My daughter, Madeline, is an amazing child. She was born just six weeks after Ben was diagnosed with neuroblastoma and has spent every day of her life since then living in the shadow of her brother’s illness. NOT in the shadow of her brother, mind you, but in the shadow of his illness.
Even her birth was overshadowed. No big baby shower. No swarms of people coming to ooh and ah over her because we basically went from the hospital in which she was born to the hospital where her brother was being treated. The night nurses at Children’s were a big part of her first fan club. They carried her around on their rounds, sat with her at the nurse’s station as she smiled her brilliant, toothless smile at all the suffering children on the unit – she was a little “happy magnet.” You couldn’t help but smile when you saw this beautiful, sweet baby. It’s funny that I was so worried about bringing a new baby into our crazy environment when it was she who single-handedly saved our weary souls.
Maddy was a perfect baby. She was rarely fussy. Other than starting off as severely jaundiced, she didn’t have any medical issues – not even a cold – until after she was a year old. And her brother adored her. That was the best part of all. Maddy was a positive focus that Ben needed. Even at his worst – during transplant – she brought a sense of calm and much needed normalcy to our weird little world.
She knew exactly what we all needed.
As she grew, she had to deal with her major milestones being dominated by her brother’s medical needs. Her first steps were taken as I was rushing around the house trying to gather up all we needed to take a feverish Ben to the hospital. Her first day of Kindergarten was spoiled by Ben’s first relapse. Mad’s Kindie teacher was nice enough to make all the kids “re-pose” for that first day of school photo that all the other kids had taken the week prior, just so I could document her first day of school. She’s missed out on countless sleepovers due to potential germs or dashed plans thanks to a random fever.
And she takes that backseat every single time.
But I don’t feel that this has all been a total loss for my darling daughter, for she knows a compassion that many will never understand. Her heart swells when she hears of anyone ailing. And, as for her friends, she tends to be the voice of reason in the midst of adolescent angst that consumes so many young girls at this age. Man. Does the drama start earlier these days or what? I don’t remember so much drama when I was 10.
Regardless, I know that Ben’s medical woes have made her the person she is. And I absolutely adore who she has become. I was trying to remember what I was like at the beginning of Ben’s journey. I was kind of an assh*le. Self-centered. Entitled. Expected my world to be perfect because I’d worked hard on career. But these wonderful little things called children kinda screwed all that up for me – and I’m so thankful. My reason-to-be doesn’t lie in a career. It doesn’t lie in where I live or what I drive or how awesome everything is. I’m still kind of a self-centered turd at times, but ultimately, when I see my daughter wrap her arms around her brother in hopes of bringing him comfort, I know I’m raising hope.
And that’s what I was meant to do.
The last time Ben relapsed, he wanted to be the one to tell his sister. We had just left the hospital and we were picking her up from an outing with friends. She smiled as she saw her brother cross the room to get to her. I watched from afar as Ben’s lips moved, telling her what he knew, and watched the smile disappear from her lips as she listened. She glanced at me. As our eyes connected, I saw the question of “what are we going to do?” and all I could give her was a teary look. I hope I conveyed some strength in our connection but I’m sure she saw my expression of fear. As she broke her gaze with me, she enveloped her brother in her arms and simply held him, rocking him as her face leaned down to touch the top of his head.
What I saw that day was sheer bravery. From both of them. How brave for Ben to share the bad news with Mad, and how brave for Mad to push away her fear and simply give her brother what he needed. No. I’m not raising little assh*les at all.
All this time, she’s been 20 feet from stardom. All the attention that goes to her brother might be irritating at times, but she knows that her supporting role is the role of a lifetime. And it’s been a star-making role for her. She doesn’t get the credit she deserves all the time, but she knows what’s important.
Before you become insanely jealous that I have absolutely perfect children, don’t fret. They do fight from time to time. But at the end of it, when nobody’s looking, I see one of them wrap their hand around the other’s and hold on for dear life. They’re in this together. Undoubtedly loving each other with all they have. Taking a supportive role to each others’ stardom, knowing that being together makes them stronger. Better. Unconquerable.
Against all odds.
I think you all are amazing standing individually but you guys are mind blowing as a team..;)
You have done some thing right dear Sarah…some thing beautiful. You gave this world two beautiful and amazing kids…they are great role models just like you. So love you all!
You have a beautiful family.
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