Our many Faces

Lisa Lee | Schizencephaly Awareness
31 Mar 2013

Many times as a mom I hear people say comments that amaze me.

I have heard crazy things like:
When will her/his brain grow back?
Do you think she/he will ever be normal?
Is it permanent?
Your doing a great thing?

The list goes on and on.

If you ask parents and Grandparents of Schizencephaly children they say this:

Ilcia
Best is that my son changed my life and for nothing in the world I won’t change a thing

Worse well seeing my son wanting to do things other kids do walk play or talk breaks my heart

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Jackie
I agree with Ilcia with the best. Definitely I am a much better person because of him.

As hard as it is dealing with this, the worst is dealing with outside parties…. insurance companies (appealing for recommended procedures by his physicians, etc… and constantly being denied), school system (being an advocate and getting services, making sure the IEP is enforced, etc..)and “not so smart” people who try to force their opinion about what you are doing wrong

Diana
Best: Our Andyman was sent to us directly from God. Andrew taught our family the fruitages of the spirit in Galations 5;22-23. Love, Joy, Peace, Long-Suffering, Kindness, Goodness, Faith, Mildness and Self Control.

Worst: Knowing there are wonderful treatment options and better equipment but you can’t afford any of them. When you see other people with proper carseats and mobile vans and you have to still lift the wheelchair into the back with no ramp. You cant schedule therapy sessions because no one else can take him to any appointments because they cant lift the chair into your van. It breakes our hearts to not be able to meet this angels needs. When you have to rig pillows as a carseat to transport our Angel home from the hospital is a shame. Sad thing is,, I’m just a gramma and cant muster the energy to get a second job… you don’t have to add this one.. Worst should never exceed best

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Jenna

Bubbie has bilateral open-lipped Schizencephaly. No seizures, about normal intelligence, totally dependent on us for mobility and care, feeds himself a little, a whiz at technology when it’s accessible to him, a sweet and lovable boy!
The thing I like most about schizencephaly is that it is probably the reason I have Bubbie. Had he been healthy, his birth parents may have not placed him for adoption and I wouldn’t know the blessings of having him in my life as my son.
The thing I dislike the most about schizencephaly is the limits that it places on Bubbie.

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