Monday, May 7, 2012

a mother's loss..

my cousin lost her baby girl after just one week of life i was saddened by her loss..i as well as everyone else am completely at a loss of what to say or one can truely understand what she is going through..when a child is lost so is a life a parent imagines.. so are the first days of school, proms, graduations, weddings..countless birthdays..

i thought of an online friend i connected with through the losses of our fathers and asked her to guest blog her story..she lost her first daughter and has recently done some amazing things in honor of her baby girl..i wanted to post this for my cousin and any other parent out there who has lost a child..i want her and others to see that though there is great pain right now.. in your own time there will be healing..below are the words of a mother who has come out of the other side..

As Mother Day approaches, I reflect back five years ago when I first became a mother. My daughter Nevaeh Grace was born at 30 weeks. Throughout my pregnancy, I experienced many complications with her, but we never expected her to be born early, further adding to her complications. At 20 weeks, we found out my little girl had Down syndrome as well as a condition called duodenal atresia. Although she would need surgery when she was born, she was expected to be healthy.

When I was 30 weeks along, I went in for a routine non-stress test. During the middle of the non-stress test, a group of doctors and nurses rushed in and started turning me on my side and putting an oxygen mask on me. I was so scared! No one was even explaining to me what was going on! They informed me that Nevaeh’s hear rate was dropping, and they were admitting me into the hospital for an emergency c-section.

My husband arrived in the nick of time to welcome our beautiful, precious, little baby girl into the world – weighing in at 2 pounds, 2 ounces. I remember I was worried because she wasn’t crying when she was born. But they held her up, and her eyes were wide open, looking straight at me. She was so calm! It was like she was telling me not to worry, everything would be ok. To the doctor’s amazement, Nevaeh did better than they expected. She was completely breathing on her own and was just on room air. I was so proud of my little girl already, and I knew that I had a fighter on my hands!

Nevaeh went through good phases and bad phases. It seemed like she would take one step forward and two steps back. On the day she was going to go in for her duodenal atresia surgery, she ended up with pneumonia. Then she got sepsis, and an infection in her PIC line.

They decided they were going to do emergency surgery to put a central line in, and for the sake of not putting her under anesthesia twice, they were going to do her duodenal surgery at the same time. I remember holding her, telling her to be strong, and that everything was going to be ok.

After surgery, they told us that they had some issues with getting Nevaeh on the ventilator. Her blood pressure had dropped to 10/5. We were just very thankful that she made it through the surgery, and could be on her way to recovery and eventually come home with us!

That night I got a call that Nevaeh’s breathing was not good. The next few days seem like a dream – or a nightmare for that sake. Because her blood pressure dropped so low, it damaged her kidneys. She wasn’t passing any urine, and was essentially filling up with fluid. Because she was so small, dialysis was not an option.

On July 11, 2006, we were called into a conference room by a social worker and told that there was nothing more they could do for our daughter. They told us she was not going to make it. We were completely devastated. Ultimately my husband and I decided not to prolong her suffering and remove her from the ventilator. It was the hardest decision I ever made in my life. I sometimes still question it. Would she have made a miraculous recovery? Did we fail her as parents by giving up on her? Were the doctors possibly wrong? It’s been five years now, and I have finally forgiven myself, and have found peace with our decision. I know it was the last thing that I did as a parent for my daughter.

As I sit here and reflect about the first time I became a mother, it’s hard not to still feel the hurt and pain that I felt. But I can honestly say I also feel peace, love, and happiness. I feel truly blessed to have Nevaeh in our lives for the short six weeks she was with us. Five years ago, I was in a really bad place. I was angry at God. I couldn’t understand what I had done so badly to deserve losing a child. I was sad and depressed. I felt like the whole world should be stopping because my child had died.

I don’t know how I made it through that first year. I guess I just woke up in the morning and took one day at a time. I was determined I was going to be strong and make it through. I was determined that losing my child was somehow going to make me a better person. I don’t exactly know when the hurt and sadness lessened up. I guess it was something that just gradually happened over time. Of course it will never completely be gone, but it is bearable now.

I decided that instead of lying down and letting the grief consume me, I was going to use it and try to help as many people as I could in memory of my daughter. Somehow, I was going to make my daughter’s legacy and memory live on.

Since my daughter’s passing, I have made a conscious effort to do several things in her memory. I always donate to our local Special Olympics in her honor. I did the Buddy Walk to benefit community programs with people who have Down syndrome (and was the top pledge earner). I also started a non-profit in memory of my daughter, where I donate care packages to the local NICU.

Although the first time I became a mother may not have ended like I expected or wanted, I still never lose sight that she was indeed my first daughter. I now have two daughters, age 4 and age 2, and I always tell them about their big sister Nevaeh. She taught me so much in her short existence: she taught me about unconditional love, about strength, about not being selfish, about being a better person. Above all, she taught me that the bond between mother and child does not end. It’s a bond that is infinite.


Thank you so much Nicole for sharing your story. Nicole's blog can be found at