What Love Is When You Parent Kids With Disabilities
Love waits in countless waiting rooms of countless doctors for appointments and therapies.
Love smiles at the nurses because you need them on your side.
Love does not dishonor the knowledge of specialists, it does not point out to the Doctor that you know all the “doctor-ease” they whisper to interns.
Love spends sleepless nights researching.
Love is a medical advocate.
Love remains calm when a nurse is digging around looking for a good IV vein.
Love holding a screaming child during procedures.
Love is bold enough to say “stop.”
Love can recite endless lists of surgeries, medications and dosages.
Love knows how to smile so that the child isn’t scared.
Love cries and screams into a pillow in a hospital bathroom.
Love knows the wrongdoings but uses them to be an empowered advocate.
Love does not delight in a broken school system but rejoices in an IEP that is followed by all on the team. Love makes every efforts to set the child up for success. It knows the law and special education codes.
Love protects, always trusts its instincts, holds to hope of a good day’s report, holds educators responsible.
Love pushes past those who can’t see potential.
Love sees potential.
Love never fails because it always tries.
When faced with doctors, teachers, therapist and experts that look into a still not lived future, Love hears them say “never” but “never,” will be silenced.
Love knows that “different” is not a negative term.
Love knows that different is beautiful.
Where there are whispers, pointing and staring in public, they will be ignored — where there is knowledge and a future to be found, Love will travel and save to make it happen.
Love is happy to sacrifice.
Love is a force.
Love is a parent.
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I am a wife, mother and photographer. I have 2 wonderful boys that I always wished for. I spent 6 years going through many fertility treatments and suffered many losses in the process. We finally became pregnant with our son James. He was born 2 months early due to an in utero stroke. His brain bleed cause his cerebral palsy and set our family on a different path than we ever expected. I have become a stronger woman, mother and advocate for my son. Life for us isn’t always easy but I wouldn’t change what I have learned to love. My second son has his on special story as well. We had come to the terms that one child was going to complete our family. In 2014 we got message asking if someone could give our contact info to a young mother looking for a family for her unborn baby. We said yes, and that set a whirlwind of adoption planning. We learned that he was only 4 weeks from his due date. It was exciting and stressful at the same time. He was the best surprise we had ever gotten. ( Even born on my birthday ????) I homeschool both boys and we try to live life that is balanced. Living with a child that has multiple physical and mental disabilities can be stressful. It can also be the most rewarding experience. I try to be an open book so that other mothers don’t feel like they are going it alone. I love to share our ups and downs.
maryellen-pollard