When Brenna was born, I was weighed down with tremendous guilt about Connor, about how this severe condition would affect him. Though he may have to put a few people in their places when my kids are older, I now also see how this journey is molding him into an understanding, compassionate and patient person. Today's guest post comes from Laurie, mother to four children, two of whom have ichthyosis. It is common for those who have children with genetic conditions to call their siblings without the condition "unaffected." But Laurie acknowledges how truly affected all of her children are by ichthyosis, by the bad but also the good of living with a rare skin condition...
Today my oldest daughter, Jackie, told me that she used to be afraid of children with visible differences. She said that she knows she used to stare at people, but that now, she smiles at them and is no longer afraid.
I have a habit of saying that I’ve got four kids, but that only two are affected by ichthyosis. I’ve been calling my older daughters “unaffected” for nearly 8 years now and never really gave it much thought. It wasn’t until Ichthyosis Awareness Month in May 2013 that I was writing daily Facebook posts about ichthyosis to raise awareness when I thought about my girls and how affected they truly are.
I have four children. Jackie is 14 and starting high school this fall. Julianna is 12 and entering seventh grade. Joseph is almost 8 and entering second grade, and Faith is newly 5 and entering kindergarten.
When my son was born, my older girls were younger than my two youngest are now. They were just two little girls with a mom that worked part time, practicing law and trying to balance everything that lawyers, mommies, wives, and overscheduled families do. I thought I would have this third baby, take a leave from practice for one year, then go back to practicing law.
Joseph tried to come at 28 weeks, tossing all of my plans out the window and forcing me to come up with a Plan B I never saw coming. I had to leave work, and go on what may have resembled bed rest, sort of, in a way with two little girls running around my house all day. Thankfully, Joseph made it to 32 weeks gestation.
From the moment he was born, we knew something was wrong. It took three days to get a proper diagnosis of ichthyosis (Congenital Ichthyosiform Erythroderma, also known as CIE), and during that time while my boy was in the NICU, we were told to prepare ourselves because he would likely not survive. We were scrambling to have him baptized, we were traumatized and frightened.
The choices and sacrifices and effects on all of us were immediately felt. Just a day after being born and placed in the NICU, I had to choose between leaving my son and taking my Julianna to the pediatrician because she had pneumonia. Fortunately, her doctor had an office in the same hospital, and I could take her.
So why do we call them unaffected siblings? From the earliest moments, my daughters have been affected by ichthyosis. Life became a series of difficult choices, doctor’s appointments, visiting nurses, new language, care products, fear, and tears. They were certainly affected by spending so much time being taken to one specialist or another, sitting patiently with toys and snacks, by my side while I tried to convince myself that I could handle all of this by myself.
But it was more than just time consuming to care for a newborn with ichthyosis, more than just a parade of doctors and treatment decisions. My daughters had to learn a new way of living.
Where I was once really spontaneous, everything we did from the day we brought Joseph home was weighed against how our outing would affect him. We could not run to the park anymore if it was too warm, or too cold, or too dry. We stopped joining the zoo because here in Pennsylvania, it is not open long enough in the cool weather to make it worthwhile.
It is difficult to explain to someone that does not have a special needs child, and in particular, a child with a visibly noticeable difference, but leaving the house in the beginning was very challenging for me. In addition to the physical care he required, his visible difference made him the object of stares, comments, questions and unsolicited advice on how I caused it and how I can cure it.
The girls and I felt a lot of stress every time someone looked at us. Long gone were the days of smiling strangers telling me how beautiful our family was. Encounters were replaced by some curiosity, and some (a lot) of cruelty. “Oh! What a gorgeous baby!” had been substituted with “What is that all over your baby?” or “You know, your baby is sunburned!”
As we were settling into a new routine, the five of us, getting better at managing not only ichthyosis, but life with three kids, I found out I was pregnant again.
It was the most challenging pregnancy of them all.
It was summer, and the children came to every appointment with me. Little two year-old Joseph in tow, overheated, bright red, skin white and scaled and peeling. Many people would loudly proclaim their shock and apparent horror at my son’s appearance. They repeatedly did it in front of my daughters who at the time were only seven and nine years old.
My daughters were affected, absorbing the painful words from others and sometimes were even asked direct questions from strangers about why their brother was burned.
They were affected by my crying in the car after being screamed at or chastised by strangers.
They were affected every time we were confronted and waited to see if I was going to be patient or tell off a stranger for being rude and intrusive.
They were and still are affected by being asked to constantly sacrifice.
When Faith came, it was more time in the NICU, more doctors, more stares and unkind words. Faith fought me the entire way, wanting to be born for months but thankfully waiting until 34 weeks gestation. Little, but strong, and seemingly endowed with the fire of 10,000 suns, Faith Maria was born with ichthyosis.
I have grown a lot and changed in the past eight years. I have completely accepted Christ as my savior. I’ve learned that acceptance is a gift and I’ve made friends in the ichthyosis community. By changing myself, I’ve improved the lives of my children. I think that by working on my perceptions, ability to forgive, patience and generosity, I am able to see that life is really good and beautiful and it doesn’t really matter if the hard days are so hard because we have so many good days as well.
We’ve all learned to tell the difference between curiosity and cruelty. We sometimes educate others about Ichthyosis and sometimes educate people about manners. We often laugh about the stares and secretly share the things we vow to say the next time someone is mean. Our favorite response we joke about is that one day we all pretend that we have never noticed that the little ones’ skin is different and to feign being thoroughly shocked.
The girls are older now, and it is easier for them to understand chronic illness. They no longer have to trail behind me to every single appointment. In many ways, living with ichthyosis for them has gotten easier.
And they have also been affected in very positive ways.
When Jackie explained that she is no longer afraid of other children who are different, she told me that she thinks that the kids with special needs at her school all like her and always run up to her to say hello. She thinks that having siblings with visible differences taught her to be kinder to people she suspects have special needs.
I know she smiles at people with visible disabilities. When someone takes a good look at my family and then smiles at me, all the stress comes out of my body, and I am grateful for the smile. I know she does that for others, and it makes me happy.
My second daughter does not coddle the younger kids or treat them like they are disabled. She rightfully reminds me that they are capable of putting toys and dishes away and that I should expect the same from them as I do of the older girls when it comes to pitching in at home. She lets me know when she thinks they are milking their condition to avoid having to help me, or to gain an advantage in an argument. She is often spot on in her observations. She doesn’t seem to see differences in other people. She is an excellent friend to have and another great role model for the kids.
Not everything is a burden around here. There is a lot of love, a lot of joy and a lot of normalcy, which includes sibling brawls, mothers screaming and fathers threatening to punish everyone for the rest of their natural lives. My older daughters are not, however, unaffected siblings. That is a gift saved for all the other children in the world whose siblings are not affected by some disease, illness, condition.
All four of mine are very much affected siblings.
Read all of the posts in the Celebrate Visual Difference series here.