This year is a resurrection year.
When I got the phone call reporting that Ellie has Down syndrome, I admit that something in me died. Would my little girl be healthy? Would she survive to birth? Every visit to the doctor (and we have plenty of doctors) seemed to bring more stress. The doctors told us she needs open heart surgery. They said she would require stomach surgery. The odds of a thirty year-old woman having a baby with such extreme needs are slim. Why will Ellie have it harder than her peers?
But life and joy and happiness eventually began to return, bit by bit. Ellie started to kick in utero, giving us a demonstration of her stubborn personality. I learned more about Down syndrome. I learned more about heart defects and open heart surgery. I learned more about opportunities for young adults with Down syndrome. The process was slow, and I cried more times than I care to recall.
|(Beginning to get a life again, Fall 2010.)|
Christmas marked the turning of a corner. We had a quiet Christmas at home, because I couldn't fly. Ellie got the most gifts, even though she wasn't born yet. We attended church, ate breakfast in bed and played Scrabble. I forced Glee Christmas carols upon Matt. Laughter began to return to our lives, but the laughter was hesitant.
|(Christmas Dinner, 2010.)|
When Ellie was born, life came back to a greater degree. I wish I could say that the moment she was placed in my arms, fear disappeared, but the reality of her upcoming transfer to another hospital for surgery meant that apprehension remained. Her three weeks in the NICU were a roller coaster of emotions, hope and fear, relief and tension. She kept fighting. At times, she was drugged up on morphine and hardly opened her eyes. Eventually, she learned that if she yelled loudly, a nurse would come and hold her if her parents weren't present. I knew she would be okay, but I wasn't sure how long I would wait to feel "okay" myself.
|(Ellie in the NICU.)|
Ellie came home. Resurrection of our "normal" lives seemed real. I am not sure what normal means, but I know that at six weeks, Ellie is on track for all of her milestones. I know that even when she falls off track, which is likely, she will continue to be a strong little girl. We still have a life. We go to dinner, we see friends, we attend church, we run.
|(Normal life. Sleepy in the sun.)|
We laugh. We still cry sometimes, but we laugh, too.
John 10:10 is one of my favorite Bible verses. Jesus says, "The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full." Full life isn't perfect. Full life includes tears as well as happiness. Full life includes friends and jobs and laughter. Fullness isn't platitudes or fluffy faith. Fullness isn't always happy or always sad. Fullness is living a complete life, with a full range of experiences and emotions. (Including feeling "hangry." Kristy recently coined the term for Ellie's hungry, angry, hoarse cry.)
Ellie will have a full life. We have a full life as a family. We have an adventure to experience, and I am grateful for life's fullness.
Happy Easter. Happy Resurrection.
|(Message from Ellie.)|
|(He likes Easter, too.)|
In this world you will have trouble. But take heart! I have overcome the world. John 16:33