Life with Spina Bifida| Spina Bifida Awareness Day 2018

It is Spina Bifida Awareness Day today on October 25th. October seems to be the month of awareness, but to me, it is a special month to remember what life is like with Spina Bifida.

I don’t really talk about this with people other than close family or friends so many people probably are not aware that my daughter has a birth defect called Spina Bifida. There is a great article on “What is SB?“ on the Spina Bifida Association Website explaining the ins and outs of Spina Bifida you can check out if you have a few minutes.

I was 24 weeks pregnant and we were living in China. I just remember me being alone in the examine room while my husband was waiting outside in the lobby, hoping to poke the technician a little bit to find out if we are having a boy or a girl (it is actually illegal in China to reveal gender during pregnancy) and then was notified that I should wait in the hall way to get a second scan by another expert because there might be something going on. Ever since that morning, all I know is that we’ve read so many documents, seen so many different doctors and done all the possible tests during a pregnancy.

The Chinese doctor said that it did not look good. Our baby might not be able to ever stand up, or walk, or read, or live a normal life. “You guys are still young and you should try again.” the doctors recommended.”Oh and remember to take folic acid next time.”

They mean well. However, they just don’t have enough experience with cases like this. The good thing was that we have access to doctors from other areas in the world. We went to an Australian doctor in the city where we were and she helped us and referred us to multiple neurosurgeons around the world to get a further diagnosis and an action plan for us. And one of the neurosurgeons actually became my daughter’s actual doctor now, which is really cool to me.

What is Spina Bifida to us? My girl’s official diagnosis is Lipomyelomeningocele, a word I still can’t remember how to spell. It means that her spine was not closed during the initial forming stage and has an opening on her spinal tube. And because of the opening, her spinal cord instead of being dangling in the spinal tube, it was stuck on the inside lump of her back and was pulled out of the spinal tube. She has a bump on her back. Because of the spinal cord being attached to a fat lump and pulled, some nerves are damaged. She had surgery when she was 6 months old. We didn’t know what nerves were damaged exactly and we still don’t know how some of her nerve-functions will be(including being potty trained and being able to walk on super sharp rocks).

I don’t usually talk about her condition mostly because when you look at her, you would not have guessed that she has Spina Bifida. Quoting her grandpa: “ The only thing that’s not really normal with her is that she started speaking way too early.” I as a parent, don’t really want to make it a big deal. I don’t think she is disabled enough for me to go around and say that I’m a special need parent. I don’t think we’ve really suffered as much as some of my friends who have real challenging special needs children. At the same time, I don’t want people to always say, oh I’m so sorry that this happened to her after knowing about it. I don’t want people to ask me “did you take folic acid last time?“ because I surely did. I don’t want people to treat her differently because now they know she is actually sort of different.

However, I think it’s a good time to actually bring it up. Mostly for me. But also for my daughter. And probably for people who might not know about some of the special conditions that come with life.

For me, I just want to say to myself—you are a good mom. You did all you could have done and you made the right decision to bring her to this world. You were not selfish because you were afraid of the pain of abortion and it is always good to respect life.

For my girl, I just want to say to her—you are different, but we are all different, one way or another. Go live your life the way you want and don’t let others dictate your life. And go make friends with people who are different from you.

For other people who might be hearing about this for the first time—please don’t feel sorry for us and don’t put a tag on special need children. See beyond their disabilities and focus on what amazing things they could achieve.

I’ve tried to channel my inner sorrow and the dark little spot associated with this. (Oh, believe me, I’m not saying that it was not hard. ) But every time when I focus on the fact that I went through the craziest pregnancy as a first time mom and there are so many uncertainties ahead of us, I just feel really down. And I simply don’t like it. When I spend too much time worrying if she will ever be totally normal or if I am doing all I can to protect her future siblings from having the same trials in life, I see myself buried in doubt and fear. I simply don’t like it.

While it’s healthy to express feelings, which I’m definitely not very good at and am working on, I think it can also be a good idea to just focus on the good, the bright, the positive.

During that pregnancy, time seemed to be frozen at times and to be flying by at other times. The crazy pregnancy definitely prepared me for any possible pregnancy tests—blood test, MRI, amniotic fluid test—come what may and I will deal with it. It also brought me ever closer to God. It was a good lesson to learn to stop asking why and instead to ask how I can do this thing. It was awesome to be able to get closer to family as well. It definitely helped my little family to hold together because it was seemingly us against world at some point. It was also really heart warming to really see how much my family cared about me even though their way of saying love at first was slightly different from how I wanted.

I’ll have to say that it was really cool when my girl beat all the odds and started crawling before her surgery. And then see her stood up by herself. Then see her running through rock piles. Then see her getting potty trained(mostly). And of course, it is just cool to hear her talk like a champion in both Chinese and English. I try not to be too prideful and brag too much but it is really the best thing to see your baby grow and be strong. It is also a great confirmation to me that I made the right decision back then to keep going.

Having a kid who needs special medical attention is also a very humbling experience for me. It reminds me that we all have weaknesses and how little we know. I have to trust her medical team. It’s also a great opportunity for me to practice my patience. I can remind myself that she might never be able to do certain things as fast even though she could speak faster than I could sometimes. It has also helped me to not taken things for granted and also to not over think. Not saying that I absolutely don’t actively parent all her behaviors, but I sometimes do look at her and say, hey, this might be just a three years old being a three years old, or there might be actually something going on developmentally in her brain and we will figure it out in its due time.

So, if you are friends of mine. Yup, that happened. And we are glad to have our perfect little girl in our lives.

If you are pregnant and are struggling with a diagnosis of a birth defect—you are not alone! There are amazing communities out there. Talk to other people who have gone through similar situations. No matter which country you are in, there is help and hope. And I’m here if you ever need someone to talk to :)

If you are a new mom or a woman who is thinking about getting pregnant but is scared of things going wrong during pregnancy—It’s totally normal. I had this gut feeling before I found out about it actually and I sometimes think if I actually jinxed it. But it’s also ok to just let go and go for it. Things happen and that is just part of life. Embrace the uncertainty and it can be an empowering experience if you let it to be that way.

If you are someone who just learned a new word today. Yay! You are better than I was. I didn’t know until I saw it on my ultrasound paper. Good for you!

There are so much I could say about life with Spina Bifida but I don’t think there is any better way of showing what life is like than living it!

So here is my little girl who has Spina Bifida and also someone who is extremely talented with language, who is absolutely creative, who is definitely full of life. And now, hopefully, you are aware that there is a birth defect called Spina Bifida and it does not define the capacity of someone’s life!

Thank you for reading! <3

The Long Awaited Family Photo| Mesa Family Photographer

Two weeks before Christmas in 2016, I offered to take some family photos for my in-laws so they can send out Christmas cards with nice photos. We were going to take photos on Saturday but my mother-in-law unexpectedly ended up in the hospital that Friday and was diagnosed with Congestive Heart Failure. Three days after that, her heart surgeon brought us the shocking news that mom's heart was so weak that a heart transplant is the only possible cure. Mom was transferred to Mayo Clinic right away and soon after that she went through an open heart surgery to install a heart pump (LVAD) to sustain her life winning her some time to wait for a heart transplant. Due to some complications, she was under sedation for many weeks and went through 8 operations within that period of time. During her hospital stay she had lots of ups and downs, sometimes even on an hourly basis. There were many times when we didn’t know if she would be able to make it.

I was 8 months pregnant with my baby boy when my mother-in-law was admitted. We kept telling mom that she would see her new grandson soon and we even joked that we are depending on her to take care of our new baby!

With many prayers and her strong will to survive, she was able to recover from her open heart surgery faster than all the doctors had expected and came home in April. My son was born in March so we were very happy that grandma got the chance to see him.

My mother-in-law was able to come back home in April to continue her recovery journey but it is far from an easy one. Gaining back her strength and getting used to this new life with a big device connected to the heart is challenging. Special diets are required. Staying healthy in general is top priority. I was with a brand new baby and I was helping her with cooking her special meals, medicine administerings and many other little details. It's safe to say that the whole family is a little bit overwhelmed with all the new norms and all the uncertainties. No one had the spare energy to think about photos at the moment. I made sure to keep the traditions of a monthly photo for my baby boy but that's about it. 

Now I look back on that period of time, I wish I could have picked up my camera more. I wish I could have documented the first step my mother-in-law took without a walker. I wish I could have documented my crazy grocery trips shopping for three kinds of dietary needs in one family. I wish I could have documented how my little baby gave his grandma much needed cheers and joy every evening when she was depressed about the dark night.  It was a very difficult but special time. Even though it was not a beautiful time in our lives if not the darkest time, all the struggles and trials we faced together made us closer than ever as a family. All the miracles we witnessed along the way made us ever more grateful for the time we have together as a family. 

Life goes by fast especially when life is busy. Christmas 2017 came along quickly. This time, I made sure that I get a nice family photo. Maybe with my mother-in-law's health condition, it is more urgent for us to make sure that we have photos together as a family because we don't know how much longer we will have with her. However, this is true for everyone. Life is too short. Life happens. I know this sounds cliche, but memories will fade away unless they are documented. I'll have to say, I was very happy that I got to keep my promise after all to take some nice photos for my family.