Saturday night I put Brinkley to bed without his CPAP machine, so he was not confined to his bed. That being sad, the tiny little voice coming through the baby monitor jolted me out of bed for fear of what kind of destruction I would find in his bedroom if I didn't attend to him quickly. Diapers and diaper cream covering the room, dressers and bookshelves emptied, these are surprises that have welcomed me into his room before and ones that I didn't want to find again. (Need proof, you can follow his shenanigans by looking for #brinkleywashere on Instagram or Facebook.)
As I pulled my earplugs out and started getting out of the bed, I realized he was signing. I stopped to listen for a moment. The tiny little, speech-delayed, voice that can hardly utter a two-word phrase was signing. The tears began to flow as I heard, "loved by you, who I am, who I am." In his broken little speech pattern, he was perfectly in rhythm singing Good Good Father. (You can find the lyrics below.)
Both of my boys love this song and can belt it out with the artists as we listen in the car. This is not the first time that Brinkley has surprised me with this song. A week or two ago we parked our car in the Target parking lot, BIG SHOCKER! (This may have been the second or third trip of the week, I don't even keep track anymore.) As I opened the door to take him out of his car seat he was singing the same lines, "loved by you, who I am, who I am." I had to fight hard not to sob standing there in the parking lot. All I could do was look at him and say, "yes you are and don't ever forget that" as I snuggled him close.
At that moment, a familiar scripture hit me like a ton of bricks. Psalm 119: 11 says, "I have hidden Your word in my heart that I might not sin against You."
It's hard as the parent of a young child with intellectual and developmental delays to know if they understand and process the things that you try to teach them. Some things you can see obvious results, like walking or using utensils, but others aren't so easy. It is hard to know if they grasp the concepts that you try to convey like love, friendship, kindness, etc. It adds another layer of difficulty when speech is difficult for them. They can't articulate back to you what they understood, or didn't.
No matter the depth of his understanding of the words he loves to sing, one thing is certain, the concepts of Christ's love for him are finding their way into his heart. There are a lot of things that I can't control in the environment that my children live in. One thing that I have some control over is what they hear in my car. These incidents, along with Brinkley singing the radio station jingle, prove to me that the things that they hear in my car (and we spend A LOT of time in the car) make an impact on them. Putting truth before them constantly provides a way for my boys to hide The Word in their hearts, even when they don't know that's what they are doing.
I remember sitting at a table in the hospital cafeteria one afternoon while Brinkley was still in the NICU. My dear friend Mindy had brought her husband to meet us and have lunch with us. Sean is also a pastor and the parent of a child with Down Syndrome. At one point during the meal, Bryan asked Sean if he had been able to teach Sid about Christ and if Sid understand. I don't remember exactly how Sean responded, but I think I know the answer. Our God is a Good Good Father and he loves my son so much that He gave His son for him. He loves my son so much that He has chosen him to come to this earth carrying an extra chromosome. He has brought him through two open heart surgeries and may other medical complications that could have easily taken his life. He made him exactly the way he wanted him. Brinkley's genetic makeup isn't a flaw or an accident. It is part of our Good Good Father's plan and I couldn't be more humbled or in awe of being a part of it.
It is my prayer that despite what the world may throw at my boys that both of them will have the truth hidden in their hearts that they are loved by our Good Good Father and that is who they are!
Good Good Father
Oh, I've heard a thousand stories
Of what they think You're like
But I've heard the tender whisper
Of love in the dead of night
And You tell me that You're pleased
And that I'm never alone
You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am
Oh, and I've seen many searching
For answers far and wide
But I know we're all searching
For answers only You provide
‘Cause You know just what we need
Before we say a word
You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am
Cause You are perfect in all of Your ways
You are perfect in all of Your ways
You are perfect in all of Your ways to us
You are perfect in all of Your ways
Oh, You are perfect in all of Your ways
You are perfect in all of Your ways to us
Oh, it's love so undeniable
I, I can hardly speak
Peace so unexplainable
I, I can hardly think
As You call me deeper still
As You call me deeper still
As You call me deeper still
Into love, love, love
You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am
You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am
You're a good good Father
"Saturday night I put Brinkley to bed without his CPAP machine, so he was not confined to his bed. That being sad, the tiny little voice coming through the baby monitor jolted me out of bed for fear of what kind of destruction I would find in his bedroom if I didn't attend to him quickly. Diapers and diaper cream covering the room, dressers and bookshelves emptied, these are surprises that have welcomed me into his room before and ones that I didn't want to find again."
ReplyDeleteThis section reminded me of what my wife and I find a lot of mornings in our son Noah's room. I just wanted to first off offer kudos to making me smile, letting me know that I am not alone in the ups and downs of being a parent of a child with special needs.
I love your blog. I regret not looking for things like this earlier in my journey s a parent with a special needs child.
I would like to possibly ask for your help, though.
I am about to launch an initiative in order to raise money for the National Down Syndrome Society (as well as Autism research, since my son Noah has both). I would like to discuss that with you further; it only requires a read, an agreement, and sharing on your page, if possible. You can contact me @ gffauthor69@aol.com that should be attached to this post. Thank you for your consideration, and keep up the good work (as a parent as well as a blogger!)
Greg F