13. When The Truth Hurts (2min read)

A month passes by and something isn’t right.  With thoughts of excitement, joy, nervousness, worry….you go to your local pharmacy and grab one, two, maybe even three pregnancy tests.  You contemplate on taking the test right then and there in the store restroom, but you hold out until you’re back in a comfortable setting.  Following the instructions on the box (or using your own predetermined thoughts on instructions), you whisk-fully take what might be the best test of your life.  Some may watch in anticipation, others leave and pace back and forth as their mind races.  You experience the longest 3-5 minutes of your life and return to look down.  You’re pregnant!  Who do you tell first?!  Do you keep it a secret?  Do you take another test?

What [not] to Expect When You’re Expecting

I’m sure most of you have heard of the book, or perhaps even the movie “What To Expect When You’re Expecting”.  I personally have never read the book nor seen the movie, however, the title is pretty fitting, and I inserted the “not” based on my own experiences.  During the blissful months of pregnancy, most people don’t expect to be told “You’re Having Twins”, “One is growing substantially smaller than the other”, “You’ll need to be monitored very closely”.  Or even worse, it’s time for delivery and you’re greeted by the on call Obstetrician because your doctor that you spent your entire pregnancy with is out of town due to a sudden death in his family.  But what happens when the unexpected’s from your pregnancy and child birth continue?

My New Normal

Seems as though this is turning into a Movie/TV theme, but my “new normal” was solidified after receiving the results from my daughters genetics test.   I opted to not have an amniocentesis during my pregnancy for personal reasons, so my medical team could only identify my daughter as IUGR.  After delivery, she spent 2 months in the NICU.  After fighting through NEC (necrotizing enterocolitis) and receiving a blood transfusion just shy of turning 2 months, the doctors knew something was wrong, but couldn’t pinpoint what it was without several tests.  A genetics test was performed shortly after her 1st birthday and we received the diagnosis of “Pathogenic Terminal Deletion arr7q33q36.3(136, 176, 399-159,119,707)x1”.  In short, that is a rare disease that affects one of her Chromosome 7’s.  To add to her medical challenges, shortly after receiving her diagnosis, her twin brother was diagnosed with Autism.

Complexity Meets Simplicity

A simple decision to one person, is a complex decision for me.  But you know what?….that doesn’t stop me from living the best life that I can and giving my twins what they deserve.  My parenting truth hurts, but honestly, I learn something new everyday.  Sometimes it’s a new strength about myself or my twins, other times, it’s a new term that keeps me up to speed with medical professionals.  Despite the complexity of raising special needs twins, I try to keep my life a simple as possible.  I’m often complemented on how easy I make this look.  Other times, I’m questioned with “How Do You Do It?”  At the end of the day, my faith helps me stay afloat, and the tremendous amount of support that I receive from friends and family keeps this little engine going ♥

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