Finding Strength From the Love of My Son: My Journey with Riley the Warrior

written by Ashley McDowell

AS WITH ALL GOOD STORIES, IT BEGINS & ENDS WITH LOVE


My husband, Preston, and I met when we were in high school.

I was in a long term relationship and he was friends with my boyfriend at the time. Through that friendship he and I became good friends and he would come over and hang out with us often, but eventually our friendship went two different ways. Our groups and interests changed. We would have a random class together here or there, but our strained friendship devolved into a “hey” every once in a while.

Fast forward several years…

And I was hanging out with a friend when we decided to go four wheeling. He and I loaded up, but stopped first to get gas. Lo and behold, Preston McDowell comes pulling in with his friend Jake. I’m sitting in the passenger seat of my friend’s truck and Preston is sitting in the passenger seat of his friend’s truck. He leans over and yells, “Is that Ashley Maphis?” I reply sarcastically with a “yes” and his response was “awe hell.”

I wanted to throat punch him. I was NOT happy to see him.

But the thing about Preston is that EVERYONE loves him. He just has a way. It did not take long for Preston to lay on the charm and boy was it thick. I found myself laughing and carrying on like we used to when we were close friends. We made plans that night to hang out for Cinco de Mayo.

And we have been together every day since!

Ashley and Preston’s engagement photoshoot💕

ON MOTHERHOOD


To be honest, I was always afraid to be a mom. I worried I would never be able to be the mom I needed to be, but I always saw myself as one. When others were making plans to go to college I saw myself at home, taking the kids to sports practice or dance or gymnastics.

I knew I wanted to be a young mom so that I could grow up with my children. That is where I felt comfortable, and this was confirmed over and over again. Whenever the door would close on an idea I thought I was supposed to pursue, it showed me where I was supposed to be.

THE HEARTBREAK & MIRACLE OF CONCEPTION


Conceiving was not a problem for me or my family, however Preston and I did lose our first baby and that was a huge blow.

We had gone in for the six-week ultrasound and the tech had a difficult time finding the sac. As most people know, by six weeks the sac is pretty easy to find. We were ignorant to that and the doctor led us to believe it was still early.

The next day I went to work and experienced pain that I had never experienced before. I knew something was not right. I called Preston and we rushed to the doctor.

It was confirmed that we were miscarrying. It was such a hard, sad time…we were crushed.

Thankfully we had our faith, family and friends and we were able to persevere. Not too long after that, we found out we were pregnant again. This time when we went for the ultrasound we could definitely tell there was a little baby in there!

The relief was overwhelming!

FINALLY, THE CONFIRMATION


I took several pregnancy tests to confirm the second pregnancy, and to be honest, it was very worrisome.

I was terrified that we would miscarry again. We didn’t tell many people this time, we wanted to know for sure that we were going to carry until the 2nd trimester. Those were some HARD weeks.

Our first image of Riley!

THE NAUSEA, THE JOY, & THE TICK OF PREGNANCY


The 1st trimester made me sick as a dog, but I was pretty much sick the entire pregnancy!

Also, if anything could go wrong it did go wrong! I started swelling almost immediately. I had MUMPS, headaches, nausea, some food aversions to wicked cravings… I was just sick!

This time we made it to 20 weeks and found out we were having a precious little boy! My brother spilled the beans (we did a gender reveal and he was the one to tell us) that our sweet Preston Riley McDowell would make his debut at the end of July!

Hey there, hot mama! Pregnancy looks good on you!

But about half way into the pregnancy I was bit by a tick on my face. I went to have it looked at just as a precaution and, because it’s me, I ended up showing positive for Lyme disease! *insert face palm here* I had to go to a specialist to be monitored and had to have regular ultrasounds (which I was not complaining about).

One day, while having the ultrasound, we were told that things weren’t looking exactly like they should be. Riley’s head was too small and his kidneys did not seem to be attached.

Begin panic mode.

WAITING FOR THE LITTLE WARRIOR


We had several ultrasounds and they all said the same thing.

All we could do was wait until our little man made his debut. It got to the point in my pregnancy that I was attending weekly OBGYN appointments and had to be examined to see if Riley was making any progress.

Every time we went it was the same answer. Nope. Still sealed like Fort Knox!

I was beyond ready for him and did everything possible to help him move out quicker aaaaand still nothing. July 16th came and I had a 10am appointment to check how I was doing. They checked my blood pressure several times and the nurse was worried.

The doctor came in quickly after the nurse and, being concerned, he said something I will never forget…he told me I was going to be having an emergency c-section in about an hour.

You see, generally someone was always with me when I went to my appointments. I never (and still don’t like to) do anything by myself. Well, Preston couldn’t get off for this appointment so I was all by myself. When the doctor told me I was going to be having an emergency c-section my heart dropped and the tears fell.

So many things about my pregnancy were not at all what I planned.

I was sick, miserable and was now having the option of a natural birth stripped from me. I was such a basket case that the doctor had to call Preston. I was then able to calm down and notified the rest of our call list.

Preston and I arrived at the hospital at the same time (which is incredible since I was LITERALLY right next door and Preston was working NOT right next door). They ushered me into my room, hooked me up to so many IVs, and prepped me for surgery.

Remember how I said my appointment was at 10:00am? Well, Riley was born at 12:30, 6 lbs 6 oz and 21 inches long! He was B-E-A-UTIFUL! He cried, I cried, and all of our hearts melted!

Mama and baby looking beautiful and happy after the delivery 😍

WAITING FOR ANSWERS


Not long after Riley was born, we noticed things weren’t exactly how they should be with him. He NEVER woke up and NEVER wanted to eat.

He lost about 1 pound of his birth weight and we were rushing him to the pediatrician every day trying to find out what could be wrong. Finally, he was hospitalized and a NG tube was inserted.

Riley with his NG tube.

They thought he was tongue tied and that it was prohibiting him from nursing, so we got his tongue clipped and honestly thought everything would get better! He nursed a little better now and we were so happy… until it stopped.

So not only had my perfect pregnancy been stripped away, my perfect delivery was stripped away and the only thing left I held onto with all my might was nursing my baby. Now that was being stripped away too.

If only that was the worst of it.

A little background: I am the oldest of three kids born to my amazing parents, Roger and Misty. I am 26 and my brother Tyler is 23 and my brother Riley Garrett is 22. Both of my brothers were born with a severe physical and mental disability that the doctors could never diagnose. Riley Garrett went home to be with Jesus before he ever saw his third birthday. My little man is his name-sake, and boy does he live up to it.

One evening my daddy came over to visit little man because we had just gotten out of the hospital. While he was holding him, his tiny body started twitching. The look of panic on my daddy’s face will always be something I can never unsee. My daddy had seen this before and he knew instantly.

However, I thought he was just having the “nervous system twitching” that I had been warned about. My daddy knew better and asked me to think about coming to their house for a few days to let my mom watch him. Of course I agreed and we moved in with my parents for what we thought would be a few days or weeks.

We soon realized my daddy was right.

I can remember my mom hollering out at me that Riley was seizing and that I needed to call the doctor. The doctor got us in to have an EEG and that night it was confirmed that Riley was having seizures. That was the start of the whirlwind that was finding out what was wrong with my son.

Riley already showing his bravery during an EEG

We pursued many doctors and Riley had many tests. (*Sidenote: While my parents were trying to find what was wrong with my brothers they visited Johns Hopkins (JHI) and Kennedy Krieger(KKI) hoping they would get some answers).

Even though my brothers were still undiagnosed we had the idea that KKI and JHI would still have my brother’s records from their visits and we should look into them seeing Riley. I told his neurologist and he got me in contact with a neurologist there. We sent her all the lab work we had completed and all the medical documents Riley had already accumulated (y’all we are talking about a three-inch binder FULL of reports, documents, labs, and hospital stays).

A few days later I got an email that would change our lives…
”Dear Mrs. McDowell, I’m glad we had the chance to chat on the phone yesterday.  I was able to track down the genetic testing that was sent by Dr. Park, and it indeed confirms my suspicion as to Riley’s diagnosis. Riley has a disorder called methylmalonic acidemia and homocysteinemia, cobalamin X type (often abbreviated cblX).”

This email was sent to me May 6, 2015. Just a few months short of Little Man’s 1st birthday.


THE RELIEF OF A DIAGNOSIS


We waited a long time to get a diagnosis, and when we did, it felt like a breath of fresh air. We learned that Dr. Charles Venditti discovered the disease in 2013 and there were only 13 known cases in ALL. THE. WORLD! With Riley being the youngest.

Another incredible thing that came from his diagnosis is that, after 21 long years, my parents would finally know the disease that plagued their children. We have the answers we have waited for for SO long.

But along with his diagnosis we did get some disheartening news. Little man would forever be dependent.

We will most likely never see him walk, hear him talk or be able to have any more children. You see, I am the carrier of the gene. It is an X-chromosome issue. Women have two X-chromosomes while males only have one. So if I have a girl, she would be a carrier and continue to pass the disease further down the family lineage and males would forever be affected.

To say I felt like everything I ever wanted had been taken away from me would be an accurate statement.

I could never have a baby again. Do you know how hard it is knowing you want to have a baby and you can physically have a baby, but have to do everything in your power NOT to have a baby?

I will never get to play catch with my son and hear him whisper “I love you momma.” It’s heartbreaking.

I wallowed in pity for a while and then I put on my big girl panties and decided from that moment on I was going to be the best momma and advocate for my son and that no one would put limitations on him.

THE IMPORTANCE OF A SUPPORT SYSTEM


Through everything we have gone through we have had a support system like no other! Our family and friends have been there for everything: from helping us raise money to pay for his hospital bills, to CONSTANTLY praying for us, to helping us write letters to our local government so Riley can be on Cannabis Oil trial for his seizures, to spending time with us and our many stays in the hospital.

During this time a hashtag #Rileywarriors was created and it has stayed ever since. It is a way for people to keep up with him, learn about him, see how he is doing, how our family is doing, etc. We have T-shirts, a Facebook page, it’s so cool! I love how people love him and how they want others to love him.

He will change your life. I promise.

The Riley warriors

#WALKTOTHEPINK


So, you know how I said that we wouldn’t be anywhere without our family and friends and all they have done for us? Well sweet friends of mine have created #walktothepink.

When we were told we could no longer have any more children biologically, I was crushed. I wanted to have another baby so bad; to carry full term again and be thankful for the experience. Even more so, I wanted a baby girl.

Oh how my heart has ALWAYS longed for a baby girl!

Twice a year I go on a women’s retreat and the last time I attended, God confirmed to multiple people that I would get the desire of my heart: I would have a baby girl AND he told me her name. Elizabeth Joy.

Riley’s already working on being a cool older brother!

While I cannot biologically have a child of my own, I am able to have a donor egg. I can carry a baby! My friends, knowing my desire, have created this hashtag and other fundraisers so that I can have Eliza Joy by In Vitro Fertilization (IVF)!

It might be a ways away, but knowing that it’s possible is so heartwarming!

TO MOTHERS EVERYWHERE


You got this! You can do it! Enjoy the messes, enjoy the constant talking/babbling, enjoy the crawling/walking and getting into everything! It’s a blessing! Momma’s, you are doing a fantastic job! You may not think you are, but you are. So, be kind to yourself; you’ve been through a lot. Do yourself a favor and don’t try to be the Super Mom you have imagined in your head. Your child already sees you as Super Mom!

No stronger bond.

Just lay next to them, play with their hair, look into their eyes. Soak up every moment with them while you can!

THE LOVE & THE JOY FROM RILEY


My Riley is such a joy and it’s hard to have bad moments when I’m with him. He truly is the definition of a warrior, my #rileywarrior.

Please feel free to reach out to us! Look us up on facebook and instagram.

Fall in love with the little boy that made me a momma ❤️

Ashley with her beautiful family.
From left to right: Preston (husband), Riley, Roger (father), Misty (mother), and Tyler (brother).

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