Today some of my dear friends in the blogging world stop to honor and encourage a beautiful and brave woman of God. Our sweet sister-in-Christ, Desiré from the blog When You Rise, will soon give birth to her third son, Caleb. This little boy is a precious gift from our Heavenly Father who has a long road ahead of him. He was diagnosed with a severe congenital heart defect and will almost immediately need to undergo the first of many surgeries to help his little heart work properly. As we anticipate his arrival, we want to take a moment to celebrate this new life as well as encouarage our sister Desiré as she prepares for the days ahead. Would you join us in praying for Caleb? You can stay updated on his journey by “liking” his Facebook page Pray for Caleb.
I write you today from a place that is about as close to the Land of Despair as one can get without needing a passport. I don’t consider myself an expert on suffering. Let’s face it, I’m a middle-class former-honor-roll student who has lived an extremely sheltered life. But in that very limited experience, I have felt nothing more excruciating than seeing my child in need and being utterly unable to meet that need.
I expect most moms and dads can relate to that on some level. The night you had to rush to the emergency room when a little one’s fever spiked. Or catching a toddler’s tears during her first stomach virus which simply had to run its course. We spend so much time trying to minimize discomfort for our children. After all, it is our responsibility to meet their needs. If a mother or father won’t, who will? And if you are in any way a loving parent, you will hurt when your child hurts.
But for parents of a special needs child, a child who is broken in some way that can’t be fixed here on earth, or at least can’t be fixed with a quick trip to the pediatrician, that momentary powerlessness that every parent knows can become something quite all-consuming. That helplessness toward the tiny creature entrusted to you, whom you have succored at your breast, who has known your voice from the womb and for whom YOU are are home and love–to see her tiny fingers reaching for bread when all you have is a stone…that is by far the hardest burden I have had to carry yet.
Compared to the challenge and uncertainty facing you, my troubles are so small–but the helplessness I have felt is all too real. Our particular burden is anything but sexy. If you had asked me ten years ago what I thought of people with food allergies, I would have pointed you to Walter. Remember nerdy, red-nosed, foot-in-mouth Walter of Sleepless in Seattle? I mean, I had heard horror stories of parents carrying epi-pens, and I could see that children one-lick-of-peanut-butter away from death deserved sympathy. But it did seem to me that people were making a bit much of the food allergy thing. So you can’t eat gluten? Then eat the gluten-free cookies and stop complaining. I had no idea of the diverse ways that allergies can be manifested, how difficult they can be identify, and ultimately, that in many cases children may languish for years with severe symptoms affecting every part of their life before their allergies can be identified and perhaps remedied.
My oldest was diagnosed with a food allergy when she was about three. But the journey to that diagnosis involved at least four different doctors and numerous trips to Vanderbilt Children’s Hospital (all of which costs $$$). It involved months of my sweet child suffering from a nameless, undiagnosed stomach pain that woke her four times a night, while I was often already awake with a newborn. Imagine spending two months, night after night, called either by a screaming toddler, terrorized by a pain she didn’t understand and you could do nothing to alleviate. My clearest memory of that time was of her standing in our front yard in her sweet red coat and hat with the snow falling around her, clutching her tummy, unwilling to even run or smile or play because her tummy hurt too much.
Even that, it turned out, was nothing compared to her troubles two years later when she was five. Even now, I am tempted to just be silent about that time, simply because I don’t believe I can communicate the pain of it. What I felt watching her symptoms return, and worsen day by day, though I would try everything I knew to help. Every couple of years her allergies change, and although we went to doctor after doctor, they couldn’t tell us why her body was reacting to numerous foods she wasn’t officially allergic too. At the worst point, the days were simply a sleep-deprived dream of trying to force her to eat and distracting her from the pain, until the night came and she would fall asleep crying on the couch with me and awake again in the morning with a scream. Finally, with incessant prayer, we hit upon a diet that seemed to make her symptoms diminish, and she began to heal. (To read a post I wrote out of that distress, see my Mother’s Day Meditation.)
And this month, here we are again in the same predicament. My oldest has a new round of symptoms, a new round of trying to keep her entertained in the daytime and distracted. A new round of seeing her curl on the couch, unable to play with her sister. Another round of laying with her, singing hymns and praying with her late into the night, promising her that tomorrow I will try to find a way to make her better.
And as the sun goes down again, I face the realization that once again I haven’t been able to make her better. That my efforts on her behalf haven’t been enough. And that she will suffer again, despite more doctor visits and emails to my RN friends and web searches about digestive health and trips to the pharmacy to look for alternative miracle cures. Despite my prayers and the prayers of my friends and family, we face another night of deep distress.
I have prayed and thought about what comfort or encouragement I can offer you, friend, as you make your own journey through the Valley of Suffering. As the Lord leads you, perhaps as near as I have walked to the Land of Despair, close enough to the see all the shades of darkness through the barbed-wire….I certainly have no simple platitude for you.
But the Lord has given me three things, I think, I can honestly share with you about my journey:
1) First, as difficult as it has been, as alone as I have felt, it is absolutely true that He has given me the strength I needed at the moment I needed it. He has rescued me even as I have tried to scale the walls to desert Him, and He has drawn me back within the walls of the City of Hope. When He has given me more than I could bear, He has shouldered it with me and kept me from falling. In the moments when I felt I had nothing else, He has given me Himself and it has always been enough.
2) Second, He has blessed my child with a knowledge and closeness with Him that I had never seen in a child before. The suffering she has gone through, that I would have done almost anything to prevent, has opened her heart and mind to Him in remarkable ways. Just this week, when I was too tired and lost spiritually to comfort my little one, she snuggled close to me and took up the words I had sung so often to her in the night, “All things bright and beautiful, all creatures great and small, all things wise and wonderful, the Lord God made them all…” I don’t know what the Lord has planned for your little one, but I know that He cares for the weak and the broken among us with a tenderness that we can hardly comprehend. And though you may have difficulties you can’t imagine, it is just as true that He will bless you both through this in ways you can’t imagine.
3) Third, I will share what He has been teaching me even today: you are insufficient. To the extent that you are helpless, He is not surprised by this, nor is it out of His plan. By all means, work to help your child with all your being, use every angle, every contact, every advance of modern medicine to fight on his behalf. But remember that in the end, you are dependent on Him, and He does not expect you to do His job. You are off the hook, friend. You do not have to bear guilt and shame if your child’s needs go unmet. “Cast your cares upon Him, for He cares for you.” Cling to Him, and embrace your helplessness before His throne of grace. And He will work this helplessness too for your good and the good of your precious child.
My family has been praying for you and Caleb, Desiré, and we’ll continue to do so over the coming months. And for you women who are struggling like her (and me!) to meet your child’s needs, I pray for you, too, that the Lord will grant you faith and wisdom and healing.
To read more of the blog posts a few of our friends have written for Caleb and his family, see When You Rise’s The Bravery of Caleb, Hive Resources’ Between a Rock and a Hard Place, Celebrate Every Day with Me’s When You Have to Walk by Faith, and To Show Them Jesus’s For When a Loved One is Sick.