Coming Home – Mommy of a Miracle

As a parent to a child with a brain injury, we long for the day that we can finally take our survivor home from the hospital. I was terrified to bring Isabella home.  She was a different child than the one I walked into the emergency room with.  I was different too.  Life as we knew it had forever changed.  I had seen Isabella dying before my eyes and I watched her survive against all odds.  In the hospital I was constantly surrounded by doctors, nurses, therapists, someone was always there to help. Bringing her home meant I was going to be on my own to do it all and I was terrified.    I was afraid I would make a mistake or do something wrong.  I was afraid that I wouldn’t know what to do.

Looking back almost five years, these are a few of the things I wish I knew about prior to leaving the hospital:

  1. Make sure outpatient services are set up before you leave the hospital. Ours were not and as a result Isabella went a month without any sort of physical therapy, occupational therapy or speech. I had a child that was physically a toddler just learning to walk. She had sensory needs that I didn’t know how to help with. Isabella struggled with being able to get her words out or even remember what things were called. Not having services for an entire month was challenging at best.
  2. Safety proof your house. When Isabella got sick she was 4.5 years old. However when I brought her home, cognitively she was years younger. It was like having a baby all over again. There was no sense of safety awareness. Everything was mouthed. I quickly found that all plugs needed to be recovered, small toys needed to be put away, etc. Things I never even had to deal with when she was a baby were now a safety concern.
  3. Find a medication system that works. When we came home from the hospital Isabella was on a ton of medication. I had to learn quickly how to organize it all and how to ensure all doses were taken. I started an excel spreadsheet listing each one, reason for taking, dosing amounts, and times to take. I also had a place to check it off as I went. I had the medicines lined up according to their dosing schedule in a cabinet so that I could have easy access.
  4. Find a support group. You will need it. You will learn that people eventually go about their lives and move on from your child’s brain injury. While yours will seem at a standstill. Having a support group to help you cope with the changes will end up being your lifeline. This journey gets lonely really fast. I honestly have no idea how I managed the first two years without mine. Support groups can be online through social media or physically in person. Find one that fits with your needs.

Most importantly when you are bringing home your child, remember that you once felt overwhelmed about bringing home a newborn. You successfully brought them home.  Mistakes happened, adjustments were made and it was a lot of work.  However at the end of the day it was worth it.

“I’m not telling you it is going to be easy, I’m telling you it is going to be worth it”

The Notebook

kristin and isabelle aug 2015Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 9-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publicationCopyright 2015 BIA-MA.

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