Being a parent can be hard(to say the least).
When they're young the questions come a little bit easier. Why is the grass green or the sky blue? How do I brush my teeth? How do I tie my shoes?
I know with age the questions get harder. Why does that boy like her instead of me? What kind of deodorant do I use? Why do I get pimples? Why do I get bullied? How can I make more friends?
But how many parents can say their children ask "Why do I have to suffer? Why aren't there any answers for me? Why can't I just be a "normal" kid?"
As a parent one of the hardest things to watch is your child suffer and not have any answers.
These are questions my daughter and son both ask me weekly. How do I answer these aching questions, these torturous questions? She sits in pain everyday not able to function like a 13 year old, she just wants to go to school, run track, and play tag without her body telling her "NO, YOU CAN'T!" How do I comfort her in these times of sadness, hurt and confusion?
It's hard enough to be a parent in these insane days we live in, but to add the heartbreak of not knowing something that should be known, the invisible illness that no one can tell you why your body is so different than others.
I try to comfort her in the knowledge that I've been in her shoes, that I had to wait for answers also, it doesn't give her solace, unfortunately. I tell her I will fight to my last breath to figure out how to help her live, not just survive. That gives little contentment, it just benefits her to know that her mother fights so hard but, still no answer.
The only relief she will find is with explanation of her illnesses. Finding the solutions can only come with the right team of doctors.
As of late we've found comorbidities, doctors that can help treat those complications, but no definitive answer as to why she has these life changing issues.
Trudging on seems to be the only solution. Taking one day at a time on this journey,
teaching her how to advocate for herself. Tell them her symptoms, don't let them tell her they're not valid or real. Pay attention to what her body tells her, listen closely and adjust her learning of said feelings.
We should all know our feelings are in direct correlation with our bodies well being. So teaching our children how to come to terms with those feelings when they are happening and meet them with the proper channels.
(Side note;While writing this article my daughter started having chest pains along with other major issues and had to be rushed to the hospital. We spent 12 hours at the hospital waiting for treatment, we found out it wasn't anything life threatening (Thank God!). This is just another example of how hard it is for them, instead of being at home relaxing, talking teen drama with her friends she's sitting in an ER with tons of sick children begging me to go home. The hardest part about that, is telling her we can't until we know it isn't anything serious.)
Having no control is just an understanding we have to have with the powers that be, it definitely doesn't make things any easier in our chronic life.
We all feel like Dori from Nemo and we often say to each other "Just keep swimming, just keep swimming". I guess this is the only way to keep moving and get a small laugh out of these hardships.
Acknowledge how we feel, let those feelings out and continue to go on with our daily lives. Find the small wins(a new good doctor, singing loudly in the car together, laughing at something silly as a family, etc.)
I pray that one day we find answers for her and lift that weight off of her shoulders, after that it moves on to the next battle.
So in the mean time we comfort each other the only way we can and hold each other up when we need it. Family for us is literally what we have to keep us going.
I hope you have the same love of family that we do, this is our heartbeat even through the heartbreak. We are here for one another especially on the hard days.
Until next time, remember to love yourself like you love others and take things one step at a time.
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