Dear William-

On August 17th, 2006 at 5:01pm, you came into this world. I had a perfectly normal term pregnancy with you just as I had with your brother and sister; no problems at all in fact I loved being pregnant! 

This pregnancy with you was considered high risk because I would be 35 when you were born. You were induced due to my pattern of big babies but you were born a healthy 7 lbs. 3 oz. There was a perfect knot in the umbilical cord but that didn’t seem to cause the doctor any concern. You began nursing right away and in fact nursed for about a year. You did start spitting up everything you ate which we just chalked up to reflux; no big deal right? Wrong.

At about 2 months of age, I noticed that you weren’t t able to hold your head up at all. I expressed my concerns to our doctor and he thought you were probably just slow to develop but recommended an MRI just to be sure. 

So at 4 months of age, you were sedated for an MRI! Dad and I were heartbroken that our tiny baby boy had to go through this but we knew we needed to see what was going on. At our follow up appointment with the neurologist, nothing was found and the doctor specifically said, “I don’t think this is progressive.” He recommended starting physical therapy which we did. After months of therapy, there was no improvement. 

At around 6 months of age we noticed some facial movements but literally thought it was constipation. In fact I remember sending Dad to Walmart late at night to get something to help you poop. Who would’ve guessed these facial movements were actually seizures?! We still didn’t have any answers at this point. 

When you were 9 months old, our family moved from Virginia to South Carolina. This move happened at a crucial point in your care. We needed to know what was going on. We saw a developmental pediatrician who did a complete work up on you and got established with a wonderful neurologist. 

The neurologist suspected it might be mitochondrial disease which we had never heard of. He referred us to a mitochondrial disease specialist in Atlanta who did a muscle biopsy on you when you were a year old. 

This is when you should’ve been walking and saying a few words and grabbing things which you were not doing. You weren’t even holding your head up! After 3 grueling months, we got the diagnosis of mitochondrial disease. I remember receiving the letter in the mail the exact day we left to go on our first trip to Disney. I remember crying on our drive. At least we knew what we were dealing with but it certainly didn’t make the pain any less. 

At 18 months, you had your second surgery; a Nissen Fundoplication where part of the stomach is wrapped around the esophagus to prevent food from coming back up. You also has a gastrostomy-tube (g-tube) placed. This surgery was done to help with your severe reflux and the g-tube was for supplemental feedings to help you gain weight. The g-tube was not going to be your only means of nutrition. Well, you decided otherwise; you completely stopped taking a bottle and eating solid foods. This was the beginning of being strictly tube fed. 

Over the next few years, you had a repeat Nissen surgery because the first one had pulled loose due to severe gagging. You also had hip surgery on both hips; hip surgery recovery is brutal! You had numerous hospital stays, many tests done and lots and lots of medication. You were always such a sweet patient. 

We did get to a point after all these surgeries that things leveled out and you were doing well for about 2 years. 

You were a true inspiration and had the best attitude despite what you were going through. You hardly cried and you made lots of happy sounds. Your brother and sister loved holding you and reading to you and pushing you in your wheelchair. Sometimes, they even argued over who got to push you. 

Your grandparents, aunts, uncles, cousins, and friends loved you so much. You had wonderful nurses caring for you and many doctors who had your best interest at heart.

In the fall of 2013, you were in and out of the hospital about 4 times due to respiratory issues, g-tube infections and urinary tract infections. In late February 2014, you took your last ride to the hospital in an ambulance. That was scary! That was by far the worst we had seen you and we were preparing to say good bye to you. That was awful. You  pulled through this though. Before we were discharged to come home, we met with the hospice coordinators to get you put on home hospice. We were tired of going to the hospital. It was a disruption to our family in so many ways. 

You were on home hospice for the last year of your life. We didn’t go to the hospital. We didn’t go to any doctor appointments. Hospice was a blessing to our family. You stayed fairly stable for that last year. The hospice team was nothing short of amazing.

In January of 2015, Dad started a new job in Georgia. The plan was to join him once your brother and sister finished the school year. We had good connections for doctors for you in Georgia and I had filled out all the paperwork to get you on Medicaid. We looked at houses that would accommodate you. You were going with us. 

It didn’t cross our minds that you weren’t. In mid-February, your nurses and I noticed that you were sleeping much more than normal. We weren’t really concerned though because you tended to sleep more in the cooler months. I called you my hibernating bear. You were literally sleeping 23 hours a day! You then started having some problems with your bodily functions. You weren’t peeing as you should; you were on a liquid diet so this shouldn’t have been a problem. You definitely weren’t pooping without the help of suppositories. 

At this point, the hospice doctor put you on Lasix which is a diuretic and would (hopefully) make you “pee like a race horse.”  Guess what? It didn’t work. You continued to not pee and started retaining fluids. We cut back on your formula intake to give your body a rest. It was pretty evident that your kidneys were shutting down and your feeds were causing more harm than good. We had to make a really hard decision.

On Friday, March 6, you had his last feeding. Like I said, feeding you was too hard on your little body. We knew this was the beginning of the end. Family and friends came to say their goodbyes over the weekend and offer us love and support. Our worst nightmare was coming true. 

On March 9 at 7:00am, you passed away peacefully surrounded by your family. 

William, you were and are a blessing and you taught us so much. Your short life of 8 years was a meaningful and fulfilling one. 

YOU WERE LOVED AND YOU LOVED WELL. 

Love-

“Greetings and thank you for boarding flight “1 Life to Flight”
I am your pilot, and we will be traveling non-stop to beautiful Peaceland.”

Son,

Something cool about Mommy you probably didn’t know is, Mommy’s a pilot.
Metaphorically.

I take on uncharted and sometimes unfamiliar territories of life with only the whimsical buildup of experimental confidence.
Hazy vision accompanied with anxious jolly demeanor, I want to fully enjoy riding the wave of life, steering deep into the abyss of the destination hoping for safe travels each time.

Each day I gear up and get prepared for smooth flights and careful landing, even though turbulence looms over quite a few trips.

I worry greatly if the passengers aboard will have enough connection to me. I don’t want the distance between the aisle and the cockpit to determine the connection. I want to get a great feel for everyone and see the smiles, the undeniable happiness of floating away to places where the sun kisses you in the morning to a frosty mountain top at night.
I often wonder will I be able to provide peace upon boarding? Can they look at me and tell my fear is great, or have rest assured we’ll all land safe.
Oh, and Son, I like to provide awesome snacks, even on days when I can’t eat. Mentally.
Mentally.
A word that has plastered itself to my name. Every day before flight Mentally and I take a brisk jog. We discuss what we learned from the last trip and areas of improvement for the upcoming one. Mentally is a friend of mine. Sometimes we have the best of times and ends in great laughter other times, mentally has me too wound up and I must go “AP” promptly.

“Auto pilot”, I really try to avoid that feature of self. I desire to live and thrive in the reality of the ride. Not be consumed by the unsteady control switch. I intend to be hands on and alert throughout entire flight. Not matter how long it takes to get through TSA, baggage claim and settling in for overnight stays in new cities.

Son, the tears you’ve seen Mommy cry are not always sad ones. There are tears of happiness, constant wars within self, proud flag planted triumphs, tears of peaceful surrender and tears of absolute joy watching you grow. I’m so incredibly thankful that I am a “pilot”.
My mental health equips me with a life jacket awareness and ultra “fight or flight” responses. I am working hard to make sure it’s a great snug fit.

I want you to know with each day, I will always give a grand effort to earn as many frequent flyer miles as possible, smile more and worry less and be positively ever changing.
Mommy is proud to suit up and land safely in the world of life. No matter the distance
I thank you for being air crafted and designed just for me and being the best copilot thus far.

Signing off,

Dear Future Child That I May Or May Not Have,

I want to be honest with you and tell you that I’m autistic. I can’t fully explain it all at once, so I’ll tell you what it is as simple as I can. It means that I extremely admire certain things and topics that most people wouldn’t. It means that my surroundings can be pure hell from the sounds that I hear to the things that I feel. It means that it might take longer for me to understand something depending on the subject. It means that I can’t always find the words that I’m looking for. It means that I’ll shut down completely if I’m pushed too far. It sounds like a terrible thing to experience, but it’s different for everyone on the autism spectrum. I wouldn’t be where I am today if I didn’t have family and friends who take the time to understand me and give me what I need.

If you’re a biological child that I will give birth to, then you’re most likely going to be autistic like me, especially if your father is my current autistic boyfriend. You are going to be confused by anything and everything as you grow up. Nothing will make sense, you will feel anxious for no reason, and your peers will tease you for being different. I’m currently fighting for a better world so that you won’t have to grow up in the same hateful world that I grew up in. I will always be there for you no matter what. You will have to be patient with me because I’d be a disabled parent trying to raise a disabled child, but I will be the mother you need. Also, you should know right away that “disabled” isn’t a dirty word. It’s totally understandable if you occasionally get frustrated and wish things were easier, but I want you to wear your autism on your sleeve as you grow up. I grew up hiding mine, and I wasn’t truly happy with myself until I was an adult. I want you to be happy and true to yourself from the moment you’re born.

If you’re a child that I’m destined to adopt, then chances are that you won’t be autistic. If you end up being neurotypical (non-autistic), then I must ask you to be patient with me. Society might view you as an “easier child to raise” because you’re nowhere on the autism spectrum, but motherhood is going to be a challenge for me no matter what kind of child I get. We’re going to have different routines to follow, and I’m going to be more stressed out than you. Even if I’m burnt out and feeling the need to crash on the couch, I will be there for you. Please understand that I’m not saying that you in particular are what is wearing me out; just about everything wears me out. I’m just going to need a few breaks every now and then as you get older so I can have the energy to do everything that you want to do.

Regardless of whether you’re biological or adopted, or even autistic or neurotypical, there are people out there who will declare that I shouldn’t be your mother. It’s sadly common for disabled mothers to have their children taken away because society doesn’t think they’re fit for the job. I may be disabled, but I’ve worked in childcare for years and I’m more than qualified to care for a child of my own. Don’t listen to them. This ableist society we live in will try to find a reason to tear us apart, so we must work together to prove them wrong. I won’t let them force you into a home that you don’t belong in. We are meant to be together.

If I do end up being your mother, then I can’t wait to meet you.

Love,

To my dearest daughter, Jade,

I want to tell you the story of how your arrival into this world was the greatest surprise our friends and family have ever known. But before I share that story, I have to explain how we got here.

When Daddy and I built our house, it was an exhausting, tiresome, emotionally draining process, and we shared our excitement with practically everyone in our lives. Someone once told us that buying a house is a test of your sanity, and that building one was even worse. It goes without saying, that they were right. We searched properties for years, continuously inspecting parcels of land, always getting our hopes up that we had found the place for our “forever” to take place, for each and every one to fall through for one reason or another. Finally, after five years of searching, we purchased the 12-acre piece of heaven that we now call home. But physically building the house was just as difficult as acquiring the land to build it on. Some days it seemed like every step was delayed, every desire was miscommunicated, and every task seemed inherently more difficult than it should have been. And without fail, almost every day following a particularly upsetting set-back, I would walk into work, or bump into a friend in a store, and they would innocently, and with the best of intentions, ask, “Hey, how’s the house coming?” Nothing knocked the wind out of me quite like that question some days. Sometimes I would answer while fighting off tears, or respond with the ever-so-phony “Oh, pretty good,” all while wishing I had never told anyone we had even considered building a house. The stress of construction really took a toll on me, which was only compounded by others’ knowledge of our struggle, and I swore that we would never be so open with our life’s plans again.

Fast-forward a whole year of living in our fantastic new home, we found out I was pregnant with you, my girl. Daddy and I were ready to begin our journey as parents, but not ready to share our excitement with anyone except each other just yet. We knew we would tell our friends and family at some point, but we were both still unsure how we felt about sharing such important and exciting news. Shortly before the end of my first trimester, the typical “safe” threshold when expectant parents share that a baby is on the way, we learned the devastating news that our friends, who were also about to give birth to their first child, had lost their beautiful baby girl at 34-weeks pregnant. We were shocked for them. We were heartbroken for them. We cried for them. As they informed their loved ones of their tremendous loss, we could not fathom the pain they were enduring, and any plans we had about protecting our peace and happiness about our baby girl, were solidified in that moment.

So, we decided to wait. We agreed to keep our joy just between us, until I couldn’t hide my growing belly any longer. We went through life as normal, waiting for the day when my clothes became too tight and my pregnant “glow” shone too brightly to be ignored. Except, here’s the wild part: For reasons I have yet to understand, that never happened. With each passing week, I would look in the mirror and be amazed that I still looked like my normal self. Some pairs of jeans were too tight, and I gained a small amount of weight, but that’s it, which my doctors reassured me was healthy and acceptable. I continued to look like my normal self until almost nine months pregnant. With the Coronavirus pandemic at its height, family holiday gatherings were postponed, so I was never in a situation where someone would be suspicious that I wasn’t enjoying my wine as I might normally be. We often say we experienced the “perfect storm” of scenarios where we could keep our girl a secret for so long.
We told a small group of people around eight and a half months pregnant, including our closest friends and family and, of course, your grandparents. (Don’t worry, we have Nana, Grandpa, Grammy & Papa’s reactions on video so we can celebrate that shocking moment forever!) I learned so much through this one-in-a-million experience. I learned what it truly feels like to put my own needs first. I learned what it means to protect someone, even though you weren’t here yet. I learned that my peace was far more valuable to me than I could have ever imagined. After you were born, we sent photos and surprise messages to the rest of our friends and extended family, and damn-near broke the internet with our first photos of you. Sharing our first moments as a family of three, after you had safely arrived into this world, became one of the greatest joys of my life.

We had a big party after you were born, and all of our friends came to meet you. This party was so important to me because I never wanted you to grow up thinking we chose not to celebrate you. We celebrated you in the quiet rejoice of healthy ultrasounds and doctor appointments with perfect heartbeat scans. We celebrated you with shopping carts filled with tiny pink clothes, since a baby girl is what Daddy and I both hoped for. We celebrated you with the surprise-of-a-lifetime announcement to your grandparents that you were coming in less than six weeks. We celebrated you by growing you in calmness, serenity, and peace, which was healthiest for me, meaning it as also healthiest for you.

You were the biggest, and teeniest, surprise of our lives, my girl. And, oh my, do we loudly celebrate you now.

I love you, Jade Vail.

With all the love in my heart,

To my unborn child,

The first love I ever knew, and first pain I was introduced to, was my mother’s. And if you ever get the chance to come through me into this world, I’ll be yours too.

Because you’ll have grown inside my womb, where you’ll have eaten what I ate and felt all that I feel. And all of my patterns, whether I want them or not, will become somatically inscribed into your genetic coding. So that even after the umbilical cord is cut, we’ll still be connected.

Even now, strangely, I feel we are connected in spirit.

Because even now, my body carries the egg that might one day become you.

Stranger still, my mom once carried us in her womb. She carried the egg that became me while she was still inside of her mother.

Though you aren’t born or even conceived, when and if you were to be, I’ll want you to know that mother is a spirit. And sometimes, a mother in her human form, for whatever reason, can’t or doesn’t always know how to embody the mother spirit. So we may, at different times in our lives, find a mother in another — person, place, or even within our own selves. Know too, that Mother Earth is all around you.

I want to be the best mother I can be, but I am scared, so I write to you in my journal.

Because one day, I might be gone, and I’ll want you to know that even then, you can always find a mother inside and step into her when you need to. You can never be without me because I am her, and she is in you.

I understand that it isn’t my responsibility to shield you from the wears and tears of life, but I do feel like it is my duty to prepare you for them as best as I can. So if any C-PTSD or abandonment wounds show up for you, here’s what you need to know.

My mom, who is your grandmother, was abandoned from the time she was a baby until she was six years old. She was raised by her aunts in a rural village in Thailand, and was breastfed by her grandmother. For the longest time, she referred to herself as “the girl with no mother.”

Upon returning to her homeland with her in 2015, I watched as those aunts that once fed and bathed her, remembered and embraced her with open arms and tear-stained cheeks. And then I knew, for the first time in my life, that she had been loved after all. Maybe not very well by the one woman who should have loved her most, nor by the man she chose to marry, but at least, well enough by those women. Enough, anyway, that she was able to love me well enough to want to gift that same love to you (with my own spin on it, of course).

But my mom, for a long time, had been disconnected from her roots, and that disconnectedness manifested physically in 2020 as colorectal cancer. Located at her root chakra, her emotions, past traumas, and hurts that were never addressed or processed rose to the surface, demanding her attention. Because the body remembers, even when the mind forgets. All this, I want you to know too.

For the last few years, I’ve been rewriting my mother’s narrative from “the girl with no mother” to “the girl with many mothers.” And I’ve noticed that as one of us heals, so does the other, and I’m hoping that it continues down the line.

In rewriting the stories she had always told herself, my siblings, and I while we were growing up, I realized that I too, could rewrite my own stories at any point in time. I didn’t need or want to abandon myself in order to be loved anymore, nor do I choose to surround myself with people who self-abandon or that emotionally abandon me.

And this lesson I’m re-learning every single day, in every relationship, including the one with myself.

If I could tell you one thing, it’d be this — I want you to choose you.

Choose you, when given the choice to wrestle someone out of their own karmic entrapment. Set yourself free and potentially inspire them to do the same.

Choose you, when faced with the dilemma of making sacrifices. Distinguish between the two by observing that offerings are given freely while sacrifices tend to be bargains in disguise, that in time, lead to resentment if the return on investment fails to arrive.

Choose you, when this world or any force within it tries to silence your voice. Your voice is powerful and each time you roar, you do so for you, for me, for your grandmother, and all others who came before.

Choose you, when your intuition guides you to your calling. If you don’t answer, it will keep ringing until you do. Any good karma I’ve been generating, I hope will be passed onto you.

Because everytime you choose to honor your truth, you become empowered. And the love that ripples from the changes you consciously make within your being, slowly but surely heals the fabric of our collective humanity’s consciousness. When you come into this world, you will have inherited ancestral gifts too, not only traumas. And if you let them, those gifts can become a reservoir of innate strength.

Choose you — because it is your life to live, and no one else can die for you.

As I write these words, I’m writing them to me too.

That might be the strangest thing about becoming an adult, let alone a parent. As soon as you think you’re ready to teach, you realize that you never stop learning.

Most of all, know that I love you always. And one day, if I’m ever ready, when the time is right, I’ll be honored to meet you.

Love,

I was hanging out with a good friend of mine the other day, and she asked me something that got me thinking. She said to me: “I’ve noticed the last couple times we hung out that you talk about the future and having kids, is that something you think about a lot?” I sat there for a minute reflecting, and then I responded; I explained to her that I do think about it in the aspect of knowing the person I want to be when I am a mother, as well as the steps I need to take in the meantime before family planning starts. She took in my response and then took the question a bit further by asking if I think I am doing everything I do now for my future children, or if I am doing all of this for myself. Quickly sifting through the thoughts as they rushed in, I realized it may seem like I am living my life for a future that could not even happen (I mean, life doesn’t always go as planned). After a short pause and a breath, I stated that I honestly feel like I am doing this for all of us. I let her know that I am working on being the parent that I wanted as a child, and there are things I know I want to do for my child(ren) that requires my current dedication to my wellbeing, both physically and mentally. I also mentioned that I would be upset if the time came to start a family and I looked back at the past couple years and didn’t see any progress towards my goals. In that regard, I like to keep that on my mind as it keeps me focused on my intentions and values.

For the past several years, I have been working on my mental health and regulating my emotions. For years I suffered with anxiety; I constantly worried about the worst-case scenarios in every part of my life, I’d often have angry outbursts that were followed by uncontrollable sobbing, and I felt like I had no control over any of my thoughts or feelings. All of this left me with a feeling of hatred toward my brain, and therefore my entire self. I would find myself “people-pleasing,” because I never wanted to let anyone down or feel like a bad friend. Behind the constant saying “yes” when I meant really meant “no,” and over-extending myself to the point of burnout, deep down I did all of these things because I just felt horrible about myself and I didn’t want anyone to see me the way I saw myself. Fortunately, with the help of my therapist and your father (he’s truly the best, I know you’ll love him so much), I have since come to realize that I am not the awful person that my anxiety tricked me into thinking I was, and I am finally learning to love every part of me, including the parts of me that I once despised.

As I have been on this journey, I have been learning about psychology and how certain events or situations can impact a young child’s brain. I have been learning about how humans coregulate with other people around them, and how important that is when a young child is growing up. I know that if I were to have had you a few years ago, in the midst of my worst anxiety attacks and self-loathing patterns, that would not have been the healthiest environment for you to be in during your early days. As I continue to work on my patience and learning about my mind, oftentimes I about you and your future. I think about you having a calm, content mother who happily lulls you to sleep and is there to comfort you in times when you feel distressed. I think about you witnessing your parents emulating the true meaning of love, and also feeling that same incredible love from us. I think about how I want you to be curious and ask questions and be confident in who you are, even in times when peers or others around you may try to influence you. I think about how there are times where you may not like me so much or I may fail you in some ways, but that I hope as an adult you will be able to understand that I am doing my best and still learning as a human being. So yes, I do think about you a lot, and I do what I do every day for you. There is a well-known quote that reads: “You can’t pour from an empty cup,” so I make an effort every day to make sure I fill my own cup first, so in the future, I can fill yours.

To my future child(ren), I love you already.