DAILY LIVING & MOBILITY

So much more than a sibling

Rare Disease & Syndrome

Samantha Isaacs

The first lesson

The first lesson is special-needs parenting is the hardest. Breaking the news to siblings who can understand. I'm not sure there's a single right-way but there are definitey many acceptable ones.

When my son was diagnosed he was only 6 months old, his sisters were 3 and 8 (twins). It's a little hard to explain that he has a brain malformation.

Instead, we let them all grow up together with not a word. We'd give cautious warning about foods, or to be gentle with him when playing. As time went on the older girls realized there was something different, he wasn't crawling or talking and couldn't eat. The younger one didn't know, she had nothing to compare him to.

By his 2nd birthday, my twins, Alie and Brook, knew something bigger was at play. They were 10 and old enough to give them a brief explanation. So I did; I sat down and we talked about how God creates us all differently for a purpose and that no matter what, we are all beautiful and wonderful. I let them know that Hank was going to be different, he would not be able to learn a lot of things the regular way and that he would need a lot of help to do things. He won't be abe to use words but if we pay attention, he can talk to us. This was okay, it gave them the answers they needed to calm their worries.

Emma, now 5, remains oblivious to anything. She's always referred to him as a baby, which suits her age appropriately. She has also not been aware of the abilities of many other 2-3 year olds so she has no comparison. As of late she is noticing some things, speech and walking mainly.

The time came to have the truthful discussion. There was some confusion for them, how did it happen and what will happen now. Will Hank grow up and learn things like them, will Hank be okay, how will Hank go to school. So many questions from their little minds.

I owed them honesty and I watched their face comprehend. Then process. Then accept. And move on.

For Better or Worse

The only thing better than a parent advocate is a sibling advocate. These three girls have taken it all in stride. 

Emma attended 3-5 therapy appointments a week for 3 years. She accompanied Hank to more than her share of doctors appointments and hospital visits. By his side the whole way, she was his own private cheering section. She was an educator, making sure anyone new to him was aware that he was special. She told people he can't hear on that side, or that they need to be near his face, or that he can't have real food. She would hold his hand and sing when things were tough. She prays for him. There were moments when I was sure my heart would break from watching her carry his burden.

Alie and Brook share his story with everyone. All of their teachers know about him and are up to date on how he is doing. They work with him at home and have given him an amazing quality of life. They include him wherever our road takes us; zoos, museums, aquariums, hiking, the park, and anywhere else. They bring him things to see and feel, they point out what can't be brought to him. They want nothing more than to see him smile and laugh at life.

I wonder how I came to be so blessed some times. Hank gave me so much and these super hero siblings have given back to him.

We're all in for the whole ride, better or worse and all in between.

*(Main Image Professional photo credits to Whigham Photography)*

EMPOWER OTHERS!

Share this story to help change someone's life

WELCOME TO YOOCAN

THE GLOBAL COLLABORATIVE COMMUNITY FOR SHARING EXPERIENCES AND KNOWLEDGE BY AND FOR PEOPLE WITH DISABILITIES, SO NO ONE FEELS ALONE.

BY CREATING AN ACCOUNT YOU AGREE TO THE TERMS OF SERVICE AND Privacy policy.

Please provide your name to be displayed in the chat room.