Jun 8, 2017

Tiny but Mighty -- Part One

Hello from South Africa! I wanted to say hello and update you on one of the best and all consuming parts of my 2017 thus far. It is a long and special story so it will be coming to you in four parts! This story begins in the beginning of January and you will soon know one of the reasons why this is my very first blog of 2017. Without further ado... 


Ever since my journey began in South Africa I have hoped and prayed to be able to care for a baby with Down Syndrome. Don’t ask me why, I won’t be able to give you a concrete answer. Maybe it is the random photography blog I have followed for years, a precious woman who has a little girl with Down’s. Maybe it roots back to the week I spent with a cabin full of fantastic boys with special needs one summer at Camp Barnabas. We had a tall, handsome, funny, typical-to-cool-for-school 16-year-old with Down’s who had me in stitches every day. The most likely conclusion is that long before I met Baby J, God had put him in my heart. A cloudy, hopeful foreshadowing of lessons, love and joy just on the horizon.


There have been a few babies with Down’s that have been in our network and we were a placement considered for a little girl with Down’s a year or two ago but it never sorted out in our favor. More often than not, when a baby is ready for placement, the Social Worker in charge of the baby’s case will contact our adoption agency and then the adoption agency will contact us to fetch the baby when it is ready for discharge. So it was a change of pace when I got a call from the head Social Worker at local hospital. We had met a handful of times and we, both being believers, had struck up a friendship but this was the first time she’d ever contacted me about a case… well, two cases in fact. Long story short, she had two babies that she wanted to come to our house. I spoke to our Social Workers at Abba and there as quite a bit of back and forth about which baby I would take, when I would get them and until the Tuesday they were ready for discharge I didn’t know if we were bringing home one or two babies. Cindy, our other House Mother, and I had the privilege of starting the day dropping off two precious people with their Forever Families then we made our way to the hospital to pick up our two new littles. When we got there, the social worker was busy coping the babies’ files; first a little baby girl C and then J’s. She left to copy J’s file but then suddenly returned, her face ashen. She began to point to a line on his discharge summary and was busy exclaiming, “I didn’t know! I really didn’t know!” I drew my eyes to the line she was pointing to and it read “Patient exhibits definite markers of Down Syndrome. Genetic testing was preformed and Trisomy 21 has been confirmed.” Thankfully this lovely lady knows me because what I did next was not only completely unprofessional, it was a little bit embarrassing: I put my fist in the air and yelled “Yes! I’ve always wanted a baby with Down’s!” I am pretty sure she thought I was joking until Cindy and I confirmed my desire twice over. Then she began to cry because she thought I would be unwilling to take him once I learned of his disability.


After filing out some paperwork Cindy and I made our way to the Preemie Ward where both our new babies were waiting for us. We entered the toasty room lined with sterile and cold bassinets and began to look for signs indicating which ones were “ours”.  We met C first, a healthy and chunky little princess with the thickets brown curls you have ever seen. Cindy began to dress her and I stepped to the side looking for our J. My first clue as to J’s size should have been when we first arrived on the ward. When the staff was told that we were there to pick up the abandoned babies on the ward, the sister exclaimed, “Even the small one?!” Small didn’t even cover it… J was 7 weeks old and minute! He was found just after birth at 1,1kg and had been slowly growing in hospital for the last 7 weeks and still only weighed 1,7kg when we brought him home. I could barely hold in my excitement as the Sister finally rolled his bassinet towards me and I was able to lay eyes on him for the very first time. My heart exploded, broke, melted and beamed with joy all within a fraction of second. I couldn’t wait to get him into my arms. I slowly began to unwrap him and dress him in the HUGE clothes we brought for him. We had brought a 0 – 3 month yellow snuggly and white vest that he practically swam in. I wrapped him securely in a swaddling blanket and covered him with another and just brought his face close to mine so I could breathe him in. I couldn’t wait to get him home and get to hold him close to my heart! We said goodbye to the nursing staff on the ward, popped by the social worker’s office to show off the treasures we were able to take home. We had to make a stop at the courthouse to have both J and C legally placed into my custody and then we started home. 



We finally made it home to show off the beautiful babies to the rest of the Aunties and officially admit them into our home (think tons of paperwork and pictures). We prayed together as a team, welcoming these precious littles into our home; asking for blessing, provision and the Forever Families to come. I marveled over the tininess of J as I bathed him, measured and weighed him, taking note of the 7 weeks and the marks they left on his little body. I had heard many times how babies with Down Syndrome have low toned muscles and so I imagined a floppy, lazy baby who was a little lump that had to be motivated to move. Silly Auntie! J couldn’t stop moving! He stretched his arms and legs out as wide as can be… splits and back bends and he even was rolling over! From the very beginning he was a squirrely little man; busy and squirmy in a way that required both hands! He was alert and sweet and didn’t cry once in the first week we had him! No joke! He would grunt and snort and sometimes let out a short yell if he was really bothered but never cried. When he was hungry he made these little snorting sounds that sounded exactly like a baby duckling. Every new sound, every new move, every new expression I feel harder and faster into deep, deep love with our new darling.


From time to time in the chaos of living and loving all these little people somehow a song gets attached to a baby. I was listening to the musical “Waitress” when baby girl A arrived, so naturally “Everything Changes” became her song. Baby boy G chose his song, when he was just 2 weeks old we were hanging in my office and I clicked on the first “kid” song I have in my iTunes and Alison Krauss’ version of “Baby Mine” from Dumbo began to play. I kid you not, G started “singing” along and suddenly that was his song. When I was weathering one of our difficult first weeks with J one song kept coming to mind: Stevie Wonder’s “You Are the Sunshine of My Life”. I finally had to download it just so I could pacify the musical earworm crawling around my cranium. The first verse sings, “I feel like this is the beginning/Though I've loved you for a million years” and when I heard it I knew that it was going to be J’s song.


J and I spent our first days together to skin-to-skin doing “kangaroo care” to help him grow, stay warm, regulate his heartrate and to let me keep a very close eye on his breathing. Like most premature babies, J had a difficult time regulating his breathing. Preemies are notorious for forgetting to breathe! A fright, a sneeze, too hot, too cold, a burp – any of these small inconveniences can cause a preemie to stop breathing. J was just the same and I had a habit of starting to count whenever he had a lag in breathing and typically by the time I got to “five” he would have a sharp intake of breath and go on like nothing major had occurred. Holding him close and wearing him in the sling allowed me to monitor his breathing 24 hours a day. Due to our “kangaroo care” J spent a good amount of his first days with us attending important meetings, joining me to the shops, taking his friends in the house to visit our OTs and even dropped off a few friends at the airport. The first nine days were a dream; a bleary-eyed, blissful dream and then day 10 arrived and my world turned upside down....


I will try and get the next part up in the next week or so! Love you all! Until next time!

2 comments:

  1. I love this story! I have also followed a mommy blog of a mom with a child who has Down Syndrome and does a lot of advocacy work for it. Have you heard of Ruby's Rainbow? It's a scholarship program for college-aged folks with Down Syndrome to attend college! Sending lots of prayers to you and Baby J for the work you're doing and for his health!!

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    1. I haven't heard of Ruby's Rainbow but I am going to have fun researching about it!!! Thanks for the prayers and love!!! He is doing great and had a happy day today :)

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