One of the hardest things to come to terms with has been school. I really had to get over my own expectations about what school looked like, and had to be able to stop being affected by the judgment of others.
Kids with chronic illnesses have several struggles when it comes to school.
1. Feeling healthy enough to be there.
2. Fighting to make up all missed work from when they are absent.
3. Trying to stay away from the sick kids who came to school.
Parents with kids with chronic illness have struggles when it comes to school. All parents have these stresses. Parents of chronic illness kids have this stress almost everyday.
1. Will my kid wake up sick?
2. Is there someone to stay home if they miss school?
3. How am I going to help them with all this makeup work and be at work?
4. Who can pick them up from school when the are sent home?
5. How can I be so cruel to force this child to school?
All this stress was consuming our family. It was literally making all of us miserable. As if Cystic Fibrosis isn’t stressful enough!
One of the consequences of a late Cystic Fibrosis diagnosis is 14 years of improper treatments. That’s 14 years of lung, intestinal and sinus damage. 14 years of treating the bad breathing, without addressing the root cause. 14 years of too many antibiotics treating symptoms, but not the cause. That’s why the girls health has deteriorated so quickly. It’s all those years of mistreatments. Now we start over. Hope to reverse some of the damage already done.
So along with all the other changes, our view of education has changed. Brooklyn is doing online school this year in an attempt to avoid all those germs and restore some health. We’ve tried many accommodations with Lexi. At the end of the day she’s weak. Not necessarily “sick”, but lacking the stamina for school. Her current accommodations just can’t sustain when she’s never at school. So online home bound school for her too. I want to thank all of the young , intelligent, 20 something CFers who have shown me that it’s ok, and best, to chart your own course.
We know people judge our decisions. We know people question our kids not at school. We know. The sting of a comment. The disapproving comment. We hope if your reading this that your supporting our journey and not judging us. We are finding peace. We are taking care of each other. We are finding our way.