חיי היומיום וניידות

Learning to Live Again: Hank's Story & Diagnosis

חסר תרגום בשפה עברית. מוצגת שפה אנגלית
מחלה נדירה & תסמונת

Samantha Isaacs

Hank, my hero

Life was beautiful on the 13th day of May. This perfect little bundle of joy was brought into the world and all was well. We can fast forward through my bliss and all the euphoria those first 3 months brought. In August, sweet baby Hank was diagnosed with hearing loss and referred to a Geneticist.

A short 2 months after that, I sat in the clinic and listened to the physician explain as best as she could the finding of all the testing.

Hank had a congenital CMV infection, his immunoglobulins were still elevated. As a result of this infection, which was estimated to have been from early in my pregnancy, Hank has a rare brain malformation called Polymicrogyria. Polymicrogyria literally translates to "many small folds". It's simply complicated. Too many folds on the brain mean that his brain is unable to form neuro-pathways that relay information. His brain can't talk to his body.

Because of his malformation, Hank maintains the skills of a 6-9-month-old (he turned 3 this year). Hank is non-verbal and currently with no assistive device. He's limited to the use of a handful of photos of things that he recognizes. Hank does not have any independent physical skills, he has spastic and hypertonic muscles; we rely on equipment to meet all of his physical needs from sitting and standing to walking.

He eats orally, but it must be completely pureed foods, nothing that requires chewing. He drinks homemade smoothies and a meal replacement to ensure he's getting proper caloric intake and nutrition. He has hearing loss in his left ear and cortical vision impairment.

It's quite a list of the things he "can't" but we focus on what he "can" and that's so much more. Hank's smile can light up a room and is so infectious. He brings joy wherever he goes. He enjoys the park and going for hikes. WalMart is his favorite place to go. He attends preschool and loves art class. He is fascinated with electric trains and the piano at church. 

Hank has 3 older sisters who have slowly been taught what his condition means and they've embraced him. They take opportunities to show him things and to teach others about him. I don't believe in hiding away because of Hank's needs either. We live our lives in an adapted normal. Trips out of town, museums, aquariums, hiking, and the park. We are involved in our community through 4-H and a local foundation for special needs kids. I am diligently working with the National CMV foundation and state-wide physicians to educate doctors and the public on the impact of CMV. We travel and explore. We cannot wait for the world to accept disabilities, we must simply go be a part of it.

Hank has touched the lives of so many people, with over 700 followers on his Facebook page and many who follow our WordPress blog. We're showing the world that we won't be defeated by the fragility of life, we must carry on. Through this roller-coaster of tragedy, we have found triumph. Hank has taught us unimaginable lessons, things that we would never have learned without him. He's brought a joy we didn't know was missing. Our days are so bright with his presence. While he cannot do many things because of his disability, because of his disability he is able to teach so much.

Thriving with the Thorn

A thorn in our flesh is such a vague description of something we are going through; addiction, health, relationship struggles, financial hardship, grief and loss, or unexpected life changes. They can be our own personal thorns or a secondary pain from a loved one. Either way we look at it, we all have one. Each and every one of us. My thorn came in the form of an (unknowingly) sick infant.

Shortly after our arrival here in Florida, we started to attend a new church. There was this pull (or push maybe) to drive the distance to the church and I have never looked back. I had been there only a few weeks when I met a woman and her daughter. Her little girl had a condition and I was holding on to the secret of Hank’s. I asked her age, and as God would have it, she was 1 day younger than Hank.

Hear me clearly; 2,197 miles away from each other we were delivering children with exemplary needs. Both of us unaware. To find each other at a church that sits nestled in the backwoods of a rural town in northern Florida on what is called the “Forgotten Coast.” You won’t ever convince me that there was not a divine plan here.

I shared my story with her and while we shed some tears together, I knew that this is why I came here. I was brought here because I was not alone here on earth and that was my saving grace. At alter call that day, I walked forward to the associate pastor, Brother David Allen, and I gave him the short version of what was going on with Hank. He put his hands on my shoulders and pulled me in and he whispered, “We’ll love him anyway.” 4 words that held me tight. There was my final push. I had a choice to make right there. I was either going to carry this burden alone, with my own will power, or I was going to kneel down and place that load on the foot of the Cross for Christ to take.

When I stood up, I felt free. I knew that from that moment I would never face this alone. By October of 2015, my son was diagnosed with a congenital Cytomegalovirus infection and Bilateral Polymicrogyria. In June of 2016, we were rushed to Shand’s UF in Gainesville for MRI’s and an urgent visit with an ENT. Henry was found to have a rather large mass in his throat and the initial differential (best guess) was a tumor. 1 week later we were booked for surgery to remove his adenoids and get a better look at this thing. 

In those moments I found Paul’s letter to Philippi. Throughout his trials and tribulations, of which there were many, Paul remained hopeful. He says in chapter 4 verse 12-13, “ I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.” 

In moments like these, where I have no power or strength or ability to do anything, I find myself drawn closer to His word. I can feel myself being pulled in to His arms where He is patiently waiting for me to put down the burden I picked back up.

Trial and obstacle and scare after fear and heartbreak and hurt have occurred in these last few years. Rare brain malformation, deaf, vision problems, no sitting or standing or walking. No communication, feeding difficulties, blood work issues. Abnormal Xray or CT or MRI or visual exam. Surgery. Botox injections. Extensive therapies, equipment for every need, and travel and research. Financial strain and relational problems. Loneliness and worry. Life. Man, it gets you down and kicks you while you’re there.

But by Grace, through Faith, wrapped in immeasurable love and unfathomable miracles, I have survived and I am here in front of you now, thriving. Thriving despite the thorns in my flesh. These thorns have not stopped me and I will not let them.
They have redirected my path and given me purpose. My thorns no longer hold power over me, they power me forward.

Tell me, do you have a thorn? What will you choose to do with it after today?

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