“I was thirty-nine years old, and had known I was unable to get pregnant, let alone stay pregnant after repeat miscarriages. I had a wonderful happy life with my partner Chris, who had embraced the role of step-parent to Nathan who was now ten years old. I thought about having more kids, but was very content and thrilled with our family of three.
In March of 2017, I started feeling a little off. I had actually been traveling with Nathan, and just felt different. I had a nagging feeling in the back of my mind but knew I had to be nuts. I can’t get pregnant, I thought. It’s just not possible.
I remember I was at work when the nurse called. ‘You’re 7-10 weeks pregnant,’ they said. I was in total shock. I stood there, frozen in place, for several minutes. Then the fear set in. I was mentally back to the days of bedrest, emergency room visits, preterm labor and loss. If I was already seven weeks, I was close to when I usually started having trouble. I lost my first at eighteen weeks and my twins at fifteen weeks. How could I handle losing another baby? We were quickly referred to a high-risk specialist to discuss options and create a care plan to help keep our baby safe.
Every moment of pregnancy was stressful for us. I obsessed over every twinge and every ache. I was sure I was going to go into preterm labor. If I did, it would be too early to save this beautiful surprise I was carrying. I spent as much time as possible laying down with my feet up, till my first appointment with the specialist. The first couple of appointments I remember us just staring at the little heartbeat on the screen, but I couldn’t completely enjoy it because I was always worried about loss.
In my third month, things changed. ‘I don’t see any arms,’ he said. When the sonographer takes too long rubbing the wand around your belly, it feels like you’re in a vacuum. Everything goes quiet and moves in painful slow motion. The doctor said our baby didn’t have arms. I remember thinking there must be a mistake, our Nicholas was hiding somehow. After the appointment, it felt like the longest drive home. I sat in total silence as tears rolled down my face and I softly rubbed my belly. I started searching the internet for information as my heart would race. The possibilities were endless and frightening.
We didn’t know what to do, so we told family first about Nicholas’ arms. Then questions I never thought I’d have to answer started. ‘Do you think you should keep him? Can you take care of him?’ Those questions broke my heart. How could it not be right to bring this beautiful life into the world? How on earth was this baby who came to us against all odds not be meant to be here in our arms? I felt so sure that our son had a reason and a purpose to be here in this world.
Having to confront the fact that others disagreed was just as painful as reliving the loses l had lived through before. This time though, Chris and Nathan were along for the terrible ride. Was I sentencing Nicholas to a painful life? I went through times of not wanting to talk about being pregnant because I didn’t know what was going to happen. I was still scared that I would miscarry and lose Nicholas. Then on the other hand, if I was lucky enough to make it full term, then what?
I talked to Nicholas all day and night. He was the one who knew every worry and fear that came into my head. I told him to grow, and to build his arms. I rubbed my belly and felt his head through my stomach constantly. I needed that reassurance, I need to know he was there, and that he was safe.
While thinking about his arms, I was still worrying I was going to go into labor and lose him at any moment. I cried daily and felt guilty for questioning if it was the right thing to do. I was his mom, and I should have been able to protect him. I didn’t know what his life would be like; would he be happy, would he be able to be independent, would my family survive whatever was coming?
I was convinced he was just behind and I could somehow help his arms grow longer. I drank milkshakes daily, I drank calcium OJ, and I ate lots of red meat. I knew deep down that it wouldn’t help, but I had to try. I was desperate to make things okay, and to help our son.
I didn’t enjoy most of my pregnancy. I felt robbed of the happiness I should have felt during this miracle. Every single day I worried and cried for Nicholas and the future. People would say things about how fast he will grow and all that he would do, when they didn’t know about his arms. All those words felt like lies, I didn’t think they applied to me. Then there were the people that did know, and sometimes that was worse. I couldn’t stand the pity, it made me angry. My son was meant to be in my arms and here in this world. How dare you call a sweet new baby coming into the world ‘sad’. My son, my angel, the little brother to my beautiful and amazing boy Nathan. His life was not sad. ‘Oh, I’m so sorry,’ they’d say. I hated those words.
It was cold and dark going into the hospital at 5:00 a.m. for the c-section. I was so nervous walking into the ER to go to pre-op. I don’t remember talking much; Chris, my son, and I walked in silence. The moment was finally here. Against the odds, Nicholas was going to be in my arms in a few hours. I was shaking and felt nauseous, I was so scared. I hoped that somehow the weekly ultrasounds were wrong and he would have arms. People make mistakes after all, so I let myself believe that maybe it had been a mistake just for a bit.
I don’t remember actually going to the operating room, but I do remember what it was like inside. The room was cold and bright with lots of people moving around me. I was physically shaking; I was so scared. Chris snapped one picture of me as I climbed onto the table. I was half dressed sitting on the table about to get the epidural. The next picture was of our Nicholas.
He was 4lbs. 10oz and 13.5 inches long (they guessed because his legs were bent like he was doing a yoga pose). It seemed like forever between when they pulled him from my belly to when he first cried, and then longer still until they showed him to me. Millions of thoughts raced through my head about why they were making me wait. I needed to see him, right that second. I needed to see my son. I remember him being placed on my chest and touching him at last. He was beautiful and peaceful.
In the recovery room, there was no thought of his limb difference, no concern about what would happen tomorrow or the next day. We could hold him and kiss him, his dad and brother crowded around me while we nursed. It was the first time in months that I felt peace. I noticed bruises on him but the nurse told me not to worry, that it was common with newborns so I put the thought away and basked in the peace and calm of our new family. Soon it was time for Nicholas to go to the nursery and he would soon meet me again in the hospital room. I kissed our new baby boy and Chris, and that was the last time I saw them for hours. While they were in the nursery, Nicholas went into distress and was rushed to the NICU.
The next time I saw him, he was on a CPAP machine to help him breath and hooked up to wires everywhere. I was still being pushed around in a wheelchair since the c-section was only a few hours earlier. I was exhausted and ached, but I stood up to get as close as I could to him in the isolate so I could touch him. It was there that I first encountered stares from the other NICU parents. They weren’t subtle about it either. They would slow down and look, they would crane their necks till they were almost looking behind them as they walked. I was mad and I wanted to pick him up and hide him. The next time I came into the NICU there was a curtain around Nicholas’s bed. The stares must have been enough that the nurses had to hide him away.
I had been worried about what his life would hold for him, but in that moment, I was determined to ensure that my child was never going to hide away from anything or anyone. He deserved more. He fought to be here and he was meant to be in this world.
Two days later, we met our Hematologist. Nicholas had bruising when he was born because his platelets were dangerously low. Platelets help your blood clot and normally people have 150,000-450,000 platelets. Nicholas was born with only 17,000. Low platelets put him at high risk of bleeding to death or brain damage. It was a whirlwind, in addition to not having arms. Nicholas also didn’t have any knee joints and would never walk on his own. The condition he was born with is called TAR Syndrome. Part of me was relieved to have a diagnosis, but the rest of me was overwhelmed because we had never heard of TAR and there were so many different potential complications.
We finally knew what was happening. Now it was time to fight for him to have the best life possible.
Nicholas was meant to be here; we just knew it, but we felt completely unprepared. His first year was a chaotic blur and scary. We were hospitalized weekly for Gastro-intestinal bleeding from what turned out to be a dairy allergy, in addition to the low platelets.
He had a central line placed twice and weekly platelet transfusions. When we weren’t in the hospital, we were seeing at least one doctor a week in addition to Occupational and Physical Therapy appointments. We were exhausted, but the doctors and nurses we saw so often became family and we were grateful for the love they showed us.
When we first came home from the hospital, I remember some of the looks we got from strangers. My wonderful baby isn’t a science experiment, but he was stared at like an exhibit. Sometimes I would stare back and sometimes I would smile and introduce him. Occasionally people would take my invitation and ask questions, but mostly they would look horrified at being caught and look away. I remember being out with my boys and another parent kept taking sideways glances at Nicholas. I was furious, and fought the urge to walk away crying.
Being a mom to Nicholas has been frightening, to say the least. It’s been hard and it keeps me up at night worrying. I worry about him bumping his head and bleeding, about him making friends, and being happy. I am also thrilled, amazed, and more at peace than I could’ve ever imagined. I feel like I am exactly where I need to be.
I have the chance to see two amazing boys grow and become wonderful men. I’m able to watch a bond between Nathan and Nicholas grow every day, and the intense love they have for each other.
I see Nicholas shatter barriers every day, and do it with a smile. Nothing breaks him, he just keeps trying until he succeeds. He has shown doctors and people what is possible, and that different is wonderful. He has met all his milestones except walking and we are praying for a successful operation next year that will give him the opportunity to try to walk.
Our family has been blessed with purpose and a new path. We have the chance to see just how incredible life can be. We have experienced love and support from dear close friends and our community. We have also gained a new community of amazing inspiring people to learn from. There is not a moment I would ever want to imagine without both of my boys and everything that comes with having them.
Nicholas has inspired our family to launch a non-profit to support and provide education about TAR Syndrome and other rare diseases. We hope to have the foundation up and running in 2020.
These kids have unique and wonderful gifts, which we should celebrate. Different isn’t bad, different isn’t something to fear. Different is a chance to see the potential in ourselves and others.”
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This story was submitted to Love What Matters by Christina Cabral of Texas. You can follow her journey on Facebook and Instagram. Submit your own story here and be sure to subscribe to our free email newsletters for our best stories.
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