When all of the excitement from our thrilling, educational and inspiring Washington trip calmed down, I woke up one morning with Zeke.
Zeke is our early bird. Always has been. If it weren’t for Zeke, Michael, myself and Rocco wouldn’t wake up until 11 a.m. We are grateful Zeke gets up to get the day moving. He is a 7:00 a.m. kid during the school year and 8:00 a.m. during the summer. The hours are great.
I am usually the next to wake up. My mommy senses one of my bear cubs is awake and I need to feed him some breakfast. The great news is, I get “special mommy-Zeke time” which is what we nicknamed it. We make Eggo waffles, I make some Chai tea and we sit on the deck. Now, our new puppy Shay joins us. I actually think it’s my favorite time of the day.
As any mom (or parent) knows, getting one of your children by themselves for any time alone is a wonderful treat for you both. The quality time during those moments are better than any Disney trip or new toy you could ever buy. The best news is we don’t have any agenda. I think of it as a time to just talk and listen but most importantly to hear. I like to hear his take on the/his world. I like to hear his fears or joys for the moments. Also, I like to hear him grow-up as he discusses friend conversations or school worries.
However this specific morning, I looked at him with his speckled body and his boxer shorts. Zeke has recently gotten vitiligo. It is an autoimmune disease whereby your body attacks your skin pigmenting cells. It happened a couple of months ago. At first I was terrified. What would this do to my beautiful, little boy’s self esteem? As I watched helplessly as it spread from his torso to his arms, legs and slightly to his face. I felt frozen and out of control. The same way I felt as Rocco’s diabetes attacked his pancreas. Currently, we are treating Zeke with a steroid cream to dull the spots and stop the progression. My mom, mother-in-law and two of my best friends swear it is barely noticeable. Thank God for my pale, Norwegian heritage. The spots are less noticeable with paler skin.
Regardless, as I looked at him with his newly, speckled body shoving his waffle in his mouth talking light-heartedly about yet another “COOL” thing on Minecraft, I wondered. As I often do, I wondered.
How will Zeke perceive Rocco’s diabetes?
How will Zeke feel about being the one who didn’t get it?
Will he resent the fact that every day is dictated by his brother’s disease?
Will he feel grateful and, at the same time, feel sorry for his brother once he fully understands what his twin will endure throughout their separate lives?
Will he feel Rocco’s pain when they are across the globe from each other pursing their careers?
Will he feel a responsibility to care for his brother in college and in their adult life?
Whenever I meet a sibling of a person with type one diabetes. My first question I ask them is, “Were you ever resentful of the attention they got from your parents as a child.”
Over the years, I have asked about 30-40 siblings. Thankfully, they all look at me as if to say, “How dare you ask that!” and answer, “NO! Of course not, I was always sad that my brother/sister went through so much pain.” I keep asking because that answer is what I want and NEED to hear. I somehow HAVE to know that as hard as I try to make this “no big deal” and “part of our lives” that it is not secretly saddening, harming or infiltrating my other child. That it is not permanently damaging him in a long-term way. It is incredibly difficult to be the sibling of a child with any affliction, especially a life-threatening one. The parent’s attention doesn’t have the luxury of ignoring the situation for a day or even an hour. I am sure this is felt, seen and heard by the sibling. However, it is what it has to be. The parents can just do their best to wake up early with their non-afflicted children, steal precious moments and somehow make them feel “as paid attention to”.
Sometimes, about once a month, I check in with Zeke. I sometime just ask him. “How do you feel about Rocco’s diabetes?” or “Is mommy loving you enough?” So far I have never asked him, “Do you feel left out?” Because I have had friend’s do that and it became that child’s “thing” to pull out if they ever felt treated unfairly. KInd of like if you put the idea in their head they will make it part of who they are. Which ironically is the EXACT reason you asked the child in the first place...
My perfect little Zeke gets what I am asking, I think, and sometimes will talk to me about it. Sometimes he does tell me about a time he didn’t feel heard or loved. I try to explain to him what was happening in my brain at the time, I apologize and it kind of clears the air - even if does kill me a little each time. Because the boys are my “first child” I am trying to navigate my way through each scenario without a compass and without perspective of a previous child. Maybe this is the reason I worry so much for Zeke. I am desperately nervous about making him feel slighted during his childhood.
Anyway, on this morning he said, “Mom, when am I going to go to the Congress?”
I giggled a little about the words he chose to explain his brother’s activity.
“Whenever you want.” I said kind of wimping out and tossing the control back to him. Hoping to empower him. I knew it worked when he stood up, smiled a big smile, made his body into an eqyptian-type stance and then, his speckled self, said, “SAVE THE WORLD FROM VITILIGO!”
As Zeke does many times a day, once again, he reassured me that he his growing up juuuuusssttt fine!