Balancing Realism and Optimism
Updated: Jul 11, 2019
Acceptance is not hopelessness
After my last post some of you reached out to me because you were concerned Andy and I might be losing hope.
“We’ve put her life in God’s hands, and we will never cease praying for a brighter outlook.”
Andy and I appreciate everyone taking such an interest in Charly’s journey, but it has however been largely a depressing one. We both shut ourselves in like hermit crabs for nearly 2 months as we dealt with the pain one day at a time sometimes one minute at a time.
Each day brought a new wave of tears as doctors spoke of “quality of life” and our baby’s poor breathing was constantly setting off alarms. Watching your child forget to breathe or suffocate on her own saliva multiple times a day takes a serious toll on you. You’re constantly worried that each breathing episode could be her last. I’m not trying to be dramatic because the drama was real life. It was like being on a medical tv show except there’s no spunky intern with a cure to save the day. Any phone call we received after we left the hospital made our hearts leap out of our chest fearing that it was the NICU team. Many times it was, and it was never good news. We’re some of the most positive people you’ll meet, but even the most optimistic personalities will experience grief and sadness and we are entitled to feel everything to the fullest extent. The only way we can care for Charly with full open hearts is to share the rollercoaster of emotions we’re going through. Depression and anxiety are not bad words. They are real and it’s ok for us to feel them. In early December my therapist diagnosed me with reactive depression, but because of all the love and generosity from each of you, I was able to get up and do the normal functions of a human.
So many of you cooked us food, sent gifts, cleaned and organized our house for us. All those acts helped us focus on making life altering decisions for Charly with clear, stable minds. Do I still have moments of anxiety about caring for a baby with brain damage? Absolutely. Do I still get depressed that parts of my baby’s brain are liquefying? Who wouldn’t?
The fact of the matter is that God gave us Charly just the way she is. We’re too busy thanking God that she is even here to dwell on her unpredictable future. We’ve put her life in God’s hands, and we will never cease praying for a brighter outlook. If we spend our time convincing ourselves that she will be “normal” one day, we’re doing Charly a disservice because everything she does will only disappoint. Andy and I have accepted the fact that Charly may be completely reliant on us for everything including dressing, toileting, and changing positions. We’ve accepted that she may never gain the mental capacity to think beyond that of an infant. But acceptance doesn’t mean loss of hope. We haven’t given up. Because we’ve accepted her and have unconditional love for her regardless of what she may or may not achieve, we can fully relish in the accomplishments she does make. She just recently learned that if she makes small gurgling sounds that I will pick her back up (I’m a pushover haha). If I was anticipating a full on cry, I would have been heartbroken rather than overjoyed. We’re not wishing for her to speak one day, because then we wouldn’t appreciate her small grunts. If we’re dead set on her running, we’ll be devastated when she misses the crawling and walking milestones. Andy and I are choosing to celebrate the small victories that Charly will have rather than be devastated if she never achieves more than she has right now.
Over the last 2 weeks we’ve been adjusting to life with Charly at home. We brought her crib into our bedroom so I can hear her tiny kitten-like whimpers and bought a second dresser and diaper pail so we can have an upstairs and a downstairs changing station. I’ve organized her drawers with medical supplies into little ikea boxes for easy access and prefilled syringes with weeks worth of medications. We’ve gotten a longer oxygen cord so we can bring her downstairs without lugging her obnoxious oxygen machine down. We are finally reaching a new normal, and we’re enjoying each day we have with our sweet girl. She seems to be thriving at home. Her heart rate has been consistantly lower and her oxygen has been high. She loves to be held and snuggled and will instantly fall asleep when we hold her in our arms. Andy and I are finally at a place where we can say that we are okay and mean it. Our family is a little different, but we were never really that normal in the first place.