For parents of those with special needs- the questions can soar and the answers can by murky. This is what happens with 20%, this is what happens with 80%, this is what we THINK we can expect, this is what we think we CAN NOT expect. While no child is predictable, the uncertainties surrounding an individual with special needs can be unending. And most likely, there isn’t a single pamphlet, or book, that will really walk you through it. For this reason, I think it is SO VERY IMPORTANT for families to find a supportive community – even if it’s just on the internet. Parents truly need someone in their life who understands the intensity of it all. Someone who can also bring their own intense situation to the table. They can look at each other- acknowledge the other’s journey- and feed off each other’s courage.
Thankfully, throughout Abi’s home-coming process, God blessed me with a few fellow mamas doing similar things. In the middle of hospital visits, surgery, feeding tubes, and the whirlwind of new motherhood, these women literally just showed up in my life. I didn’t seek them out (introverted spirit + exhaustion does not fare well for finding support groups) and I still consider their unexpected presence nothing short of a miracle.
One of these miraculous meetings occurred during our first hospital stay.
As soon as Abi came home we went to see her pediatrician at the Children’s Hospital. Upon seeing her aspirating on water and discovering she weighed a mere 14 pounds at 2 years old, we were immediately admitted. We didn’t even step outside. We went straight from the pediatrician’s office, down the elevator, and back up into a hospital patient room on the other side. For the next 9 days we called that room home. Because Abi was so underweight, we had to monitor her closely for something called Refeeding Syndrome. This process took over a week and in the meantime we got every EEG, catscan, bloodwork, and swallow study you can imagine. Not to mention, they also put an NG tube through her nose and down her esophagus (something we would go home with) and prepared us for the reality of her needing a G-tube surgically implanted into her stomach.
During this time we had our first experience with physical therapy and occupational therapy and began to get a snapshot of what life beyond the hospital doors would look like. While it was a scary time, it was also a time of enormous relief. I felt a joy and gratitude I had never felt before. After more than a year of waiting and an intense three trips to Ghana, we were all HOME. I could see MY CITY. I could drink the WATER out of the tap. I had FRIENDS and FAMILY within walking distance. TACO BELL was downstairs. (Seriously comforting.) But most importantly Sean and I HAD OUR DAUGHTER in the room with us and she was getting the help she needed. If I ever got overwhelmed, I would walk to the window, look at the streets of Nashville and feel immeasurable relief.
Despite the comforts of home though, this new territory was just that – NEW. And we HATED seeing our daughter experience massive fits of unknown pain and then struggle again every few hours as they tried to find a vein strong enough to take the next round of blood. (Watching for refeeding syndrome involves taking blood every few hours and her ports would always close.)
One day, with beepers going off in every direction and Abi quietly lying in a bed with IV’s in her arm, feeding tube down her nose, bandages on her wrists, and a quiet strong spirit that was permeating the entire place- Sean grabbed hold of my shoulders, looked me in the eyes, and said, “We need to find people who are doing this.”
Minutes later Abi’s new, young nurse walked back in. We had been there an entire week and this was our first shift with her. She had been a joy since she arrived that morning. She went to Abi’s bed, began checking her vitals and going through the normal routine. After a few minutes she looked at me, and said “At the end of my shift I’ll teach you how to do the feeding tube today. I assume she will be going home with it.” I nodded. Then, standing beside Abi’s bed, she looked up at me and said, “I know how you feel. I adopted 3 children and one has severe special needs.” She was my age. She was adorable. She had a badass nose ring. I think I started to cry. She continued, “My husband and I adopted a sibling group of three and one of the children has significant special needs. He was on a feeding tube for a long time and he used to have 10 seizures a day. They told us if he learned how to suck his thumb we would be lucky…” I was blindsided. Not only had they also decided to adopt before having biological children- but they had adopted a child with profound special needs as well. The similarities were crazy. She then proceeded to tell me their amazing story, answer a million of my questions, and immediately became one of my first fellow mamas on the front lines of critical care. I teared up and told her that Sean had JUST said how we needed to meet somebody in this position. She then responded, “I’ve never even worked this shift OR this floor. I just felt like I was supposed to. Now I know why.”
We couldn’t believe it.
The next day she was back in our room with a pamphlet she had printed up at home (written and designed specifically for us.) It had Abi’s name on it with diagrams of the feeding tube and other helpful resources. Before she left she explained that it was easy in the special needs world to become your child’s “manager” – and that she had to learn how to purposefully reject that tendency and to actively dive into the world of “mother” with intention. “Don’t forget to snuggle, to play, and to just be. Yes, your child needs PT. Yes, your child needs OT. Yes, your child would benefit from speech, feeding, and all other amazing therapies. But it should NEVER come at the cost of snuggling on the couch, reading a book, or going on a walk at the park. Typical parenting STUFF should reign high on the priority list.”
Lastly, she told me that since she and her husband could work from a variety of locations across the US, they were getting ready to go on the road with their kids and see the world. “It’ll never be easier than it is right now to travel- while the kids are this young.” My jaw dropped.
Not only was she thriving, she was ADVENTURING with their sweet family. It absolutely sent a wave of fresh air into my mind, spirit, and body. I felt so taken care of I couldn’t believe it. Here SHE was our nurse during a time when we needed HER EXACT STORY so desperately. It blew me away for a number of reasons, but perhaps the biggest was that she had signed up for that shift days before we even knew we needed someone like her in our life. Before we EVEN KNEW TO ASK FOR IT, God was at work filling in the gaps and meeting not only Abi’s needs- but our own as well.
To this day, I nearly lose my breath thinking of that moment- It was an incredible-absolutely-straight-out-of-heaven-gift. For a long season I referenced that pamphlet all the time. I kept it on Abi’s bedside table and when I felt uncertain with the ng feeding tube, I would look at the diagram and triple check myself.
I have never spoken with her since. Other mamas came into my world, (via similarly miraculous circumstances) and in the hospital visits that followed she wasn’t there. To this day, her story continues to bring me hope, enthusiasm, and a deep awe for the choreography happening behind life’s curtain.
Cheers to the angels among us, the great mysteries that drop our jaws and build our spirits, and the power of a similar story looking you in the eyes and saying, “Yeah- me too.”