Today was like any other day. Up, fix breakfast, eat, tell Noah to stop screaming, get kids dressed, take a shower, tell Noah to stop screaming, therapy appointment, pool, gym, home, dinner, dessert, get kids in jammies, hugs, kisses, prayers, bedtime for them, edit some pictures, bed for me.
But one thing was different.
Noah's therapist came and weighed him. He lost weight. Nothing abnormal about that. This time it was only 2 oz in a month and he grew a few centimeters. She said his height was good weight was not great. He is in the 4th% on the typical kids chart. We talked about getting his gtube out, what he eats in a day, about how many calories, 1500, dude can eat! Then we said our goodbyes and off to the pool we went.
Later that evening as I was feeding Noah a huge helping of burrito and it hit me...what if we were so worried about the Trisomy 8 killing him and it is the lack of weight gain. What if he continues to eat like a champ and get taller but doesnt gain weight and dies? Oh my gosh he has Trisomy 8, what am I doing adopting again, what if they die too? Oh my gosh. Panic and sadness follow.
When Noah first came home a therapist and I were talking. I told her I don't worry about tomorrow we just focus on today. She told me that was the best attitude to have and so many of her families ask about 2,4 10, 20 years in the future. It isnt good to think about what things may look like that far ahead. I have no idea why it hit me so hard yesterday.
My friend told me us SN moms will bury our kids, its a sad fact but true. I dunno. Maybe its denial, maybe its my faith in my Savior, but I don't buy it. I won't speak that into my world. I will not bury my son. I trust God to keep him alive and I trust the healing God has given us. It was a momentary lapse in judgement, faith or a moment of weakness. I dont know or care what it was I just know my God is bigger than Trisomy 8. He is bigger than this weight issue and Jesus loves Noah even more than me.
So I will pray and I will focus on today. Today Noah put his face underwater over and over again at the pool. Today Noah ate like a champ. Today Noah babbled more than ever before. Today my son said Mama and looked right at me then smiled a smile that he knows will get him anything he wants. Today he stood in the bathroom holding his puppy waiting for me to change him and peed directly on a towel in front of him. Today we laughed, loved and lived.