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The Reason.
My wife and I had our beautiful little girl removed from her womb at 27 weeks. This tiny 1 lb. 12 oz. wonder has shown me many new things that you cannot imagine. I need to stress to you that every single moment matters right now. Every single item that we as parents decide for Jonna can implicate results that can be detrimental for the rest of her life. Things matter not just now but the future. Eye problems, lung disease, neurological disorders. You cannot even fathom this experience. We get nothing from a normal baby birth, we just watch powerless. The term is coined “ambiguous loss”. You are grieving due to sorrow of helplessness and you are happy that you had a baby. Figure that one out.
It is so hard to explain this to someone who has never experienced it. Your baby has come out, everyone wants to congratulate you, you must feign excitement, because I knew the tough battle to come. I understand once a baby is out and alive, you are supposed to be excited. However, I missed the grand celebration, I missed the handout of goodies, I missed family cuddles, because of this we missed a lot.
Now what do we gain? Also a lot. We get to watch her grow. We get to watch every milestone. We get the pain of backwards milestones, but we also get the good. Every nurse in NICU will tell you, “This is a roller coaster ride.” I am going to have to come up with a different saying for them, because I like roller coasters and this is nothing like it. I am going to start calling it, freefall drop into different portions of pain. That is more like it. .
Simply look at her pictures, she is enduring a lot, but she is coming along.
I have began a fund. A fund that will go toward her care and the care of others. I will be giving these funds to other families in the NICU and to the March of Dimes Prematurity Campaigns. I am hoping to soon be an Ambassador for them so we will see where that takes me.
Like many families, we looked forward to a normal pregnancy, birth and subsequent child coming home, however, it seems like that normalcy is not going to be for us. What is abnormal is now our normal. While these aren’t the regular goo-goo ga-ga pictures you see of babies, it is of our little one. Our goo-goos come later when we get to bring her home. Yes, we have a good struggle coming up. We have a year of catching up in growth, lung maturity, and other things, but we will persevere for her, for Jonna. I am not asking you to contribute and I am not one to ever ask for help. But now I see, parents cannot stand alone and make this happen in it’s best way possible. They cannot live without doctors, nurses, family, and friends. They cannot live on little sleep, many travels, Ronald McDonald House, and still maintain a regular so-called “life”.
My life is Jonna. I will make everything I can possible for her to get better even if it tears me down. I don’t care about me. I care about her and her mother. This is my first child, I waited so long to finally see her. I cannot let her out of my site again.
This web site was created to help educate America that prematurity is not a disease, it is a temporary state. I just want it to bring my message to America. This little girl of mine would not survive in other countries, she would not have survived 25 years ago. But with American education, logic and knowledge, there is a newfound hope for parents and children. This is capable only in America! You have to love this country and you have to love your family and you have to love yourself. I hope my message comes through as one of hope, prosperity and love. I love this little girl and I hope that you will allow the shining America come through and collectively hope for the outcome to be bright.
Come back often for picture updates, story updates and thoughts.
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