Dear Mom Letter

Photo: Copyright House of Kosi 

Disclaimer: This is our journey. The medical community instilled a great deal of trauma and fear in us about Down Syndrome, which I think impacted how we handled our particular situation. Your journey and community may be entirely different and I hope that’s the case. But regardless, most parents with this diagnosis I’ve talked with share similarities in how they processed the news. And I’ve learned that sharing your personal story can help others, especially the most raw and difficult parts.

Dear Mom,

If you’ve just received a Trisomy 21 diagnosis and feel the need to grieve – allow yourself to. You need to and have a right to. Don’t let anyone tell you differently. Let yourself feel all the emotions, even the ones you’re scared of. There will be many.

The unexpected and the unknown can be debilitating. Rely heavily on your support system. Be honest about your feelings with those closest to you. And tell them what you need. Even if you don’t know what that is, let them sit with you while you cry. In my case, I had one friend who left her kids at home and drove an hour to my house to make me breakfast from scratch. Others let me cry over dinner. My family took walks with me, got me out of the house and kept me busy when I needed it most. And we ordered takeout when I didn’t want to be that person crying in public yet again. Are you noticing a theme? I cried A LOT. But my support system lifted me up when the heaviness of our situation threatened to keep me on my knees. Because honestly, at times facing a diagnosis with unknowns can and will feel bigger than the strength you think you have to lift yourself back up.

Nothing will prepare you for the stress of this time. You’ll be sad. But you’ll realize soon enough that it’s not quite sadness at play – it’s the enormity of the situation, the sheer unknown, debilitating fear and worry about your child’s health, and the unimaginable anxiety about what is to come.

Share the emotional load with your husband or partner. They’re feeling it all too and may be processing it the same way – maybe differently. Have the tough conversations. Sit in silence if you need to. And wipe each other’s tears. Check in with each other daily and often. We grieved for a while until I caught myself for the 3^rd time saying, “I don’t want to be sad about our boy.” It was in that moment we both realized we didn’t have to be. It was our choice to make. And he deserved for us to be positive, to choose bravery, to choose happiness.

You may not want to hear it (I didn’t) – but it WILL be okay. Hearing that felt like a knife in my windpipe during that time, because I honestly didn’t know if it would be. And everyone who said that to me, had never been in my shoes and couldn’t possibly understand how I felt. It was too soon and I didn’t have the capacity yet to think that way. But looking back? I now know that it was true. Your baby will be perfect and what you never knew you needed. You’ll even have a greater appreciation for everything because of all you’ve overcome to get to where you are.

I’ve said it before, but if back then I could’ve had just a momentary glimpse into our present day life, it would have eased so many emotions and prevented a great deal of trauma. But it would have also changed my journey. I know now that I needed to work through every single emotion. It was part of the process and the beginning of my personal motherhood story.

Over time, you may also feel some guilt. Guilt that you were ever sad or fearful. Guilt that that somehow makes you a bad person or mother. Guilt that you should never have felt a certain way about the diagnosis or your child or the situation. STOP THE GUILT. The truth is that as hard as your experience may be now, it’ll help shape you into a more incredible mom. So be proud. Of you, of your baby, of your journey. Every part of it.

Dear Mom – you’ve got this.

Read more about our diagnosis story here.