things counted nothing at all,
and used them to bring to nothing
what the world considers important."
1 Corinthians 1:28
Recently, a special friend encouraged me with these words; "It's a hard road to have a child with so many medical and developmental needs. But God's grace is very particular, very rich, very real, and overflowing in loving kindness for their parents. I have known the love of God in unimaginable ways through my son. Trials open the floodgates of Heaven. We are in a special club." Thank you, Cynthia, for your heartfelt and much needed words.
One year ago, our family was making final provisions to leave our home for preparation of Jude's birth in Charlottesville. It's confounding to think we were clueless of the ups and downs this past year would yield. But we are especially grateful our little man was able to come home with us.
We are blessed. We get to kiss his squishy little cheeks. We get to hear his giggles. We get to smell his sweet little head and absorb all of those delicious baby moments that are each so cherished. We...brought him home! I often gaze at him with the painful knowledge of the rigid reality that we were so close to never knowing these treasured days we've enjoyed this past year.
I can say his name bravely. He is here. And I am his mama. I have personally come to know other mamas that have grieved the hard stuff. They said good-bye way too early. They count up the days, the years, the birthdays. I know they would give every ounce of themselves to save every ounce of their little one, one thousand times over.
We are finding a world of assistance for Jude. There is aid from aquatics to equestrian programs. Jude recently switched to private occupational and physical therapy with the intention to more aggressively approach his developmental limitations. This type of therapy is unavailable in our home, as previously, and requires a huge commitment to be away so often.
Since he is suddenly growing so rapidly, his frustration levels have heightened. He's certain there must be some logic to his philosophy but falls short with the ability to make it all happen. He aspires to become more mobile, rolling across the floor to better reach his destination. Often, he becomes confused, assuming by rolling he'll acquire things located on the table. Observing his little mind troubleshoot the obstacles can be doleful, but at least he's rationalizing a conventional result even if he's incapable of obtaining it.
Grasping a string for the first time after raking his hand over it a dozen, batting at a bubble, pulling out a peg, supporting himself on all fours, are all huge thresholds of accomplishment. Six times before, we glided over these minor tasks without a thought, but for our little number seven, they've all become great hurdles to overcome! Each step has taken weeks of therapy and many tears to attain. But the cheers of gladness from all who love him are something to behold. What a blessing indeed!
Raising a disabled child renders its own challenges. Days are many when I give it my best to pull myself together and find the required strength, but sometimes things just don't work out. Sometimes the demands appear more than one mama can relinquish. I'm often without energy to complete the day. So, I am learning to give myself grace, room to breathe, one day at a time.
Years ago I read a book by Christian Overman called Assumptions That Affect Our Lives. Chapter Fifteen is titled, "The Mysterious Power of the Powerless." It reflects a story published in The Wall Street Journal, April, 1985, written by the brother of Oliver deVink.
Oliver was born with a severe brain injury that left him a blind mute with twisted legs and little to no intelligence. He lived in a permanent state of speechless helplessness for 32 years, unable to even lift his head. It read, "My family and I fed Oliver, bathed him and changed his diapers...we listened to him laugh and we listened to him rock his arms up and down to make the bed squeak...well, I guess you could call him a vegetable. I called him Oliver. He remains the most helpless human being I ever met, the weakest human being I ever met, and yet he was one of the most powerful human beings I ever met."
Christopher explains how he came to know the girl who was meant to be his wife. After bringing home other girls who showed no interest for his brother, he brought home a girl named Roe. He says, "I remember sheepishly asking Roe if she'd like to see him. 'Sure,' she said, and up the stairs we went. I sat at Oliver's bedside as Roe watched over my shoulder. I gave him his first spoonful, his second. 'Can I do that?' Roe asked with ease, with freedom, with compassion, so I gave her the bowl, and she fed Oliver one spoonful at a time. The power of the powerless."
Oliver's life had the ability to deeply impact the life of thousands after The Wall Street Journal published that story and, over the years, Oliver has touched my life as well. I've witnessed how God uses the weak of this world to do a mighty work in us who think we're without impairment, but are more impaired than we can imagine.
As Jude is approaching his first birthday, we've yet to know the lengths the Lord will allow his abilities to reach. While Jude's diagnosis pales in comparison to Oliver's, I pray that Paul, our children, and I will be greatly affected for the better through this journey. It may be in the way we reach out to others with disabilities or the worthless chaff in our own lives each one of us will learn to thresh. Jude's life might even, eventually be what the Lord uses to help shape our children's worldview, directing them to an eternal mindset established in Him.
Yes, our lives have been significantly rearranged this past year, but we'd do it all again a thousand times over. Unconditional love is an amazing thing. We'd give our last breath for our children. They are a valuable, priceless gift, each one of them. ~Jen