There are a handful of moments that stand out so clearly in my parenting memory.
These are the times when I realize that the next words out of my mouth have the potential to significantly shape my child’s worldview, or, if not on that grandiose scale, then they could certainly shape my family’s trajectory through our current trial.
“Mom, what’s wrong with Sissy?”
Or sometimes, the words you grapple for, with every last ounce of depleted energy left in your body, just stick in your throat, along with all the air that has been sucked out of your lungs.
In this moment, all I could muster was, “What do you mean?”
My perceptive, sensitive first-born was asking the question. She had been watching, ever so carefully, as her youngest sister struggled to traverse across the playground at our local library. My oldest spent the weeks prior trying not to over-hear conversations between her father and me, after I spent a well-child exam discussing her baby sister with our pediatrician. Big sister also busied herself when I discussed the appointments, testing, and missed milestones on the phone with extended family and Godparents.
“I mean, look at all the other kids her age. And those that are younger. They aren’t having a hard time. And everyone thinks she’s younger than she is.”
She looked up at me with an expression that implied, “And their mothers aren’t a nervous wreck!”
I tried, I really did, to come up with something more eloquent. This innocent question was so simple, but at the same time, so completely complicated, to answer.
“Her body just isn’t ready to do all that stuff yet. She’ll be fine.”
With that sage wisdom from her mother, my oldest smiled, and bounced across the playground with her friends.
And I filed this moment away, realizing that I really, truly, needed a different answer. I need it not only for the innocent questions, but also to put my anxious heart at ease.
I have spent the past few months, knee deep in specialist appointments, goal meetings, and various therapies with our youngest lady. During these moments, as my mind races between unknowns and question marks, I realized that there were promises I needed to make.
Promises to my Daughter with Developmental Delays
We all have struggles. There are few things in life more certain than this. Some of our struggles are definable by diagnostic criteria and visible to the world. Some struggles we spend our lives silently trying to overcome. One is not worse than the other.
Just because you have challenges today, this does not mean that they will be in your life forever. You will struggle more than some, but less than others.
I promise to be your mother, and no one else. You don’t need another nurse, or case manager, or specialist. God made me to be your mother, and I will do just that.
I will see every piece of information presented to us first, though the filter of being your greatest advocate, second from being your protective mother, and third from my history as a health care provider. It is hard for me to receive information in this order, but I firmly believe it is what is best for you.
I worry about you. I worry that your challenges will stand in the way of a full, happy, and healthy life. But every time I worry, your joy brings me right back to our reality. Which, while it may have a couple of question marks at the present time, is truly one filled to the brim with gladness.
I promise I will attend every meeting, listen to every specialist, and never, ever stop fighting for what is best for you. As I listen to others, I will remember that they may only know your diagnosis, where I know you fully as my beautiful child.
I will mess up. I will do the wrong thing or say what I don’t really mean or get frustrated with the incorrect person. I promise I will give myself grace in the moments when I am less than the mother I strive to be.
Every distinguishable feature of the person God created you to be started with your father and me. Any challenge that you face, we all face. We will approach whatever comes across our path as a family.
Your sisters, who adore you unconditionally, are learning right along with us. They will learn the value of true acceptance and unquestioned loyalty, coupled with the knowledge that their needs won’t always come first.
I cannot promise I won’t be scared. But I can promise you I will recognize when enough is enough and will give you space just to be a kid. I will learn when it is best to push you harder to achieve your goals, and when it is best to take a break and step back.
I will fight to make sure that you are treated fairly, no matter what you decide you want your life to look like. I’ll always say, “Be careful!”, but you won’t hear “You can’t do that!” from me.
I cannot promise that it will always be smooth sailing. We will have ups and downs throughout your life, just like everyone else in this broken world. But, I can promise you that we will come out smiling, and that we will love you unconditionally for the perfect person that you are.
Your smile, the mischievous twinkle in your eye, and the laughter that shakes our walls and rattles our core: those are yours, my darling girl. No one will ever take those from you. No matter what diagnosis, surgery, or treatment plan does, or does not, become yours.
Your spunk and contagious energy infect everyone around you. Thank you for bringing light and joy into our midst each and every day. Our lives are better because of you.
I love this post. She will be better than fine, because you are her mom!
She has a pretty great uncle and Godfather too 😉
What a heartfelt message! It sounds like she has the perfect mom, and no matter what you will all get through this and become stronger because of it.
Thank you, Joanna! Your encouragement means so much!
She’s perfect and beautiful! You got this momma! ❤
Thank you so much!
I feel ya, mama. My five year old has autism. Our problems in his younger years were much different than our current ones! Despite walking really late, he now runs along with everyone else his age. I swear he’s stronger and faster than me. But barely talks, doesn’t always follow directions, and doesn’t understand enough to be schooled with others his age. And we constantly fear for his safety.
But the joy and solace he brings far outweighs those things. Because he’s my son.
That is so beautifully said. Thank you for sharing your story with me.
Such a good read. Keep it up! She’s lucky to have all of you.
Thank you! I hope she’ll think so one day too 🙂
This is beautiful- she will grow up with such a strong sense of self and not be defined by her limits.
Thanks so much– I hope so 🙂
It’s never easy to watch our babies struggle, but she is in the best hands with you and Mike! She is just precious! Thinking of y’all XO
Thanks so much Tyler! Hope to see you and your sweet girls soon!