Infusing Love: Identical in My Heart

Infusing Love: A Mom's View
I hear the term “Nature vs. Nurture” often and sometimes hear about studies or watch TV specials with identical twins switched at birth and how alike they still are.  Their temperaments, likes and dislikes, even their career paths surprisingly often fall into similar categories.
Moms Blog_Destinee
That’s not the case with my twin daughters.
Even during pregnancy they were quite opposite. Morgan constantly moved around and Madison (Maddi) barely moved at all.  Their differences have grown to be quite staggering and, in looking back at the last fourteen years, I cannot help but wonder if Morgan’s health circumstances have affected both of my girls in different ways.
Although only ounces apart at birth, Morgan was the smaller one, the fragile one, the weaker one, and eventually was the one diagnosed with severe hemophilia and Aspergers.  By the time they were six months old, Maddi weighed fourteen pounds, while Morgan barely weighed in at seven.  I remember our family celebrating the seven-pound threshold as if it were a birthday!  Friends and family always seemed to feel more comfortable handling Maddi. In retrospect, I’m sure they were nervous and unknowingly treated Morgan a little differently in fear of hurting her. She was, after all, as floppy as a wet towel and was skin and bones, while Maddi had substance to her and appeared nice and sturdy like a firm pillow. This was even prior to knowing about the blood disorder, as Morgan’s diagnosis of severe hemophilia didn’t come until their first birthday. Thankfully, she didn’t start walking until she was nineteen months old and that surely prevented potential life threatening bleeds and an extended honeymoon from hemophilia worry.
As the girls grew into toddlers Morgan was more comfortable sharing personal things about herself and talking to pretty much anyone. Since birth, her body and health have been a popular topic, whether it’s at a doctor visit or social introduction. This has resulted in her having very few boundaries.  She was almost always present during conversations with nurses, doctors, ER staff, physical therapists, school nurses and various caregivers.  She absorbed everything being said about her and many times decided to over-share that information with others. Maddi, on the other hand, differs in her feelings about sharing personal information or being asked about hemophilia.  Since kindergarten, people and/or peers at school have come up to her with concern or just plain curiosity about Morgan’s condition or awkward social behaviors.  She says, “I feel like I am a side effect of Morgan and have mixed emotions when people seem to be more interested in Morgan than me.  But sometimes I am okay with it and feel like I’m the expert when hemophilia comes up in a class discussion. Most of the time it gets annoying and boring, and I get upset because it’s always about her and hemophilia.”
Another way my twins are not identical is when I share information about them to new people in our lives. Whether a child has a chronic illness or not, when you meet someone who will be involved with your child, health is an important thing to cover. For Maddi, it has been so much easier a child has a chronic illness or not, when you meet someone who will be involved with your child, health is an important thing to cover. For Maddi, it has been so much easier: no print out on what to do in an emergency, no need to have a special meeting with school staff or coaches.  Maddi is just your typical kid, whereas Morgan comes complete with an instruction manual, kit and even videos.
When fourth grade came around, an ADHD diagnosis entered our lives after lots and lots of red flags. In my heart I knew there was something more going on and not just the ADHD. I began another journey of what felt like endless IEP meetings and evaluations that would lead up to an Autism Spectrum Disorder, Aspergers and a learning disability called Non-Verba Learning Disorder (NVLD).  The journey came complete with a new chapter to add to Morgan’s instruction manual, one a little harder to explain with no magic kit or video to play.  Meanwhile, Maddi continued to chug along in the wake of her sister, now being held up to slightly higher expectations than before.
After three emotional and chaotic years of middle school, the fall of 2013 would mark a fresh start for each of the girls. I know Maddi desired just to be “normal” and not be overshadowed by her sister’s unfortunate limelight. Morgan desperately hoped to finally make a real friend and maybe get invited to a birthday party or even a sleep over for once.  While Maddi moved up with the rest of their classmates to her freshman year at our local high school, Morgan started her freshman year attending a therapeutic school for children with language-based learning disabilities.  Depending on Morgan’s progress and Individual Education Plan (IEP), it may or may not be for the entire four years of high school.  Although, I have to say, this first year has benefited the entire household in more ways than one.  I’ve seen two girls make large gains in confidence and begin to find their own pathways as well as begin to have a healthier and supportive relationship with each other.  Instead of being compared constantly, they are now able to own their identity based on their personal choices and not as a result of the other sister’s circumstances.
MomsBlog_Destinee_MaddiBetween medical issues and behavioral management, the constant worry and focus for me has often been, and still remains Morgan, Morgan, Morgan.  I am sure Maddi has felt that lack of attention. Of course, I never meant for her to feel less important than her sister. Looking back I hope she has always felt equally as loved and cared for by her father and me.
As identical twins, nature gave them some striking similarities: the same thick brown hair, a smattering of freckles, long fingers and toes,  the ability to devour a basket of steamer clams in less than a minute and their insane obsession with the band One Direction.  Likewise, nature also gave them many conspicuous differences: left handedness, heart defects, failure to thrive and most notably hemophilia and Aspergers.  So it makes sense that the nurturing they’ve received wouldn’t be truly identical either.
The bottom line is that Morgan required more of my time and energy in lots of practical ways: if nurturing was measured in time spent with a child, Maddi got the short end of the stick.  However, I know that nurturing is about giving each unique child the care and encouragement that need to grow.  When or how we do that is as different as they are and should not be measured by a clock by rather by the heart.  And when it comes to how my heart feels about these two wonderful girls, it’s absolutely identical.
Destinee lives in New Hampshire with her husband, Ken, and young adult twin daughters, Madison and Morgan.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.