The two pink lines staring back at me were causing fireworks to go off inside of my brain. It was the Fourth of July, and I took the pregnancy test in order to put my “why am I feeling funny?” fears to rest. I was already the mother of a two-year-old boy and an 8-month-old girl. The idea of three babies in three years terrified me. But that was exactly what was happening.
Whenever friends asked about the pregnancy or gender of the baby, I offered the classic response, “I don’t really care….I just want my baby to be healthy.” If we are totally honest with ourselves; however, we want more. Looking back, I think it was then that I caught my first glimpse of the elephant in the room.
We would never say it out loud, but the truth is many women silently wish for their unborn child to be beautiful, intelligent, athletic, creative, musical and just the right amount of popular. That level of popular which ensures no one will pick on them, but not so popular that they end up being the kid who hosts parties at your house while you are out of town.
The very moment we make assumptions about who our child must be; we unknowingly steal a little of the unforeseen beauty of all that they might be. Before we have ever even met them.
As soon as I gave birth and they placed the baby onto my chest; I knew something was wrong. Why was she so… purple? I expected to see my picture perfect baby, but instead, there was this little person whose face was shadowed by a fiery, crimson masquerade mask…..and yet shared my same blue eyes.I could tell something was wrong. Why was she so… purple? #momlife Click To Tweet
The bruising….if that’s what I was seeing across her face….seemed to continue down the majority of her body.
I was barely allowed to kiss her tiny hand, before a nurse uttered, “I’m just so sorry,” …..and then swept my child away.
Everything went quiet……except for the ringing I now had in my ears. It was almost as if I had vanished from the room, but could still see the bustle of the people around me.
I don’t even recall being taken to my recovery room, but hours passed before any doctors ever came in to speak with me. I was informed that my daughter had been born with two separate and rather extensive vascular conditions; one of which impacts only around 100 children worldwide.
They Called it Birth Marking
They called it birth marking. Lots of babies are born with forms of birth marking, that we give cute names to like Stork Bites and Angel Kisses… this was different.
Over 60% of my baby’s body including her face, chest, back, right arm, right hand, and legs were covered by extra vessels that had no intention of fading. One of the most devastating potential complications was that she might possess a debilitating net of vessels over her brain.
I confess…… I cried for the better part of the two days we were in the hospital. My heart had to mourn the loss of expectations that I had for my baby before she was ever born. My soul had to accept the truth that parenting never gives us guarantees.
As my husband and I walked out of the hospital that cool March morning, all the things I had wanted for my child, what I had imagined for our family…. simply faded away. I was left with the what is, and the determination to be the best advocate possible for my child. I was staring into the face…. of the elephant in the room.
We were thrown into a world of specialists. We were told we needed to see Dermatologists, Neurologists, Ophthalmologists, Audiologists, and the Vascular Anomalies Clinic at Children’s Hospital in Washington D.C.
Receptionists would initially inform me I would have to wait months before we would be able to see any of these special doctors. But after sending an email with her photo and some information, I never knew if I should be relieved or just alarmed when the specialists themselves would call me back saying they had made room in their schedule for us that same week.
We endured a variety of testing and MRIs as we worked our way down a very long check list. In the end the determination was there were no significant medical side affects connected with her condition. I recall the specialists actually being stunned when her brain scans came back normal.
Before we could even catch our breath, we moved quickly into the treatment phase.
The skin of small children heals fast, and so the Dermatologists wanted to begin treatment immediately….. while she was just 6 months old. The protocol utilized a laser technology that promised to diminished the appearance of the marks. If left untreated, we were told that over time the weight of the additional vessels under her skin would cause her face to appear as if it were melting.
Over the course of the next several years, my daughter and I would rise before the sun, and drive to the Children’s Hospital in Washington D.C. Every one of her thirteen laser treatments involved the use of anesthesia. Though I was grateful the doctors let me hold her until she drifted off, there is something haunting about feeling a child’s body fall limp in your arms.
After treatment, my sweet baby looked very much…. like a little cheetah.
As we waited in the post-op recovery area one morning I recall taking a photo of her innocently sucking on a dark purple popsicle. Looking at the photo later; I realized it was the exact same color as the hundreds of dime-sized bruises which covered her entire body.
The difficulty of being in public
Though the bruises were not painful; they did take weeks to fade. Taking her into public was hard. I tried to ignore the elephant in the room, but the questioning looks and obvious whispers of strangers made it difficult to do so.
Today, many deem my daughter’s journey an example of a medical success. In many respects she responded better than I had dreamed to the treatment. Her right cheek and right hand still possess the more obvious lingering traces because they had multiple layers of vascular netting.
She’s four now. We had our first real conversation about her condition just a few months ago. She walked into my office and found me flipping through some of her newborn pictures on the computer. She had never seen them before.
She stared at the screen, frowned, and then said, “Why am I so red? I don’t like it.” I felt a lump form in my throat, but it was the perfect chance to share a little of her birth marking story.
Later that night when my husband came home from work, she bounced across the kitchen floor and said, “Daddy, I don’t know if you know this about me, but when I was born I was just a little bit red.” My husband smiled and simply replied, “Oh really?”
Perhaps not by coincidence, my daughter’s favorite stuffed animal has always been a soft gray elephant. Four years later it still goes everywhere with her.
For me…. it serves as a reminder that one of the greatest challenges in motherhood is helping our children to become the best possible version of themselves….even when that version looks nothing like what we had imagined. I now believe that some of the most rewarding moments in motherhood are found, not when we attempt to ignore the elephants in the room, but when we teach our children to embrace them. I now think its possible these elephants just might be the keepers of the most beautiful parts of our children’s souls.
Summer Smith is a speaker, writer, and motherhood blogger. She and her family are currently navigating the suburbs of Northern Virginia. As the mother to four young children, Summer maintains her sanity thanks to her sense of humor, copious amounts of coffee, and Amazon Prime. Maya Angelou once said, when reflecting on her childhood, that her mother left an impression like technicolor stars in the midnight sky. Influenced by these words, Summer blogs at her website Motherhood in Technicolor, and can also be found on her Motherhood in Technicolor Facebook page.Join the Lose the Cape Facebook community!
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