The journey seems to move in slow motion now that he is older. The process is both exhausting and frustrating as the skin does not stretch as much and we get less volume in the expanders with each weekly fill, giving us less expanded skin to work with at the end of the expansion process. Then there are the several missed weeks we spent fighting an infection but narrowly escaping a hospital visit (PRAISE THE LORD!). However, there have been many nights of discomfort far worse than any I have experienced. After the last fill, Zac spent the entire night (well, until about 4:30 in the morning) waking up crying every half hour screaming that his bubbles hurt - growing pains, I suspect. I fall asleep rubbing his bubble with lotion until the next wave of pain wakes him.
Day to day during expansion has become normal to us. So much so, that I often cease to notice the stares and hushed conversation Zac's bubbles create. And great memories are made in the midst of this chaos. I took Zac to play in a small splash pad and realized that, at almost 5 years old, he had never played in one. With his size 6 shirt bulging in several areas as the water prompted it to cling to his body, he laughed and bounced around. The joy and happiness that filled his little heart was overwhelming and that night before he went to bed, he said, "Thank you Mommy for taking me to the water...I had sooo much fun." By the time his sister was his age, she had hit almost every water spot in town and then some and was able to swim on her own. However, lessons aren't something we have done for Zac yet. Something so simple, a casualty of our rounds tissue expansion and healing time.
In the past several months, with the growing number of birthmarks he has accumulated, I have started to worry about the future adversity that is certain to come in the school years. Filling out Kindergarten paperwork has only reminded me of the special accommodations, though small, that he will need. His sister has played the unfortunate part of guinea pig as I try out schools that offer both caring teachers and students that are taught compassion and hoping I have chosen the right one in Northwest Christian School - a private Christian school I have enrolled them both in for the coming school year. I feel in my heart that this choice will be the best for both of my children and know that the Lord will find a way for us to pursue this path.
