It means that every morning and many afternoons, I mix a cocktail of water, formula powder, Gatorade, and Miralax for my 13 year old that will be pumped into her stomach (or intestines, if her stomach isn’t working).
It means crushing meds a couple of times a day to give through her feeding tube; meds that will keep her blood pressure and heart rate from swinging too wildly and will expand her blood volume to keep her stroke volume from plummeting when she stands upright. It means meds to help clear her lungs and make her intestines move and mitigate her pain.
It means gently beating her chest to help clear mucus that she can’t clear on her own. It means standing outside a restaurant on the phone with my husband, asking him to “beat her a little and then have her lay down for a while” and not realizing how bizarre that sounds until I see the raised eyebrows of someone walking by.
It means cracking oxygen tanks and troubleshooting hissing tanks and making sure we have enough full tanks for the week ahead because getting them swapped out can take longer than we would like.
It means that my teenage girl has more specialists than friends, as she muttered to herself yesterday. Though to be fair, I’m pretty sure if each of us were to number our true friends the number would fall below her specialist count.
It means that most days she experiences symptoms that I cannot fix or even diminish for her. I can’t save her when she feels like she can’t pull in enough air or when her muscles ache from the effort of trying. It means I wish I was magic, every day.
It means I’ve learned a second language that comes as easily as my first; the alphabet soup of EEGs and IEPs and LFTs and PFTs and CTs and ABGs and MRIs and HHCs and GJs and WES, the encyclopedic stew of gastroparesis and dysautonomia and ketotic hypoglycemia and apneustic breathing and dyspnea, and all manner of words that spellcheck will never accept as English.
It means that I’ve learned to (mostly) live the day in front of me and stop trying to catch a glimpse of what lies ahead. Words like “progressive” and “incurable” are effective and harsh teachers. They are not afraid to rap you on the knuckles if you step out of line. It smarts.
It means that doubts sneak in the closer we get to adulthood, because the world is not set up to reward a life that has been lived in the present. The world wants to know where you are going and when you will get there, and what you’ve done to deserve it.
It means I’ve had to watch my girl lose things over time; things she notices now, things she misses. It was easier before she noticed.
It means fighting with insurance, it means paperwork, it means feeling helpless, it means there is always something circling in my brain before I fall asleep.
It means weeks without a medical appointment are rare, and that little siblings get used to being schlepped to and fro and sometimes actually cry when it is time to leave the clinic.
It means our house has medical supplies and machinery everywhere.
It means using a wheelchair sometimes.
It means glucose checks and ketone checks and oxygen checks and blood pressure checks.
It means staff in the ER recognize us.
It means there are often dilemmas and decisions without clear right answers, so we try our best and leap.
It means that the mitochondria in her cells do not produce sufficient energy to power those cells, the same way everything flickers when hooked to a hand-crank generator that isn’t being turned fast enough. Her body, her organs, her cells are flickering. The more energy-hungry a system is, the harder it is to fully light it up.
It means that we’ve learned that platitudes aren’t just empty, they can be weapons that wound. It means we’ve learned the worth of sitting with someone in their dark, even when you have nothing to offer beyond your presence.
It means that we have had front row seats to the wonder of community and the depths of friendship, and to the breathtaking beauty of humans who lean into your pain and don’t hide behind empty words or run the other direction.
It means we’ve learned courage and perspective and compassion and honesty and vulnerability and what an absolute miracle laughter can be, especially if it is entirely inappropriate for the moment.
It means that we know that “God doesn’t give you more than you can handle.” is utter bullshit, but even when you have crumpled under a weight that is more than you can bear there can still be bits of joy and relief and hope and love right there with you until you can get back up.
It means whispered prayers and silent prayers and written prayers and prayers that are nothing more than an ache that doesn’t go away and prayers that are hands banging on the steering wheel in exasperation, and it means God gathers all of them up the same.
It means that we are reminded so often that God is love, and that somehow that can be enough.
It means that our life is different in many ways that challenge us, but that different has also been a gift in ways we never could have predicted and it reminds us that redemption is never out of reach, so long as love holds us fast. And love always, always holds us fast.
September 16, 2018 at 4:16 pm
I’m posting to my page. All my friends know Katie, but they don’t all know this.
I love y’all!
September 16, 2018 at 5:07 pm
Devastating and horrendous disease, but the most beautiful statement I have ever heard. God bless those affected and their families!
September 16, 2018 at 8:13 pm
Katie’s Mom explained Katie’s condition so well that it is possible to hear the very sounds of their days and to see the medical machinery everywhere and the medicine bottle stacked neatly on the counter.Thank you for sharing your journey with all of us. I will be more inspired to make sure I never forget my prayers for Katie! Katie has long since won so many of us over to her cause and inspired us all with her can do spirit. To know she moved forward in all the plays she had been in and to see how successful she is makes me ashamed of myself for complaining about my own conditions from time to time. I could feel the frustration of both Katie and her mom with the sometimes overwhelming work involved with her condition.However they have ,neither one ,ever give. Into disappointment that kept them from continuing to move forward in positivity.They both share their Mother and grandmother,Aline’s resolve and determination to tackle this condition head on with every intention of being victorious. I must say I have overwhelming respect for these strong women and their trust in God and all that is good that they will overcome this medical issue!!!👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻💞💝😘🤗🙏🏻👼🏼😇😍😘
September 22, 2018 at 8:47 pm
This entire piece is utterly well done, but this, “It means that doubts sneak in the closer we get to adulthood, because the world is not set up to reward a life that has been lived in the present. The world wants to know where you are going and when you will get there, and what you’ve done to deserve it.” Wow–this. Love this way you expressed this.