Butterfly Child: A Mother's Journey
Like any mother, Silvia never imagined she would have to to bury her first son, Alex, who was stillborn at full term. After a miscarriage she had Nicky, who was…
This group was mostly for women who lost their babies during pregnancy, but several women attended that lost infants as well. I must admit, I was a little jealous of them. They had pictures of their children alive; they had memories, however brief, with their infant. I felt cheated out of any time with Alex, never got to look into his eyes or tell him how much I loved him. At the same time, I felt that they probably felt the loss even more. There is always a give and take.
Since there was not much Nicky could do when he was little due to his fragile skin, his dad bought him a Teletubbies game and played with him, so by the time he was 3.5 years old he was playing all kinds of computer games, from Sesame street to painting and he knew his colors, the ABCs, his numbers and many other things… no lie. He was a smart cookie.
At this point my emotions were a big jumbled mess. I was feeling mourning, anger, shock, guilt, yearning, confusion, isolation, and rejection all at the same time. The way I reacted and lived immediately after Alex’s death was abnormal in any sense imagined.
I was also very happy with his teacher; she was creative, patient, caring and compassionate. She included Nicky in every activity no matter how much she had to modify it. During recess, when he could not go play outside with the other children, she set up a computer for him to play on, and made sure a couple of other kids stayed in the room with him.
Somehow for those few hours I spent with Alex I couldn’t cry. I was in such an elated state to finally see him, comparing features with ours, and I was so proud. I would have done anything to hear him cry, anything!! I was in this weird state where you want to take it all in, the emotions too intense to cry. Tears would not come until later, and they would flow like a river.
The one thing I didn’t like was how paranoid I was becoming. Nicky would sleep in his bassinet, which had wheels, so I would take that thing with me in every room I went, the kitchen, computer room, bedroom, even the bathroom. I needed to be there to hear every breath, every cry. Each and every cry I would scramble wondering why he was crying. Was he hungry? Dirty? Did he have a blister somewhere? He was colic too, which didn’t help matters.
I wrote this book in essence to inspire and educate others about life with EB, the rarity of the condition meant descriptions were often difficult but necessary, and it’s an extension of what I have done since Nicky was born: explaining Epidermolysis Bullosa to others.
Is it any wonder why so many moms of terminally ill children’s emotions are so intense? We worry so much about everything. For many of us, the future is a scary place, no light at the end of the tunnel, our child will never get better, and in many cases we only have to look forward to them getting worse.
I knew that this type of research took not years but decades and that Nicky didn’t have decades. It’s not that a cure for EB was not in the works; the question was when. The answer was, only as soon as funds could be available to pay for the cost of scientific research. Considering the rarity of the condition, the “when” was anyone’s guess.
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The personal journey I was on was to learn to care in ways that became almost unconscious. I would immediately open doors or hold the doors open for people, especially if they were in a wheelchair; immediately got up without a second thought to offer a seat to an elderly person; offered a smile to anyone I saw, and overall learned to see the needs of others without the aide of words. It all became automatic and it shocked me when others didn’t do it.
Because blisters usually should go un-punctured (on a normal person), the nurses did not touch them, but with EB it is of extreme importance to drain and tear these blisters otherwise they can grow and became really big. Because he failed to tell us this, Nicky was in real bad shape. Both elbows were completely skinless, he had a gigantic blister that hanged there like a bag that went from the armpit all the way down and around to the wrist; his ankles were in horrible shape, as was the top...
In his book: “The Story of The Boy Whose Skin Fell Off”, Jonny Kennedy said something that I was now relating to entirely: “I don’t really mix with others with EB. I am probably a lot worse than most, and it depresses me to be constantly reminded.” #EBawareness #EpidermolysisBullosa
When you go through something as traumatic as the death of your child, you find out who your friends really are. Kelly proved to be a real gem, but I had some friends that didn’t know what to say or do, so they disappeared. That’s what happens when your life is littered with tragedies; people don’t want to talk to you because they feel they can’t share their great lives with you or complain about their minor stuff so they don’t know what to do with you, hence, they avoid you.
Nicky was old enough to attend preschool in the fall, but I was apprehensive. It was hard enough for Nicky to be around adults who didn’t quite grasp how fragile he was, how were other 4 year olds going to be gentle? Would they even understand what that means? #butterflychild #epidermolysisbullosa #ebawareness
For a few months after Alex died, and especially at his funeral, I could not shake the feeling of how fragile life is. Each moment is precious. If my husband was five minutes late coming home, I would have flashes in my mind of him lying dead in a car accident. I would even be afraid of going to sleep because I might stop breathing. I had witnessed death before, but it never impacted me this way and this much. I now knew how incredibly delicate life was and I was living in a crumbly state.
While research shows breast milk is best for babies, the reality was that I truly put in an honest effort, and in the end it didn’t work out. Sometimes when you have a special needs child you have to make decisions that are less than perfect. Formula became my best friend. #epidermolysisbullosa #butterflychild
How often the most uncompassionate people are those untouched by illness, by misfortune, by pain? Unless it happens to you, unless you experience it on your own skin, on your own child’s skin, awful illnesses and conditions like EB will continue to be forgotten. The suffering will continue. #EpidermolysisBullosa #EBawareness
When the EB blister forms, there is no Velcro to hold the surrounding area together, so as the blister fills, the pressure from the liquid pulls the bordering skin apart and spreads nonstop. Popping the blister stops the spreading, but it always leaves a wound behind.
At work customers at times would ask me if I had any children. That was a hard one for me to figure out. What do I say? Do I say yes, which would prompt me to then have to answer more questions since without a doubt the yes would be followed by “How many and how old”, or say no and betray Alex’s existence? It took me years, but in the end I ended up with my standard answer of “One in heaven and X on earth”.
I should have known the baby was in distress, I should have known something was wrong. After all, he died inside of me; it had to be my fault! It would take me a long time to accept that things could not be undone, death is permanent and therefore, hindsight is nothing more than an exercise in futility. Not everything is within our control.
I would sell my soul to save my son and for him to be able to live his life without EB. Sometimes I am dismayed and hurt that some people think I must be too lenient with him, how Nicky is overwrapped etc.; I had to defend my actions since the day he was born with Doctors, family, friends and more; as if they know my child more than I do.