirrely.

Like I said, it's kind of not a little thing.

So we'd appreciate all the prayers you got.

Pray for BODIE, that surgery is smooth and without complications, that he's not in too much pain afterwards and that he's back in his own bed tomorrow night.

Pray for DUSK AND I, as this should only trigger approximately 9,999 different episodes of ptsd for us. Although this is for sure minor compared to everything else he's had done, it's being done in the same place as all the major stuff has been done. When that happens, the mind has a hard time differentiating between the major and the minor. So we're perhaps a bit more keyed up than we need to be. Prayers for peace would be awesome.

Finally, please pray for SIERRA, as she's again waking up to reinforcements, without mommy and daddy home (since our call time is 5:30am! Eek!), and is expected to go to school and act like everything is normal, when the 3 most important people in her life are all the way across town, doing something kinda big without her. Prayers for peace for her sweet little heart are much appreciated.

Thanks to our faithful followers!!! We're so blessed to have you on our team!