Kid’s should be able to run wild and free…
and us parents hope that they won’t fall, bruise or break.
They should laugh so hard that it seems to hurt…
and sharing that laughter with them makes us young again.
Children should have endless energy, don’t have the weight of the world on them and nothing but hopes and dreams consuming them…
Except if that child is chronically ill.
That child may not be able to run and if they do the bruises or breaks within their bodies already exist.
They may be in too much pain to laugh… but they do anyway… because that laughter will help them feel like any other child… even if it’s only for a moment.
She is nine years old. She is one of the most loving, caring and giving children out there. I’m not saying that because I am her Mom. It’s what defines her even when she has bad days.
What defines her isn’t her life threatening food allergies, auto-immune disease, gastrointestinal disorders or her achy muscles and joints. She shouldn’t be defined by her illness but it’s a fight.
I fight for her in so many ways. I fight for a normal life that she deserves.
Just figuring out what defines a “normal life” is a challenge in itself.
I want to see her have a life filled with more energy, laughter and acceptance. I know I can’t make all of her health hurdles vanish. I can’t heal wounds that even her doctors can’t figure out. All I can do is what I’ve always done… and make the most out of the cards we were dealt with.
She is too tired to make it through most School days but she continues on so other kids don’t notice she goes home early often. She tries to control her bladder and bowel issues at risk of having accidents because she is tired of other children making fun of her using the bathroom so much. She has kids at school mocking her… they think it’s funny to threaten her with the foods that can cause her to die.
I’m fighting for her to have that kind of life?
I’m not angry at those children. They don’t understand the magnitude of death…
Unfortunately, my daughter does.
“Childhood is over the moment you know you’re going to die.” – The Crow
She was born with life threatening food allergies and unfortunately has to be aware of that horrible fact in order to keep her safe.
I hate that.
She is nine now and I don’t want her to lose these last precious years of childhood sucked up by her trying to just make it through the days.
What kind of life is that for a child?
We are moving forward with Homeschooling. It’s not a new concept for me. When she was a baby I thought we would be a homeschooling family. We have home schooled during times when she didn’t have the energy to attend school…
Now, we change our lifestyle so she can have the energy to live a full life.
The goals in our battle for her life change now. There will be judgment, negativity and adjustments. It’s going to be really freaking hard to juggle all that I do now as a single Mom plus homeschool.
I say bring it on… cause we are ready to ninja kick some more obstacles out of our way.
And despite my daughter’s body being frail at times… that little girl has determination that no one can mess with.
Which makes me worry about her teen years… but that will be yet another obstacle to face later.
About Leila DontSpeakWhinese
Leila, aka The Ninja, is the advocate for all things not whining. Parenting is fun when everyone stops b*tching! She is the Mom of a big blended family of four awesome kids. They ninja kick through life together. Oh and she is a total jackass.