Today my son Justin had a checkup at Children’s Rehabilitation Services. Every 6 months we have to see an orthopedic doctor and a neurologist. I dislike these appointments because they are usually very long. As much as I loathe going, I always leave thankful and with a softer heart.
Justin is severely disabled. Born at 26 weeks gestation he suffered from an intraventricular hemorrhage which caused permanent brain damage. He will never walk, talk, eat regular food or be potty trained. He is diagnosed with CP, autism, sensory processing disorder, and hydrocephalus. He has a shunt in his head and a g-tube button in his stomach for feedings/medicine.
Although he has many disabilities most of our day to day problems arise from his ever changing sensory issues. There are 3 types of sensory processing disorders, Justin has a combination of all 3 and within each type he is both hypersensitive (overly sensitive) and hyposensitive (under sensitive). Sensory processing disorder can be described as a “traffic jam” of all the neurological signals from all of the senses. Information comes into the brain from the sensory systems and due to the “traffic jam” the brain is unable to process and interpret the information correctly.
He is under sensitive to pain. When upset he bites the palm of his hand for comfort. So much that a callous has formed and he has made himself bleed before. We call him sock boy because we always have to put socks on his hands to help prevent injury.
He is over sensitive to sound. He can hear things we can’t hear and sounds can upset or comfort him and they always change. I used to not be able to wash clothes while he was awake because he would cry, hit and bite himself because he disliked the sound, but now he loves the sound and will crawl into the laundry room to listen to the washer. The list goes on and on with sounds that bother him. He is funny, instead of covering his ears he bends his ears forward, which makes it difficult to get a picture of him without his hands by his ears.
He craves constant stimulation. This is more annoying then anything. He does many things for stimulation. He loves to play with his toys in our hallway and then pull up on his knees and hit the walls with his hands. He grinds his teeth for stimulation. If we tell him to stop grinding his teeth he will click his teeth together. He bounces up and down on the couch or his bed. There is a constant banging, clicking or grinding noise in our house.
He is over sensitive to movement. You know the feeling you get in your stomach when an elevator stops suddenly, well that feeling is intensified 100 times more for Justin.
He is over sensitive to things touching his skin. He HATES, HATES, HATES, HATES water. I am not sure what it feels like to him, but bath time is always HORRIBLE. We try to desensitize him, but I don’t think he will ever like water.
As bad as things sound, we live a normal life. The way I can best describe Justin is he will always be like a 1 year old (with sensory issues). He can scoot/crawl so he is not confined to a wheel chair. He babbles but will probably never be able to talk. He wears diapers. He can now drink his Pediasure by mouth and he eats baby food.
Of course there are days where we feel like things are hard, but then there are days like today when I take him to CRS and I realize how easy we have actually have it. My heart breaks for all of the children there. Many can’t move any limbs, are confined to a wheelchair and some that have to constantly have a nurse by their side to maintain their life. There are kids that can’t smile. I can’t imagine not being able to see my baby smile.
Most kids there are born disabled. Today there was a grown boy there with his father. They were both precious, inspiring and funny. It was not until I heard one of the nurses talking to them about his weight that I realized he had once led a normal life and had been injured. She said he used to weigh something but that was when he played football and worked out. Tears immediately started flowing down my face when I realized who he was.
Last year Timothy was a senior in high school. He was a starting linebacker for his high school football team and he was an aspiring gospel rap artist getting ready to release his first cd. His life changed October 9, 2009; with 39 seconds left in a football game he made a tackle that left him with a serious head injury. He was paralyzed but after intense therapy has gained some movement on his right side. You can read about him here.
Picture via www.al.com
Now from what I have read about this family, they would not want me to shed a tear for their situation. They inspire people and did me, but I could not help it. They were sitting across from me, I had to turn my head to wipe my tears and I had to keep swallowing to make the lump in my throat go away.
Seeing him got me thinking. Is it really better to have had and lost then to have never had at all?????
Yea, yea, yea I know we all have a calling in life, we move on from unfortunate situations, the bad makes us better, etc. I know all of those sayings and for the most part I believe them. It even feels wrong to have that thought, but I can’t stop tearing up when I think about that sweet boy that loved to play football and no longer can.
Being born disabled, Justin does not know any different. Is it bad that I am thankful he will never have to deal with the heartache of once having a “normal” life only for it to be lost?
It is not often that we feel sad for Justin. Just like everyone else that faces adversity we live our lives as normal as possible and do everything possible to make sure he his happy and well, we don’t dwell on the bad. Christmas is one time that always upsets Alex and I. We both love the holiday and usually go overboard when shopping for the kids. It never fails, every year I end up crying in the middle of a Wal-Mart baby toy aisle from sadness that Justin will never have the same experience as his brother and sisters. I then remind myself that he is happy and I throw another toy that lights up and makes noise in the basket and then I let go of the sad feelings and focus on my feelings of happiness and thankfulness that I am mom to the two most precious boys in the world!!