“I was the first one to notice Cosmo had albinism although I didn’t know that was the correct term. I just knew ‘albino.’ Aside from myself and an African-American nurse, everyone present at his birth was Caucasian and busy going nuts about his ‘blond’ hair.
But his hair looked white to me, and his eyes, although I knew that newborns can have very dark eyes, his looked a deep garnet red. I was fascinated. And also confused!
He looked other worldly, like a magical being. I thought, ‘WOW!!! Am I the chosen one?’ Then I quickly told myself, to get over myself! My husband and I had joked throughout my pregnancy that we were having the next John Connor (after the liberator of humanity in the ‘Terminator’ movies) but I reminded myself that I’m just a regular woman who had a baby, not the Virgin Mary or Sarah Connor!
The entire labor experience was all a shock to me. Cosmo was a long time coming. He was my fourth pregnancy, after miscarrying 3 times. When I found out I was pregnant with him I just knew he was the ONE. This is why we nicknamed him John Connor, because he defied the odds and the specialists who had told me it was time to give up on conceiving naturally. Not that I didn’t spend most of my pregnancy with my hands stuck to my belly, waiting to count kicks and hiccups. Those little cute hiccups and somersaults are cherished memories.
In fact, I wanted to stay pregnant forever as my first OBGYN scared me senselessly. Due to my history, she had me booked in for a C-section at 12 weeks without consulting me. She made up her mind that would be best for me for later on when it was time to deliver. She and another specialist warned me not go through with a vaginal delivery; that Cosmo wasn’t strong enough to make it, that his head was too big, that my placenta had calcified, that he was going to be low gestational weight, that I was a geriatric mother, blah blah blah! They really did terrify me, but something deep down told me that Cosmo and I would be fine, and that we would make a great team (Team vagina!)
I’d waited so long for my baby I wanted to do it au naturel and feel the power of womanhood.
The did have one point, Cosmo was breech up until 37 weeks so after lots of research I found a very cool OBGYN who fully supported my natural choice. He flipped Cosmo with his bare hands, the most excruciating pain ever – it felt like a burning fireball, but Cosmo was happily kicking right after with a good heartrate so I knew I had a little rock star in there. My new OBGYN teased us about our imaginary candle-scented music-playing birth plan, letting me know that if anything went wrong, he was boss. We are so grateful to him.
My grandmother was a well-respected mid-wife in Cameroon, Africa, who birthed more than 1,000 babies and flipped a few in her time, so I knew that if she was still alive she would never let me have a C-section unless it was absolutely necessary.
Labor was a beautiful experience for us, and it was all down to my incredible husband (slash Doula!)
Because of my determination to have a natural birth, we’d been to hypnobirthing classes and he was super ready. He didn’t leave my side for the entire 14 hours, remaining connected to me and everything that was going on. Talking to me, reminding me how to breathe and kissing me. The hospital team knew what we wanted and let us get on with it, only checking in every couple of hours or so.
It wasn’t exactly as we’d planned, I had absolutely no interest in the bathtub I’d insisted on, no interest in the delicious food he’d packed, I only let him leave my side for exactly 2 minutes (or rather I kicked him out) to eat a sandwich because my heightened senses made that sandwich smell detestable! When it got close to 14 hours, I started looking at the clock, thinking I’m not sure I can keep going. So the nurse and I had a bet that Cosmo would be out by 7 p.m.
My husband was doing his best, but I was starting to doubt the whole hypnobirthing thing and asked for the drugs. I could not believe he said no! What?? So, then I asked for the nurse, who also point blank refused saying, ‘but you’ve come this far…’
I begged, I yelled but they both said no. Since they were now my frenemies, I decided to call my hypnobirthing teacher. I thought, ‘HA she’s gonna tell you what to do!’ I called her up mid-contraction and complained that nobody was willing to give me any pain relief and could she believe these people?
Being so skilled and amazing, she just talked me through some breathing and I got through it. I’d completely forgotten about the transition phase!
Suddenly I was extremely hot, and then came the big push! While Cosmo was crowning, my OBGYN stopped attending to me and looked at my husband to say, ‘WOW, check out the hair!! Does anyone in your family have blond hair?’ Deep in pushing, I yelled back at him, ‘Can we have this conversation later?’
When Cosmo was brought to my arms, I paused for a couple seconds, just to watch and hear his spectacular newborn cries. I was so happy he was screaming so loudly. And thriving! He scored a big fat 10 on his Apgar test. There had been so many demons in my head throughout my pregnancy because of what my previous doctors had said. I knew he’d be fine, but the image of him coming out and not crying and all the doctors and nurses panicking and rushing around with elaborate equipment always played in my head. I held him and thought, ‘You cry little angel, loud and hard!’
After holding him for 20 minutes I was semi-certain he was albino and had been waiting for one of the doctors or nurses to say something. I then realized they may not know, so I asked, ‘Does anyone think he might be albino?’ They all looked at me. They weren’t all sure, being 1 in 17,000, they had never seen a baby with albinism. My lovely African American nurse nodded her head at me and smiled. We also had to wait until his jaundice cleared up, he was golden at that time!
And then he was the star of the ward. So many nurses came in with lots of excuses about things they had to do, but we knew all they really wanted to do was look at Cosmo!
Before we went to the genetics center, we went to see a wonderful Ophthalmologist when Cosmo was 8 weeks old. He had 40 years of experience with children with albinism. We had noticed that Cosmo’s eyes were roaming, and I was worried that we hadn’t had eye contact yet.
The Ophthalmologist said, ‘Yes! He has made eye contact with you, you just haven’t noticed it! And the eye movement, that’s called Nystagmus. It’s going to bother you a lot more than it bothers him.’ He explained clearly how albinism affects eyesight and what the potential outcomes could be, but right no, nothing is conclusive, and we agreed with his preference to just monitor Cosmo for the time being.
It’s this type no nonsense, positive and refreshing outlook that has de-dramatized things for us. Our first pediatrician couldn’t even say albino without her voice going wobbly, while suggesting a gloomy future, so we switched to another that speaks freely and openly. Our Ophthalmologist made us think about how people are uncomfortable with differences, which actually might not be an issue for Cosmo. This is ours and Cosmo’s normal.
There have been comments from friends:
‘Are you sad that he doesn’t look like you?’ – I wonder if they’d ask all mixed-race parents that question?
‘Aww, he has to wear sunglasses.’ –Um yes, this is Los Angeles and he only wears them outside, not at home!
‘Is it something you did during your pregnancy to cause it?’ – That’s a hard one to politely respond to, but no one really knows about recessive genes so I’m happy to give a quick biology class. Neither myself nor my husband knew beforehand that we carried the gene, there was not a relative we knew of on either side who had albinism.
Comments from strangers are mostly pure curiosity. We understand that he is rare, so we’re getting used to being stopped to discuss his hair and eye color, which can look violet in some lighting. So far everyone is really nice, I’ve only had a couple of odd comments. Where I do have concerns at times is with older kids who point and ask me why he’s so pale. That’s when I fast-forward into the future and try and imagine what school will be like for Cosmo. I usually give them the science and after that they’re in awe, so I’m reminded that kids sometimes just simply want to know why? I’m not saying we predict a breezy school life, but we will do our best to provide Cosmo with all the tools to become a competent young person who will be able to confidently navigate through the society of his time.
For our small family, Cosmo is completely normal. he’s our only child therefore we don’t have another context to compare him to. We hope people will embrace our outlook, leave comparisons at the front door and celebrate individuality for the beauty that it is.”
This story was submitted to Love What Matters by Cosmo’s mom, Leena Similu, of Los Angeles. You can follow Cosmo’s journey on Instagram. Do you have a similar experience? We’d love to hear your journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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