5/10/99
ME: You are so beautiful & so brave! You are scheduled for an MRI on Wednesday morning. You get to ride in an ambulance, you lucky boy! They just want to cover all bases, I guess. That means they’ll probab;y schedule your trach for Thursday or Friday. They say you won’t be home for my birthday. I’m pretty bummed about that.
CASEY: They put you back in the NICU to keep a better eye on you and get you ready for some of your procedures. We are disappointed, but hopefully this will be the last time. You’re doing well. ”Baby Pooh” is your favorite toy. You like to have him near you all the time. So cute!
Dad
Up to this point, Paxton’s journey had been one of ”one step forward, two steps back.” It was discouraging and confusing and faith-rattling. He brought us so much joy and pain all at the same time, and I hope he thought the same about his life. He didn’t know life could be different from what he was experiencing. He had pain, but he also had joy from his many stuffed companions surrounding him, the smiling nurses and doctors, and the love of his doting parents. The joy showed in his smile when we would say his name and snuggle him close. This was the little boy we were told to terminate because he might be born too early and not survive. Would we have been spared this heartache of watching our only child have pain that we could not fix? Possibly, but we also would have missed the joy of holding our first baby in our arms, seeing his smile, hearing his tiny cry, and experiencing the spiritual growth God had intended for us. Paxton’s life or death was not a decision for us to make. That only belongs to God.
Julee, This is so touching, so beautifully written! Brings tears to my eyes, and I can only imagine how difficult this writing journey is for you. My prayers are with you, my friend!