Down Syndrome Awareness: Emberley (part 3)
Join us in October for Down Syndrome Awareness Month as families from our DSDN Birth support group share,
what they wish others knew about their child with Down syndrome.
As the pregnancy went by I had more appointments than I ever thought were possible. It was like we lived at the high risk clinic. The day came to be induced. She came out into the world beautiful and more or less healthy. We named her Emberley, after the campfires that my husband and I fell in love at over the previous summer. Emberley, because she was a tiny little burning flame. A fighter.
They whisked her away to the NICU where she lived for 31 days for feeding difficulties, and congestive heart failure. We stayed at Ronald McDonald house for that whole month and finally took her home, on medications and a strict feeding schedule. When we got home there was more trouble. During our absence, our trailer had been destroyed by storms and some little critters that had decided to move in. We couldn’t stay there. We were homeless, with nowhere to go so we went to the county for help.
We had a rough several months, bouncing from hotels to Air BNB’s. Covid hit and we were basically stranded, with nowhere to go. No one wanted to rent to us and we couldn’t afford to keep renting Air BNB’s and hotels and also have money to rent a house.
Call after call got us nowhere. There were no rentals available. By some miracle, our social worker found someone willing to rent to us. I still don’t know how she did it, but she did. We were able to move into a beautiful 3 bedroom home with a nice backyard. It was even in the neighborhood for our older children’s school so they wouldn’t have to change schools, which was great. And we could actually afford it. It was definitely a miracle.
We hadn’t even been moved in for a week when we discovered Emberley needed emergency open heart surgery. Nothing could prepare us for the whirlwind, life would be. She ended up being in the hospital for another month of her little life. It was hard watching my tiny, precious baby be in pain. It was hard to process all of it and she had some complications from her surgery. One of them resulted in her needing an NG tube and eventually a G-tube.
Before her G-tube surgery it was discovered that she had malrotation of her intestines and would need another surgery. And of course another hospital stay. I feel like her first year of life she spent more time in a hospital than at home. That wasn’t the case but it is definitely what it felt like.
Fast forward a year, and our little Emberley is thriving. She survived open heart surgery, abdominal surgeries, failure to thrive, congestive heart failure, covid, feeding tubes, and multiple illnesses.
Emberley loves music and farm animals and cuddling. She is whip smart, and has so much personality. Emberley is the glue to our little family and we all love her so much. Everything changed for the better with her existence and I can’t imagine a life without her in it. It is as if everything we have ever experienced was preparing us for her.
Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. – James 1:27 NIV