A Different Type of Grief

Luke is now a week old.

He is doing wonderfully.

He had his 1 week appointment yesterday. He's gained 3 ounces (still needing to gain another 7 ounces to get back to birth weight.) He's healthy and perfect. He's nursing like a rockstar and is generally a really happy and calm baby.

As I got ready to take a shower this morning, I put him in his crib to look at the mobile. This was his first time being in his crib. At night, he sleeps in his pack and play next to our bed. When I placed him in the crib and turned on the mobile, I was ambushed with grief.

The mobile that is on his bed is the same mobile that Joshua loved so much. It is the same mobile that was on his crib in the hospital. He would watch that mobile go around and around and he would coo and squawk at it.

As I watched Luke's reaction to his new bed and mobile, I was struck with the thought of what life has been like for him in just a week. I was struck with just how very different life was for Joshua.

Within moments of Joshua's entrance into this world, he was whisked away from me. He wasn't given the opportunity to nurse or nuzzle at my breast. He wasn't given the chance to be cleaned off, wrapped up and rocked by his daddy. He wasn't given the opportunity to know what life outside the womb was like without being poked, prodded, shoved under bright lights, and hooked up to monitors, cords, and IV's. I didn't even get to hold him until 24 hours after he was born.

Joshua didn't get even 5 minutes of the life that Luke has had.

That KILLS me.

If someone were to ask if I would do it all over again with Joshua, I'm not sure what I would say. The thought of putting another child through 2 or more open heart surgeries, multiple pokings, and procedure after procedure makes me want to vomit. Joshua knew nothing but pain, drugs, and sedation. The guilt that I carry around with me about what we put him through to try and save his life makes me sick to my stomach. I pray that he knows that we did it to try and give him life.

We did the best we could with the knowledge that we had. Our only other option was palliative care- bringing him home to die. What would that be like? Would he have had a chance to live a normal, although short, life- the kind of life that my 3 other children have gotten to experience? In the days that he lived, would he have been happy? Would he have known what it was like to be home? Would he have been pain free? Would his passing be less traumatic and sudden? I'm not sure if I could have taken that path though. What's it like to bring a child home to die? I can't even begin to think about it.

I guess, as I process these thoughts, I have to continue to remember that Joshua's life was perfect and beautiful just the way it was. We did the best that we could. We loved him fully and completely. We loved him enough to let him go when we had to. His well being was at the forefront of every decision that we made. We chose the path that we chose to give him life. There is no going back. There are no regrets- there can't be. When it comes down to it, he was a little boy with a very broken heart. He was and is loved. His life gave his little brother life. His life gave us life.

Joshua

Luke

As we are learning who Luke is, I think we will continue to feel this sort of grief. It's a grief that is mixed in with joy. It's a totally different kind of grief. It's learning how to live with it and letting it come as it is.