How my baby’s NICU journey changed me as a mom

I was told my whole life I wouldn’t be able to have a baby due to my Type One Diabetes.

And so when I got pregnant, I felt like finally…this was going to be my redeption story.

After years of turmoil managing a chronic disease.

After years of hospital stays and doctors appointments.

After years of feeling different and like the odd one out.

Millions of shots and blood glucose checks.

Years of being told a baby wasn’t in the cards for me and going full term would be near impossible. 

Related: What not to say to someone who is trying to get pregnant

Doctors telling me it would be too dangerous and stressful on my body.

I did it.

I did the impossible.

I did what they told me for years I couldn’t do.

I got pregnant and gave birth to our little girl.

And yet, it wasn’t the redemption story I’d imagined in my mind.

All of that hardship I’d endured hadn’t given me the perfect birth story, the healthy baby, the beautiful birth announcement, the cherry on top of the sundae, or the fairy tale as a reward. 

That struggle I’d endured, the hard things I’d walked through, and the challenges I’d overcome didn’t mean a thing. There was no pot of gold at the end of the rainbow for me or our family.

Related: A letter to my pregnant self before I had a child with a disability

Our daughter was born seven weeks early and was diagnosed with Tetralogy of Fallot, a chronic heart condition that would need immediate open heart surgery to save her life. She was also diagnosed with a substantial lower limb difference in her left leg that would require an amputation. 

I felt cheated. I felt like I’d had my hopes, dreams, and years of silent prayers ripped out from under me. As I sat in the NICU for ten weeks, watching other families leaving with their now healthy babies, I felt like God was handing out my dreams to other people. 

The thing that I didn’t know at the time was this: I hadn’t been cheated—I’d been chosen.

Why did they get to have the fairy tale? Why did they get the healthy baby? Why did we have to suffer with uncertainty, fear, anger, disability, chronic conditions and grief? Why did we have to drown in a sea of medical bills? Why did we have to meet with specialist after specialist?  Why did our daughter have to have open heart surgery? Why was our daughter born with a limb difference?  How was it even possible that their baby would be able to walk… and ours wouldn’t?  

Related: On wondering if I’m a good mother to all of my boys

Why us?

I was heartbroken, grief stricken and so angry.  

The thing that I didn’t know at the time was this: I hadn’t been cheated—I’d been chosen.

Chosen to be her mama.

Chosen to be her advocate.

Chosen to be my husband’s soft place to land.

Chosen to navigate this new world of parenting a disabled child.

Chosen to be her champion.

Chosen to be her voice.

Chosen to be her ally.

Chosen because I was strong and resilient.

Chosen because I knew what it was like to be different from other people.

Chosen because I can do hard things.

Chosen because I’m stubborn as ever.

Chosen because I know grief and loss.

Chosen because I understand how to find joy in the everyday.

Chosen because I don’t quit.

Chosen because there was no one else more perfectly suited to be her mother than me.