Right before Christmas I had to request some medical records from Johns Hopkins for Daniel to be sent to a new neurologist. We’ve been to so many doctors and specialists in the past year I was thinking that his time of service was this past spring. Then, I was informed by the receptionist that his last appointment at Johns Hopkins was January 11th. My first reaction was, “Really? It’s really been a whole year and we’re still at square one with no positive treatment plan?” The definite date sort of temporarily floored me and made me realize that this whole year has been a blur for our family.
Adversity brings out the best in us and the worst in us. There are some life lessons learned the hard way, and I’ve definitely discovered a tougher side of me that I didn’t even realize existed until this year. Intimidation is no longer a friend of mine. One hard-knock lesson I learned very quickly into this medical journey is just because someone has “Dr.” as their title doesn’t mean they know everything or even begin to have all the answers. Out of fifteen medical specialists we have seen in the past two years, only ONE has been able to correctly diagnose, communicate and realistically work with us. I’m not making a blanket negative statement about doctors, but it has certainly been an eye-opening experience from a highly educated field we tend to blindly trust.
Crying can be a healthy outlet and I’ve certainly cried a bucket this past year. I’ve cried out of pure frustration, out of overwhelming exhaustion and the pitiful helplessness a parent feels when their child is sick and there is nothing to do to make him feel better. There have been some days that getting dressed and showing up to work on time was all I could barely muster. I’ve learned to say “NO” to unnecessary commitments, obligations and even time with dear friends so I could spend more time with my family. The people-pleaser mode in me has taken a long hike and will probably never return. My only priority is pleasing God and my family, period.
God doesn’t always speak loudly, or even whisper softly. Sometimes in the middle of a trial that knocks the breath out of you, He is completely and utterly silent. Have I passed this test of faith? Am I doing what’s right? Are my words and actions pleasing to Him? Sometimes I just don’t know, but I do know I trust like I’ve never trusted before. Even in the darkest days of Daniel being ill, no answers, no money, no hope in sight, I trust, I believe, and I depend on others to intercede when I just can’t even process what the next few minutes will bring.
I no longer put on a fake smile and say, “I’m fine” when I’m not. An apology is given when I realize I’ve forgotten something because of the stress interfering with my daily life. Any extras in my life are gone and I only work, and take care of my family right now. Not exactly a fun place to be, but it’s where I need to be right now and I don’t regret one moment of taking care of my son and family. Life is not all about “fun”, it’s about living out my faith when all the chips are down and the light in the tunnel has been moved way down the tracks. It’s not that I don’t enjoy life, despite trials, I am very content. This time in my life is completely centered on my family. Extra-curricular activities will come later and will be enjoyed at another time.
Assertiveness from an emotional mom can be like balancing on a tightrope. One wrong step and we all fall down. If I had a dollar for every minute I’ve spent on the phone trying to get through to a doctor or the time I’ve spent in waiting rooms I could retire right now and never look back. I’ve learned to document everything and I do mean everything. A fax machine is no longer a technology monster for me to tackle. Being my child’s advocate has taken me out of my comfort zone and has put me in places I never thought I’d be, but when pushed into a corner I’ve come out fighting with both fists swinging.
Lessons learned: it’s OK to cry, it’s OK to ask for help and it’s OK to take care of your family even when others really don’t understand the nightmare of living with a chronically ill child. Cherish and be thankful for the “good” days, the “good” moments and try not to be hard on yourself when it all crashes around you. I don’t owe anyone an explanation if I cry tears of gratitude when he feels well enough to open presents on Christmas morning. Keep putting one foot in front of the other, God hasn’t left me and He never will. No overwhelming theology, just the simplicity of the fact God has it covered and He will take care of us.