The Secret life of "Typical Siblings"
"Veya" age 4, June 2015
As a parent of a child with special needs life is BUSY!
I know when anyone asks me, "how are you doing?" My response goes two places:
Really busy
I'm tired
I can't help myself, that's just what automatically comes out.
I have 3 children, not just my little Nico and the girls have schedules and appointments too.
But I had never stopped to ask the same question of my Daughter's that people ask me all the time.
"How are you doing?"
So simple, and when I did the results were eye opening!
I had an idea for a book and it is from the perspective of a "typical child" in the family of a Tubie.
I knew I had the perfect person to interview and get the inside scoop,
My own precious Veya!
My 6 year old going on 16,
Spirited and kind
Who is trying so hard to be a little mother.
I sat down and asked her a few questions and I will share a few with you:
Me: "how is is having a brother with a feeding tube?"
Veya: "Awful! I wish he didn't have it!"
I was confused, she knows how important it is for him so I questioned more.
Me: "Why is it awful? it keeps brother healthy and safe?"
Veya: "Because there is a hole in his tummy and he can't drink things or eat very well, I just worry about him all the time mama! What if something happened to him?"
I asked her another question:
Me: "Do you fee like you get enough attention and can tell Mommy and Daddy when you aren't?"
Veya: "No I don't get enough attention and sometimes I feel scared to tell you how I feel."
Instantly my heart sank, my child was afraid to speak to us? so instead of letting it go I dove further...
Me: "Why are you scared? Mommy and Daddy have heard you ask for one on one time when you need it."
Veya: "I do sometimes, but I'm scared to tell you all the time because a lot of the time I get so mad and frustrated that I feel like I might explode mama and I don't want to explode! I love my Brother and wish he could be just like me, and I don't want him to get hurt or be sad because someone might not like his Button"
Wow!
My husband looked at her with such pride on his face,
I was crying and hugged her.
Reassuring her that she could ALWAYS tell us whenever she needed to no matter if she felt like exploding. We need to hear this stuff so that she is taken care of too.
She smiled and hugged me back while we talked about some more questions.
I Share this with you because if I had thought a year ago to consistently ask my older girls "How are you doing?" I may have been able to ease her fears. But also it's part of the constant learning process we are going through as SNP's.
Our time is limited and the needs are ENORMOUS, but we all have 24 hours in a day, and a few extra seconds to check in here or there with our kids.
My son is thankfully getting bigger and older, more independent. He can walk and talk now so I don't have to carry him room to room and he can convey quite a few needs. Now is the perfect time to help remind him and ME that this house and our world are not just his.
We all need to have a voice and sometimes he won't be a part of the special time his sister's need; just like the times he needed me I was there just for him.
I know our situation is not the same as others, your children are physically dependent on you for communication and transportation.
They do rely on you to meet every single need no matter what it may be. I have absolute respect for you and I know you are a wonderful parent to ANY child in your home.
I am not saying "we all will have time..." because in those situations you don't. But there will come one moment, all it takes is one. One moment where we can shift our focus and meet our other kids where they are at emotionally in this crazy, beautiful. exhausting life.
We can't forget that it takes a community, a FAMILY to make it work and my precious girls are wise beyond their years and more adept at caring for their brother than most adults would be. They live it, it's their "normal".
