We interrupt our regularly scheduled program to bring you a New Year’s update…
New Year’s Eve, 2017
We rolled into our own driveway at 1:47am on New Year’s Eve. We weren’t out partying. We were traveling home from a nice visit with my family in South Carolina. It was FREEZING COLD – so cold that after scraping a bit of snow off the van, I couldn’t warm up for hours. My face hurt and by the time we got home, my feet were stinging from the cold and the car thermometer registered -1 degree Fahrenheit. I don’t want to know what the wind chill was.
Our five-year old, Eliana, had only fallen asleep in the last few minutes. She was so excited about flying in the plane, getting her own cup of apple juice and a cookie, and waiting for the fasten-seat-belt-sign to turn off, that she bounced all over her daddy for most of the flight. Exhausted when we got off the plane, she insisted on “playing” on the little play set outside the gate for a minute. At that hour, her version of playing meant that she sat on the teeter totter and rubbed her eyes. Ha! I figured she would sleep in the next morning because her little eyes were brightly shining at me at 2am when I covered her up in bed, but oh no. That child was up at 7am, ready to go.
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Our three-year old, Charlie, quietly walked through the airport at my side, obediently holding onto the stroller. He ate his snack, studied the information about the airplane we were on, and then curled up in a little ball and fell fast asleep on my lap. His only tears came when we woke him up to walk out of the plane and he realized he hadn’t had his apple juice. We remedied the situation by purchasing the highway-robbery priced apple juice in the vending machine outside the gate and letting him drink it pure, straight from the bottle. He then quietly got in his car seat, fell asleep, and barely opened his eyes when we transferred him to his bed.
Redmond, sweet baby Redmond, traveled like a champ, fussing only during takeoff and landing when his ears hurt, and for a moment when we stopped the car on the way home for a potty break. Because the plane wasn’t full, we were able to bring his car seat on the plane and give him his own seat. But the plane was only four seats across, so that meant one of the kids had to sit alone. They weren’t having it either. So during takeoff, they sat together in front of me and Redmond, across the aisle from Rick.
As soon as we got in the air, I hooked Redmond up to his feeding tube, laid him fast asleep in his car seat, and unbuckled my seat belt (shhhh….) to sit in the next row beside Charlie. Eliana bounced over to sit by her daddy. I had to laugh a little at myself, leaving Redmond “alone” in the seat behind me. I’m totally the mother of a third child. I would NEVER have done that with Eliana. Of course, I probably couldn’t have done that with Eliana. Redmond didn’t mind a bit. When we started descending and my ears popped, Redmond fussed a bit. I laid Charlie’s sleeping head in my seat without a peep from him, moved back to sit by Redmond, and held him during landing. He quickly fell back to sleep once his ears felt better, and we carried on.
Redmond, the super-baby, slept in until 9:45am. Ahhh… The older two sat on the couch on top of their sleeping daddy, and I slept in. Once we were all awake, it was a flurry of unpacking, playing with new toys, feeding the baby and ourselves, and putting them all back down again for early naps.
I have a few moments of quiet now to think about the year that is ending.
2017: a year etched into the walls of my heart and mind. I have never experienced so many wild emotions and events in one year.
It was a year of sickness – the end of my pregnancy, the c-section, and horrible staph infection; Redmond’s 46 days in the hospital and multiple bouts with Rhino-Entero Virus; Rick’s head injury and some scary days where we were uncertain if his brain was okay, and lastly multiple colds/coughs/infections in the older kids.
It was a year of some miraculous healing and some slow and steady plodding away at health. I healed nicely from the c-section, slowly from the staph infection, and gleefully danced through the holidays eating without a thought for gestational diabetes or hyperemesis gravidarium. (I also had to buy some new clothes to accommodate all the glee. :-/ Hopefully I’ll be able to give them away pretty quickly.) Rick’s brain is actually just fine (whew) and his wound is nearly healed after 14 staples.
Redmond has miraculously recovered from pulmonary hypertension, multiple holes in his heart (no surgery needed), and a host of other health concerns. He no longer needs supplemental oxygen, and I’m starting to wean him off the feeding tube. Tears of gratitude stream down my face as I type those words, remembering that just this morning he took 75 cc’s (2.5 ounces) of milk, oatmeal, and fruit at one meal, then chowed down on Puffs an hour later! Feeding issues have been a major challenge, one we have plodded through, but he is making wonderful progress. In spite of ECMO and a huge list of medical interventions required to save his life, he is thriving and happy.
Fear and repeated, intentional, difficult actions to look past our circumstances and choose to trust in God marked the first half of 2017. I made a choice to sing praise to God when my heart was breaking apart. (One of my favorites is It Is Well – Kristne DeMarco & Bethel Music.) I cried out to my friends and family for help, begging them to pray when I could not. I clung to my husband for support and strength. And I sobbed as I saw my beautiful older children struggling through my sickness and separation from them, cared for by others in the best possible way I can imagine, reaching out for a mother who couldn’t attend to them. The first half of 2017 was crushing, humbling, and excruciating. Any illusions I had that my life was under my control were ground into dust and blown away. I could control NOTHING, so I clung to the Lord with a fierceness that probably only comes during times like these.
Surprises of joy and bursts of love marked the second half of 2017. God fulfilled His promises to me. Where sickness and fear had tried to break in and steal, God caused health and peace to rush in and soothe. The praises I sang were no longer a sacrifice, but expressed pure and true gratitude and love. The shock and loneliness I had felt left as I recognized the strength of the arms that had reached out to protect, cocoon, and lift me and our entire family up out of the quicksand that tried to suck us in. We received more than we ever could have imagined – emotional support, financial support, prayer support, helping hands, and so much more.
Our older children made it through the stunned separation from us with grace, thanks to my husband’s parents who stopped everything to become surrogate parents. Our part-time babysitter literally moved into our home to help them, planned meals, bought groceries, managed schedules, and kept everything going. I’m pretty sure they didn’t miss one day of school, library, gymnastics, or Sunday school. I don’t even know everything they did, what they sacrificed in terms of time with their own friends and family, to keep mine from falling apart.
Through the crushing, humbling, excruciating first half of the year, I learned that I had a web of support and love surrounding me that I could never have imagined. I learned how to ask for help and be a grateful receiver. Our church stepped in to provide spiritual and emotional support, prayers, meals, and even came over to clean up our landscaping, finish a painting project, and wash windows! My mom’s group has brought over more freezer meals than I can count, prayed for us, visited us in the hospital with gifts, coffee, and hugs. The women in my Bible study have listened to the deepest places in my heart and offered prayer, support, and love. They’ve connected me with resources I desperately needed. Our neighbors kept things running on the farm, doing acts of service we may never fully comprehend. My in-laws’ church provided meals for them while they were the primary caregivers for our children. My parents fasted and prayed, visited often, listened for hours as I shared my concerns, and made numerous sacrifices to support us.
My sister dropped everything, got on a plane with about two hours notice, and flew to my side during the worst of the crisis. She was my brain while I muddled through pain medication and shock, asking intelligent questions, filtering the information for me to understand, and doing the first research into Down syndrome for me. Rick’s sister and brother-in-law got us out of the NICU for a delicious meal, helped give his parents a break in childcare, and kept communication flowing with his family. I could write pages upon pages of all the support and blessings we received. I’ll end with one last thing – the shock of unexpected, often anonymous, quiet and thoughtful financial gifts from the community at large. We were so stunned by them, thinking they were unnecessary, and finding out later that others knew far more than we did about these things. (Even with good health insurance and state and national programs to assist, the cost of caring for a medically fragile child is astounding.)
I learned that the very thing that I thought would cause my life to become lonely and socially awkward has become the exact opposite. I have made many beautiful friends through this time of shock and adjustment. I have discovered a whole new world in the Down syndrome and special needs community – a place where parents just open their hearts and give one another grace and support.
At first Rick and I thought we’d skip the support groups and just live our lives with Redmond as usual. But then I received the phone number for a local woman who started a group for families of young children with Ds. I tentatively contacted her and have since met around 15 other families in our situation. They introduced me to a larger group called the Down Syndrome Diagnosis Network, also aimed at families with young children. I signed up for an online group for mothers of children born in the first half of 2017. Within that group is another I joined for mothers of children with feeding tubes. Through these groups, I’ve been given tools to help Redmond have the best life possible. Our little group has over 270 members from all over the US and several other countries, and I look forward to someday meeting every single one of them in person.
In 2017, I spent more hours than I’d like to think about sitting in our recliner in the living room, feeding my baby. During that time, I was able to bond with him in the way I wasn’t at first able to do. We had no skin-to-skin time. I didn’t get to admire his beautiful face and nurse him in the hours after he was born. But after he came home from the NICU, I did spend hour upon hour feeding him, looking into his dark eyes, admiring his soft cheeks, kissing his little toes, and whispering prayers over him. He made his own skin-to-skin time, nuzzling his face deep into my neck, staying there for hours at a time. What a thrill it is now to hear him calling, “Mom, mom, mom…” How my heart nearly bursts when he holds his hands up to me and says, “Mama!”
As low as my heart fell this year, it has risen to the heights too. Redmond is so loving and sweet. The way Eliana and Charlie adore him is an answer to prayer. Instead of expressing anger for how long we were away from them, they have expressed only joy that we’re all home together. I think that when a person faces such intense fear of loss, heightened emotions result when things start to look up.
2017 for me was a wild rollercoaster. At the end of this year, I find myself enjoying the calm and breathing it in. I’m looking forward to 2018, hopeful that it will be a less eventful year. I’m praying for a chance to focus again on being awesome, rather than just surviving. I’m looking forward to the day Eliana starts kindergarten, the day Charlie starts preschool, the day Redmond sits up for the first time, takes his first steps, and meets other milestones. I’m looking forward to turning my attention back on our marriage, maybe even spending a few nights away. I’m full of hope and much too aware that problems will come. I’m also confident that God will provide a way through any trial that may come, just as He’s been doing all this time.