Rare Disease Report

Heartfelt Words from a Special Needs Mom

SEPTEMBER 19, 2017
Karen Royce
After 18 years, I finally had a moment to write some heartfelt words about Trevor, my son who has alternating hemiplegia of childhood (AHC).

I've wanted to write something about being Trevor's mom for a long time, but wasn't sure where to even start. I am ready now to share these words with the hope that they will help people understand what it truly means to have a special needs child.

Like any good story, let’s start at the beginning:

Of being a first time mom.

When your newborn has his first ambulance ride at 1 day old; (Doctors thought that he had a brain bleed when he was first born).

Overwhelming Fear
When I had to stay in the hospital as my child was taken by ambulance to a different hospital for testing.

When nothing was found to be wrong with him at that time, the sense of relief was so wonderful.  

The next two years were a constant roller coaster of doctors appointments, plane rides to the hospital, testing and more testing, spinal taps, tubes and wires placed everywhere. After a year and a half of disorganization and few answers, I went home to Oregon and it was there that we received the proper AHC diagnosis. Until that point, he had been misdiagnosed with seizures of unknown origin and treated with medicine that would affect him for the rest of his life.

You develop a routine that works for you in the moments in which life presents you with challenges. With Trevor, routine was welcome – especially when sudden changes in the routine, like lighting, excitement, temperature changes, etc. caused him to have ‘episodes.’ In these episodes, his body would become paralyzed on one or both sides.

People that stood by you are now gone, and the emotional toll of being a mom with an intensive child is too much for many people to fully understand. They have their own lives to lead.

I learned to cope and live my life through Trevor and his needs. I will do anything for my child and I became his advocate in all aspects of his life.

When you are the parent to a special needs child, statistics indicate that your child will only live 4 or 5 years and with this comes…

I will do anything to keep him alive!

With every seizure, respiratory arrest, medivac, and painful episode, I struggle with not wanting to lose my child, while knowing that one more day means more pain for him.

You are alone most of the day and most of your decisions are based on instinct since doctors do not have the answers. You have very few friends that have held on for the ride of your life.

You spend so many hours, day, minutes of your life in tears not knowing which way to go, to whom to turn, or what the real answer is.

No matter what decision you make, how heartbreaking it is, you will be judged – by fake friends and other people who have no idea what you go through daily. They will judge and talk about you behind your back, and it really hurts.  You try to not let it hurt you, but it does. Even doctors will accuse you of stressing their staff and nurses like you have the choice to change any of this.

You are committed to do whatever it takes to give your child the best life possible. You are his mom and he is your priority. He is your amazing first born child, your little guy, and your son.

No matter what, you will love him forever! You will do everything to surround him with love.

Every minute, every day, every night you pray for a cure for AHC; that somehow your son will be okay. That you will never again hear the nurses say, “we are starting CPR if his heart rate doesn't change” or “we are having trouble ventilating him” or “he is seizing again despite all the meds” or “the next time we may not be able to save him”. You pray you can do this and that you can remain strong. That you are not alone on those worst minutes of your life, that God is listening no matter what. That you can hold on for as long as you get to hold your son.

You are so thankful for the time you have with him, and for each day. You are thankful for that person that took the time to give you a hug, because you needed that more than anything in that moment.

When it comes to asking for help, moms are the worst. My focus is on our child, so if you want to help, just ask. If we need help, we will not ask for it because we are exhausted, overwhelmed and in that moment even asking for help is too much.

My words end here, but there are so many more. Please, take the time, when you see a special needs parent, help him or her if it’s needed. Don't judge. If he or she looks like a hug is needed, then give one. If he or she looks exhausted, it’s probably true.

These parents wanted a child just like anyone else; they didn't ask the child to be special, but in that moment, they wouldn't change a thing.
These children are perfect.

Thank you!
Karen Royce, mom to Trevor with AHC.

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