Representation is portrayal, and we are all actors writing and rehearsing scripts. We commit to characters or even just characteristics. We are imposters until we’re able to depict these things effortlessly. With the right amount of practice, passion and intention- representation is an art, it’s powerful. It’s a message we give or a picture we paint. It’s a responsibility that is not to be taken lightly. It requires dedication and integrity in the moments where circumstances are unfavorable.
Four years ago, I found myself in a nasty custody battle. I had been physically abused for five years and had finally decided that starting over with nothing was better than staying in a toxic situation. My son was four at the time, and he was terrified. I had accepted my fate, that one day his dad would just kill me. But seeing my son physically shaken and living in fear in his own home is what drove me to leave. He deserved better. I decided I’m not going to be the mom that raises my son in an unhealthy environment just to be able to say we don’t have a broken home. I’m not going to normalize these abusive behaviors and continue the cycle. I am a better mom than that. I will do better.
At our first hearing I wanted to be as fair as possible. I was advised to be fair because the system doesn’t care if you are abused, as long as the child is not abused physically. My mistake was not fighting. My son was terrified when he had to leave with the person that he was supposed to call his father. He was harassed and terrorized and even neglected some days. I went back to court and asked to amend our order. Even with him telling the judge he didn’t want to exercise his parental rights; the judge forced us to continue on with our shared custody. Every other weekend. He made it clear that he did not want to be a parent because I “chose to be a single mom.” As much as I wanted to lose my character, I had to bite my tongue and conform to the systems standard that “every parent has to be involved because they have rights.” See, the system loves to force these standards on us, but they fail to go below the surface. They also don’t enforce them. That’s why one parent can make excuses and owe thousands in child support while the other has to figure it out without missing a beat. That’s why the system thinks an online parenting class is going to give a parent the mental and emotional capacity to raise healthy children. Failing to take advantage of his every other weekend became a consistent blessing, and issue. Sometimes weeks would go by, and our lives would be peaceful. Others, we were harassed by drunken phone calls, aggression and stalking. If I’d let the order be, he had an opening to remain inconsistent and show up whenever he was bored with his life. Claiming he was sorry and that he wanted to “try” to be a good parent. I made the mistake of suggesting things he could do to bond with my son and in his twisted corrupt mind he used that to try and control me. He knew it’d hurt me to have to make excuses for him, because all I wanted was for my son to have two parents. He’d purposely mistreat or ignore my son for attention. He’d tell me, “Well you’re the one who wants me to have a bond with him. Try harder.” Even thinking about it makes me skin crawl. The world is infested with people like this, but I refused to allow my son to carry on that trait.
At our third hearing, I finally lost it. I was representing myself, and my son. I needed to advocate for him and his well-being. He did not deserve to be treated as a game, he is much too important and his health too valuable. Doing my best to hold back tears and keep my vocabulary decent, I told the judge, “You want me to continue to give him chances at being a parent when we have been in and out of this court room for the last year. My son is four, it does not take four years to be an active parent. I don’t get to make excuses, I have primary custody and I do not ever make excuses, nor can I rely on him to assist in anything regarding my son. He is not consistent because he doesn’t care to be. He can deny the abuse all he wants, I’m not here to get justice for myself. I’m here because I have my son’s best interest at heart and it’s clear you do not. All this evidence in front of you is to show you that I have tried. I’m damaging my son in the process and I’m damaging his trust in me because I am who keeps him safe. What kind of a mother would I be to continue to let this go on? He doesn’t care to be a parent, he’s here only to make my life miserable because he’s upset, he no longer has a punching bag. I promise you I will be back here in a few months because this is not a game to me. I will keep coming back because my son is not safe with him, and he is not comfortable. I will not normalize for him to always live in survival mode, paranoid about what is going to happen to him. I will withhold him because I have valid concerns and it’s my right to defend them here in court.”
In every moment, I represented myself and my son. Although I knew that in the judges’ eyes, I represented just another case in family court. I represented “bitter” baby mommas. In that court room, I was a victim that “clearly suffered from delusions and was projecting them onto my son.” I was dramatic, I needed help, I was stupid for being in a relationship like that to begin with. I was another teen parent who didn’t know what the hell to do. And I was not going to let any of those discourage me. I needed to fight because children deserve happy and healthy lives. Thankfully, my argument was taken into consideration, I was granted sole physical custody.
I realize now that my reason for fighting so hard was because I know what it’s like to be a child in a similar situation. I was only a year old when I was removed from my parents and placed in the system. Even years after the adoption was finalized, did anyone care to look into the life of this little girl who had been ripped away from the life she knew? Who didn’t understand why she couldn’t see her mommy and daddy every day? Sure, they investigated to make sure the new home would be safe. It looked good on paper, roof over my head, clean clothes, three meals. There is so much more that goes into raising a child. Especially a child that has been through something traumatic. You would think that mandatory parenting classes and therapy would have been a part of the adoption process. But the system only cared for their numbers. Place a child in a home and you can sleep better at night. Never mind the trauma or the child’s mental/emotional needs. It’s almost as if the system is made up of people who have never successfully raised a child. I hope I’ve explained well without going too much into detail. I hope you can understand who and what I was representing. I hope there are others out there who advocate for children, who have integrity and don’t treat children’s lives as a game.

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-

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,