Today, I am attending a meeting to talk about assessing Spencer for either an IEP (Individual Education Plan) or a 504 plan, similar but for Medical situations.
My Seven year old is struggling with socialization, stubbornness, organization, concentration. His teacher thinks ADD might be in play, but the problem I have is that I may never know if he inherited it from his father, as his brothers did, or if he got it as a result of the years…years of toxins in his body. Pills, Steroids, needles, Lumbar Punctures, antibiotics, so many things. HUNDREDS of treatments. Thousands of pills. Pills I was warned not to handle with bare hands (I ignored this. I’d be damned if I was going to feed something to my three year old that I was too afraid to handle) IV chemo. Hell. He went through hell.
This is his medical file from the three years. Medication charts, an Advanced Directive. I had to sign a fucking advanced directive for my three year old. That, he never knew. There was a chance, though rare, that he would die, either from the chemo or complications that he could get from the fact that his immunity was tanked. I had to face the fact that my kid was potentially going to die. He didn’t. But I know many grieving parents from many different cancers.
My son faced these challenges with a bravery that he taught to me. But he may continue to face obstacles for the rest of his life from the treatment that got rid of his cancer. And it breaks my heart. So I am going into the meeting with information from the chemos, the side effects that may not present for years. The picture of the files. The advanced directive. A book talking about life after Childhood Cancer. I am going armed, prepping for battle and hoping there isn’t one. We’ve fought enough of those already. And we will have more to come.
Working on Creative Chaos 