Processing… Pity Party for 1

both boys

Little Dude started his second year of pre-k this morning… it wasn’t his “official” first day: it was just orientation-day. But as a stay-at-home-mom, a little piece of my heart died today, because I had to miss it.

Sounds dramatic, I know.  I’ve set my expectations high. This is, after all, why I chose to be a stay-at-home mom.

One of the most haunting thoughts I processed while awaiting melanoma removal in 2012 was that I wanted to live… to raise my kids and leave a legacy pointing to Jesus.  

But the other component to this heartbreak, is that I was driving 45+ minutes away to take our almost 10-month-old to a school for blind and vision impaired.  There’s a program he can attend twice a week that will help him learn to navigate life with the vision he has and also meet other kids like himself.

This center doesn’t replace vision therapy or physical therapy, but partners nicely with our other efforts to do everything we can to help correct his vision and ensure quality of life for him.

Logically, I knew my husband rearranged his work schedule to work from home and be available to take Little Dude to and from school.

Logically, I knew that this is the help we need for our baby and I should feel blessed to be able to take Little Brother to the center.

As I drove away from our rural suburban town and headed towards the city, logic rolled away.

Uncontrollable tears burned down my face.  I turned off my audiobook and embraced the time to vent to God.

They don’t deserve this, God. 

They are in no way a disappointment to me, but honestly, this makes me discouraged in you, God. When do we get to see your strength and power in all this? 

Yes, I’m thankful to be able to stay home with my kids… but they are BOTH missing out on a piece of “mom” because of this.  I feel like it’s my fault, even though it’s outside of my control.

Little Dude started speech therapy around 2.5 years old and gets assistance through our school district. It was (and still is) a great blessing to get this kind of help… because he needs it. He’s very bright, but he is a “speech kid” (among others) in his preschool class.  It’s something I hesitate to even share so openly because I don’t want him to have that kind of stigma growing up… But you know what? I’m BEYOND. TIRED of hearing about everyone’s shiny, problem-free, easy-peasy life on Facebook… Or people “complaining” about how smart their kid is… no apparent problems other than being so gifted, they just couldn’t possibly fit in with “average” kids their own age.

And in real life: WHY DOESN’T ANYONE TALK ABOUT CHALLENGES LIKE OURS?! As if you can’t tell, it makes me mad. Maaaaaybe a little jealous… but it’s complex.

I feel judged sometimes – like I clearly don’t read to my kids enough: that’s why he’s speech-delayed (If you know me AT ALL, you know this is false).

Or like I did”something wrong” while pregnant, so Little Brother’s eyes didn’t form properly. (Seriously, do you know me at all?!)

When we had Little Brother, I never imagined we would have another “special needs kid.”  No, neither boys have “severe” special needs… but these moderate needs are still draining, especially when faced “alone,” feeling like they are so rare… This is draining on my nerves, our finances and our time.

We make sacrifices… like opting for appointments to help our boys rather than going to a casual library storytime, music & movement class or a morning at the zoo.

Instead of staying up doing something for myself, I often just fall into bed – either 1/2 listening to an audio book or directly to sleep because I’m just processing so much… and that’s how my body copes. Sleep!

Back to this morning. Driving.

So here I am, driving down I-25 and realizing that I have two very bright, yet very different sons – opposite in many ways. Our first-born is up by our house attending a pre-k class that brings in a Speech Therapist each day to help his intelligibility (people’s ability to understand him) increase.  And I’m on my way to a highly specialized center for our second-born… he’s not even one year old yet and he’s enrolled in a school-like program for blind and vision impaired.

I wrapped my mind around the possibility that he could qualify for this center until he’s 5 years old. I will be responsible for making this mini-journey to the center dozens of times each school year. I could make hundreds of trips to this place before my baby even starts kindergarten.

Wow. And while the burden of all this responsibility and challenge stayed on my heart and weighed on my shoulders, I remembered that I was about to meet other families with equally (or even moreso) crushing stories.

Why does God allow this? Yes, it’s nice He provides the help we need… but it doesn’t feel all that great to NEED the help in the first place.

Logically, I know this kind of situation helps humble us… so we know there’s no possible way we can do this life alone.  He wants us to need Him and realize it… AND take action to surrender.

I am constantly thinking about the Apostle Paul begging God to take away the thorn in his side… scholars have speculated on what it could be… but it doesn’t matter. The point is that God allows these things to prevent us from becoming too proud.

I can’t help but feel guilt for having so much pride that God knew I needed all this to be shattered. Twice. I’m ashamed of myself for needing this humbling experience.

(Just to be clear: I’m not ashamed of my boys. At all. I just want to maintain their privacy and not let their lives be broadcast… I want them to have as much privacy as possible. Then when they are old enough, they can decide what parts of their lives they choose to share online.) 

I did survive the day. I’m sure I’ll look back on this and understand a bit more than I do now… God has a plan… In the throes of it, I’m still processing my pity party for one…

Thanks for reading…

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Amy - August 19, 2014 - 2:00 pm

Hi Heather,
I can relate to some of how you feel… I just had my melanoma removed by surgery on 7/17, and before I was dx’d w/ a couple of rare diseases, i was a special education teacher– so I worked with many children of all abilities/disabilities. I feel like we have a lot in common. Just wanted to share so that you don’t feel completely alone.

Heather - August 19, 2014 - 2:15 pm

Thanks Amy!

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