Chazz's Journey: Love Never Fails

One Sunday morning, in 2003, I woke up to surprise vaginal bleeding. Normally, this would have signaled the start of my menstrual cycle; however, I was 13 weeks pregnant. Needless to say–fear and panic set in.

"I am going to have another miscarriage," I sadly and tearfully told my husband as I awakened him from sleep to see my dreadful plight.  We made our way to the bathroom, and just as we thought, the steady stream of blood would not let up.

After arrival to the emergency department, and several tests, I was told that I had placental abruption (my placenta had separated from my uterus) and I had a resulting sub-chorionic hematoma (massive clot between the baby and my uterine wall) My prognosis?  "Go home, do bed-rest and hope for the best. Come back at 24 weeks, at which point, we are legally bound to take measures to save the baby."

Well, I did just that. I went home, did nothing; rested all day, day after day, but I continued to bleed. And bleed. And bleed. And bleed. Weeks passed, and the bleeding only intensified. I had several scares and more emergency department visits; only to be told to go home and hope for the best, and if I made it to my 24th week, I could return and actually get the help I so desperately wanted. Throughout this whole ordeal, I kept praying to God, asking Him to help my baby make it to at least 24 weeks, as I just could not bear to suffer another miscarriage. I spent my days talking to my little guy in my belly, rubbing my tummy, telling him to "hang in there."

My little guy did just that–he hung in there until 24 weeks and 5 days; after which he was determined to make an early entrance into the world. Even the intravenous magnesium solution that I received that felt like it was burning holes in my veins–did not prevent Chazz's premature arrival. Fortunately, I checked myself into the hospital at 23 weeks gestation (Thank you Long Island College Hospital!) and was able to get the betamethasone shots which greatly aided Chazz's lung development, which in the grand scheme of things really improved his chance for survival.

Chazz had a host of challenges from the day he arrived. With an Apgar score of -2, the doctors gave him a very grim prognosis. I was told he would not last beyond 72 hours. He needed ventilator support, oxygen, he had to be trached, and received all sorts of treatments and medications for everything and anything that went wrong with him. On his third day of life, little Chazzy suffered a massive brain hemorrhage, which left him with most of the developmental and physical handicaps that remain consistent with him today. Most notably Chazz cannot suck, swallow, chew, smile, or speak–in fact, if it wasn't for the feeding tube in his stomach, he would be unable to receive nutrition. Because he is on a liquid diet, he has not grown or developed as a normal boy would. He is physically challenged as he cannot run, walk or crawl.  His spine is in a dangerous "C" shape which could potentially get worse over time and then shut down the nerve signals to vital organs such as his heart and lungs, causing death. His initial diagnosis was hypoxic ischemic encephalopathy (disease or damage of the brain) and how he is classified as having a form of cerebral palsy.

What has helped me over the years to cope with this situation,  is not to focus on Chazz's limitations.  Why should I? Doesn't every single human being who has ever been born live with limitations?  Yes–we all do. Chazzy's limitations are just a little more obvious than most. So I have made the decision to focus on what he CAN do - and that has made all of the difference! 

Sure, Chazz cannot walk or crawl–but watch him get what he wants as he moves himself from one side of the room to the other!  He takes his head and bends over allowing it to touch the floor, braces his body with his arms/hands and systematically moves his body until he is where he wants to be! Sure, his arms may be very under developed with low muscle tone; but watch out!  Chazz will use his little arms and wheel himself around the house in his wheel chair and cut the corners like a pro!

And let's  talk about his reading and computer skills! AMAZING. Chazz navigates the internet, goes to YouTube and pulls up his favorite shows at will!  He LOVES music. Infact, his all time favorite band is Pentatonix.   He plays music on his iPad daily and even changes the music to whats he knows people likes, depending on who is around him! So when my mother-in-law comes over, he tends to play Jazz, for his teacher last year he would be in the habit of playing the song, "Sailing" by Christopher Cross, as he  knew she loved it. Sometimes, when we are listening to new artist on the internet ... a few hours later,  we hear Chazz pulling up that very same artist on his own iPad! 

Oh - and his heart of gold!  *SIGH*  Chazzy is pure sweetness. I remember one time when my middle son, Cody's iPad ran out of battery power just as he was playing a fishing game ... little Chazzy noticed and stopped what he was doing on his iPad, found a fishing video for his brother on YouTube and proceeded to give his IPad to Cody.  What a lovely display of empathy and care!

I could write on and on about my little guy and how simply adorable, special and amazing he really is.  But the most important thing that our family has gained from having Chazzy in our lives is that it has made us each a better person. More compassionate, more sympathetic, more understanding, more patient, and less selfish. Displaying complete unselfishness, is to me–the essence of being a parent. And being a parent of a special needs child means that you are constantly giving and receiving love unconditionally.  

I love all of the love that Chazz brings into our lives.

"Love never fails."

 

 

Amy BetheaComment