Saturday, August 18, 2012

Special Kids Have Special Hearts

Changing Hearts & Saving Lives--
In Loving Memory of my precious son, Brian

Admittedly, having four children of varying disabilities wasn’t easy. Raising them turned out to be an even greater task. However, I wouldn’t have changed a single day of it for any other child in the world!

Robert, my eldest seemed perfect from the day he was born. He ate well and slept even better. Twelve hours straight through the night at three weeks old. Who knew parenting could be this easy! His motor skills seemed fine; he grabbed things, rolled over, and even began crawling at around 8 months old. Developmentally, though he showed signs of struggle. Since he was still only crawling at a year and a half old, I became concerned, wondering if he’d ever walk. But by the age of two, and just the time our second child, Melissa was born, he was walking fine.

Melissa was a handful from the get-go! Obviously nothing was wrong with her development. She was into literally everything and expected me to catch her when she dove off the couch or jumped from the top of the stairs. Tragically I didn’t always get there in time. And it didn’t matter how many child safe gates I put in place, she could get past any barricade.

Soon after Melissa turned a year old, we had another beautiful baby boy, Brian. 

Brian was way different than the other two. He cried a lot, acted starving, but would fall asleep as soon as he began suckling at my breast. There were other weird symptoms that left me unsettled too. He coughed, sneezed, and breathed funny. I must have called the hospital every day, only to be assured that everything he was doing was normal. Still my motherly intuition would not be convinced.

Finally at three weeks old, I took him to see a pediatrician. I’m so glad I did! We were only in the room mere minutes when she detected his life threatening condition. “You need to take him up to ER right away for blood tests and x-rays,” Dr. VanVloten said. “He has a hole in his heart. It can be a small one, with an underlying infection making it sound bigger. Or it could be a very large hole. I won’t know until these tests are done.”

So many disturbing thoughts raced through my mind as we hurried to the hospital. I’d only heard of one other baby having a hole in their heart and that child was given a baboons heart and didn’t live long. Oh, God please no!

Thankfully Brian didn’t have infection along with the huge hole in his heart. His condition was life threatening enough on its own. He was transferred to Ingham Medical Center in Lansing where they diagnosed him with Tricuspid Atresia and Transposition of the Great Artery, which meant he only had two chambers in his heart, with a single functioning ventricle, and that the good blood and bad blood were mixing together and flooding his lungs.

In his first two months of life, he had two surgeries, one open heart to put a banding in pulmonary artery to restrict blood flow in the lungs, and the second to enlarge the aorta so that moderate blood flow could reach his lower extremities. Even then, doctors weren’t sure if Brian would live to see his first birthday.

Life was just a little crazy! On top of Brian’s special dietary needs and medical needs to keep him stable and thriving, we learned Robert had A.D.D. and Melissa had dyslexia and severe emotional impairments.

Three special needs children all under the age of three. Honestly, it was a little stressing to say the least. But we got to watch from the sidelines as each of our children climbed through each obstacle and hurdle in their path to accomplish what teachers, nurses and doctors said they never would.

Melissa couldn’t read, but she fooled us, because she memorized all of her favorite books. So I didn’t know about her true dyslexic issues until she was much older. And Robert was held back twice in first grade because he couldn’t write all the letters of the alphabet. One teacher even embarrassed him and called him dumb in front of the whole class. Back then there wasn’t much done about bullying, so we dealt with it the best we could.

As time went on I had baby number four! 

Jeremiah came into the world sweeter than pie. But after falling out of a cart at Walmart and hitting his forehead on a curb stop, he had a severe head injury, and battled extreme psychological conditions. At the age of three, he was brutally attacking our older children. By the age of five he was getting kicked out of school for hurting others. He was diagnosed with everything from A.D.H.D. and O.C.D to O.D.D. and Bi-Polar. A psychiatrist evaluated him weekly and wrote prescriptions to treat everything from bed wetting to mood swings and sleep disorders.

Jeremiah was only getting worse, and he even chased our kids through the house with a knife. We continued fasting, praying and doing everything humanly possible to make him better. Finally when he was eight years old, he was healed, after a couple came and spoke at our church and laid hands on him for healing. Within days he was off all the medications and did amazingly well. The principle even called to say what a difference he’d seen in him.

While we were taking Jeremiah for therapy, we learned that Brian had Asperger’s Syndrome, which is a rare form of autism, something that was hardly heard of twenty-four years ago when he was born. This made Brian even more different. I loved that difference though. He was much more aware of things I took for granted. His sense of touch, smell, and sound were amplified.

I can remember taking Brian into Meijer’s with me when he was about three or four (before we knew he had Asperger’s Syndrome) and he spread his arms like an airplane and began touching all the clothes hanging up. Then he suddenly stopped when he got to a very large pregnant woman and began outlining her belly with his hands. Thankfully she smiled. Still a little embarrassed, I apologized and tried to explain to Brian that he needed to be more careful what he touched.

No matter how many warnings I gave him, Brian was his own person. His sensory skills were over functioning. So he touched everything, even our new flat top range when the burner was red hot. Thankfully he wasn’t burned badly. He also loved to smell things, especially foods, and began cooking thanks to his father’s culinary skills. He would make finger and hand motions along with swishing sounds like airplanes whizzing through the air. His ears were very sensitive and disliked loud noises. His eyes were drawn to every dictionary, Bible, and Discovery Channel ever made. I was baffled by all the knowledge he often shared.

Yet, because my children were gifted with what I call amazing special abilities, they were often sought out by others and made targets for bullying or to be left out and not included. I somewhat understood the school bullying, but when it even happened at church after church, I was disheartened.

Sadly, my kids (nor I) had many friends growing up. Still we had each other. I didn’t focus on what they couldn’t do, but always told them they could do anything they set their minds to. The only limits we have are the limits we put on ourselves.

Even though there were some major challenges, all four of my children graduated from high school—even Brian—with honors!

Brian amazed me the most. When he was bullied severely in school I was so upset and wanted to let them have it. But Brian had a change of heart, and instead of taking revenge on his bullies, he loved and forgave them. He wanted the bullying to stop, and to help victims, bystanders, and even bullies to change. He knew they could change with the right help, and realized very young, that bullying is simply a behavior, not who a person is.
Brian was on the heart transplant list for five years, yet he wanted to travel with our Abuse Bites Program and go all over the USA to take this healing message of hope to others. He often said, “Mom, you can’t go without me. Besides, the doctors aren’t going to give me a heart anyway, God is, and I want to help others.”

Just as we were getting ready to go on this mission, Brian passed away. Soon after we found a change jar he’d been saving. It was then that we knew we were to collect change, so we could go all over like Brian wanted, to change hearts and save lives.

Having a child, like Brian, literally changed my heart and saved my life. I am so much different and better because of him (and all of my children). Looking through his eyes, I’m able to be totally loving, accepting and understanding of every single person out there, even the seemingly unlovable ones, those we often refer to as “bullies”.

Written by:
Lisa Freeman, Founder & CEO of Abuse Bites (a non-profit organization to stop abuse, bullying and violence), Lifelong Abuse Survivor & Advocate, Healing Projects Specialist for Bully Police USA, Award-Winning Author & Speaker, Certified Pet Therapist & Dog Trainer

Website: / We offer healing workshops to stop abuse, bullying and violence—bringing CHANGE to all in memory of Brian.

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Anonymous said...

Lisa you have a God given talent, a very special young women that trusts God and is so loving and compassionate, keep up the good work that God is leading you into....God Bless you and your family!! in Christ Jesus

Lisa Freeman said...

Thanks so much! Good to hear. Working hard to help others, and praying God continues to use our hands, feet and paws to do so! Changing Hearts and Saving Lives!