You are amazing! 🙂 Even with the medical technology of today it is a tough battle. Wow, what a tough question. I have thought about it all day. I can only speak for myself. It would be presumptuous of me to assume that other preemie moms’ experiences are like mine.
The first thing that I think of is appointments. There are so many…. therapy, pediatrician, specialists, and home health. I feel like I should have a degree when this over.
This experience has brought forth so many emotions. There are many that I do not understand yet. While I am still processing others.
Sometimes, I am lonely. There are not many who understand what my husband, baby, and I have been through. I am not sure why it scares people… But it does. I still invite people to do things but I don’t expect them to come.
I see people differently… For better and for worse. Some of the relationships that I had prior to this experience do not work for me any more. Likewise, I have been blown away by the kindness of some. I am especially grateful for those that did not have to be so gracious.
I am inspired and in awe of my baby. Not every one gets to see a miracle unfold before their eyes like I have. Nor have I seen, before this, someone fight so hard for what most others are given. My baby has demonstrated to me what it means to be tough and resilient. I have a lot of fun with her and notice progress each day. I am so proud of her.
Some days I am scared for my baby’s future. However, it is not because I am afraid of what she won’t be able to do. I think she is already perfect. Mainly, I am afraid for her and how the world will receive her if she is disabled. Our perfection obsessed society can be cruel when one does not fit the mold.
I live one day at a time with my baby. It is hard to plan ahead when there are so many questions that remain unanswered. It is painful to make plans that won’t work. Each one feels like another thing premature birth has taken away. It is also overwhelming for me to think further down the road.
I feel guilty at times. Not for what every one assumes. I feel guilty that my baby graduated from the NICU when other babies do not. I do not know why I was fortunate while other desperate parents were not. There is no rhyme or reason as to which babies survive. I have realized that, in the NICU as well life, there are no guarantees.
I love being a mother. I love everything about my baby. We celebrate every little thing we can. There is a lot of joy in our house. Conversely, I am not afraid to talk about my baby’s challenges or delays. I do not believe that ignoring an issue will make it go away. I feel that freely talking about the tough things helps me obtain ideas from others, prepare for it, and find solutions. It gives me hope. It makes it feel more normal.
I have learned so many things from my baby and this experience. I have learned things about myself and life. I think, most importantly, it was the ultimate lesson in love.