As I began to formulate what I wanted to write about in this post, I asked myself “What virtues do special needs parents require in order to do what they do?”
It wasn’t difficult for me to come up with a long list. And as I ask this question, I’m sure that it would not take long for anyone who reads this to do the same thing - even with a little exasperation and a little mental thought of “You have no idea!”
There are 2 virtues that hung out in the front of my mind as I thought through the 5 years that we’ve had with Zachary so far. Patience and Time.
Whether it was waiting nearly 3 years for a diagnosis, or our daily watching Zachary walk with his walker and wanting to yell “Dude, just let go and walk!” we have needed so much patience and time over the years.
The hard part for me about writing this is knowing that the amount of patience and time required of me is really nothing compared to what is required of my beautiful and awesome wife. And I know that our story pales in comparison to the many out there who are in far more difficult situations than us. (Serious high-fives to all of you!)
If you were to hang out in our house for a few hours here are some of the things you might hear.
“Zach stop slamming doors!”
“Zachary stop staring at the sun!”
“It’s too quiet in here…Zachary where are you?!”
“Zach did you just poop again?”
“He’s throwing up again!”
I really can’t get mad at him - he’s just too cute!
Most weeks Zachary has at least one doctor appointment, if not multiple, in addition to his several therapy appointments a week. With these appointments come tests and test results. I think to a certain degree everyone knows how difficult it can be waiting for test results, especially when they can be life changing. So much patience is required while you sit by the phone waiting for the call with results.
What we’ve learned is if they say 2 days, we try to lower our expectation automatically to a couple of weeks - keeping our anticipation down and irritation level at a minimum!
Lowering our expectations help with patience in many areas - such as trying to communicate with our mostly non-verbal child, waiting for him to learn to walk, the battles trying to get him to eat, the nightly time-consuming bed-time procedures, repetitiveness in playtime, and on and on.
This doesn’t mean that we lower our expectation of him and how we push him to be better. It will always be our goal to improve communication and see him walk, it just takes a LOT of time!
On that note, that brings me to the other area I want to talk about, which is time. The amount of time that is required to take care of a special needs child is astronomical. For my wife and I it doesn’t seem to matter how much time we put in, it feels like we’ve not done enough.
The natural reaction is to keep putting in more time with the hope we will improve his life. But somehow the only thing that happens is we seem to get more frazzled and our patience wears thin. There comes a point that the amount of time we put into our child begins to take away from other areas of our life that deserve our time.
Here are some things that are hugely important when it comes to our time - areas that we’ve come to learn and can’t ignore.
3. Quality time with the other kids: Kids have the incredible ability to adapt to any situation they are in, which makes it all the more important to set aside time where each of our kids can have our total focus.
4. Get-away time: Two things that have worked wonders for us are once a week date nights where we can focus on each other and relax, and once a year getaways to get a few extra nights of sleep and recharge.
We have found that when we intentionally try to maintain these areas of time not only does it improve our quality of life but it improves our patience with each other, with the kids, and with Zachary.
I do want to make it clear that we in no way think that we have it all together or that we can coast through life. We very much recognize that our journey with Zachary will always be an up-hill battle.
As I watch the Olympians, I see athletes dedicating their lives to their sport all for the chance at a medal, proving to the world that they are the best. For us, I see no medals or interviews about being the best in the world. Just a cute little boy who needs a lot of attention.
As I take a step back, I smile. I hear on the TV about all the time and energy the athletes spend for those little medals. But those medals are really just going to sit around and collect dust and they will definitely never smile back!
Our ultimate goals is to not be great in the world’s eyes but in the eyes of our Lord and Savior Jesus Christ who give us this promise...
“Whoever does it unto the least of these does it unto Me.” Matthew 25:40