This story I was so eager to share with everyone! I Have been following this momma for a couple months through my blogging groups, and she really inspired me. I thought my life as a mom was hard since I have been doing it all alone since before I had my son, but this mom.. this mom truly knows the struggle. After reading her blog posts, following her social media, and now truly understanding her story, I had to share it with you! I wanted to inspire you and let you know that everything will be okay. This mom and her family prove that even when you think the worst your life could be, beautiful things will still happen, and everything will be okay. I am truly honored to have been able to have this guest post on my site. Now you will read the struggles of having a daughter that had to have a prosthetic eye within 27 hours of being born.
Life Is Beautiful
Life is beautiful. It may be crazy, stressful, and exhausting… but it is still beautiful. I have people question how I can be so optimistic? I don’t understand why they are not! Yes, I may have some different challenges in life but I believe that it is all about how you approach those challenges. When I look at my whole picture, I have a beautiful family, with 2 amazing daughters, and a husband who is an awesome partner. However, as optimistic as I am, I am not here to go on about how life is amazing. I am going to share my story of how I got here.
At the age of 33, I thought that I would never get pregnant. We had actually begun discussing adoption since we were apparently having issues getting pregnant. We had not been trying for a full year so we could not see a doctor regarding infertility. Finally, it happened! I was pregnant with my first bio child. We would be able to give our oldest a sibling and grow our family. Pregnancy was not a piece of cake. I am a miserable pregnant woman. I also had gestational diabetes and was on bed rest for five weeks. Five long, slow, never-ending weeks. Scarlett tried to make her appearance at 32 weeks, but we were able to persuade her to hang out until almost 37 with some medication to keep the contractions at bay.
Despite being totally uncomfortable, childbirth was beautiful. When they laid her on my chest, it was love at first sight. However, after our kangaroo care was over, they gave her a bath, handed her back to me, and both of us noticed her right eye looked off.
Now, I am not going to go into all the details, but Scarlett ended up in the NICU with pulmonary hypertension at 27 hours old and stayed in the NICU for 6 days. By the time she graduated from the NICU at one week old, we had a diagnosis for her right eye. Even with everything else going on, we persisted in asking about her eye and why she was not opening it. We were repeatedly told that it was “birth trauma.” Long story a little shorter, Scarlett was diagnosed with three congenital eye conditions: Persistent Fetal Vasculature, Microphthalmia, and a Cataract. Big words I know! I had to google two of the three to see exactly what they were. Basically, she has an eye that did not fully develop in the womb, it is also very small (it will not get any bigger than it currently is), and because of these conditions, she is blind in her right eye and will require a prosthetic eye.
Our new normal.
As of today, we have fought the first battle in getting better coverage for her clear prosthetics. After our insurance company deemed them not medically necessary, we appealed of course. These clear prosthetics that she had to get every four to five weeks, not only helped her eyelids grow and are functional but they also helped her eye orbits grow. See, if your eye orbit doesn’t grow, then your face becomes asymmetrical. We filed appeals, submitted letters from her doctors, and filed second appeals. We also made phone calls and finally, after a few months, we won. Before we won, they were paying less than our state’s Medicaid coverage for the procedure but we got them to up what they would cover. This brings us to where we are now. The battle we are gearing up for. Her painted prosthetic eye (the one that looks like her other eye) will be deemed cosmetic. So, we are expecting it already and gearing up for battle number two. It’s going to be harder this time. This procedure is much more expensive.
This fight is going to be the hardest one yet.
Harder than everything that has come before, from bed rest through her first clear prosthetic.
Yet, we will not give up.
Despite all of that, life is beautiful. You have to look at your journey as a whole and realize that the things that stress you out today… may make you look back and laugh at yourself in a few years. I know that I have had a chuckle over a few things that have happened since Scarlett’s birth. I choose to stay positive. Well, I try to. I am only human and we all have bad days. When you come across a challenge in your life that you think will break you, stop and take a breath. Remember, life is beautiful and you will find your way through.
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