Today I’m still reveling in hearing the words “I love you, Mommy” from E for the first time. I’ve been riding that high for a week now.
It has me thinking: What impact would it have had on me to know – on the day E was diagnosed over a year ago – that that moment was coming? To have had the hope that 16 months after feeling like I received a death sentence for my son, I would hear him use his voice to say “I love you”?
It would have given me hope I didn’t have that day. It would have been a distant sparkle in a night sky, a sparkle that said all is not lost. This is not the end. The light may seem far off, but it is still shining.
I need to find a way to magnify that light for others who may not see it yet. For other parents in the dark night of an initial diagnosis, so clouded in despair they can’t see the distant star.
So, I sit down to write a letter. A letter to me.
A letter from my present self to the self I was on the day of E’s diagnosis. The self that I wish knew then the lessons I’ve learned in this journey thus far. The self that needs to hear she will be okay. That her son will be okay.
And maybe one day my hindsight (such as it is thus far) can be another’s foresight as they start their journey. Maybe it can light the path just enough for them to keep going, to keep believing, to find the star in the night sky. To have hope.
The house is quiet so I grab a notebook and sit down to write.
“Dear Self,
I know you are scared today. You are reeling. You don’t know what this diagnosis means, what the next step is, or even how you will put one foot in front of the other to make it to tomorrow.
I get it. You are in shock, you are grieving, and you’ve probably already started crying reading this (Lord knows I’m crying writing it). Go ahead and let it out. Let the tears fall. And remember your loving Father is collecting those tears in His bottle; He’s keeping track of your sorrows. (Psalm 56:8)
You feel alone. But I’m here to tell you that you are not alone.
You feel weak and unfit for the task. I’m here to tell you that you are stronger than you believe. That you are equipped. That God is still on the throne. And that there IS hope.
Do you want to know exactly how strong you are? Strong enough to have spent each day of the last 16 months learning, growing, feeling, crying, falling, and then learning and growing again.
Strong enough to have made it through the first 500 days of this journey, and to be standing with more wisdom, confidence and tenacity on the other side.
You’ve learned SO MUCH. Let me share some of what you’ve learned so far, because you need it right now, on this day, in this moment.
1. Autism is not a death sentence.
I know it feels like a death sentence right now because you see it as the death of certain dreams you had for E. Grieve, but then rise up and remember that E is the same unique, precious gift from God that he was BEFORE the diagnosis. He has not changed; your understanding of his needs has.
2. It’s NOT your fault.
Let me say that again because I know how you beat yourself up: “It’s NOT your fault!” There is nothing you ate or didn’t eat during pregnancy that caused this. Nothing you said or did. Do NOT let yourself believe the lie that it’s your fault — all that will do is rob you of the time, energy and strength you need to devote to your own self-care and education, and to E (yes, in that order).
3. E needs you more than ever.
Congratulations, you have just received a promotion to Chief Executive Advocate. Job requirements include abiding love for your child, dedication to educating yourself, and fierce devotion to fighting for what E needs to learn and grow. Equipment needed includes the full armor of God, the patience of Job, the wisdom of Solomon, and a heart like David’s. And lots of tissues for when you need to pause, let it out, and give yourself GRACE.
4. Everyone has an opinion. Ignore them.
I know you. You give too much weight to other people’s opinions, and most of the time it is misplaced value. So please hear me clearly on this: accept INFORMATION, but ignore OPINIONS. Do the work {with diligence and humility} to arm yourself with facts and information, then make the best decisions you can for E and your family. Unless those other people talking in your ear love your child as much as you do AND will be daily, directly impacted by the decision you are making, they don’t get a say.
And P.S. I don’t care what doctor or specialist you are in the room with at any given time during this journey, remember that YOU are the expert in the room — the expert on E. Trust your gut and don’t back down.
5. This journey is part of your destiny, and his.
God did not make a mistake when He created E. He breathed His very breath into him just like He did for you. He loves him more deeply than you can wrap your head around. And He picked YOU to be E’s Mommy. Do you know much He must TRUST you to have delivered into your life such a precious gift? One that must be tended, loved, and cared for with EXTRA devotion? He knows He can trust you with this mission because He created you for it. And this is just the beginning. He has a mission for E in this, and a mission for you.
The days ahead will not be simple. But you are equipped. You have everything in you right at this very moment to be the Mommy that E needs.
You are worthy for the mission. You will believe that soon, but for right now, you have to trust me.
You’ve got this. I promise. And I don’t break promises to myself.
Love,
Me”