On Friday we finally got to take Josiah out of his room, put him in the stroller and take him outside. This is something I've been looking forward to for a long time and something I thought I would be super elated to finally do, but instead I started crying. It was all so overwhelming, so scary and a little sad. There are many days, most in fact, that all that it takes to care for Josiah seems so normal. Then there are moments where it hits me that this is not normal. Putting him in a HUGE double stroller and packing it full of monitors, oxygen tanks, and a ventilator was one of those moments. It hits me that without all this stuff Josiah would not be with us. Praise God that we have these things to help Josiah until he is strong enough on his own, but it is not normal, it is not easy and it at times makes me sad. It is hard at times to see past all of the monitors , wires and tubes to find our precious boy. I have watched the video of Josiah laughing with his daddy over and over this weekend because it makes this all worth while. I watch it and pray for more moments like that. These past few days have been emotionally hard on me. I just want my baby all better. I want him to play and laugh with his sisters, I want him to sit in a high chair at the dinner table with us, I want him to snuggle into my neck because he knows that's a safe place to be. I just want him to be better.
The boy never moved from this position while we were out. Finger in mouth and asleep. He never even opened his eyes to see the outside world. Poor boy missed everything and was sort of anticlimactic.
The boy never moved from this position while we were out. Finger in mouth and asleep. He never even opened his eyes to see the outside world. Poor boy missed everything and was sort of anticlimactic.
Anonymous This journal entry breaks my heart for you. I too have a son with HLHS who will turn 1 at the end of this month. He did not have to have a trach but I do remember trying to see his sweet face past all the tubes and wires. It's amazing what God has brought him through and what HE has brought Josiah through. I pray for Josiah every day. I pray that he will be even more of a miracle than our son. I know in one journal you said you couldn't find another HLHS baby that required a trach, but that just makes Josiah even more special. I believe God chooses special parents for these special babies. Keep holding on and Keep the faith. God gave us strength and peace that we did not think was possible and I know HE is doing the same for you. Please keep posting and updating and we will keep praying.