Saturday, June 14, 2014

He is faithful: an update on Brielle's developmental journey

It's been several weeks now since Brielle has started therapy, and she seems to be responding well to everything. She sees three, soon to be four, different therapists (thankfully in-home and state-sponsored so practically free!) twice a month for different parts of her development. It's a bit daunting to think about all these appointments and to go through this process for an unknown length of time (yet again), but we've gotten positive feedback already and her therapists are optimistic.
Mostly we've been focusing on gross motor / physical therapy, but she also has fine motor / occupational therapy, skills / general overall therapy with her case manager, and will eventually include speech therapy as well. We are focusing on everything from core and muscle strengthening exercises, to hands-and-knees time, spoon self-feeding, more interactive play, as well as sitting more stably and transitioning into a sitting position.
This is bringing back a lot of memories from Judah's growth, and if you've had a normal-developing baby, most of those things just "happen", or transition so quickly you don't even notice them. With both our kids, even the littlest achievement is something to celebrate! But I will be honest in saying she has already fallen more "behind" than Judah ever was, and it seems a bit more slow-going too. However, her therapists have commented that she seems to have all the motivation and ability necessary to grow and reach her developmental goals. All they've been able to see as the problem is having "low tone" in her muscles. In just three weeks, we can already tell she is a little bit stronger and has more endurance during her exercises. She also seems *almost* ready to pull into sitting independently. So that is progress, though excruciatingly slow progress. But we will celebrate every success and know God has His hand on her little body and mind. He has a perfect plan for her, each and every day!

In other related news, we have sent in the paperwork and are waiting to get our appointment scheduled with the developmental pediatric neurologist. Although we aren't expecting any grand diagnosis or answer to the problem, we are hopeful she may have some insight or direction for Brielle.

Aside from our normally fairly healthy diet (about 50-75% organic, with lots of fruits and veggies), we have also removed most wheat, per doctor's suggestion. This tiny 18lb girl can EAT! To this day, I still have not seen her "limit". She must have two hollow legs and two hollow arms! ;)
We've actually been enjoying trying new and creative wheat-free recipes! I don't know if it's been helping or not, but I'm sure it can't hurt.

On a more personal level, it has been difficult to not play the comparison game, or the blame game, as Brielle's mother. The couldawouldashoulda thoughts creep in, and I know that A) there is a slim chance, if any, that I could have done something different to prevent anything that may or may not have contributed to her delays; and B) even if I DID do something (or not do something), there is nothing I can do to change that, so why worry?

I fight the urge to compare Brielle with other children her age (and much younger), who are passing her up developmentally. I desperately want to share in their parents' joy (and I do, but maybe not completely wholeheartedly if I were to be honest) when another child starts crawling, or walking, saying their first words, clapping and waving... my heart aches to see my daughter do all those things. My heart longs to hear her say "mama" and wave and smile and run to me.

Sometimes I just feel like we're stuck. Forever circling in a holding pattern (oh here I go with the airplane terms... yep, a pilot's wife...), wondering when we'll finally get somewhere. It's hard not to feel defeated or depleted, frustrated, hopeless, or overwhelmed. It's hard not to feel jealous of others or angry at ourselves, or worse, blame God as if somehow He is punishing us or just messing with us.

Sometimes I just want to cry out, "Really God? Again? Why are you doing this again? And why don't we have answers? Why do we have to go through this? Why are you doing this to her? Why can't we have a normal life, normal children, normal problems?"

Seriously, it's sounds ridiculous when I actually write that. It also sounds incredibly self-serving and selfish and whiney. Sigh.

I keep going back to what I know to be true. Relying on God and His security in knowing that He is sovereign and good and cares deeply for my precious daughter. He has not forgotten her, and He has a perfect plan in mind for her. It really is a faith trust season of life right now.

Just like with her brother Judah while in the NICU, I was surprised at how much our STRUGGLES were a testimony and encouragement to other people.
Isn't it supposed to be our successes and strength and accomplishments that encourage the most? Or is it seeing Jesus' faithfulness in the midst of the storm and struggle? I think the latter.

He is faithful.


  1. You are a beautiful mamma! Thank you for being so real and transparent.

  2. What a beautiful testimony to God's faithfulness and your faith! You are wonderful parents, and it blesses me to hear you profess what a blessing your children are!