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. 

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Love-

Mommy

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.

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Love, Mommy