I probably read the ‘What to expect’ book a million times, but it never told me this could happen. It never once prepared me for this. It never once told me that your child could be born with a number of health problems, but there is no test, and you won’t find out until they are born. Even after doing genetic testing and weekly ultrasounds they didn’t see a single thing other than the blockage that was in her kidneys spotted at 24weeks and a lung mass that thankfully went away before she was born.

Three days after she was born, she was from what I was told by her genetics team, the youngest child at the time to ever be diagnosed with Schinzel-Giedion Syndrome – something I have never heard of and something that sounds so scary when you look it up. It had me on my knees crying and screaming at God “Why would you do this to my baby?!”.

I had flashes of the life I imagined for her come across my mind and that made me so angry. I was looking forward to all these things we would do. I cry every time I see a little girl walking around and talking, as I think she may well never do that. All those big father-daughter moments just ripped away, and why? She didn’t ask for this. Just thinking these thoughts makes me feel terrible. 

After I began to catch my breath, I began to think, I don’t care if she never talks, we will find our own special way to communicate. What if she never walks, well I will wheel her around and we will all take turns. We won’t let those things stop us from loving on her and making the best memories and giving her a beautiful life. Even in her struggle we will make sure she also has beauty to admire and happiness to fill her heart.

I will write out a bucket list and we will complete everything on it because creating these memories are so important! 

I grieved and it hurt but I also began to feel like I was getting better. She was doing so good, and I had so much hope. I thought “We can do this; we can get through this”. But then at only three weeks old we got devastating news just as we were days away from going home.

We were out to lunch, my husband had to basically rip me away from her hospital room I was so afraid to leave her, but I did, and I looked at my phone the entire time. I felt nervous when my phone rang my body shook with fear. I got a call that oncology wanted to speak with us about her results from her pathology report. My husband wasn’t worried because they had told us they were successful in the removal of her teratoma, but I felt like something was wrong, I was crippled with fear, I just knew something wasn’t right. They didn’t tell us much, just that they had seen something, but oncology would be here the next day to discuss it further and we may not be able to leave hospital as planned on Monday.

My heart sank, I cried “I want to take her home now”, so the nurse called the doctor, and she tried to calm me. I told her we know what’s going on so let us take her home, she needs to meet her family. They knew how important this was to me so they said they would do everything they could to get us home on our planned day.

The next day oncology came in the early afternoon they told me what they found and threw all these medical terms at me. At the time I could barely comprehend because fear had taken me over. I felt like I was living in a nightmare. They didn’t say the words, so I interrupted; “so are you telling me my daughter has cancer”, and they said “yes, I’m sorry but your daughter has cancer”.

Ugh! The worst sentence I have ever heard. I clenched my fists, and I did everything I could to hold back my tears. After hearing that I just nodded my head because I couldn’t bear to say a word, as I knew I would cry uncontrollably. When they left the room, I had one doctor wait and hug me so tightly and cry with me.

I had just found out three weeks ago that my daughter had a terminal disease, now cancer. Why? Why was this happening? It seemed so unreal. Finding all this out in just three weeks was not easy on us. I feared telling our four other children. How would they react, would they even understand? I barely understood myself. Another doctor came and walked me to the chapel because I felt instead of throwing things or punching a wall, I needed to pray. So, I did, I prayed hard.

We were able to go home on the Monday as planned. She finally got to meet her sisters and brothers and grandparents. It was the happiest moment. There was so much love in that room on that day.

Nymeria is two years old now. In the past two years she has beaten cancer, been diagnosed with epilepsy, is now G-Tube dependent due to aspiration. She has had tubes put in to make hearing easier for her after she was diagnosed with severe hearing loss. Thankfully it’s now only mild. She has had pneumonia a total of three times. The last time she went into respiratory failure, and we almost lost her. That was the most painful morning of my life.

But through it all she has remained brave. She is so little, and she is fighting the biggest battle of her life. She is truly the strongest person I know! Nymeria faces many battles, yet she still remains so incredibly happy – her smile alone could light up the darkest room. 

Yes, she is ultra rare. Yes, she is fighting big battles. And yes, it’s hard to watch. But I will never let her diagnosis define her, as she is so much more than that. She is brave, she is strong, she is beautiful, and she is a fierce warrior princess! 

I haven’t given up hope and I never will. She is our miracle child picked from heaven, sent here to teach us something I have fully yet to understand. But so far, she has taught me about patience, true undeniable love, and that moments no matter how big or small need to be cherished. Even though I was angry with God, I need to let go and trust that he will continue to heal and protect my child as he did while she was in my womb, as long as I just continue to have faith.

When you have a ultra rare child, hope is the air you breathe, and life is a daily gift. 

-Ashley Babcock (Nymeria’s mom)

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