This is a photo of my sister, Megan, and her 7-year-old daughter, Aubrey. Aubrey was born in Utah about three weeks before I moved from Utah to Seattle. I was thrilled to be able to meet her and hold her as a tiny baby before moving away. She was a beautiful baby, and we all fell in love with her instantly.
As the months flew by, and Aubrey started getting older, she started to miss key developmental milestones. Nobody was quite sure what, if anything, was wrong. Aubrey underwent lots of tests. No conclusive results were forthcoming. Matt and Megan’s insurance company cancelled their policy on a technicality because they started to see huge medical bills adding up, and looked for any way to get out of paying them. (SHAME ON YOU, Primera Blue Cross/Blue Shield. SHAME!) Megan and Matt even underwent testing as well to see if there was some way to diagnose Aubrey’s condition.
To this day, Aubrey still doesn’t have a diagnosis. She’s got severe developmental delays. She’s non-verbal. She has low muscle tone, and lacks fine motor skills. At the age of 7, she’s still not potty trained. She doesn’t have a sense of personal danger. She can’t really make friends with other children. Aubrey has a lot of struggles.
She is also a sweet, loving, wonderful, beautiful girl with an incredible spirit about her. Her big, blue eyes can catch your attention and draw you right in. There’s something very special about her: I just love her dearly.
As any parent who has a child with special needs can tell you, it’s a lot of work: often times, those special kids need constant supervision and mental stimulation. They require expensive treatments or schooling. There is uncertainty about what the future will hold for them, and how they will survive and thrive.
Perhaps the most difficult aspect of having a child with special needs, however, is the emotional toll it can take on a parent. It’s a lot. For starters, it requires facing a reality that is far different than the one you planned for when you were picking out paint for the nursery and cooing over cute baby clothes at Target. It mean worrying about what will happen to your child if/when you are no longer able to take care of them. It means watching on with a broken heart as your child is ignored by other children at the playground, or getting furious when you see other little kids mocking your child because of the way he or she is. It can be a crushing combination of fear, disappointment, and feeling trapped.
I would suspect, however, that the biggest struggle for Matt and Megan with their precious Aubrey is that sometimes communication is difficult, if not impossible. Aubrey can’t tell Megan that her tummy hurts, or that she’s scared, or how she got that bite mark on her arm. She is, in many ways, trapped inside her own mind as well, and Matt, Megan, Aubrey, and Charlie (their 2-year-old son) all have to work really hard to communicate as best they can.
One of my favorite things to do at night before I go to bed is to turn off all the lights in the house, sit down at the piano in the dark, and just play with my eyes closed. I will usually just tinker around like this for 10-15 minutes every night before bed. It helps me relax a bit.
A few weeks ago, I was doing my nightly wind-down, and I stumbled across a little motif in the music that reminded me a bit of the opening strains of Billy Joel’s Lullaby (Goodnight, My Angel). As I started exploring that snippet of music, an idea popped into my head out of the middle of nowhere: If Aubrey were given five minutes to speak to Megan and Matt, to tell them anything at all in the world, what would she say. How could her spirit provide comfort and reassurance to my sister and her husband.
So, with that idea in mind, I started sketching up a couple of verses. It took less than 5 minutes. I played it a few times, had a moment of ugly cry, and went to bed.
That first little bit was easy. The rest of the song, tackled the following night (and the next several weeks) was hard–one of the hardest times I’ve ever had writing a song. I went through about seven or eight different bridges. I changed the verse structure, changed it back, then changed it to something else. There are still a few lyrics that I don’t like. But despite all that, I feel like this song was a gift. It was an idea that just popped out of nowhere, and it took me about three weeks to be able to sing it all the way through without at least getting choked up.
So, to my sister and her husband: you guys are amazing. I’m in awe of your strength and your love. I know it’s not been easy, and your dedication and willingness to sacrifice has been a huge inspiration to me.
And to my little bug, Aubrey: I hope that my humble words do an adequate job of expressing what’s trapped inside your head and your heart. Your giant spirit can’t be ignored.
Music and Lyrics by Matt Armstrong
© 2014 Matt Armstrong
I know this wasn’t how you planned things.
I know this wasn’t what you dreamed.
The disappointment rubs us rough
And when we both have had enough
We sometimes end our days in tears and screams.
You have so much you want to tell me.
And there’s so much I cannot say.
The stories that must go untold
The fear of what the future holds
The phone calls saying everything’s okay.
I prob’ly won’t discuss the future
Nor speak of the life we’ve been denied.
We’ll watch a hundred milestones pass
And greet the ones that come at last
Together, hand in hand, and side by side.
There isn’t much that I can offer.
There’s even less for me to try.
I’m living in the here and now
But hope that you can hear, somehow,
The echoes of my silent lullaby.
As hopeless as it seems
We both still have our dreams
And feel the pain when normal can’t apply.
But silent can’t undo
This love I feel for you
Each time your arms enfold me as I cry.
I may not ever say, “I love you.”
Or tell you how my day has gone.
I cannot take your hand
And say, “I know. I understand.”
Or wipe away your tears each time you cry.
But anytime you’re feeling blue
There is one thing I can always do:
I’ll sing to you my silent lullaby.
Yes, anytime you’re feeling blue
There is one thing I can always do:
I’ll sing for you my silent lullaby.