I visited a good friend today. I met her in my Griefshare class and we have since developed a friendship. We were talking while our kids played and she mentioned that she was thinking of me the other day. She overheard a conversation about how difficult it is to care for handicapped and mentally incapacitated children and couldn't help but think how different my life would be if I were caring for two severely mentally and physically handicapped babies right now. That maybe God spared us and them from a very difficult life? I couldn't help but ask myself if there exists a more difficult life than the one I have experienced since the death of my girls. Could it really be worse? Does it get harder than this?
I have to be honest and say that those exact fears crossed my mind while my girls were in the hospital. I was so scared when I learned of their brain damage. I obsessed about their care and what that would mean for our family practically, financially, and emotionally. How hard will it be? But mostly I worried for them. Would they suffer? Would they be aware of their condition? Was keeping them alive really what was best for them? Why was this happening to them? I didn't know what was best for them. I didn't want to lose them but I didn't want them to suffer...I didn't know what to do.
After lots of prayer, tears, and constantly mounting complications in both our daughters, my husband and I chose to remove them from life support. Ellie on July 1st. Aubry on July 7th. I vividly remember walking each of my girls back to their little incubator beds and setting them down. I remember asking the doctors to be gentle with them and to keep them warm. Their little faces were blue. They felt cold. They were gone. No pulse. No breath. No life. Just a tiny little limp body. I knew their souls were in heaven and that they had been restored...but it didn't comfort me. How many mothers ever hold their dead children or watch their babies take their last breaths? How many mothers choose the day their babies go to heaven? It seems horribly unfair. And not to me. To my innocent baby girls.
A day does not go by that I don't wonder what could have been, or even what should have been. I would have taken care of my babies no matter what condition they were in. I would have loved them no matter what. I would have dedicated my life to them. But when they died I felt this overwhelming sense of relief, and then immediate guilt and pain. I knew they were no longer suffering, but I was suffering...they were gone, forever. My babies were gone.
I often think that God was gracious to my girls and that taking them to heaven spared them from a very hard life. After they got so sick it became easy to rationalize why heaven was the best place for them. But the question I always ask is why were they born early in the first place? There would have been no brain damage or organ failure or death if they went full term. They would have been fine. We would have been fine. Everything would have been fine.
But it wasn't fine. It still isn't fine. All the questions and fears and would haves and maybes are fruitless. My girls are dead and can never return to me. All I can do now is keep my promise to them to heal and wait patiently to meet them someday in heaven. At least we have heaven. Thank God we have heaven.