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From Diagnosis of a Disability to Emotions and Advocacy

by Jana Galarus, Family Peer Supporter


March 14, 2023

I am a mom with a child who has a disability. Our daughter was born three months premature. She had failure to thrive, was on oxygen, and needed heart surgery. I remember receiving the diagnosis that she has Cerebral Palsy. I wondered what this would mean for her in her life. There are many types and severities of CP. We were told that she was a left hemiplegia with spastic diplegia. In simple terms, it affected at least three limbs of her body. She was only six months old when we received the diagnosis.

Fear

Prior to diagnosis, we had a lot of fear. We needed to get the vital components for her to come home from the hospital. We needed oxygen and equipment to monitor her safely at home. We advocated to two durable medical equipment agencies that could provide oxygen and a monitor. The first one brought us oxygen equipment for an adult. This would not work safely for her. We reached out to another agency and explained what we needed. They ordered the correct gauge and monitor for us to use so we could keep her safely at home.

We then worked with a team of Cardiologists and found that surgery was necessary to help her to breathe better.

Afraid and Scared

We were afraid and scared of putting our little girl through heart surgery. Will she live through this? Minutes seemed like hours as she went through surgery. Four hours later the surgeons came out and said that two coils were put in her heart and that they were successful. Over the next month we saw improvement in the amount of oxygen she needed.

Anxiety

During this time, we were also caring for our aging father and my husband was working full time to pay the bills and have medical insurance.  We had many sleepless nights. We had alarms going off through the night due to her oxygen and having to adjust it. Feedings were given every four hours to keep her growing and thriving. We were feeding her Ensure by bottles so she could gain weight and grow. We were tired and we were just going through the motions to keep up with everything.

Disbelief

Our daughter was growing and finally off oxygen. She couldn’t crawl or sit up on her own, but she could run all over the place in her baby walker. We didn’t really believe that both of her legs were affected

Advocacy

There is so much more to our story and to share but over the 16 years we have learned to be the best advocates we can be for our daughter. We have advocated for her Educational Rights, Human Rights and Disability Rights. We were constantly learning and standing up for her.

Hope

Never forget to have hope and happiness in your life. I say that we may have to do things differently in life, but we can achieve anything that she wants to do and have out of her life.

 

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