Written by Natalie
Let’s be honest, the journey through the more complicated side of neurofibromatosis with our daughter Mandy has not been easy.
There have been many days of uncertainty, of fear, of desperation, of anger. We have tried to find the blessings whenever we can. One of those blessings is being able to see so much good in so many people. People are really inherently good and kind, when given the chance. We have been touched and humbled so many times in the face of people’s kindness. We will spend the rest of our lives trying to pay forward the kindness, love and support shown to us through her battle. Even then, we will still be in debt.
The heart and compassion that this journey has given my other two children is something that both makes me very proud while simultaneously breaking my heart. They truly understand, way more than they should, about differences and battles, fear and heartbreak. I like to believe these traits would have been there no matter what. But, I am certain they have been honed by the life of having a medically challenged sister. They have an empathy level far beyond their years. In some ways, this makes me sad, but in all ways I am proud of the people they are becoming.
A friends 6 year old daughter passed away and was laid to rest this week. With a broken heart, I shared this news with my children. Many tears and questions followed.
Days later, as I left the house to go to the wake, I was handed two pieces of paper and given a set of instructions.
Mandy, age 8, handed me a painting of a cross she had made with a note, painted on it. “You are a good friend and I miss you. Love, Mandy”
Zachary, age 9, said, “Please make sure you hug her momma from me and tell her I am so sorry. I am worried about her. ”
Alannah, age 14, handed me this poem,
You told your mommy you wanted to go home
sitting in your own bedroom.
Now we understand.
I hope that you have wings,
and all the Webkinz you can fit
on your Disney Princesses bed.
I hope that you never hurt again,
that you’re healthy
and happy
for the first time.
And I hope that between swinging
on swings made of stardust
and sliding down the sunset,
you come down here
and give your mommy a kiss
Goodnight.
It breaks my heart in a million ways to know the path in which they have come to this level of compassion, but I hope and pray that this understanding will follow them their whole lives and will help make a difference in the lives of others as they grow into adulthood.