I have to be honest with you guys. I've really been battling with something, and I need to you understand that this is coming from a very raw place...the heart of a mother who's been told over and over that she could lose her baby. **God does not love me any less because my son has a problem or because I am preparing for his new life. I do not lack faith for doing that.**
Come with me through an appointment for a moment and hear them tell me that this is not just a defect, this is really bad one. Hear them say that he could die, that these surgeries they are telling me he'll need are not a cure but just offer him a chance at time and life. Then they tell me that I can choose to just let his heart stop naturally. Every time a doctor mentions the death of your child, it does not get easier.
I cannot tell you how many times my heart has broken for his broken heart and how many hurts I've felt. I NEED you to understand though that this is the reality. I have to prepare for what he needs. This is what it is right now, and just because I have to make plans for his life does not mean that that can't change. God is powerful and I've seen Him perform miracles. I am not losing faith in that just because, as a mother, I have to do what my son needs right now. Sure I could sit back and do NOTHING and just believe that God could fix his heart, but in my eyes, I'd be neglecting his current reality.
We all know reality can change. I have seen that time and time again, but there is no use in me trying to pretend this isn't happening.
AND YES I am grieving. I have to grieve the loss of the life we thought we'd have. That is a real thing. My thoughts are no longer on cribs and newborn clothes, but on hospitals and surgeons. His needs are different now, and that's ok. This is not a bad place, it's just a new place, and I need to adjust to a new place. A friend sent me an article about how hearing your child has a defect is like planning a trip to Paris and then landing in Holland. Holland is not Paris, but Holland is not bad. Yes, you have to learn a new language and adjust your plans, and sometimes you look at Paris and wish you'd gone there, but Holland, while different and scary at times, is not bad at all.
HEAR THIS THOUGH my faith is in God, that even if Caden's heart is not healed HE has a plan. He is not asking me not to feel; God gave me these feelings. What He is asking me to do is rest...rest in Him and His Grace, believe He's got this covered and it's not my battle to fight along. He's asking me to trust that in those hard moments it's ok to cry but come crying to Him. Those desperate mutters of "help" do not fall on deaf ears. I do not walk by my own strength in these moments because if I did, I would be long done by now.
We will keep believing in miracles and giving Caden our biggest and best fight, but we also need to be parents. I'm asking you to believe with us, pray with us, but also support us. This is hard and having you guys keeps us going. Just knowing you are there is more comfort than you know.