Dear family and friends,
Yes, we're still here! It's been a very exhausting few days, and this is the first time we've even had a chance to turn on the computer. So we'll try to fill you in...as long as no one starts crying in the next few minutes!
As would any baby who has lived her whole life in the hospital, Eliza has her days and nights mixed up...or more accurately, has no sense of sleeping for any length of time at once. Even despite sedatives, her first few nights were absolutely exhausting. In addition, her neurological status and inability to be consoled in many of the ways a baby is traditionally consoled make getting her to sleep quite a chore, if not an impossibility. However, as of last night, things have taken a turn for the better. The combination of a more wakeful day and the sedative at night finally did the trick and she got a pretty good night's sleep. So we're feeling a little more human
today.
Eliza has continued to gain weight successfully, and two pediatrician visits, a nurse visit, and a physical therapy visit have all gone well. Luke has been amazingly patient and has been trying really hard to obey all the new rules--don't touch this, don't do that, wash your hands, etc. He's had his moments, but overall, he's excited to have his little sister home and his parents free of constant hospital visits. He is also thoroughly enjoying the company of Sam's sister Auntie Gillian, as are we, since at this point, we can't even imagine doing this without help. Surely things will get easier as Eliza adjusts to being home...we hope!
Suffering is unbearable without hope. For the joy set before him, Hebrews says, Jesus endured the cross. Even in the face of inconceivable torment--the abandonment of God--Jesus, God the Son, committed himself to God the Father in hope. As we care for Eliza, we are confronted by what the doctors have determined is a hopeless situation. Her brain is mostly gone; it can only get worse. At 2 months old, Eliza behaves like a newborn, without the innate skills of eating and breathing. Where will she go from here? We don't know what "quality of life" Eliza will have, or how long she'll have it. Our hopes for this life are dim, at best. The sacrificial love Eliza requires would be unachievable if our hope did not extend beyond this temporary existence. But thanks be to God: Our eternal hope rests on Jesus--his suffering, death, and resurrection. We will love
Eliza now, as long as now lasts, knowing that in Jesus we rest in God's love forever.
May you have a happy and meaningful Easter.
Love,
dixie jax
