A Medical Mama’s Tips, Tricks and Tales

One week in the hospital watching your kid gasp for air, the next we are singing “It is well with my soul” with the brothers and sisters in Christ that are holding our arms up when they are weary. How can it be? How can you sing it is well when your kid is non verbal, wheelchair bound and requires nursing care not a babysitter?

As our pastor said Sunday, “We can sing it is well when it doesn’t feel well” (Mark Timmons) because: Jesus. Because of the Holy Spirit living in us providing indescribable peace, yet, allowing us to grieve the sad things. We sing “it is well” while knowing Jesus wept, Jesus chose the vulnerable and the broken to show us his power.

And truth: It is a LOT easier to sing when you know you are held and loved and supported by people doing Jesus’s work. And sometimes you just need to choke back tears and sing/cry your way through “It is Well” to remind yourself that despite any diagnosis or hard hospital stay, it really is “well with your soul” because of the INEXPLAINABLE PEACE, hope, grace and joy of Jesus and the Holy Spirit. He died to share God with us in the here and now. What deep, deep love?! What pain is greater than the peace of Christ? None.

So church! Let us be an extension of the Lord’s grace and peace. You have been chosen to continue Jesus’s mission to love “the least,” you carry the torch with the power of the Holy Spirit. And special needs families, as much as we have been the Sunday school teachers, the deacons or the small group leaders, can we admit that maybe in this season we are the needy sometimes and accept the love and grace of our churches with open arms? (Still working on this! Not allergic to help, but def not the life we dreamed!)

Special needs ministries are a direct reflection of the work of Jesus in the hearts of His people as a part of the Body of Christ. They help special needs families remember “It is Well” when their world’s have fallen apart. Most special needs families didn’t choose this path, actually they never dreamed this would be their life. Yet, here they are trying to live God’s plans the best they can.

Nothing about a ministry for people who can tangibly give you very little, who can’t tithe, who can’t serve on any committee, who take more than they could give by worldly standards seems appetizing for a church to take on… but it’s part of the UPSIDE-DOWN-INSIDE-OUT-AND-BACKWARD work of Jesus to minister to those who are unworthy of your love and time. Truly it was the work of the cross.

Our church is pretty small when it comes to churches in the South. I am thinking less than a hundred-fifty members.. but I could be over estimating. What’s crazy is about 30-40% of the church is kids and young adults who are too young to do the work of ministry in many ways. Yet, in this small group of adults I see the love and ministry of the church thriving, especially the relatively new Special Needs Ministry – of which my family is a direct recipient. It’s not perfect, who or what is! especially because the Body of Christ doing God’s work is Satan’s favorite prey.

Last week, as you know, we spent the week in the hospital with Rynnie and juggling a 2 and 6 year old at the same time. Bedtimes, meal times (lots of throwing food and feeding the dog involved), school and babysitter pick up and drop offs. It’s logistical gymnastics at baseline, add a hospital stay to the mix and WHEW, I should be an Olympian Juggler of all things big emotions and managing little people.

But my Olympian status comes by the grace of God and the love of his people. In our small church special needs ministry, currently, there are 3 families. There are two girls, one 12 and one 3 (Rynnie) with medical complexities, both with wheel chair needs, little muscle tone and big nonverbal communication. There’s also one little fresh sweet baby boy with Down syndrome that I could cuddle and love on all day.

While the ministry is for our kids and the love they receive is enough to move mountains, the love our families receive is also beautiful. It’s the Jesus with the least of these kinda love.

The truth is when Rynnie is sick, my ability to serve the church is lost, my ability to do anything but keep my family’s routines, food on the table, kids emotions in check, and bedtime somewhere in the realm of normal is nearly impossible; going to the grocery store is hard, I can’t be two places at once and I can’t always pick up and drop off like I normally do. Physically, I am generally suctioning, doing some sort of chest therapy, or chatting with a million doctors, residents, and dreaded med students about Rynnie’s care. When Rynnie is sick, I am exhausted, running on little sleep, and just about to lose it.. except by the grace of God. Often I am either super on it with Rynnie updates or way too drained to respond. When I am drained, it’s the church that’s often there to “fill me up.” The special needs ministry team is the regular hands-and-feet-of-Jesus driven people of the church who carry (ied) us through Rynnie’s birth, her diagnosis, her years on Hospice, and through annual cold and flu seasons.

Our church’s Special Needs ministry isn’t fancy or super organized. It’s a few church members alternating keeping the girls during service, texts of encouragement, and baseline we-are-in-this-togetherness. But, last week it was delicious meals, sitting with me at the hospital, babysitting, school pick up, and prayer – on your knees prayer. They helped meet tangible physical needs, they prayed over my tired brain and body filled with emotional exhaustion; the tank empty, I can’t go on like this feelings; and most importantly, they prayed fervently. They were, and I think will continue to be, the best version they can of the church God’s called them to be. And, that means more than any fancy ministry out there – ask any exhausted medically complex kid’s mama.

To our team thank you. More than words can say. To other teams, thank you. More than words can say. To those on the fence about starting a group or team like this, take the leap. Your help and support are showing that all lives are valuable, and you will be blessed because of your work serving these families.

So. cheers! Here’s to the little churches doing big things for the Body and big things for the least of these. Here’s to loving the world’s unlovable. Those who only have a smile to give in return. And, here is to the kids with the Special Needs super powers showing us real, unadulterated joy.

We are thankful, stacked with sourdough + spaghetti, and love, so much love.

Acts 4:32-35

New International Version

The Believers Share Their Possessions

32 All the believers were one in heart and mind. No one claimed that any of their possessions was their own, but they shared everything they had. 33 With great power the apostles continued to testify to the resurrection of the Lord Jesus. And God’s grace was so powerfully at work in them all 34 that there were no needy persons among them.