Outside of my photography world, I am a wife and a mom of two extraordinary children; one of which has special needs. My world is filled with photographing stories while also living mine. I have over the past 5 years not shared a lot about my family with you all. Some of you unfortunately have learned about some of my story because I needed to reschedule a meeting due to a family emergency. Some of you have seen hospital bands on my wrists as we meet for our first consultation or while shooting a wedding; and others have seen instagram photos that peered into some really rough moments. Much of my life isn’t dramatic and I won’t deny it’s quite lovely, but there is a large corner of my life that is surrounded by hospitals and medical specialists, brain surgeries and hefty medical bills, all mixed together with a good chunk of fear.
My daughter came into this world way before she was supposed to. My pregnancy with her was classified as high risk. Before reaching the 3rd trimester, an infection started in the uterus resulting in the rush of her needing to be born to save both of our lives. After an emergency helicopter ride and 35 hours later, Emery was born at only one pound ten ounces and twelve and a half inches long.
For the next fifteen weeks she would remain in the NICU. On day three of her life she was diagnosed with severe brain hemorrhages along with an expected heart condition (a PDA Ligation needed to be preformed that day for those who are familiar). Brain bleeds are rated on a scale from 1 – 4, four being the worst. Emery unfortunately was diagnosed with a stage 4 on the right and a stage 3 on the left. No one knew how that would affect her, but it is assumed it would affect her severely. One of the greatest concerns due to the amount of damage done from the bleeds was that her body wouldn’t be able to circulate her spinal fluid. Within a week after her birth, this was detected and her first brain surgery was required.
We would find ourselves watching the food network during moments were we weren’t allowed in the NICU or during her surgeries. Watching woman like Paula Deen and Ina Garten cook up a beautiful meal was comforting; there was no additional stressful emotions that you experience while watching (except during Iron Chef, I guess). As a parent walking through all of this you don’t have much of a chance to fall apart. You keep going. You just keep going. Survival mode kicks in and you learn more about the medical field then you ever thought you would. You fight emotions because there isn’t time or energy. Your heart is in a constant ache but you don’t pay attention. Being pulled between two children, one healthy and at home knowing when your gone while the other is so fragile and doesn’t register really that you are away. You leave the hospital knowing your baby is alive that moment, but you aren’t sure they will be alive the next time you walk into that building. You witness babies in an isolette next to yours that don’t make it. They could have been 23 weeks to 37 weeks at birth; there are no guarantees.
After her first three and a half months (fifteen weeks which brought her to her due date), Emery was able to come home. She came with a new nifty oxygen tank (that was only tethered to us till she was 5 months) and a very large medical folder. She was diagnosed with a gamut of things from chronic lung disease and a suppressed immune system, to developmental delays. She would need yearly brain scans, weekly physical (and as she got older, occupational) therapy appointments, and constant eye check-ups. We didn’t know how she would develop, but we only hoped she would.
The other day Brian was sharing with someone the moment Emery smiled for the first time. She was five months old. We remember saying to ourselves, “if she can’t do anything else but this, at least we know she can feel and express joy.” Every simple milestone was HUGE for us. It took a long time for her to do much of anything on her own. Fifteen months was the first time she could sit without a human helping her. Crawling started at twenty months. Walking started a little over 3 years of age.
It has been a long road. Even without a child with special needs, raising kids is trying and difficult. She has over the past 4 years undergone fifteen surgeries, eleven of which were for her brain. She has two VP shunts to help circulate her spinal fluid and those have had to be replaced nine different times. She was also diagnosed with an extremely rare condition at age 3 that lacks much of any medical documentation of a patient surviving; Low Pressure Negative Pressure Syndrome. To be accurate, there is only mention of one individual who was diagnosed with this who ever survived. From our understanding Emery is number two. Because of how her brain is structured due to the bleeds she had at birth, certain access ways are blocked off. Her shunts help eliminate excess pressure in her head but happened to cause a siphoning effect creating a negative pressure in part of her brain; just like excess pressure, this leads to death. After 3 surgeries within 3 days, our pediatric neurosurgeon figured out a balance. We all pray she never requires an adjustment from that point forward.
Last year we found ourselves in the hospital again but this time for a completely different situation. It appeared Emery was dealing with cranial pressure build up, so we headed down to her hospital to do scans. On our way down she had her first seizure, and it was a hefty one that didn’t stop until we reached the hospital in ambulance 40 minutes later. We always knew she was at high risk for having seizures and everyone was pretty amazed this was the first time she had one. Unfortunately it was concluded she had the seizure after she was exposed to a virus. Over the past year she has had over half a dozen seizures, most of which needed medication to stop them. We don’t know if this is something that will last forever and we don’t know if this will have an end.
This past month I was asked to share the most important photo I had ever made. I knew without a doubt what photo it was. This has been apart of my world that I know many haven’t seen, but I want you to know that every photograph I create, this is what sits inside of me. This is the reason I photograph. This is the reason I believe everyone’s story matters and is worth documenting in a way that is tangible; allowing us to always look back and see where we’ve come, to see the love that surrounded us, and to see how much that love has grown. Photographs are medicine sometimes – they are supposed to nurture us in a way. To heal us.
“We don’t tell everything we know about ourselves. We tell those things that we feel have a chance poetically of fitting back into life. And that means fitting back into the feelings of other people.” – Emmet Gowin, photographer.
Emery Rain Ford. 25 wks. one day old.
family portrait at top by Sidney Morgan