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-

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,