By Elisa Holt
Over the past 4.5 years, I’ve heard these phrases over and over again when it comes to Noah’s Acute Flaccid Myelitis (AFM).
“Your hands must be full.”
“I don’t know how you do it.”
“I’m so sorry.”
“I could never do what you do.”
I know with all my heart the comments above from friends, family and strangers mean well. I know it comes from a place of love, not knowing what to say and support. While I appreciate it, just remember when you hear these phrases over and over again, it gets ingrained in your consciousness. I felt VERY isolated during Noah’s first year being diagnosed with AFM, and to be honest, hearing these comments only pointed out how different my life is because of my son’s physical disability. Please don’t look at my family and be sad for us. Don’t treat Noah differently because he almost ran you over in his wheelchair. Do not avoid coming and taking my child out because you feel inadequate to take a boy out in a wheelchair. At the end of the day, he is still a 5-year-old little boy and I am a mother. Period.
“Your hands must be full.” Yes, they are, but you should see my heart! Thank you to the wonderful friend who taught me that!
“I don’t know how you do it.” I do it because I don’t have a choice.
“I’m so sorry.” Why are you sorry? My life isn’t horrible. Don’t you have moments when things in your life don’t go your way? So do I, but this doesn’t mean I lead a horrible life. It also doesn’t mean my child won’t live every day to the fullest!
“I could never do what you do.” You could and you would! If one day your child woke up with a life-altering disorder that changed their life and yours, you would do what has to be done. You would do anything for your child.
Noah does get around his environment differently than most, but he is still a regular 5-year-old boy. He head butts his brother, tries to run his brother over in his wheelchair, laughs at things that are funny, gives the best hugs, and loves to talk to everyone even if he is shy for the first few moments. You don’t have to treat Noah differently – he is a kid like any other.
Our doctors at our doctors’ appointments and those who don’t know him usually look to me for answers. How is Noah doing? Why is he in a wheelchair? I tell them, “ask him.” He is old enough now and very knowledgeable about his AFM, and he will tell you how he is doing and why he has equipment. No need to ask me, this kid has it handled! If it’s about Noah, ask Noah. He knows himself best.
As for me, I’m just like any other mom. Takes me forever to get out of the house, I have my bad and good days, I keep a potty in the trunk of my car, and I love my kids!
Mitch and I stand firm that we will never let AFM dictate our family’s future, we just find different ways of doing life.
We all have moments when we get sad and mad about AFM. I would be lying if I told you I don’t picture what life would be like without AFM (time to time), but who doesn’t picture life differently sometimes?
We are all one village running the same race just at our own speeds.
Elisa with her sons, Samuel (left) and Noah (right).