May 27, 2017
Somehow, a single day can seem like a lifetime when a child is in the hospital. When one day of admission turns into several days, and then into several weeks, it’s more like an eternity. What day is it again? Time seems to stop and the tears seem to never stop. It is utterly exhausting, both physically and emotionally.
After many years of caring for medically-fragile children, children who spend thousands upon thousands of hours in the hospital, you would think I would get used to it. Nope! It never gets easier. There are days – and usually interminable nights – when I cry into the darkness, I can’t do this! This is impossible!
Indeed, it is impossible, at least for one person. There is no way I could continue caring for these precious children with their complicated medical needs if I had to do it alone. I depend on my community, my “village,” those invaluable friends and neighbors and church family who are ready and willing to step in and offer support when things invariably get overwhelming and difficult.
During these seasons of long hospitalizations, the most common offer I am likely to hear is, If you need anything, please let me know. I love the openness of that! The generosity and kind-hearted intent. The love that those words communicate!
But honestly, when I am focused on the child in front of me - on the medical complications and the doctor’s prognosis and the long-term implications of this current health concern – and when I am completely drowning trying to balance the time at the hospital with the ongoing responsibilities at home, it becomes almost impossible to articulate what I need. I search my over-burdened brains for the right words to ask, and come up empty. All I can think to cry is, Help me!
What I need more than anything, what has encouraged me the most during these stressful days and weeks in the hospital, is a specific offer of help. When someone is willing to take the initiative, and give or serve or love from the abundance of their heart.
I am so grateful and humbled to be the recipient of so much love! I can barely begin to count the ways that thoughtfulness has inspired me to not give up on these frail children. Ways that generosity has encouraged me to press on with this hard calling. Ways that kindness has made the impossible . . . become possible.
April 29, 2017
What could possibly be more magical than a Ball? The sequins on my royal blue gown catch the sparkle from the crystal chandeliers overhead, and it doesn’t seem real. I feel like a common villager, trying to pass as a princess. I can hardly believe that I am the same person who, just a few hours ago, was checking our son’s lab results, confirming the next appointment with his specialist, and measuring out his daily medications. That was real life, messy and routine and sometimes exhausting. But this opulent ballroom with cocktails and hors d’oeuvres and the small ensemble in the corner playing beautiful classical music? This is magical!
I can’t help staring at our son all decked out in his black suit and tie – the first one he has ever worn in his life – and admiring how dashing he looks. The blue sash across his shoulder, the one with the words Wish Kid on it, make him seem almost royal. He and the other Wish Kids like him, are the reason everyone is here. We have been invited to this Wish Ball, an annual charity gala to celebrate the wishes that have been granted to children with life-threatening medical conditions. If the cost of admission is having a child with a life-threatening medical condition, it is a steep one indeed!
March 11, 2017
Everyone you know is asleep at 2:00 in the morning, but not you. In the stillness of the hospital at this hour, the noise of the irregular beeps and sporadic hisses and frequent alarms are jarringly loud, ensuring that sleep is impossible. But because the annoying sounds are coming from the machines that are keeping your child alive, how can you complain?
As you reposition yourself on the blue plastic chair beside the bed, attempting every contortion possible to make yourself comfortable, you think to yourself, What in the world am I doing here? How did I become the one who is responsible for the child in this room? Is this really the life I had envisioned I would be living?
February 22, 2017
The foster placement had been a hard one. Really hard. He had many complicated medical issues that required surgeries and procedures and appointments and specialists. His development was significantly delayed, which was frustrating for us and for him, and which required countless therapy sessions. He had very few social skills and he (literally!) pushed me away when I tried to get close to him or pick him up. He was aggressive towards the other children in our home.
And to top it off, his mother disliked me. Almost daily she would find fault with the care her son was receiving, constantly complaining to the social worker about me. It was disheartening, to say the least.
It was hard, and I wanted to quit. In fact, I had asked to quit! Several times I had requested that his social worker and case manager please, please find another home for him. Surely there was someone else who could love him. Someone who had more time, energy, patience, and resources to give that child the care and nurturing and attention that he so desperately needed.
And yet, he was still here. Apparently there was no one else. Apparently I needed a lesson in perseverance. And faith.
January 7, 2017
‘Twas a few nights after Christmas, when all through the house . . . the creatures are indeed stirring. Every bed in the house overflows with relatives – aunts and uncles and cousins and grandparents – who have traveled long distances to celebrate this holiday season. But none of us can sleep on this not-so-silent night. The little ones are tossing and turning and squirming fitfully in their beds, refusing to succumb to sleep. Their wild footsteps echo off the hardwood floors in the hallways. Their agitated cries ensure that none of us will be settling our brains for a long winter’s nap. At least not anytime soon.
This is not exactly the image of my home and family I was hoping you would see when you come. Just a few days earlier, we are all cleaning and sweeping and polishing in anticipation of your arrival. We look out the window frequently, waiting for you to come. The hour gets later, the clock ticking well past the usual bedtime. Finally, you come! And out in the driveway there arises such a clatter, the littles ones spring from their beds to see what is the matter.
Which is fine, just this once. I want them to see you. While you are here, I hope that you will get to know these precious children who are living in my home. I want you to love them and treasure them as much as I do! During your visit, I hope that the bonds between you and them will be formed and strengthened. May they find in you, unconditional love and acceptance. May they find, in your warmth and tenderness, a sense of belonging and connectedness.
The hallway soon fills with rolling suitcases and zippered jackets, excited laughter and lively conversation. So wonderful to see you! I’m glad you made it safely! How was your trip? Do you want anything to eat? Understandably, it takes a while for everyone to settle in.