It Doesn’t Define Love
Updated: May 12
A lot of things happen post-diagnosis.
It’s what I called a roller coaster during a tornado.
You better buckle up tight because it’s about to get crazy.
Maybe it’s already been crazy for you, trying to get answers to these questions. Answers to name the things you battle every day.
A diagnosis changes a lot of things. But it doesn’t change love. A diagnosis is defined and explained. But it won’t define your love.
When the details of that play over and over in the silence of the night, during a triggered event, each time you meet a new therapist or physician and you have to start from the beginning. When those things in the past now make sense. When you aren’t sure if the future has become more clear or more clouded. Remember this: you have to love every day until your heart bursts or breaks. Love until you have completely run dry and have nothing left. Embrace every second of it until they are no longer in your arms. Experience the emotions, good and bad, until you feel better.
A lot of things are going to happen now. The stack of referrals to physicians and therapists will look like madness. The words being spat at you that they use to define the monster you battle will sound imaginary. You’ll want to turn back. Run out and pretend it didn’t happen. You’ll wonder in the morning if that was even real. You’ll drive 10,000 miles for appointments and spend weeks away from home. Medical lingo will become clear and you’ll start reading journals about new research for therapies and treatments and options.
Friends will go. Not because they don’t care about you, but because they aren’t sure how to care for you anymore. Tell them what you need. Be specific. Find local and online groups for support, there are other moms who get it. You do not have to battle alone.
Family won’t respond well. They’ll be overly optimistic because they are scared. They’ll ask strange questions because they are trying to understand. Don't walk away, be the rock until they can get there. Grin. Bare it. You are the thread holding this thing together, darling.
No matter what, none of this defines the love of those around you. They loved you and your little one before and they’re trying to love you now. You loved that child before they were made and that has increased ten-fold.
Don’t give up and don’t give in. This does NOT define you.
Hold that tight to your heart as each tough day comes. You and your child are not defined by the ICD codes that cover their chart. You are not defined by the challenges you face. You are strong, capable, loving, brave, compassionate. You are an advocate, a cheerleader, a records keeper, a researcher. You are a forever friend and the only mother that child could need. You are amazing and you are doing beautiful.
One more step momma, you can make it.
Light and Love,