Life Challenges, Chronic Illness, Home Schooling and Ninja Kicking

by Leila on January 10, 2012

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.

Much. 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 five awesome kids. They ninja kick through life together. Oh and she is a total jackass.

{ 10 comments… read them below or add one }

Kristi January 10, 2012 at 6:13 am

So proud of you!! This sounds like the best decision for her. Childhood is too short to have her deal with her challenges at school when the safety of home will help her thrive in her learnings. I can’t wait to read your posts on how she does 🙂
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ChiMomWriter January 10, 2012 at 7:15 am

She is so lucky to have a ninja-kickin’ rock star of a mom like you who fights for her and who helps her laugh. You are a strong one, and you’ve clearly passed that along to your kids!
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julie January 10, 2012 at 12:13 pm

stay strong momma! Sounds like you are doing the best for that little girl of yours. eversince i read your story about peanut allergies about a year ago I have brought attention to it with my daughter whenever i can. I showed her your blog posting and the picture of your daughter. (it told you about that already on that post- anyway) My daughter is 4, and she completely understands how some children have allergies and why it is important to not bring certain foods to school. Even though my little one doesn’t have allergies, she understands, and cares. I think it is so important to teach our little ones these things. I feel terrible that there are so many people that don’t do this and as a result you have kids threatening other children with food. shameful.
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Jamie January 10, 2012 at 5:30 pm

Your daughter is very fortunate to have a mother like you, one that is willing to stand and fight right there with her. She will flourish in this home schooling environment, and as for you, if you dream it, it will become possible.

And you are the type of person that can make anything happen.
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Sarah @ The Fence January 10, 2012 at 5:31 pm

Hang in there sister! Holler if you need help… or back-up… or just wanna vent. I totally support you in your effort to make things simpler/better for Kimi. She’s awesome. YOU are awesome. You guys will totally benefit from de-stressing about the environmental stuff AND from the lack of energy parts. Having a better quality of life in terms of that stuff can ONLY make your family of 3 just that much more rad.
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Kindred Adventures January 10, 2012 at 9:31 pm

You know what I am going to say…. I LOVE IT!!!!! Not only did your writing capture your passion for life it shared with me how much love and passion you have for your children and their lives. The piece also flowed and had its own pace. It matched your deep emotions. You give me the sense that you are in such a good place with all of this. There was an ease at the end. I can not wait to follow you on this new adventure. There is already so much I have learned! MWAH BEAUTIFUL!!! and brave too. 😉 -LV
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Claire January 11, 2012 at 8:28 pm

We just started homeschooling, and while I’m sure it will have its own difficulties and challenges, all I keep thinking is, “why didn’t I do this earlier?!?” I am glad that we gave public school a shot this year, because otherwise I may have second-guessed myself more, but it’s made such a difference in my son and therefore the entire family. We may try “regular” (as he calls it) school again in the future, but for now this is working out better than I imagined.
Also, you are awesome for making this change for her even though you know it will be more work for you.
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TheMaven January 12, 2012 at 11:58 pm

You are a rockstar mom.

Sure, home schooling has it’s challenges and ups and downs, but so does “regular” school.

The best part about home schooling? When she’s having an off day and needs to stay snuggled under the covers, she still has the opportunity to learn.

And she’s also learning about flexibility and that there is ALWAYS another way. 🙂
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Maegan January 14, 2012 at 11:52 am

If anyone can do it, and do it with a smile, it’s you lady!!! xoxo


Mary July 7, 2012 at 8:17 pm

I was homeschooled in part of my health struggles (Type 1 Diabetes) & I loved it! You sound like such a creative soul that I know she will thrive, & it will be great she won’t have those CREEPS making fun of the fact she could DIE if she eats something. I bet this will be beneficial to her health, Leila. Keep us posted!:)
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