April 24,2023
Noah just had his 6 month check up. It feels like every month of health is a supreme gift! I feel like screaming “we made it!” Haha. Only because it’s been such a fragile time for Noah…from surgery at birth to contracting RSV at 1 month, to finding out he has loss of hearing in one ear (got his hearing aide that we don’t use because it’s not very practical at his age), to getting pneumonia after our Korea trip and all the therapy appointments in between that show he is delayed from normal kids. I knew this was all to be expected and yet it still doesn’t make it less “fragile.” So to make it to 6 months feels like a tremendous win! However, my husband, who took Noah to his appointment, told me that we need to get his head and eyes checked because he could potentially go cross-eyed. His head has been needing to get checked as well I’m case the platelets around his skull are not growing properly.
When I heard the news of about him needing to get his eyes checked and that he could potentially become cross-eyed I needed to run to God again. I know that’s a blessing, but at the moment it feels like a burden…I don’t want Noah to be cross eyed. I don’t want him to look funny or have trouble seeing well. I don’t want him to be cross-eyed! And I know God knows. And I pray that Noah wouldn’t be, but I hold my prayer with open hands knowing that God is wiser than me and God has a plan for Noah. And that plan is good—cross-eyed or not.
So, I dive into prayer and meet God in the secret place.
I’ve been listening to this song called “Be near to me” by Davy flowers and it’s a constant reminder to myself when I lose it…that I have it all. That nearness to God is all I need. I take rest in Him.
I just put Noah down for a nap and I love to stare at him. Asleep or awake Noah is just so beautiful to me. I love everything about him. His head, his eyes, his nose, his mouth, his neck and all the rolls on his little doughy body. He’s my baby boy! I love him so much. But for a split second I am transported to a place where I care about what others think and then I start to sort of feel sorry for myself. I start to think “why Lord?” Why me? Why my son? Why my family? And I start to think about all the people around me who have perfectly healthy kids and I start to feel like I got the short end of the stick. This was the same feeling I had when I first received the diagnoses at 12 weeks pregnant.
And I ask myself: “Jamie did you just convince yourself that it’s not that bad, but really you feel like it’s terrible that Noah has Down syndrome?”
And I know without a single doubt in my mind that the answer to that question is “No.”. A resounding “No.”. But I need to ask myself and I need to hear my truth because when I don’t it’s easy for me to think my feelings in that “split second” are the truth. But it’s not—it’s more like me thinking about the difficulties alone without all blessings. And anytime we focus on the bad or focus on the food our attitude towards that thing will start to get influenced. But when I look at the WHOLE picture: Noah has Down syndrome and he has been a joy and he is so sweet and is such a fighter for life. Noah is hard of hearing in his left ear, but his right ear will hear the sound of my voice and erupt into the biggest smile. His lower body has low muscle tone and we are blessed to have a full on team of therapists and professionals who come to our house for free to be with Noah and love on him.
Noah might end up becoming cross-eyed, but it won’t affect his heart for Jesus and it won’t touch his smile.
I don’t have to worry about anything.
I can put my trust in God, because up until now God has proven to me that I needed Noah and I am a better person now because of Noah. To be honest, it’s not harder or crazy inconvenient as I had feared it might be, and maybe that’s because he is still young, but now that Noah is here my love has grown more powerful and I know that whatever the future holds we have more than enough strength and provision to live our lives to the fullest.
