Welcome back! And welcome to 2018! It’s about time for an update:
It’s always exciting to be able to shout to the world each and every time a new sound comes out of your baby’s smiling mouth, or he shows off a new hand movement. But, when you’re a parent to a child with developmental delays, it’s more than exciting. It’s enthralling! It’s spectacular! It’s been a long, anxious wait that you’ve likely worked on for months during countless hours of therapy sessions and daily practice routines. So, I hope you’ll join me in getting super excited about things that might be frowned upon if done by adults, but are super cute when achieved by babies!
They’re wobbly, they require coaxing, they need the assistance of a walker and foot braces, but they are steps none the less!
J has started his journey towards walking! He will pick up his feet to move and bob his head up and down with pride as we cheer him on. He’s not stepping on his own or able to move himself forward in his walker yet, but he’s making progress- he’s doing something! And when your child has cerebral palsy and high tone/stiff muscles, something small is just as big as the full action. He is still a long way off from walking independently, possibly more than a year still, but that’s just how he does things. He will achieve one small feat, like picking up his feet, and do it for months before figuring out the next step. But he is learning and that’s the goal!
It’s such a weird back and forth to get so excited about these mini-milestones because there is always that cautious voice that kicks in to remind me that it will be a while before he actually achieves a normal milestone. It only lets me get to a level 3 or 4 on the excitement scale before it pumps those joy brakes. That voice sucks! But for me it’s better to be realistic- to have cautious hope. I feel like I have to guard my heart against the breaking that might come if I’m too optimistic or if my expectations are too high. My day to day expectations must remain slightly lower so that I can avoid constant disappointment. I’m sure this all sounds mega negative and sad, but it’s my reality. It’s the reality of most parents of special needs kids.
Please hear me when I write that I’m telling you this because I want everyone to know that I’m okay with how it is. So resist the urge to write me a lengthy letter of encouragement telling me not to be so discouraged. I don’t want to be talked out of my realism, or pessimism as my husband calls it (which I’m also okay with). I think it’s okay for me to be this way. At least for now while things are still so uncertain. But make no mistake, I have big hopes and dreams for J’s ultimate goals and his future. I know he will be walking around and communicating and rough-housing like all the other boys. I know that, not soon enough, i’ll turn around to grab him a fresh diaper only to find that he has run off on a naked spree of freedom. For now we wait and dream of those days that too many parents complain about.
Back to the happiness! J has also begun to swat at and hit things. Everything within reach must be prepared to have a strong, bear paw of a baby hand swooping in for a good smack. This means that he’s finally playing with toys. He loves anything that makes noise and lights up. Smart V-Tech toys, soft books filled with rattle paper, or even just snack wrappers are up for grabs. He doesn’t seem to care for soft, plushy textures, but he goes to town on anything that spins when he hits it. And, as soon as he hits those rattling noises out of reach, he defaults straight to kicking it. Kicking is his specialty! This new skill is so fun and keeps us on our toes a bit more. My morning coffee is no longer safe resting on a table and neither is silverware at a restaurant. Those kinds of things make me feel like a normal parent. Oops, I’m supposed to say typical parent.
Well, typical parents don’t get excited about surgery! So I’d say we’re anything but typical. December 2017 was a month of big decisions for our family. There was a job change and a pretty major medical decision for baby J. He had finally hit 17lbs right at his first birthday in July, but almost 6mo later we sat in the children’s clinic with J’s gastro-doctor discussing his weight loss. Again. Long story short, J was admitted to the hospital the week before Christmas and put under anesthesia to have a gastronomy tube (g-tube) placed in his skinny belly. This was quite possibly the best decision we ever made for him! I’m writing this exactly one month after his surgery and he weighed 20lbs at his check up today! Three pounds in one month is huge! He is on a new, higher calorie formula, eating by mouth during the day and getting the rest of what he needs to meet his daily goal overnight by tube. He’s had a few rough days of throwing up and refusing food, but he is still steadily on his way to chubby baby status at last!
Surgery is scary. Surgery on a baby is scarier. I was talking to my husband last night about how it seemed funny to think about how worried parents get over their sons being circumcised. Don’t read me wrong here! Any surgical procedure is at least a little scary. But as I was thinking about the tube filled hole in J’s belly and scrolling through my Facebook feed full of kids hooked up to multiple types of tubes, some of whom are going through heart surgeries and nearly live in the hospital, I felt grateful. There’s always something going on out there that helps me to keep perspective. I hope that’s what J’s story can do for people. Being a part of several special needs Facebook groups keeps me in check when I start to feel depressed about my baby’s lack of progress or all that he’s going through. Things can always be so much worse! It’s truly crazy. I haven’t always been in a good place for that fact to be helpful to me and you may not be right now either. Maybe you or someone you know just got a diagnosis or maybe something unexpected happened that has caused tension in your family. No matter what you might be going through, allow yourself some grace and the proper time to grieve. And then, in time, allow yourself to get to the place where you can find perspective and compassion for others in realizing that you’re not alone in your struggles. There is always someone who understands your story. Someone has been there already. Someone is there now. And, unfortunately, someone else will be there in the future. Then you’ll be in the perfect place to be there for them the way I hope others are there for you now.
That is the beauty that comes from struggles. We are all here to help each other. What you’ve been through is bound to be just the connection and comfort that someone else has been desperately searching for. Who might you be able to help with your story?
So let it come! Let the steps, the teeth, the growth, the playing, the words, let it all come-no matter how slowly. We are choosing to find joy in each tiny thing along the way, right there in the middle of the tough stuff.
“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13 NIV
Bonus: Stay tuned for a big reveal! I’ve been pretty careful about only listing my son as “J” on purpose. His name has special meaning. It had meaning before he was born, and his birth story only increased that. I am excited to tell you all that story soon!