Schulmeister6Learning to parent a medically fragile baby while also learning to grieve as a bereaved parent was beyond confusing and overwhelming. I know that I am not alone in being a parent of a “twinless twin”. When my babies came into this world 15 weeks too early, we were instantly shoved into parenthood. We were terrified and unsure what this new world would look like. Unsure how to be good parents in the NICU, we were eager to listen to doctors and nurses and learn all we could. When our world crashed down two days later with our daughter’s death, we were suddenly forced into a new kind of parenthood; one of both bereavement and medical uncertainty.

Becoming a parent is a beautiful learning experience but these are not the things I wanted to learn. I didn’t want to learn about PDAs and ROP and CLD and brain bleeds and ventilator settings. I certainly didn’t want to learn about burial options and gravestone choices and memorial cards but this was my intro to parenting.

I thought I knew what kind of mother I would be and this is definitely not it. Being in the NICU while one baby fights so hard for his life after you have just watched his twin die in your arms is devastating. The fear for any parent in the NICU is huge but once you’ve seen the “worst case scenario”, that fear is exponentially greater. Each step forward was coupled with great sadness and grief and each devastating moment of loss was paired with pride of reaching new milestones. The dichotomy of these highs and lows constantly existing at the same time is so difficult to understand.

There is no way that this rocky beginning didn’t affect me as a mother. I’m constantly full of anxiety when it comes to my surviving twin’s health, “Is he ok?” “Is that normal?” “When do I take him to the doctor?” I know that a lot of first time parents have these thoughts but for us who have lived through the worst, it’s just… Different. It’s more real. The fear and anxiety is for a reason. We are walking around with fragile broken hearts and know that we can’t take another loss like that!

The three times that my son has slept through the night (he’s almost 2.5 years old), I did not welcome the extra sleep…I was terrified. Is he breathing? Is he alive? I have great anxiety being away from him or having someone else watch him (even if for a very short time). I know that these (maybe totally unfounded) feelings stem directly from having lost our daughter.

The start of our parenting journey was, well, pretty traumatizing. It changed me as a mother. It made me more fearful, more reclusive, more frantic. It has also made me pray more, appreciate more and love more.

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