Youngest Son and His Not - So Battle with Sickle Cell Disease

Youngest Son was born into this world in November of 2010. He is three years old and fully feeling out his wonderfully unique personality. We have yet, in this household, to go through the dreaded "terrible two's". For this family, it has eternally  been the "terrible three's". I think that being terrible and three years old is much worse than being terrible at two. Three year olds can speak a lot clearer and are much more understandable than two year olds. I was much more gracious with my sons at two for things like defiance or sassiness. I could write it off as an inability to fully communicate. But at three, ohhh, they know what they're saying and how they're saying it! Youngest Son is no exception to this phenomenon.

Tonight I had to put Youngest Son to sleep a full hour early because he was just plain nasty today. It was almost like he couldn't control himself. Eldest Son created a beautiful "race track" using printer paper, markers and strategically placed paper loops taped to the track. Youngest Son snuck into the dining room and tore the paper loops off the track and came to his brother to laugh and gloat about what he had done. 

"I broke your paper! I broke your paper!" he chanted with the cutest grin on his face; his large brown eyes sparkling with mischief. Eldest Son was miffed. He drew his mouth to holler at his little brother but I stopped him. Calmly and quietly I called Youngest over. 

"Did you break brother's racetrack?"

"No"

"Tell the truth young man...."

Youngest turned to his older brother, "Sorry brother." 

"No no no. Tonight little boy that's not going to cut it. Go to your bedroom and wait for me." 

Oh the tears! How they fell across his scrunched up face; those doe eyes widening and continuously filling and overflowing. He almost had me. I've seen that same face, those same tears many times in many hospital rooms over his brief three years of life. 

Youngest was diagnosed with Sickle Cell Disease (hemoglobin SC) about two weeks after his birth. We, as a family were utterly devastated. The agony of answering your phone to hear some tinny voice on the other end regurgitate lifeless test results about your perfectly perfect brand new baby was unbearable.They hang up the phone, bidding you a good day. But they get to go to lunch and eat their lean cuisine in the doctor's office break room; cracking jokes and waiting for the next appointment to book. I was left holding my baby, uncertain of what was in his future. The threads of my optimism unraveled into a colorful pile of mess on my living room floor. 

But despite all that, God is good (church folk know to say "all the time")! Youngest's diagnosis wasn't too big for God. Nope. The doctors spoke things like bone pain, anemia, splenic sequestration, skin ulcers, blindness, delayed growth and seemingly a hundred other anomalies over my baby. But my God spoke one word over Youngest: Health. For three years Youngest has not had a pain crisis, or problems with his spleen, or needed a blood transfusion, or had poor eyes, or delayed growth (90th percentile in height and weight) or even yellowed eyes (which is very typical of Sickle Cell patients). 

Yes, we've gone to the hospital at least half a dozen times. Because of the nature of his diagnosis the doctors are always scared of him contracting a blood infection. So as a precautionary act, when Youngest has a fever of 101.1 degrees or higher, he automatically gets admitted to the hospital for observation, is given an IV, administered a MONSTER dose of antibiotics, and has blood drawn for testing. Which brings me back to those familiar tears I saw tonight. I've seen those painful and sad tears in the hospital when nurses poke my baby's arm or hand and put that unfairly large needle in his arm. They try to bribe him with stickers and teddy bears and all sorts of gifts that my son knows so well will not take that pain away. Our last visit to the hospital before anyone was in the room, he looked at me with those large brown eyes and almost defeatedly whispered "I don't want them to stick me with the needle." I refuse to lie to him so instead I hug him and tell him "I don't want them to stick you either." Inside of myself, I'm praising God that this is all Youngest has had to go through! Right now I'm elated that his biggest fear is a needle! Every time we walk into the hospital we walk out with the doctors having found absolutely nothing wrong.Woo hoo! Praise you Jesus!!!!!

Youngest and Eldest coloring in the shared 

hematology/oncology waiting room. 

In the background a mother receives her

 daughter's chemotherapy aftercare instructions.

The hematology department shares a floor with the oncology department. And once while on a routine checkup I watched a mommy (just like me) receive her after care instructions for her beautiful full-head-of-gorgeous-curly-hair daughter's first round of chemotherapy. My heart broke. But as broken as I felt for that family, I felt equally guilty for feeling relieved that it wasn't Youngest or Elder sitting in that wheelchair. Husband snapped a picture of the boys obliviously so near to disease and death, coloring pictures. It's such a hopefully sad picture. 

I'll take terrible three's four's and five's over hospital visits any day! I'll take fears of white doctor's coats and needles over blood transfusions and blindness every time. I'll take sassy remarks and an overly tired, crying toddler screaming at the top of his lungs over and over "YOU DIDN'T SAY GOODNIGHT!" even though I said it and gave him a kiss. I'll joyously take it. Well, for a little while at least. Cause that screaming gets on my nerves and I have to take a deep breath before I feel like spanking a misbehaving child.