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When I Accepted the Fact That My Daughter Will Always Need Medical Care

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It’s been two years since this amazing, unpredictable journey into parenthood began.

You could say we were slightly unprepared for what we were in for. Never did it cross our minds that there could be a health issue with one of our children. 

We had more than 40 ultrasounds and scans during my pregnancy. Our identical twin girls are a rare form of twin known as monochorionic monoamniotic (also known as MoMo twins), which means they had skin-to-skin contact in the womb. Their cords were tangled in two true knots, all while raveled up in a mess of umbilical cord.

I spent 60 days on hospital bed rest, patiently awaiting their arrival. Not once in a single scan was there cause for alarm about our babies themselves. The only concern we were aware of was the very unpredictable knotting and entanglement. Other than that, our babies were small and perfect.  

We finally welcomed our girls in to the world. The day they were born was the best day of our lives, but something was off. We immediately knew that something wasn’t right the moment we saw our sweet “Baby A.” The doctor’s urgency in getting her to the NICU didn’t go unnoticed either. 

And so it began — looking forward to what’s next. 

I’ve spent the last two years of my life looking forward to the next “something.” The next doctor appointment, the next scan, the next test, the next procedure, the next surgery, the next question and the next answer.

From the very moment we left the doctor’s office, I was focused on the next appointment. When I walked out of therapy with my two babies in tow, I was looking forward to the next meeting. The second we had any test or scan done I was looking forward to the answers. The moment we got the answers I was looking forward to whatever intervention or doctor we needed to see after that. 

I lived with the mindset that eventually this would be in our past, and I would no longer be living for the next “something.”

Now here I am two years later realizing there will always be “something.” 

It’s taken me two years to realize and accept that there is no finish line. 

There is no one appointment or procedure that will magically send us on our happy way. There will always be another appointment. There will always be another test, another scan. There will always be another surgery (as confirmed by our doctors at our last appointment). Our daughter will have many surgeries in her lifetime.

I’ve made the decision to change my mindset. To be present. To just be “OK.”

I have to stop myself from dreaming of the finish line with all of this. There is no finish line for this. 

I have to embrace and know that there will be a lot more challenges for us, for her. What I am trying to remember, though, is that it’s OK. We will be OK. She will be OK. 

We don’t need to have a finish line. 

We need to just be.

Be happy. Be strong. Be grateful. Be willing to embrace this unpredictable and fun life. 

With the help of our sweet girls’ silly personalities and beautiful spirits, we will surely be OK. 

This right here is our “something,” and I vow to be present, willing and ready for anything that may come our way. 

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Originally published: October 11, 2016
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