Deep breath, you think to yourself. You can do this, you encourage yourself. Breathe in, breath out. You breathe slowly, with determination to calm your brain at this latest hiccup in her life. It should not be this hard to raise a child. You read all the parenting manuals. You have spoken to other moms that you feel are superior and more experienced than you. You have become an expert, yourself, in learning all what all the medical jargon means. You have navigated the State forms, the School IEP meetings and Insurance requirements.
Then then pitcher sends you another curve ball and you have to begin all over again.
No one told me that I would once again have to prove your child has a disability. Not because there was a medical breakthrough. It’s bad enough that the State did not tell us we had to resubmit, that we found out by chance and almost jeopardized your standing. We once again have to complete the IQ testing, the State forms and medical releases because she is turning seven.
In a few days we will be singing Happy Day my girl, but instead of shopping for presents I am scrambling to keep your benefits.
In equal parts frustration, desperation and flabbergastion (yes, this process has allowed me to create a new word—Merriam Webster can thank me) I begin compiling all the documents. The documents that, once again, highlight that your life is different than your sister’s. You haven’t changed, your diagnoses remain the same, yet we have to prove to the powers that be there has not been some miracle cure.
How I wish there was a miracle.
Not that you are not a miracle. You are in so many ways. It’s a miracle you are here. It’s a miracle you are in school and speaking. I just wish there was a magic wand to take away the struggles that make your life more difficult.
I also wish there wasn’t so much paperwork!
Unfortunately there is no Fairy Godmother. I go through the process, hoping that I do not forget to dot an “I” or miss a checkbox that will reject your paperwork. I see the silver lining:
After this submission I do not have to submit again until you are 18. Nine more years before I have to go through this process of keeping your benefits secure; just one of many things you are unable to do for yourself.
I’m the mom; I can handle what needs to be done. Paperwork is no match for my powers.
I wonder if I can set a calendar reminder for 2026?