• Alicia Assad on CaringBridge

Just tell it like it is...

"Go ahead, try it on - this is your special shirt. It's silver like a knight's armor - you can slay the dragon in Shrek wearing this." William said nothing, peered at me under his eyelashes with a pout on his mouth and put his head down on my lap. "Why are you hiding? I think this is a pretty cool shirt...and it is going to help your ouchies get better really fast." Again, he said nothing but sighed and turned his head, still pressed in my lap, to the other side. "Ok, I think that lollipop you got from the front desk is pretty tasty. I bet you would like another one, right?" My bribe worked like a charm as he finally responded, "Can I have a purple one...and a blue one?" to which I replied, "Yes, if you put your new special shirt on, I promise you can have two more lollipops when we are done."

With the prize of lollipops in sight, he allowed the technician to pull the very thick, custom designed and manufactured in Germany turtle-neck, long sleeve and skintight shirt on his body to cover and support his burns with the hopes of minimizing scar tissue. This "compression garment" will be his fashion accessory 24/7 (with the only exceptions being bath time and swimming) for the next year. Upon first sight of this shirt, my heart sank as I thought of the recent heat waves and the sweltering weather they might be indicative of for the coming summer. The heat paired with this suffocating shirt on William's little body that is already lacking sweat glands where he was grafted (11 percent of his body) is a recipe for overheating and discomfort. The time and fights it will take to get this garment off and then on again in the mornings for his lotion massage, then at the pool if he swims, at bath time, etc. was the next fleeting thought. Then as I looked at William's quiet, sad face peering back at me as if to say, "Mom I know you are trying with your silver knight nonsense but this shirt is terrible, and I am not happy about having to wear it, but I will because you are insistent."

Four Dum-Dums lollipops later (this is the rare instance where I can be grateful for artificial flavor, coloring and high fructose corn syrup) we were headed to the car. William was silent except for his unusual request to be carried as he always insists on doing everything on his own. When I strapped him in the car seat, he turned away when I tried to kiss his cheek so I just got on with our journey home. In the rearview mirror, I couldn't miss his slumped shoulders and downturned hat that I knew was concealing a still pouty face. "Ice cream. How about some ice cream - would that make you feel better?" I suggested thinking a little more sugar could fix this situation. This time, he didn't bite the sugar bait so I let him be. As we approached town, I asked, "Are you sad because you don't like your new shirt?" He picked his head up, glance at me through the mirror, and put his head back down. "Ok, I know you don't like the shirt and that is alright. I understand. I don't like it either. I am sorry you have to wear it. I am sorry this all happened but the doctor's say this is going to make the ouchies heal better," and I continued this banter, more to convince myself of why I was torturing my son any further than to remedy a two year old's pout. In the ensuing silence, I drifted off in my mind to my pity party about how this all really sucks and I wish it was all over for him already but my rumination was interrupted with, "I want banilla ice cweam" and so we stopped for the vanilla ice cream we both knew wouldn't make the shirt situation any better.

William's personality has been back with a vengeance the past month. Nothing has set him back - not his constantly itching "ouchies," lack of sleep or his follow up visit to the burn clinic - he sailed through it all with a pep in his step and high fives for everyone along the way. I was so struck with fear that this was going to be a big retreat he wouldn't easily pull out of. While William's silent treatment came to an end with vanilla ice cream and my honest acknowledgement of the situation, his mood didn't fully shift until Daddy's suggestion of going to "play golf." In the past month, motivated by the need to keep up his activity to prevent the scarring from restricting his mobility, Eddie has been taking William to "go hit gwalf bawls" - an activity he loves. And so to this Mom's relief, it was Daddy who swooped in and saved the day. While the boys were out doing their thing on the driving range, Catherine and I did some gardening and nursed our babies (she has taken to modeling my mothering skills with her baby doll she named "Catherine"). By the time dinner was on the table, William came bounding into the house excited from golf and in much better spirits. How relieved I was to face a two year old's pout about how many bites of broccoli needed to be finished before leaving the table and later about not being allowed to jump in my bed.

Yet again, William's resilient spirit has amazed me. He put his shirt on without a fight after his bath tonight. He seems to have a quiet understanding about everything that is going on and while I might have irritated him with my "this is a superhero shirt/slay the dragon nonsense" I know we are all good because I was asked to snuggle him to sleep. At William's bed time, Henry is usually fussy and wants to be held so it is always the three of us snuggling until William drifts off to sleep. Tonight, Henry was more fussy than usual so William asked, "Can I touch Hengwy?" and with my approval he gently rubbed Henry's head until he settled and then drifted off to sleep himself.