One Little Dress, two countries, 6 states and 8 photographers. We each had a week to create what speaks to our heart and now it’s time to reveal how creativity works magic with each individual differently. This is Amy Dangerfield’s journey with the Little Traveling Dress Project in 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
There has been some big controversy in the photography world lately. This whole situation with childhood made me think really hard.
As adults, we look back to our childhood and all kinds of memories come up-- the sweet ones and the nightmares. It's healthy to face both and to recognize both. Growth comes after pain and acknowledging pain is half of the work to success. Don't deny your past. Don't try and hide your childhood.
With that being said though, when it's our time to teach our children, it's our responsibility as adults to choose which part of childhood to focus on.
I always feel that there is enough sadness and negativity in this world so I would prefer to focus on the bright side. Have those bright little joyful moments be my light. To remind me that there is goodness in the world. There is hope.
As an artist or public figure, we have the blessing to be in front of so many people each day, including so many children. We can create something to speak to people's hearts. However, with great blessing comes great responsibility. We need to choose wisely. What we create. What we focus on. What we glamorize.
"Train up a child in the way he should go: and when he is old, he will not depart from it." Proverbs 22:6
If I ever get to glamorize childhood, I would love to glamorize the simple joy we feel as little children. That magic of being a child. Childhood needs to be celebrated instead of being rushed through.
My kids don't usually dress up even though they may very well be the cutest kids when they do dress up. I don't want to go through the hassle of cleaning their nice outfits. I don't want them to focus on their appearance too much. I don't need to spend too much money on things that don't really matter. However, this week, I decided to have my girl in this really nice brand new outfit and went on our trip up north to Payson into the woods. Why? Just because.
Just because I want to show that dancing in the woods is cool. Kicking dirt and jumping off a little tree trunk is fun. Finding a huge pinecone the size of your face is absolutely amazing. These are the things kids should be doing. And this is what we need to celebrate and glamorize. These are appropriate for little children.
I may not be the most experienced photographer. I may not be someone who can stir the whole industry. However, I do hope that I can make tiny waves in little girls' hearts when they look back at the photos and think to themselves look, that was me. I was beautiful and I had fun as a kid. That, is enough to me. That, is glamorous to me.
As always, thank you for reading. Enjoy our little girl having fun in the woods for the very first time.
I found out a while ago that World Breastfeeding Week is celebrated August 1-7 each year encourage breastfeeding and improve the health of babies around the world.
I was visiting with some of my family members the other day. My son came to me being cranky so I picked him up and nursed him while keep chatting. My mother-in-law who was sitting across the living room looked a little surprised. I nodded and said--yeah, I'm still nursing him. Then us three moms had a great conversation about our breastfeeding journeys.
"Breastfeeding--Foundation of Life"
We hear about breastfeeding a lot. We hear that it's great for babies. We hear that it's amazing how female body works. We hear that we should encourage breastfeeding. But there's actually so much more we don't talk about. Breastfeeding means differently for each mom but ultimately, breastfeeding becomes part of the story of motherhood. The good, the bad, the pretty, the ugly. All honest and raw.
I'm Amy. I'm a breastfeeding Mom.
When I was pregnant with my girl, we were living in China, where every mom seems to be feeding babies formula because mom needs to go back to work after the maternity leave. I remember all too well standing in front of shelves of formula in the store, feeling extremely anxious--the formula is expensive; the bottles are expensive; I don't know what kind would be the best. With my girl having a birth defect, after being scared by the recommendation of termination of the pregnancy, we were also preparing to need to save millions of dollars for her medical expenses. All these preparation for motherhood is just stressful. Luckily, I have my husband. He firmly told me--you will do fine. You will breastfeed. We will be just fine! We won't need to buy formula or bottles. Our girl will be alright. So I was determined that I'm not going to buy bottles. I'm going to breastfeed.
Due to my girl's birth defect, she was taken to NICU right away. The nurse was really nice to let me kiss my girl before she was wrapped up and sent to a different floor. In China, parents are not allowed to be in the NICU. Technically speaking, you can go talk to the nurse about your child's situation every afternoon at 3pm. So I took a nap and started to try and pump some milk preparing for breastfeeding when my girl could come back. It's the weirdest feeling--I just had a baby but my baby was not with me but I was pumping milk.
After 10 hours, my husband being an American, said "this is ridiculous. I am going to go get her back!" So there he went. A tall Mandarin-speaking white guy went alone to NICU and got our baby girl back magically. My baby girl was picked up by her daddy and put in my arm. She wanted to nurse right away. My baby girl nursed for the first time 10 hours after she was born. That was the longest 10 hours in my life. Holding her in my arms and feeling her little mouth connected to me made me realize that she is alive, perfectly alive. I didn't lose her. I'm sustaining her life. And I'm now a mom.
So here began my breastfeeding journey.
You would probably think that with such a strong motivation and connection, breastfeeding would be a piece of cake for me. Oh no. Oh no.
With stitches, it took me at least a month before I could sit comfortably let alone holding a baby. But if I lie down and nurse, I couldn't see how she latched and I wasn't able to get a good feeding. Because she was not latched very well, she was sucking extremely hard and I was bleeding like crazy on my nipples. For the first month and half, I was feeling pain after pain after pain all over the places but I was on a new-mom high so I carried through. My mom helped us for the first 2 weeks and my husband was working at home so it was really helpful that I was able to feed the baby and then run to the farmers market without worrying about my baby and come back just in time to feed her again.
Then, sleep deprivation kicked in. I was all a sudden SO TIRED. I was the only one who can feed the baby and my baby just wanted to be eating constantly. Of course, I didn't know that for the first while, babies grow so much and they eat so much. I just felt like I lost myself. I fed the baby, grocery shopped, fed the baby again, cooked, fed the baby again, cleaned, fed the baby again, cooked again, fed the baby again...I felt like a machine. I hated it. I just wanted my baby to sleep! And each time I was awake in the middle of the night, I wanted to wake up my husband just so he could feel how tired I was. Eventually, we worked out a good system where my husband would wear the baby wrap and wrap our girl on him and let me take a two hour nap. That saved me. Also I talked to other nursing moms and found out that we were all the same. I was not the only one who was sleep deprived. I was not the only one who's kid is nursing constantly. I was not the only one who struggles.
Breastfeeding is amazing. Breastfeeding is sustaining my baby's life. Breastfeeding was the gentle reminder for me everyday that my baby girl is alive. However, it was hard. It can be stressful. I needed a lot of support to be able to do it! It was not a piece of cake.
I nursed my girl till I was pregnant with my boy. My milk dried up. One day, I stopped offering. She didn't ask for it. That was the end of my first time breastfeeding.
I've done it once. It should be easy for the second time, right?
My boy came along. I had milk come in right away. I knew how he's supposed to latch this time. I know that I need to drink plenty of water. I know that I will be sleep deprived. I'm prepared.
Until I realize that one thing I really miss about having only one child is that I could sleep when she slept. Now, I'm still sleep deprived from my second breastfeeding baby but my oldest is almost constantly needing my attention. I can't leave her alone in the house without watching her. I can't keep up with the energy either. And sometimes what seems worse this time around is that my girl would get jealous that her baby brother gets mama all the time and she would throw a fit or she would interrupt. It's no longer a peaceful bonding time for me to nurse my baby boy.
Also this time, I found out later that when my boy is teething, he likes to use me as his teething toy. Ouch. Or he would be distracted by his sister in the other room and try to watch while still latching. Looking at my boy's chub chub, I shouldn't worry about how much he has eaten but when he doesn't nurse well because of all the distraction, I worry. Till this day, I still feel bad if he missed his bed time nursing.
It took me by surprise that my mother guilt is extremely strong when I have to feed my baby and I have to send my oldest girl to the living room to "just do something by yourself". She used to be the one I breastfed and holding so close to me all the time. Now all a sudden she seems to be such a grown up.
Breastfeeding itself this time with my boy is not as hard I feel. Probably I now have more knowledge and more experience so I'm more mentally prepared. I'm glad that I could have so much support from my husband and a community of nursing moms helping me to understand that it's all so normal that it can be hard. And also, I can do it!
These struggles are all so real but not many people would tell an expecting mom that hey, breastfeeding is awesome but it's actually REALLY HARD, so prepare for it! Also, I feel that we need more willing people to help breastfeeding moms--take the older kids out for a walk so mom can take a nap; offer to hold the new baby when the baby is not nursing so mom can spend some quality time with the older siblings.
I love breastfeeding. It's beautiful. It's literally the foundation of life. My journey continues.
It's also hard. It's emotional. It could be something that drains the fountain of a mom's life.
We should encourage moms to breastfeed. We also should help and build a community to really support moms who want to breastfeed but facing all these struggles I've gone through.
We need to let new moms know that it's hard but it's worth the effort AND we are here to help! Reach out, and ask for help if needed. Let's ease each other's burden a little bit so more moms can enjoy the beauty of breastfeeding and provide the foundation of life to their babies!
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.