We aren't the type of people to wallow in sadness and defeat. But, it is important not to brush over the fact that with all that we've gone through, grief and trauma still exist.
The appropriate label is Post-Traumatic Stress Disorder, or PTSD.
Certain images and moments will never leave my mind.
•The day my water broke. The gush. The constant feeling that fluids are gushing - even now, years after the fact.
•Bleeding from placental abruption; pints of blood and fluid and hoping that the babies would hang in there. People trying to relate but really having no idea.
•The day I was in labor, and I was 27 weeks along. I was six months, and I thought I had finally made it to the third trimester. I was wrong. The nurses and doctors thought I was having growing pains and overreacting. They were wrong.
•When James came out screaming, and they held him up for me to see. I wasn't prepared for just HOW small he was. I never saw Maisie when she was born.
•The wink James gave me before he headed to the NICU with Maisie and then to another hospital a city away.
•The sleepless nights as we waited for Dr Hanson to call us. He never did.
•Seeing Maisie for the first time and not believing how small she was. Holding her for the first time and her tiny fingernails. Feeling her sneeze. I could hold her in the palms of my hands.
•The worst night of our lives. When James was in organ failure, actively dying and we asked the doctors to do everything they could to save his life. They argued with us and asked us how we wanted to let him go. We refused and refused. We couldn't give up. He wasn't ready. We slept at the hospital in the room where babies pass away and barely slept, cried so much our heads were underwater, and visited every few hours to check in. He made it through the night. Dr Hanson came in that morning and told us he could stabilize James enough for us to go home and sleep, so we did. And thankfully, he turned a corner and his organs began to function again.
•The times when our babies were dirtballs and they coded and called in all of the experts in the hospital to figure out their medical issues (or not). Their skin took on a blue / gray pallor and they were clearly not impressed with the attempts to bring them back.
•The frustrations learning to feed, and being unable to breast feed.
•When we made great connections with other families and could share in their frustrations and celebrations.
•When we had the green light to go HOME.
And so on, and so forth. The battle with prematurity continues. Both babies were in the hospital last year. They have delays. They are ahead of their actual ages in some areas. They are amazing.
PTSD is something that I continue to face. I feel like we are living with our hands and feet in the earth and are definitely grounded from our experience. We take nothing for granted. I know that we are very lucky. I know many families that haven't been afforded the opportunities that we have. They will live with loss forever. I can't even begin to imagine how that feels or what their PTSD looks like. We just need to acknowledge that this is a huge part of the pProm and preemie experience.
Honesty helps us heal.
"Hardships make us strong. Problems give birth to wisdom. Sorrows cultivate compassion. Those who have suffered the most will become the happiest."